You are spot on with my symptoms!!! And yes all the time “it’s a panic attack” no I don’t feel anxious I am getting anxious and panicked because of these episodes!!!!
It was recently explained to me that POTS is a panic attack -- but society has a fundamental misunderstanding of what a panic attack is. An anxiety attack is where you get yourself freaked out -- reasonably or unreasonably. A panic attack is when something happens in your body that your autonomic nervous system doesn't know what to do with, and therefore your ANS freaks out. POTS is genuinely your ANS having a panic attack. And yes, just treating with anxiety meds is pointless. When your blood pressure tanks, and your nervous system can't find where the blood in the body is, the ANS is *supposed* to freak out. I did want to mention, of the three general types of POTS (and yes, I realize they overlap and are not a perfect schema) but in the really rare version that has a genetic component and runs in families -- also you experience a spike in POTS symptoms when you lay down. I cannot tell you how often myself or my daughter have spent ages lying in bed waiting for our heart rates to slow down enough to try to sleep. Both of us also have h-EDS. I was diagnosed with one of the more severe cases of Hyperandrenic POTS on record. My worst ever diastolic was 29. My daughter's lean test didn't quite meet the requirement of 40 point drop, but her tachy was severe enough they put her on beta blockers at 17 yo. In case anyone is reading this, and experiences that spike when they get up AND when they lie down, and is doing everything they are supposed to do and still not getting better, its worth knowing that the hyperandrenic version has a genetic component. There's too much norepinephrine in your bloodstream and not enough norepinephrine doing it's job as a neurotransmitter in your synapses. The gene was identified by Johns Hopkins around a year ago. And this version requires perscriptions to manage. You cannot exercise or nutrition or life-style change your way out of this version of POTS. It's your dna. This also tends to be the more extreme version of POTS. Ppl who pass out when they sit up, Ppl who have a supine pulse of 130 etc. So just as an fyi if anyone is doing everything they should and still not improving its something to consider.
@@Chloeeee2215 beta blocker, alpha agonist, sodium supplement and my dr is trying to get ivbradine approved as well. even with all three of those, I often have 30 - 40 mins of sinus tachy a day when i first get up in the morning. we're trying to find a functional nuerologist willing to take me on.
I have pots and migraines. For years I got that same thing. It's a panic attack! Um, no, I'm sitting here laughing with a freind (in the ER IN MY 20S, WITH MY HEART RATE SPIKING) I'm not panicked. But I don't feel well. Now, in my 40s, I've done so much research, met with many specialties, until I found the ones that would listen. Thanks for sharing!
I have POTS and some sort of neurologic disorder. I’ve had anxiety in the past, and used to have attacks frequently. Anxiety attacks for me were always hyperventilating, lightheaded, shaky, tingling in arms and legs, and crying. My heart rate goes up but I don’t feel it through the hyperventilating and shaking. It can be subtle for awhile as it starts, then gets bad, and when it’s over I’m emotionally tired but feel better. Pots episodes are feeling off balanced, vision blacking out, heart palpitations, fatigue, severe brain fog where I can’t form sentences or process new information and I can barely speak. Then that makes my walking and coordination so much worse. I feel awful and continue to feel awful. Big difference
Smashing the like button so hard right now. I have POTS and generalized anxiety disorder. (No migraines or cranial leak) First of all, sending so much support and love to you for the traumatic experience of doctors acting like you're just a nervous hypochondriac. I have had the same scenario at the ER and a decade later still feel so mentally messed up about it. Personally I do not experience any weird sensations in my ears or sensitivity to small head movement. (My ears do ring if I'm about to faint though.) The only facial symptom I have when I start getting potsy is that my eyes cannot focus on anything. I get that chaotic feeling too!! And the tops of my feet feel numb every morning when I get out of bed! Lol. My compression socks really help. I think because I'm so used to fainting, feeling lightheaded, hot flashes, brain fog etc., I don't seem to experience much anxiety when my POTS is flaring up, unless I'm in public which is the worst thing ever!😭 Can confirm, my panic attacks have always been separate from my POTS, other than my heart rate obviously goes way up and I feel like poo. Your videos have been so therapeutic for me, I feel so seen for the first time. I have tremendous respect for the way you have learned to live with your pseudotumor c. on top of it all and share your experiences on here and I am so glad you have your cranial diagnosis after so long. I am excited to look into POTS Care package because of you! You rock Jen!!❤
Hey! My doctor recommended I raise the head of my bed up by 4 or so inches - something about the angle makes your body make less urine while sleeping so you don't dehydrate so much at night! It seems to help me and might be worth trying (:
Also, as I’m getting to the part of this video where you get emotional, I just want to hug you. This is me too. Every day is a battle. My daughter asks me a lot “are you gonna die from this?” and I tell her I have no intentions of letting this take me down. Thank you for your story ❤️
I HAVE HAD VISUAL ISSUES. . VOMITING MY WHOLE LIFE!! PASSED OUT. . OH. . U R FINE. . UGGGG FAST FORWARD TO . . I AM NOW 63. MI. . LAFB. . PULMONARY EMBOLISM AT ge 40. . All DISMISSED!!! NOW I FELL. . PASSED OUT. . COULD BARELY SEE. . TALKED TO ENT. . SHE HAD SOCIAL WORKER CALL 911. . IN HOSPITAL. . THINGS WERE POPPING AND SNAPPING. . POTS!! NOW TESTING. . I AM SO CAREFULL ABOUT HOW HOT SHOWERS ARE NOT GOOD. . BENT OVER TO PUT TOWEL ON HEAD. . FELL BACK INTO BATHTUB. . HEAD HIT BACKWZLL. . LEGS OVER THE BATHTUB. . TOTALLY DISORIENTING!!! VOMITING.. SHAKING. . AMBULANCE CAME. . ADMITTED. . . THERE WAS ALOT GOING ON!! THANKFUL FOR ALL THE HELP FROM HOSPITAL. SINCE I HAVE HAD THIS MY WHOLE LIFE. . MY HEART ISSUES ARE PEAKING. . ALL IN GODS HANDS. . HOPING TO BE MORE STABLE SOON!! THANK YOU FOR SHARING YOUR EXPERIENCE AND SHARING ❤😢❤
Newly diagnosed here. My first symptom was the tachycardia, which started back in October. It freaked me out but it was manageable and I was still fully functioning. Now, I’ve been in bed more in the last month than I’ve ever been in my life. I’ve had anxiety in the past, even panic attacks. I would take that over what I’m going through now. It’s awful. Yesterday was my daughters 10th birthday and I could barely function due to fatigue and pain. Of course, it takes a toll on my mental health. But I’m trying my best and I won’t give up.
I have POTS, fibromyalgia and hEDS, plus have autism and ADHD. I have digestive issues, tachycardia, weakness, dizziness, nausea, fatigue, coat hanger pain, shortness of breath, tingling, dehydration, leg pain. I was diagnosed with anxiety and my concerns about it being POTS, were initially dismissed. I totally understand not wanting to go to the ER, and, for the same reasons. It took about 7 years to get my diagnosis. Some times, I literally cannot stand without triggering my symptoms. Sitting doesn't even help. I have to lie down.
So glad you mentioned that you can have the same symptoms but a different underlying condition! I have been having POTS-like symptoms for about a decade, but a few years ago I found out that I have a totally different type of dysautonomia which causes 19,000+ premature ventricular contractions of the heart a day. Recently my cardiologist even discovered that they increase on standing up - just like a POTS reaction! That means I get that chaotic, oh-no feeling when I bend down, as well as lightheadedness and wibbly vision, some tingles, temperature fluctuations, and nausea. But what's happening to me instead, it turns out, is that my heartbeat is actually interrupted, not racing! Tl;dr the disclaimer is really valuable. I struggle with weirdly feeling, like... undeserving of my space in the EDS community because I don't actually have POTS, but my symptoms and experience are just as valid, and I love that you gave space for people to feel seen in your description of your POTS experience, even without POTS. :)
Wow. So helpful to learn that even though both of you were experiencing similar symptoms that are too often wrongly attributed to anxiety or panic, yet having a different CAUSE, is highly enlightening. Just shows how tricky this diagnostic process can be. (For those of us seeking a true root cause!) ❤️
As long as you're not a jerk, you're welcome here 😅🥰 I get what you mean about not feeling deserving of the space.. I get that too. Imposter syndrome, but chronic illness style, just for not quite matching. With POTS I'm not "as bad" as other patients I see online (I spike to the 130's, not the 180's), and sometimes because of it I feel like my symptoms don't matter and I shouldn't be speaking at all. And that's silly, because a different HR spike doesn't mean all the other symptoms are better or worse by default 🤷🏼♀️ Thanks for sharing your story, so freaking important to get this info out there. Love and hugs!
@@MommingwithMigraine when you mention your heart rate spikes to 130s not to 180s I find myself wondering what your normal HR is? What is a normal heart rate? I need to talk to Google for a minute. (I'm also sleep deprived today, but my normal is barely in the game at 49.)
Thank you for being so vulnerable. It truly touched me. I cried with you. I understand and empathize with so much of what you describe. So many of my symptoms are similar. The sudden change in ability to tolerate external stimuli, hot chest, extreme brain fog, can’t think or make decisions, shaking…feelings that mimic fight or flight. I got POTS overnight & thought I was absolutely dying. I have a skit that I did as well mimicking an experience I had when I went in for my symptoms. I understand how hard it is to talk about. These episodes are so scary in the moment and you dread the next one sometimes. Hang in there and thank you for your bravery & sense of humor as well :-)
I feel you. I’ve also had nights where I wasn’t sure if I was going to wake up in the morning. It’s terrifying when you feel like you’re dying but you don’t know why, and doctors won’t believe you. I’ve had POTS symptoms for the past 20 years. Everyone told me “It’s just because you’re tall and thin, you’re dehydrated, you’re anorexic, you’re vegetarian, you have anxiety and panic attacks, you’re doing this to yourself, you’re faking it”. I just want to be a healthy young adult. I have an appointment in a few days with my doctor to hopefully get my health on the right track. I hope that she not only listens to what I have to say, but actually hears me.
I have been dealing with POTS for a few years now. You do a great job of talking about it and finding ways to lighten the heavy reality. Keep creating :) I have noticed nasal and histamine-like symptoms and many of the other symptoms you mentioned. Yin yoga with deep meditative breathing has given significant improvements.
I love you Dr role play, it's is literally the exact same thing I get if I go to the emergency room. I have iih and am trying to get them to look into pots for me due to change if heart rate changes from laying down to standing ECT, but they always say it's anxiety. I always ask, but don't you have to be anxious to have anxiety and you get the look. Oh and then if I tell the I have a heart rate monitor and then suddenly it's medical anxiety. There is no winning.
DEAD ON, MICHELLE. Can't win. Just like how my nose sniffles are "allergies" that change based on my position...?!! and they initiate these "panic attacks" because I have "convinced myself" that I have a cranial problem... but then 5 years of suffering and turmoil later, lowering my cranial pressure fixed almost all of it. I cannot fathom how dismissive doctors sleep peacefully at night after treating people like this.
@MommingwithMigraine I cannot even explain the relief I experienced just listening to you describe exactly what I’ve been through for 12 years now. Doctors have gaslit me for over a decade, making me look like the crazy one; so I ended up becoming a doctor myself just so I could sound more convincing. My battle with IIH and POTS has been a constant struggle but what’s more exhausting is having to explain the pain to a bunch of “medical degree holders” who treat you like a delusional person who’s trying to just get attention. Delaying the treatment we desperately need only becoz these doctors have trust issues(malingering is their favourite word!), branding us as “hypochondriacs” comes to show how the medical fraternity has failed us miserably! I’m so glad people like you are here to put out your stories, reassuring we’re not alone.
Thank you so much for this video! I have recently been told I might have POTS after years of going to doctors with no results. I started to convince myself I was a hypochondriac but the symptoms felt so real. I have a lot of inner ear pain, ringing, and sudden “stuffiness” that causes me not to be able to hear. I also will have a lot of mucus, especially that causes pain on the roof of my mouth. I never thought those could be related somehow. Of course I also have the light headedness, fast heart rate, tight chest, tingling feet and hands, a shot of wooziness that goes through my head, stomach problems, brain fog, panic that starts after the symptoms come on, extreme sensitivity to loud noises after an episode starts, etc. I’m going to look into this POTS care team you mentioned and see what else I can learn. This video was extremely helpful. Thank you!
You're welcome!! Oh gosh, so sorry to hear you're not being taken seriously. I believe you, it's not in your head! I'm not dxing you with POTS but no doubt about it, your symptoms are real.
Hey, I have an anxiety condition. I was certain for a long long time that I had ADHD or was on the autism spectrum or had a genetic mutation or a sleep disorder or SOMETHING. I finally got a diagnosis for OCD. Complete shock to me. I don’t wash my hands a million times a day or count stuff or have tics, so I was skeptical. But I took the doctor’s advice anyway and did the outpatient therapy program they suggested. I started in December and finished at the beginning of February. Honestly, I am a completely different person now than I was four months ago. I feel great, both my brain and body. Like, I had all sorts of weird physical symptoms and intense unexplained pain, but once I got my head right (right-er at least), all that stuff went away. I wish you the best.
This sounds like my story. In 2021, I started having all these crazy symptoms, and like you said, the symptoms cause the anxiety in our case, not the other way around. It took me 2 years to get a diagnosis. There are still times when I question if it really is POTS or something else. I get so many of the same things, but sometimes, I dont even have a trigger. I will be sitting there, then suddenly, I feel like I can't think, I get irritable because it feels confusing and sounds are just so loud. I used to get a lot of weird face stuff, but not so much now. I think the altitude of Colorado just didn't work for me because that is when it was at its worst. I'm in AZ now, so I don't feel awful everyday.
Your videos are amazing. You are so amazing for sharing a deeply personal part of your life in the hopes of connecting with others who don't feel heard. I have not been diagnosed with anything due to insurance always changing and dismissive Drs. My episodes consist of: Can be sitting or standing: Heart palpitations out of nowhere that start with heart feeling a bit like slowing then banging in my chest for a few beats (feeling like it's trying to catch up). CAN NOT look straight up. Will definitely pass out. If I have to look up I have to angle my neck and kinda look up OR tilt at waist and keep neck from tilting too much. Cannot stand still or feet go numb and start getting the "black out" sensation of hearing getting "fuzzy" and vision getting dark from around the edges, so I tend to march or just move feet side to side when in a line or something. Most times I have completely blacked out I had NO idea it even happened and woke up after husband called 911 or woke up on the floor :( Laying down: Heart palpitations still, Skin feels overly sensitive like I gotta keep moving around. Even laying down, have to make sure my neck is not in an UP position Every time I have an episode and a medical professional they just say, "Oh, you were dehydrated. See how you feel better after laying down with an IV. That's all it is."
You are an inspiration to us all. I am 1 year into this and feel like I’m at rock bottom. But you have reminded me that we can live with this. I just need to figure out the right meds so that I can keep on living life. Thank you.
I have POTS secondary to hEDS and yeah that sounds like it. Usually comes on after a big meal or if I stand up too quick or if the weather is warm and I been standing up for too long. The heart start racing, my vision gets staticky, my feet feel like lead, I need to sit down otherwise I feel i'm going to fall, I start sweating buckets, I get clammy but I feel hot, my nose starts dripping and I start salivating excessively, I feel like my throat is closing, I feel like i'm lacking air, I get nausea, vomiting soon comes after and then I start to shake, my hands and face gets tingly and I get incredibly thirsty.
I have been dismissed countless times for having anxiety. I am 32 and I was told i had inappropiate sinus tachycardia and to get my stress under control. Symptoms i have had lately are hot flashes up the left six of my neck, upper back pain, nausea, blurred vision occasionally, increased anxiety, hesdaches, fatigue and palpitations. One doctor mentioned pots;however, i did not trust her call becsuse my symptoms were not consistent, and when I told her about an increase in my anxiety levels, she pffered a prescription for Aleve. I am getting checked to determine if I have POTS. Wish me luck and ty for sharing your journey and struggles. You are very brave :).
This is very nice to listen to. Thank you for posting. I laughed very hard. I have dysautonomia (not POTS) and migraines. The symptoms in your ear sound very migraine-like, i call the ear wooshing a "head rush". It is terrible. Also my sinusses are effected and my nose and eyes start running. My migraine begins in my eyes but eventually my ears become sensitive too, but like you said.... I am hypermobile too due to EDS. Thank you soooooo much for sharing this. Sending you a ton of comfort for those times you weren't really listened too by the medical system. Strength and courage!
Ooh and, certainly... The anxiety is very very linked to the dysautonomia (or maybe pain in general?) and it is so hard to calm your nervous system back down so your brain can realise there is actually nothing too worry about. It makes me so confused and it's hard. Thx again
My 16 year old daughter too. Spent $1000 to rule out her heart is fine. Doc is willing to give her anxiety meds.. daughter and I both agree, no to that at 16 years of age. Christian counseling is next.
POTS has very clearly defined criteria for diagnosis related to posture. In my case it's because my brain fluid is leaking. I am so sick of people blaming anxiety. I urge you to be careful labeling things as anxiety prematurely. It's harmful to the patient, who is clearly suffering if she has something that resembles POTS. Even if it's not something black and white like a leak.
I agree POTS is a real, measurable diagnosis. Not saying everyone with similar symptoms has anxiety. Just pointing out, as a RN and mother of a child suspected of POTS, with no proven heart problems( EKG, Holter monitor, blood labs all normal), sometimes anxiety presents the same symptoms.
@@tolliduininck6259 well as someone that has pots, it does not present with the same symptoms as anxiety. And you being an RN means absolutely nothing because most doctors out there don’t even understand pots.
I ve had episodes where I thought I wouldn't wake up if I went to sleep - One particularly terrifying episode I called my doctor and he told me I was just having a panic attack - this was after knowing I have SVT but he ruled out POTS due to a lack of bloodpressure change on standing ?? Wrong criteria, Doc The next day I had severe light sensitivity and motion sickness, was dizzy, nauseous, and anxious - I couldn't look out the car window at 5 mph without getting sick and spinning Odd thing was - I had a regular heartrate and blood pressure the entire time so far as I could tell I was diagnosed with Mobitz, vagal dysfunction and potentially POTS on top of SVT by my new doctor a few months later - the skipping beats from Mobitz made heart monitor not register the tachycardia and set off the entire episode I know this is hard for you to speak about but I immensely appreciated hearing you speak out and learning I wasn't alone in this!
You are TOO CUTE and the role play was PRICELESS. You seem to have described what my daughter is going through. If she continues to struggle I will share this information with her. Thank you for making this video.
I have POTS, chronic anxiety and panic disorder (caused by the POTS), and I have experienced severe vertigo attacks. The room morphing and moving in directions is so so scary and I still don’t know how to live with POTS yet. I am 17 years old and it’s been a couple years with POTS. It feels like my teen years and life as a child got taken from me. I am devastated and am so scared it will be the root of the rest of my life.
POTS symptoms for me starts with yawning, exhaustion, nervousness. Then dizzy, lightheaded, overstimulated, heart racing, hands and feet numb, shadows and light start swirling together and warping around me, chest hurts, Confused like super confused, legs and sometimes hands turn all kinds of colors, I get pale and “stare off into the void” and finally my body gives out so I can’t move or I pass out. This was validating, thanks Jen. Also, had me DYING with the goop thing. I don’t laugh out loud often and that had me BAHAHAHAHAHA it totally is goop. It will forever be goop in my head. Spoons and goop. Does that mean we have to use spoons to get the goop out?
Love this. I was diagnosed in 2019 after 1 year of symptoms similar to yours including randomly passing out at work. I have underlying RA as well. I also live in Canada where there are not allot of Doc's who treat pots so it really sucked trying to get a diagnosis. Some of my symptoms do differ to yours, I was wondering do you experience Abdominal pain, extreme fatigue, and blurry vision, Balance issues? My "other symptoms" (I say this in quotes because my doctor is always dismissing them) can be so bad that I am in bed for up to a week with my Pots. I also suffer from daily headaches/migraines and a host of other symptoms. The severity of these symptoms change on a daily basis which is the most frustrating part as I seem to have my Heart rate mostly under control using a beta blocker in the morning. I used to get extreme spikes of HR up to 180 bpm, but since the beta blocker (which works for me) I go to 120 or 130 bpm in a pots episode. I found your channel about a year ago and have loved it since then. Keep the videos coming and hope you are having a wonderful day.
14:40 - 14:46 yes, most of the time 18:57 you are strong. I have panic attacks so i could tell the difference between a POTS attack and a panic attack yeah you are so right sometimes it gets to the point where my service dog is doing DPT and i am on the ground lying down and i ask myself, am i ok, will this end and will i wake up when it stops. (i hope some people can relate to me)
I do have anxiety. That isn’t why I almost fainted multiple times on the sales floor. My current official diagnosis is inappropriate sinus tachycardia (heart go zoom for no reason) and vasovagal presyncope episodes. My cardiologist didn’t want to put me on a beta blocker because I was “otherwise healthy” (I’ve been chronically ill since I was a CHILD). My psychiatrist ended up prescribing my beta blocker because the cardiologist gave me the wrong one. I’m still mad about it and I still suspect POTS or something similar.
I don't know if I have pots but I don't have a dr anymore and the last dr I had wouldn't do anything not even blood tests for me but for husband or son they asked and got immediately. I am in Canada and so far have been diagnosed with fibro, chronic fatigue, C-Ptsd, and being crazy or a hypocondriac. it is so frustrating
I have been having a lot of what you describe for 8 years and the y tell me it’s vestibular migraines. But if that’s the case I have 24/7 migraines. I also have lupus and sjogrens just thrown in for fun. Lost my self and life many years back. I now need a cane or walker for my migraines lol go figure. Glad to hear you are doing well and the baby is just precious!
I have had a lot of the symtoms you have described. For me I don't rilly get the exact ear feeling you were talking about. Instead I get what I call a feeling of "liquid sloshing in my head" and my ears will pop a lot if I'm in an "episode" so to speak. I get head aches, migraines, I have passed out etc. For the record currently I am diagnosed with adhd, angzity, POTS. I have previously ben misdignosed with focal epilepsy and am curently looking at further physical and mental dignosies. The reenactment of the doctors in very accurate. I just want a doctor that will test me for anything they think might be a possibility at this point. And another thing I've ben trying to put to words is as you put it "the goop overflowing". Evreyone says that if you lay down than in theory all your pots stuff should go away,or you drink a lot and eat a lot of salt it should simmer. But after a certain point there is nothing I can do about it, the "episode"is happening and I can't stop it. After a certain point their is no return to okay intill the "episode" decides to stop. I've ben trying to explain that to the people around me. Sometimes I rilly can't do anything even if the second I realise I do something about it. And it sucks. I feel that bit about going to sleep and being unsure, I feel it. I dont think I've ben that level, but I've definitely ben worried that when I woke up something would be worse.
It sucks that some doctors use saying it’s just anxiety to minimize or dismiss what you’re going through. Because even if it was “just” anxiety, you would still have needed treatment for that and would need help.
Great video and info. I think I have many symptoms of pots but 2 Dr told me I don't, one said it is just panic attacks. If e stand up and walk slowly around the house my pulse goes up about 20 or more points, i feel weak and shaky, when I sit down heart rate goes down pretty quickly to normal. Have been reading alot about pots but not much encouragement on what to do for it . Frustrating 😡
I haven't been diagnosed with POTS I often get super dizzy and I have to lay down. I passed out late June 2021, I really hurt my foot. After a week I decided to go to emergency, turns out I broke all the most important bones in my foot. I had surgery and now have four screws in my foot. I was getting saline bags into me as quick as they could put it in, they said I was dehydrated and had low blood pressure. I said okay sounds good. Then the nurses kept telling my to relax even though I just woke up. I am on anti-anxiety meds. Anyhoo my blood pressure is low with a heart beat that is sky high. This is all while on various meds. My normal blood pressure is 80 over 55 or to the high end 100 over 65. My heart beat in always high. So this June will be the one year since I will have these symptoms. I now I don't have any pressures that makes me leak. But I always get headaches. I lived with constant or chronic migraines when I was young (middle school years into High school). I did have many tests but they couldn't find any thing so I was put on meds. I do have severe social anxiety, and agoraphobia.
I’m 75 years old and I have had POTS for at least five years. I also have pseudo tumor cerebri for twenty five years. I take Diamox which is a diuretic so it doesn’t matter how much water I drink. I have fainted numerous times and my legs start shaking and then I face plant. There’s so many more symptoms and it’s so debilitating that I have only been out of the house five times in five years
I can totally relate to the brain and body having totally different reactions to situations although I don't have POTS or anything like that. Specifically performing in front of medium sized crowds (big crowds are fine, just a few friends is fine) I am mentally calm but physically something gets triggered. I can feel my blood pressure and heart rate go up and I get supper shaky, especially in my legs to the point that sometimes I'm afraid they'll buckle underneath me. It can be hard to explain that I don't really have stage fright. I love performing and I'm not worried about messing up or what the audience members will think of me, but my body just decides that now is the time for all the adrenaline.
my doctor thinks that i may have pots but half the time instead of my heartrate being out of wack when i think it will be its just constantly feeling dizzy almost to the point of passing out and then even if i sit down it doesn't happen could one spike like i had the other day of like 130 bpm where my normal is around 80. it has had me on my butt all day today and i really hope i can get back to work soon
It's been a hard road and I still haven't been diagnosed with POTs. All my symptoms started during and after having Covid. At first I was told that these symptoms were transient and would go away after 3-6 months but it's been 1 1/2 yrs with no improvement. The closest thing my first cardiologist would agree to is that I have orthostatic hypotension and orthostatic tachycardia (sinus tachycardia) but bc my tilt table test was negative he didn't want to give me dx of POTs although he did admit that the tilt table could've been a false negative since I had been taking midodrine at the time. My poor man's test was positive for POTs which is why he ordered the tilt table but he put on the midodrine for a few months before I was able to get the tile table. I'm seeing a new cardiologist electrophysiologist now and he ordered a 3- or 7- day telemetry to evaluate how frequently I get tachycardic and what occurs when I say I am feeling crappy. Both cardiologists only care about my blood pressure/hypotension. I had to write down all my blood pressure and HRs for the last year to show to them that the tachycardia is a problem. I had to really convince the new cardiologist to focus on my tachycardia instead of my hypotension bc he was like, you look fine to me. In addition to the tachycardia, I get really dizzy w/vertigo sometimes when moving my head only a few inches. Sometimes I get lightheaded and I'm more presyncopal then. I always have palpitations (I say always bc it's really anytime I move around and of course when I change positions). I was dx with migraines which the neurologist gave me some medicine for so they are not as bad. But I do know that when my POTs symptoms are really bad I also get a migraine right after or during it. Of course I also have SOB when all this happens, and blurred vision sometimes that dims. I only lost total vision once and I only lost consciousness once. I can usually tell that I'm about to pass out based on my symptoms and I immediately sit down and if possible lay down. Lately, I have noticed that when I have a hard time waking up because I'm so tired and lethargic, that it's going to be a bad "POTs symptoms" day. As you mentioned Jen, I have spurts where my symptoms worsen when I am physically sick or having a migraine or stressed. The these POTs symptoms episodes can last up to a week or more instead of just for 24-48 hours. I also get really bad brain fog with my episodes to the point where I can't talk and I can't put two sentences together to answer or ask a question. I forget how to drive, lose concentration and focus. When the episodes are really bad, I get panicky and all I want to do is lay down and go to sleep. The thing that bothers me the most is when I start shaking. My legs will shake and go weak and I can't walk straight, my balance is all off and I tend to fall into walls or anything that I can grab to keep me upright. Sometimes, that's the only symptom I have to let me know that an episode is coming. I live in FL so the hot weather really exacerbates my symptoms. Anyways thanks for the videos! They're a big help!
Went to the ER after having pulse in the 90s, hot flash, shortness of breath, and lightheadedness while sitting at my desk at work, then pulse bounced between 106-126 while standing up to tell my coworker I was going home. Of course, my pulse went back into the 80s when I laid down for the EKG. It was back in the 100s when the doc came in. His first question was to ask if I was "going through the change." I told him no and he wanted to know how I knew that. His diagnosis was panic attack. (Also, my blood pressure was 144/106, but that's definitely unrelated to the tachycardia.) Had seen another doc before that and again after that who also asked about anxiety. At least she took it seriously enough to get a heart monitor and to tell me that she suspected POTS along with anxiety. I have a lot of the same symptoms as you, though milder and less often. It's enormously frustrating and infuriating to have to keep telling people I'm not anxious and definitely not having a panic attack. Your POTS videos got me to fight harder for a referral to a neurologist for a POTS evaluation and know I'm not crazy for having these things happen seemingly out of nowhere.
@@TylersTrying I have had panic attacks, and there is an underlying sense of dread, fear, or true panic that doesn't happen when I have an episode that I would describe as being POTS. It's hard to say I'm having a panic attack when I'm not engaging in any activity or anticipating engaging in any activity that would cause any dread, fear, or unease. Standing up, talking to a friend has never ended in a panic attack, but I sure did have all of the symptoms previously described as POTS where I almost passed out and had to lay flat for at least 10-15 minutes to resolve. Not a panic attack. Now, I'm sure there is some component of anxiety or panic attack when a POTS episode begins and there is a sudden loss of control over your body, but it isn't what initiates it.
9:05 It's funny how many of these things that are correct but are never used. Like out-side-in and down-side-up are both exactly the same as inside out and up-side-down, but only the latter is ever used, because the former just seems wrong.
I’ve been recently diagnosed with fibromyalgia, and I’ve had these weird heart palpitations now for about three years and in the heat it gets way worse which I believe to be pots and I’m in the process of getting that diagnosed right now but as far as the swishing sound in the ears, I’ve been getting that in both of my ears now for like three years and it kind of timed with my heartbeatso when your heart starts going 1,000,000 miles an hour you feel it and you hear it. Not a good time.
Sometimes the swooshy heartbeat would keep me up at night! That's a high cranial pressure symptom for me 💜 sometimes during migraines too. Hope you are able to find some relief - I have! I'm not perfect but I'm improving! blessings to you on your health journey. It's a tough battle.
Please answer if u can. Because unfortunately I can’t seem to get in a doctor anytime soon and I’m so scared !!!!!!!! So sometimes my heart rate will be 70-90 laying down. Then my heart rate can get up to 140 when I sit up …. And stand up it can get to 170. But it goes down after I stand and breathe in and out. If I walk around it will go back up but it will go down if I breathe in and out. I keep getting told it’s anxiety but it doesn’t always feel like I’m panicking. Please tell me I this sounds like anxiety or pots ? Another thing it will come for a week or two and go away then come back😭
Is it POTS if you experience symptoms while just sitting down? My heart will race and it feels like what I imagine being about to pass out feels like.. They come at random times. I went through a stress test and 30 day monitor, but the cardiologist doesn't seem to think I have it. i want to trust her and accept this may just be anxiety, but these symptoms are so real.
I have POTS and have been diagnosed with anxiety and panic attacks but this sounds exactly the way I feel. I feel like my anxiety mentally is not an issue. I would really be interested to see/hear more about your tremors. I have tremors and the doctors have just said they are pseudosiezures as they look like a partial or absence seizure but I don't have the brain activity of an actual seizure.
That's exactly what happened to me 🥺 I kept being told it was panic and anxiety, and I kept arguing that I didn't feel anxious. My tremors also look like partial seizures, but no seizure activity (though I've never been hooked up during when a seizure episode actually occurs). There's a video of mine somewhere on my channel, but I can't recall which video. Hope someone else remembers and can comment the link. I didn't get any reassurance that it could happen with POTS until Dr. Driscoll. The audios explained 👌 I truly believe POTS episodes are not typical anxiety attacks.
Anxiety was my first thought when I first started getting it, too - even though I felt completely calm during them, I have had _(very_ occasional) issues with anxiety in the past, so I just wrote it off as that, since I was in a situation where maybe possibly I might get a little tiny bit anxious under very particular certain circumstances; I'd check my heart rate with my pulse ox (that I carried everywhere), and it would be in the 120s, but I knew anxiety can spike it, so I didn't think anything of it. When that tremoring started happening when I was at home, that was one of the first indications that something was definitely wrong with me - I'd wake up and the moment I moved at all, even the slightest little bit, the tremoring would start, and it would usually last anywhere from half an hour to an hour, then go away; usually it was just my hands, sometimes some upper body, but there were a couple times where it was such intense full body tremoring that it felt like the uncontrollable shivering from a high fever (except I wasn't cold). Had to start checking my blood sugar during them (I have no history of blood sugar issues ever, and it was something completely different that had caused the only hypoglycemic episodes I've ever had), just to make sure that wasn't the culprit. It wasn't, so it was another couple months before we really figured out that it was my heart rate that was causing them, when I was wearing my pulse ox one time and noticed that the tremoring was in perfect time with my heart rate, just twice as fast.
I've had this since a little kid. Been told I have anxiety for three decades, yet I have never felt like I'm anxious of anything. I was diagnosed with Scheuermann's kyphosis in high school, and eventually had it surgically corrected. It was a perfect correction and my body looks and feels good. I gained a lot of muscle mass by working out many years. I look great... But these issues you describe still occasionally persist. I've come to believe it's related to my sympathetic nerve trunks. Do you sweat like crazy? I used to avoid certain colors because of how bad I'd be sweating all day. Ironically, I seem to sweat more when I'm cold. I have systemic and diffuse acrocyanosis and Raynaud's across my whole body. Vascular check was normal. It's neurological. I have found the drug Intuniv (guanfacine ER) to help a lot of this. Might be worth checking out, or clonidine. Try to workout as much as possible. It feels uncomfortable, but it's really the only tried/true long range solution I've found. Is it a cure? No. But at least in my case, it's helped. Thanks for the video.
@@skyechambers1968 yes! The docs were testing me for pheochromocytoma! Turns out, I think I just drank a little too much coffee. LOL. stress test, echo, and autonomic testing was all fine.
All I hear from my doctor is that is just an anxiety attack and that I am too young to be having diseases. I was guilt-tripped by my dad to go back to him but he is somehow worse than he was before. My doctor prescribed me anxiety meds that the pharmacy actually rejected to give me because it would interact with my seizure meds. I don't know how he missed that. It's like I have to do the exact opposite of what he says or else I get worse. I started developing these pot like symptoms when I injured my neck. I have to do a search on doctors and see what my specialist doctors are going to recommend and then eventually I'll make the switch. Doctors are just not that good in my area.
Omg...i have hyper pots and also pseudo tumor cebri. Its the worst! The whooshing in my right ear is soo loud at times and lasts weeks sometimes that i feel like im going crazy. So when im having a pots episode and whooshing i panic more just cause not only can i feel my heart racing i can hear it too. My doctors also say its panic attacks and i try to explain to them its not. These episodes happen randomly for no reason and i only start to panic after cause in the moment i always think im actually dying that i start to freak out..but im still here, i always make it through lol its hard explaining this too people cause no one understands.
Same as you for 3 years told it was panick attacks attacks- my symptoms started when i bent down, in fact my husband got me litter pickers in. I dropped anythinh ( which is all the time. I have
I don't know what I have LOL Starting in elementary I'd get these episode, I called them my "white dot episodes' where my vision would start changing and I'd start seeing white dots, like strobe light white, not like TV static white, along the outlines of lines on the floor. Then the dots would start closing in/becoming fully white. I'd pass out. Later episodes I KNEW I was going to pass out but couldn't stop myself. Before passing out, I hear a high pitched ringing, my body feels hot/tingling, etc. It's really hard to explain. Now I know to get seated with my head down or get back in bed before it gets to that point. No one has ever figured it out, nor is anyone really trying. Now that I'm older, with a lot of other issues that aren't completely figured out, I've noticed my BP is SUPER low when it happens, like 70's/40's or lower. So I'm assuming for whatever reason my body doesn't keep my blood pressure up and leads to these episodes.
Hi Jen, have any of your doctors looked into hEDS? I also have POTs and IIH and my overarching diagnosis is hEDS which causes a low blood pressure problem when I stand. From what I've been told by my doctor my POTS and IIH are symptoms/comorbidities of hEDS. Apparently hEDS is actually really common in women but also really underdiagnosed.
Girl this is literally me too thank you so much for talking about it I wish it was more talked about. The facial and limb numbness is applicable to me too so maybe I should bring that up to my doctor lol😭 at least we have extra anxiety pills though in case of emergency… Does anyone else close their nose and pop their ears when you think you’re congested or is it just me
I'm about to try to upload videos again and I hope one of these episodes can be caught on camera and I can send it to my doctors. I'm also going on a trip to Germany soon and that kind of scares me because I don't know if these episodes are going to happen over there, but YES TO THE EAR WOOSHING
I have the weird fluid thing in my face. Turns out I have sluders neuralgia which can cause migraines and does for me and other abnormalities in my nose and sinuses that actually cause the fluid to move and causes ear pressure. I saw an ENT who diagnosed me, he didn't think it was sinus related until he saw the CT scan of my sinuses. Originally, he just though it was sluders neurelgia. I also have fainting problems from all my sinus/nose issues. I don't fit the typical symptoms of sinus issues. I've been told it's anxiety by an ER dr but the ENT said it was all related to my sinus issues.
I shook my head really fast the other day reenacting something funny and clear liquid literally just quickly poured out of my nose like a faucet. Was that CSF? 👀 has that always been csf?
I have all of these symptoms . And I’ve had 4 doctors tell me I have sever panic disorder . ITS BULLCRAP. But they just re ignorant . I try to give them grace .
This is very interesting. A lot of it seems very familiar to me. I’ve sat with doctors being told I just have anxiety, but does anxiety make half your face numb? I discussed the possibility of Fibromyalgia because my dad has it, and his mom, but that was dismissed. I *do* suffer from very low blood pressure and dizzy spells when I stand, have a history of fainting and once at work passed out twitching after a night of moving around boxes under tables and standing up repeatedly. Also the feeling of fluid in my left ear to the point of not being able to lie down on the right because it feels like it’s pressing on my eardrum, the confusion…
I have orthostatic hypotension (low blood pressure) some days, too. Gosh, I hope you are able to get a diagnosis and start your journey to feeling a little better!!
A bit odd - have you had that ear checked out? Damage to the inner ear can cause some odd things - maybe worth checking? If nothing else it could be exacerbating the other symptoms
@@danielled8665 I want to explain I wasn't being dismissive - I was thinking of how much worse my problems can be when I have and infection or problems from my messed up ear drum - I hope you finally get answers soon
So my POTS episodes are identical to how you described yours except when they last a where I have a thing similar to your twitch thing. Which I describe as having an adrenaline release in my muscles. It doesn't make me twitch but I get the urge to and I feel better if I let my body shiver or twitch a bit to use up that sensation of nervous energy. But like you said I don't have any mental reason for feeling nervous it's purely a physical reaction. As far as comorbidities I have POTS, vestibular migraines and Endometriosis (and lactose intolerance but I don't know if that's really what your asking haha)
@@MommingwithMigraine I'm so glad it helped! Your naming of the POTS Episode really helped because I have never known what to call it so just gone with "I spiked (meaning my HR spiked) so now I need to die quietly for the rest of the day haha" and POTS episode is MUCH easier to say and understand so thankyou!
I have alot of pots symptoms have caught and even had tilt test of my heart rate increase 30 bpm from standing also seen decreased of 30 bpm only diagnosis they will give is syncope. Don’t know if my doctor Dosent know what pots is and if I should bring it up
So I am fairly new to this... my first experience I was actually having a "good day" after having been pretty stressed for a few months. This good day i drove down to babysit another little boy and I take my 2 year old son with me, on my way home I stopped at the store while i was checking out I felt what I can only describe at my heart "clenching and letting go". I thought wow that was weird but i didnt really dwell on it and i went and got in my car and started driving. I got maybe a quarter mile down the road and I felt a burning sensation start in the left side of my chest that ran down my left arm and up the left side of my neck and face. I got extremely dizzy, legs felt weird, feet felt numb, my vision was weird, i felt like i had to pee bad & my heart was pounding. I thought for sure i was having a heart attack. I pulled over as soon as I could, called 911. The only thing that kept me going was knowing my baby was in the car with me. I was absolutely terrified. The ambulance showed up and checked me out and everything on the tests came back normal. At this point my symptoms started to calm down other some and my husband was on his way. I thought i was going to go home with him but then it all started happening again! I decided to go to the hospital and all my symptom spiked about 4 times before i got to the er, it lasted for about 2 hours total. When i got to the er they put me in a room in the psyc ward alone for 30 minutes and when the doc finally came in she asked me what happen so i described everything and she said "well you had a panick attack. I dont think we need to do anymore tests." She then acted like i was drug seeking and sent me on my way. I had my mom take me to the er again 2 days later because I did not feel like i had a panick attack, i have anxiety and I had never had a panick attack like that before. My second visit to the er they did an mri of my head and neck, an ekg, an xray of my chest and a blood draw to check my enzymes. Everything looked great. Except the level of anxiety and feeling soooo crappy lasted for a week before it started to calm down. Then my entire family was sick for 2 weeks and then i had another episode 2.5 weeks after the first. Again I went down to babysit and i was driving home, this time i managed to keep my anxiety down so i didnt completely panic and i could feel the artery in the left side of my neck felt engorged and hot to the touch and my face was burning and my legs felt super weird with numb feet. I took a Xanax and it didnt change any of my symptoms after about 40 minutes. I thought maybe i had a heart arrhythmia so i told my primary care provider, she brushed me off and told me there was no reason for her to referr me to a cardiologist and that i needed to check in with a mental health provider. Anyways I went to see my naturopath and was telling her about how i have no energy and when i take a nap with my son when i wake up my heart is pounding so hard every time and when i was trying to shovel snow and make a snowman with my kids i was getting so dizzy to the point of almost blacking out when i would stand up, i would immediatelyhave to sit down. My naturopath thought maybe its POTs. So far shes done one test on me that showed my blood pressure dropping to 79 after laying then standing for 10 minutes. Anyways so here i am doing research on POTs and i found your video. Thanks!
I'm curious to know, do symptoms occur without bending over/ exercise ect? Like can symptoms come on and stay for days or weeks/months without aggravating it too much? Or does it not work like that? Curious as I've had most symptoms but they usually stay once occurring for a decently long time.
Hello, when you have an episode does it ever terrify you feeling like your passing out along with neck stiffness. Feeling like your upper body is suddenly clinching up? Oh yea also your legs get weak and shaky. Very weak and shaky, like you better find a place to land-? Thank you for sharing-
The one sided weakness, numbness, heaviness, tingling coming on along with migraine sounds like my Hemipeligic Migraine. My POTS symptoms are more mild (I don't faint...okay maybe once or twice, but not usually). But the Hemipeligic Migraine (HM) is chronic in me. (Also in my son.) The weakness, heaviness, tingling and sometimes numbness are technically a sensory aura, but with HM it can last past the initial aura time and for hours into and during the migraine. They say it's like having a stroke, over and over again. I met people online who actually become paralyzed on one side for a few hours at a time. I've not experience anything to that extent. My son does have episodes of his affected arm and shoulder shaking and spasming when HM gets bad. He's fallen a few times with it. Not like a POTS episode, but just because he cannot use his right side when the migraine gets bad. In him its not full paralysis. I help him up and he walks with my support to a chair or the couch. He just gets very week on that side and it sometimes starts jerking. (They've not ruled out focal seizures for him, but it only ever happens with this type of migraine. So far there are 3 known genes to cause HM, but it's expected that there are quite a few more than 3. I also have hEDS, MCAS, along with the Hemipeligic Migraine. POTS isn't an official diagnosis for me because it only ever happens during migraine. But I definately have the same low BP and high heart rate with whooshing in my head when I stand up and walk. It always subsides fairly well for me though when I sit down...my heart rate doesn't stay high.
I'm not saying I have pots because it hasn't been diagnosed now for 8 month's but this is exactly how I am. Sometimes I move my head to look at someone and it literally feels like I'm on a boat. I always say to my wife (oh here comes a big wave) I also get the weird noise in my ear but mine is my left I've had this for years but it's now louder and sounds like a whooshie bass drum banging away to my heart beat. Some nights it wakes me up its so loud. The worst bit for me is doctors just don't seem to understand. Your bit about the doctor was exactly the conversation I had with my cardiologist the other day. He is now going to discharge me because its not blocked arteries like they thought it was but some how now it's not that it was me that diagnosed myself with that and sent myself for lots of tests. I've learnt my triggers though and its if I stand too long I start getting chest pains if they continue they get a lot worse and I then start getting dizzy my pulse seems to go higher and higher. The only thing I can do is sit down and stay down. Some days that's me done. I then feel tired and lightheaded and seem like I'm not here. This has been the worst 8 months of my life and now my cardiologist is discharging me I have no idea what to do. I can't work like this as my job is one where I walk all day and never get a chance to sit down for 12 hours and so I'm gonna lose my job because no doctor seems to think its anything other than anxiety. It's not though as you said I was just picking up my shoes. I'm not stressed apart from when they tell me it's stress. And yes this illness make me stressed because its turd feeling like this. I've even had people saying your not ill you don't look ill. Maybe I should walk around with a bandage on my head then they will say oh yeah he is ill bless him. Great video
I think I may have this lately I started feeling like I was having a stroke or heart attack im only 24 my chest would hurt I'd get pain in my arms and legs and my heart would pound my pupils would also fully dilate and I'd hear this weird squealing whooshing sound from my neck I also have been having constant tension headaches where I will feel pops and stabbing pain and also a vertigo like feeling I thought I was going insane and I have PTSD already and major anxiety issues but now 2 month after I've been having these issues I have panic attacks daily and I'm constantly on edge I've been to the hospital twice nothing came up on tests and most everyone around me thinks it's just my anxiety but I panic after I feel the symptoms could someone please help me in seeing if pots is what I have it's the only thing I've seen that sounds close to what Ive been feeling the past few months has been a waking nightmare for me
I also have pots syndrome, I got diagnosed after having my 2nd c-section. I wanted to ask you if your whoosing sounds would be constant or just come at certain times?
I have similar episodes. I have MECFS and probably POTS as well. I believe they are caused by low blood volume. Maybe medication that increases blood volume are helpful. I find saline infusions helpful.
I do not know if it’s anxiety or pots. My symptoms happen often time when i’m at work because i’m there most of the time. I’ll be sitting at my desk and out of nowhere and my heart starts racing. then comes the foggy head. then my hands start sweating. typing words on my keyboard start getting jumbled up. i also in the past few months started getting migraines. I’m moments like these i’ll get chest pain. I also in the last few months started getting heart burn/acid reflux and gi issues and it all started happening around the same time. don’t even get me started on being fatigued. all the time. i drink my daily coffee and it does absolutely nothing! i’m 21 years old and i do not feel like i should be this tired all the time?? i got to bed at 8:30pm and wake up at 6:30am. Doctor says it’s anxiety. maybe it is but what is it’s not????
You're welcome! Salt can help with increasing blood pressure, so it helps with minimizing episodes like this one. However, too much salt is bad for your heart and vessels! So, while it does work in the SHORT term for acute symptom management, in my opinion, in the LONG term, it's better to address the source of your symptoms instead, and avoid any damage that could be done with the salt loading.
@@MommingwithMigraine thanks I have SpinaBifida (questions welcome) wich comes with its own set of issues. One being Atmospheric headaches/migraines. Starting to train my SD to allert me to them so I can take my oils sooner to hopefully get aheadof them alittle. If that makes since.
@@MommingwithMigraine The interesting thing is that I've got (according to the testing report) mildly hypovolemic POTS because the saline significantly lowered my HR (and what I got of it that day was the single most effective thing that's ever happened for lowering my HR - nothing else has even come close to the same effect), but my BP is actually spiked if I don't get enough salt and fluids, yet if I bend over with my head below my shoulders for a while then stand back up straight (especially if it's hot out, but still can happen anywhere at any time; I'm often in that position when cleaning out my horse's feet before and after riding, which is where I started noticing it first, so I had to start making a conscious effort to keep my head above my shoulders), regardless of being hydrated or not, it will plummet, bringing with it the whole lightheaded presyncope feeling, sometimes to the point of my vision going and intense ringing in my ears (though I've never actually fainted in my life - fallen, yes; fainted, no, even with a HR of over 200) - it's weird. So I still make sure I get a minimum amount of salt every day, but I've got a lot more flexibility in any amount over that... except for liquids - I can't drink more than a small amount of anything that doesn't have at least some salt and real sugar in it (artificial sweeteners, even in miniscule amounts, trigger severe POTS flares for me, the last one of which lasted 3 weeks and I couldn't stand or walk to do anything - thankfully I'd spent several weeks after I got my wheelchair practicing doing everything around the house while sitting in it, so I was still able to manage just fine), otherwise it strips the electrolytes right out of me (hyponatremia's no fun, especially in a hot environment with no access to air conditioning, and even worse if it's humid as well - ask me how I know). We eventually figured out that I had pretty severe mold poisoning (somewhere I had lived previously had been flooded... twice) - severe enough that the first serious issue it caused nearly killed me - and we were pretty sure that that was the cause of my POTS, since the type of mold also indicated I had a genetic mutation (I forget the name of it, and that mutation may be the cause of several other things I'm dealing with as well) - it's been 3 years since we started treating the mold (currently waiting on the results of the 3rd round of retesting - it was gone, then something happened over Christmas that indicated it might be back, so a retest was in order), and my POTS has improved to the point of sometimes being almost unnoticeable except for the spiked HR if I push too hard (I avoid flights of stairs and long uphills whenever possible): it's definitely still there, and it likes to remind me of that at least once everyday, but it's nowhere near as severe as it used to be.
Thank you so much for your discription. I have been having all of these symptoms also. Been going back and forth to a heart Dr for afib but starting to wonder if it’s not pots. I also get tingly numb feeling in my face, and what I call the roaring sound in my ears. I say “my ears blow out” and then like every sound I hear sounds almost like I’m dead and watching myself hearing it, know what I mean?
I don’t like calling it spoons. I like calling my POTS good days and bad days is ups and downsies. I have a lot ups and downsies on good days. Bad days are less ups and downs days. I also have a euphoria feeling from time to time. I do have weird head pains too. My right ear also does that and it gets worse when standing. I started having those extreme symptoms with the weakness and jerking and seizures in 2012. Yes. PTSD. Doing your favorite things and your body is out of control.
I really thought my fast heart and passing out In the middle of the street on the way to school every single day was a panic disorder 😩 turns out it was POTS. Sometimes the symptoms can be kind of similar to anxiety, or a panic attack.
I have strong episodes once or twice a month where my adrenaline spikes and my vision is funky and I lose hearing. I get dizzy and really tired. But it’s not always this bad. I can’t work during these episodes so I lose hours at work
I also suffer from chronic migraines, can u do a video on if living with a smoker makes the migraines worse and thank you so much Jen, I love your videos !
Hey Jen, my physical symptoms are still not diagnosed despite a marathon of doctor's and specialist appointments last year, so I'm not going to claim I have POTS. Anyhow, I was wondering whether within the POTS community, the getting dizzy or even fainting from stretching while seated is a thing. I have this increasingly, I'll be sitting at my desk, noticing I'm tense or something, do a short yawn and stretch (remaining seated) and there's an about 50% change I'll feel dizzy potentially to the point where I have intense ear-swooshies and have to put my head down on the desk for a bit. Would love to hear from others, obviously my doctors weren't taking me too seriously so far, especially because I do have mental health issues so I'm being sent back and forth.
I seem to remember something about a heart thing related to yawning and causing dizziness you might search on that direction. I feel like something about a yawn interrupting the heart and causing it to skip? I might be mashing things together or remembering wrong but maybe put those search terms together and see if something pops up.
I'm sorry your docs don't seem to see how this is affecting your life. We had such relief when my daughter was finally, properly diagnosed with POTS at 21 by a neurologist. (I diagnosed her a few years before but what do I know, I'm just the worried mom!) We had pediatricians, cardiologists & then physicians for adults being patronizing, dismissive & perplexed from the age of 8 or 9 years old! I googled & found the *only* neurologist in the state of Missouri who specialized in POTS and he didn't take long to see the obvious. She has a medication, dietary changes & fitness routines and has had a whole new life since! I tell you this so you are encouraged to be persistent. I hope you find your answers too 💝
@@Whateverhasbeenmynameforyears Thanks for your input, I've had my heart checked rather thoroughly and structurally it's fine, also passed a one day tracking of it (of course it was a non-potsy day where even purposefully doing things I know can be trickering for half an hour in the evening didn't trigger any of my symptoms, so I told the doctors that.) But I'll keep my mind open :)
@@luvfunstuff2 Hey there, I'm glad things worked out for your family eventually! I live in Switzerland and... well most doctors here, despite their famed education, haven't heard of POTS, for god's sake, they still regularily tell me I can't be autistic because I'm female and making eye contact... I'll keep looking, and your comment gives me some more hope :)
@@salo6724 Good to hear that at least that is not a concern. Of course it does not show up when you are testing. You just need to be testing all the time and magic fix right?? :) Like when you take the car to the mechanic and it stops making that weird sound.
I’m currently battling with doctors because no one will believe me that it’s not all in my head and the triggers could be anything depending on day, at this point it continues to get worse and is now at the point of impeding my regular daily activities even the most basic of tasks are feeling impossible
If I hadn't watched you suffer medical invalidation (as I have so many other times) with humor I would never have considered talking about these symptoms in conjunction with my migraine symptoms. I feel bolstered even in the fact that I now have to. I did not realize you could experience symptoms like this during a migraine and that they could be seperate, but as someone who has lived with panic attacks for years following a traumatic incident and lived totally recovered from them for even longer, I can tell for sure these symptoms are not consistent with the panic attack thought process for me. Although the physical response is very similar. An emotional response certainly doesn't seem to proceed the physical response. It can get so confusing when you catch yourself mentally responding to the physical anxiety symptoms because they're so chaotic - but I can still reorient myself in a way that is almost impossible to do with a panic attack. Even still, I assumed I was just stuck with a heart rate that's way too high, and that it probably was anxiety - or at least because of my history that's all it could be worked up for.
Ear whooshing yes, get it often but both ears. Don't get the sinus thing though, not during episodes anyway, I do when laying flat after sleeping very frequently.
Can you perhaps help me .My son has Pots with the recent solar flares it is really causing him a lot of problems he has the ear plugs that you suggested and is also taking in more of salt can you offer any suggestions for the solar flare activity.
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If you're BRAND NEW TO POTS, I made a video just for you! 😘 My advice for new POTS patients: ruclips.net/video/cKzYBRORV8w/видео.html
This is hilarious. The role-play was immaculate. If you have pots, you have been through this several times she told not one lie.
You are spot on with my symptoms!!! And yes all the time “it’s a panic attack” no I don’t feel anxious I am getting anxious and panicked because of these episodes!!!!
EXACTLLLYYYYYY oh so many hugs to you
I have pots too
It was recently explained to me that POTS is a panic attack -- but society has a fundamental misunderstanding of what a panic attack is. An anxiety attack is where you get yourself freaked out -- reasonably or unreasonably. A panic attack is when something happens in your body that your autonomic nervous system doesn't know what to do with, and therefore your ANS freaks out. POTS is genuinely your ANS having a panic attack. And yes, just treating with anxiety meds is pointless. When your blood pressure tanks, and your nervous system can't find where the blood in the body is, the ANS is *supposed* to freak out. I did want to mention, of the three general types of POTS (and yes, I realize they overlap and are not a perfect schema) but in the really rare version that has a genetic component and runs in families -- also you experience a spike in POTS symptoms when you lay down. I cannot tell you how often myself or my daughter have spent ages lying in bed waiting for our heart rates to slow down enough to try to sleep. Both of us also have h-EDS. I was diagnosed with one of the more severe cases of Hyperandrenic POTS on record. My worst ever diastolic was 29. My daughter's lean test didn't quite meet the requirement of 40 point drop, but her tachy was severe enough they put her on beta blockers at 17 yo. In case anyone is reading this, and experiences that spike when they get up AND when they lie down, and is doing everything they are supposed to do and still not getting better, its worth knowing that the hyperandrenic version has a genetic component. There's too much norepinephrine in your bloodstream and not enough norepinephrine doing it's job as a neurotransmitter in your synapses. The gene was identified by Johns Hopkins around a year ago. And this version requires perscriptions to manage. You cannot exercise or nutrition or life-style change your way out of this version of POTS. It's your dna. This also tends to be the more extreme version of POTS. Ppl who pass out when they sit up, Ppl who have a supine pulse of 130 etc. So just as an fyi if anyone is doing everything they should and still not improving its something to consider.
What medications are you taking?
@@Chloeeee2215 beta blocker, alpha agonist, sodium supplement and my dr is trying to get ivbradine approved as well. even with all three of those, I often have 30 - 40 mins of sinus tachy a day when i first get up in the morning. we're trying to find a functional nuerologist willing to take me on.
This is the great advise. Thank you x
I have pots and migraines. For years I got that same thing. It's a panic attack! Um, no, I'm sitting here laughing with a freind (in the ER IN MY 20S, WITH MY HEART RATE SPIKING) I'm not panicked. But I don't feel well. Now, in my 40s, I've done so much research, met with many specialties, until I found the ones that would listen. Thanks for sharing!
I have POTS and some sort of neurologic disorder.
I’ve had anxiety in the past, and used to have attacks frequently. Anxiety attacks for me were always hyperventilating, lightheaded, shaky, tingling in arms and legs, and crying. My heart rate goes up but I don’t feel it through the hyperventilating and shaking. It can be subtle for awhile as it starts, then gets bad, and when it’s over I’m emotionally tired but feel better.
Pots episodes are feeling off balanced, vision blacking out, heart palpitations, fatigue, severe brain fog where I can’t form sentences or process new information and I can barely speak. Then that makes my walking and coordination so much worse. I feel awful and continue to feel awful.
Big difference
Smashing the like button so hard right now. I have POTS and generalized anxiety disorder. (No migraines or cranial leak) First of all, sending so much support and love to you for the traumatic experience of doctors acting like you're just a nervous hypochondriac. I have had the same scenario at the ER and a decade later still feel so mentally messed up about it.
Personally I do not experience any weird sensations in my ears or sensitivity to small head movement. (My ears do ring if I'm about to faint though.) The only facial symptom I have when I start getting potsy is that my eyes cannot focus on anything. I get that chaotic feeling too!! And the tops of my feet feel numb every morning when I get out of bed! Lol. My compression socks really help.
I think because I'm so used to fainting, feeling lightheaded, hot flashes, brain fog etc., I don't seem to experience much anxiety when my POTS is flaring up, unless I'm in public which is the worst thing ever!😭 Can confirm, my panic attacks have always been separate from my POTS, other than my heart rate obviously goes way up and I feel like poo.
Your videos have been so therapeutic for me, I feel so seen for the first time. I have tremendous respect for the way you have learned to live with your pseudotumor c. on top of it all and share your experiences on here and I am so glad you have your cranial diagnosis after so long. I am excited to look into POTS Care package because of you! You rock Jen!!❤
Hey! My doctor recommended I raise the head of my bed up by 4 or so inches - something about the angle makes your body make less urine while sleeping so you don't dehydrate so much at night! It seems to help me and might be worth trying (:
Also, as I’m getting to the part of this video where you get emotional, I just want to hug you. This is me too. Every day is a battle. My daughter asks me a lot “are you gonna die from this?” and I tell her I have no intentions of letting this take me down. Thank you for your story ❤️
I HAVE HAD VISUAL ISSUES. . VOMITING MY WHOLE LIFE!! PASSED OUT. . OH. . U R FINE. . UGGGG FAST FORWARD TO . .
I AM NOW 63. MI. . LAFB. . PULMONARY EMBOLISM AT ge 40. . All DISMISSED!!! NOW I FELL. . PASSED OUT. . COULD BARELY SEE. . TALKED TO ENT. . SHE HAD SOCIAL WORKER CALL 911. . IN HOSPITAL. . THINGS WERE POPPING AND SNAPPING. . POTS!! NOW TESTING. . I AM SO CAREFULL ABOUT HOW HOT SHOWERS ARE NOT GOOD. . BENT OVER TO PUT TOWEL ON HEAD. . FELL BACK INTO BATHTUB. . HEAD HIT BACKWZLL. . LEGS OVER THE BATHTUB. . TOTALLY DISORIENTING!!!
VOMITING.. SHAKING. . AMBULANCE CAME. . ADMITTED. . .
THERE WAS ALOT GOING ON!! THANKFUL FOR ALL THE HELP FROM HOSPITAL.
SINCE I HAVE HAD THIS MY WHOLE LIFE. . MY HEART ISSUES ARE PEAKING. . ALL IN GODS HANDS. . HOPING TO BE MORE STABLE SOON!!
THANK YOU FOR SHARING YOUR EXPERIENCE AND SHARING ❤😢❤
Newly diagnosed here. My first symptom was the tachycardia, which started back in October. It freaked me out but it was manageable and I was still fully functioning. Now, I’ve been in bed more in the last month than I’ve ever been in my life. I’ve had anxiety in the past, even panic attacks. I would take that over what I’m going through now. It’s awful. Yesterday was my daughters 10th birthday and I could barely function due to fatigue and pain. Of course, it takes a toll on my mental health. But I’m trying my best and I won’t give up.
I have a vid of tips just for new patients 💜 I'm cheering for you!!!! ruclips.net/video/cKzYBRORV8w/видео.html
I have POTS, fibromyalgia and hEDS, plus have autism and ADHD. I have digestive issues, tachycardia, weakness, dizziness, nausea, fatigue, coat hanger pain, shortness of breath, tingling, dehydration, leg pain.
I was diagnosed with anxiety and my concerns about it being POTS, were initially dismissed. I totally understand not wanting to go to the ER, and, for the same reasons.
It took about 7 years to get my diagnosis. Some times, I literally cannot stand without triggering my symptoms. Sitting doesn't even help. I have to lie down.
How are you
literally have every single symptom you describe my migraines start with sinus pain thank u for this information
So glad you mentioned that you can have the same symptoms but a different underlying condition! I have been having POTS-like symptoms for about a decade, but a few years ago I found out that I have a totally different type of dysautonomia which causes 19,000+ premature ventricular contractions of the heart a day. Recently my cardiologist even discovered that they increase on standing up - just like a POTS reaction! That means I get that chaotic, oh-no feeling when I bend down, as well as lightheadedness and wibbly vision, some tingles, temperature fluctuations, and nausea. But what's happening to me instead, it turns out, is that my heartbeat is actually interrupted, not racing!
Tl;dr the disclaimer is really valuable. I struggle with weirdly feeling, like... undeserving of my space in the EDS community because I don't actually have POTS, but my symptoms and experience are just as valid, and I love that you gave space for people to feel seen in your description of your POTS experience, even without POTS. :)
Wow. So helpful to learn that even though both of you were experiencing similar symptoms that are too often wrongly attributed to anxiety or panic, yet having a different CAUSE, is highly enlightening. Just shows how tricky this diagnostic process can be. (For those of us seeking a true root cause!) ❤️
As long as you're not a jerk, you're welcome here 😅🥰 I get what you mean about not feeling deserving of the space.. I get that too. Imposter syndrome, but chronic illness style, just for not quite matching. With POTS I'm not "as bad" as other patients I see online (I spike to the 130's, not the 180's), and sometimes because of it I feel like my symptoms don't matter and I shouldn't be speaking at all. And that's silly, because a different HR spike doesn't mean all the other symptoms are better or worse by default 🤷🏼♀️ Thanks for sharing your story, so freaking important to get this info out there. Love and hugs!
@@MommingwithMigraine when you mention your heart rate spikes to 130s not to 180s I find myself wondering what your normal HR is? What is a normal heart rate? I need to talk to Google for a minute. (I'm also sleep deprived today, but my normal is barely in the game at 49.)
very helpful to know as my heart races a lot so I can rule that out!!
Thank you for being so vulnerable. It truly touched me. I cried with you.
I understand and empathize with so much of what you describe. So many of my symptoms are similar. The sudden change in ability to tolerate external stimuli, hot chest, extreme brain fog, can’t think or make decisions, shaking…feelings that mimic fight or flight.
I got POTS overnight & thought I was absolutely dying.
I have a skit that I did as well mimicking an experience I had when I went in for my symptoms.
I understand how hard it is to talk about. These episodes are so scary in the moment and you dread the next one sometimes.
Hang in there and thank you for your bravery & sense of humor as well :-)
I feel you. I’ve also had nights where I wasn’t sure if I was going to wake up in the morning. It’s terrifying when you feel like you’re dying but you don’t know why, and doctors won’t believe you. I’ve had POTS symptoms for the past 20 years. Everyone told me “It’s just because you’re tall and thin, you’re dehydrated, you’re anorexic, you’re vegetarian, you have anxiety and panic attacks, you’re doing this to yourself, you’re faking it”. I just want to be a healthy young adult. I have an appointment in a few days with my doctor to hopefully get my health on the right track. I hope that she not only listens to what I have to say, but actually hears me.
How are you
@@marthasisco9678how about you
I have been dealing with POTS for a few years now. You do a great job of talking about it and finding ways to lighten the heavy reality. Keep creating :)
I have noticed nasal and histamine-like symptoms and many of the other symptoms you mentioned. Yin yoga with deep meditative breathing has given significant improvements.
I love you Dr role play, it's is literally the exact same thing I get if I go to the emergency room. I have iih and am trying to get them to look into pots for me due to change if heart rate changes from laying down to standing ECT, but they always say it's anxiety. I always ask, but don't you have to be anxious to have anxiety and you get the look. Oh and then if I tell the I have a heart rate monitor and then suddenly it's medical anxiety. There is no winning.
DEAD ON, MICHELLE. Can't win. Just like how my nose sniffles are "allergies" that change based on my position...?!! and they initiate these "panic attacks" because I have "convinced myself" that I have a cranial problem... but then 5 years of suffering and turmoil later, lowering my cranial pressure fixed almost all of it. I cannot fathom how dismissive doctors sleep peacefully at night after treating people like this.
@MommingwithMigraine I cannot even explain the relief I experienced just listening to you describe exactly what I’ve been through for 12 years now. Doctors have gaslit me for over a decade, making me look like the crazy one; so I ended up becoming a doctor myself just so I could sound more convincing. My battle with IIH and POTS has been a constant struggle but what’s more exhausting is having to explain the pain to a bunch of “medical degree holders” who treat you like a delusional person who’s trying to just get attention. Delaying the treatment we desperately need only becoz these doctors have trust issues(malingering is their favourite word!), branding us as “hypochondriacs” comes to show how the medical fraternity has failed us miserably! I’m so glad people like you are here to put out your stories, reassuring we’re not alone.
I'm so sorry that you can relate 😔 it means a lot to me to hear from you too
Thank you so much for this video! I have recently been told I might have POTS after years of going to doctors with no results. I started to convince myself I was a hypochondriac but the symptoms felt so real.
I have a lot of inner ear pain, ringing, and sudden “stuffiness” that causes me not to be able to hear. I also will have a lot of mucus, especially that causes pain on the roof of my mouth. I never thought those could be related somehow.
Of course I also have the light headedness, fast heart rate, tight chest, tingling feet and hands, a shot of wooziness that goes through my head, stomach problems, brain fog, panic that starts after the symptoms come on, extreme sensitivity to loud noises after an episode starts, etc.
I’m going to look into this POTS care team you mentioned and see what else I can learn. This video was extremely helpful. Thank you!
You're welcome!! Oh gosh, so sorry to hear you're not being taken seriously. I believe you, it's not in your head! I'm not dxing you with POTS but no doubt about it, your symptoms are real.
Hey, I have an anxiety condition. I was certain for a long long time that I had ADHD or was on the autism spectrum or had a genetic mutation or a sleep disorder or SOMETHING. I finally got a diagnosis for OCD. Complete shock to me. I don’t wash my hands a million times a day or count stuff or have tics, so I was skeptical. But I took the doctor’s advice anyway and did the outpatient therapy program they suggested. I started in December and finished at the beginning of February. Honestly, I am a completely different person now than I was four months ago. I feel great, both my brain and body. Like, I had all sorts of weird physical symptoms and intense unexplained pain, but once I got my head right (right-er at least), all that stuff went away. I wish you the best.
This sounds like my story. In 2021, I started having all these crazy symptoms, and like you said, the symptoms cause the anxiety in our case, not the other way around. It took me 2 years to get a diagnosis. There are still times when I question if it really is POTS or something else. I get so many of the same things, but sometimes, I dont even have a trigger. I will be sitting there, then suddenly, I feel like I can't think, I get irritable because it feels confusing and sounds are just so loud. I used to get a lot of weird face stuff, but not so much now. I think the altitude of Colorado just didn't work for me because that is when it was at its worst. I'm in AZ now, so I don't feel awful everyday.
Your videos are amazing. You are so amazing for sharing a deeply personal part of your life in the hopes of connecting with others who don't feel heard.
I have not been diagnosed with anything due to insurance always changing and dismissive Drs. My episodes consist of:
Can be sitting or standing:
Heart palpitations out of nowhere that start with heart feeling a bit like slowing then banging in my chest for a few beats (feeling like it's trying to catch up). CAN NOT look straight up. Will definitely pass out. If I have to look up I have to angle my neck and kinda look up OR tilt at waist and keep neck from tilting too much. Cannot stand still or feet go numb and start getting the "black out" sensation of hearing getting "fuzzy" and vision getting dark from around the edges, so I tend to march or just move feet side to side when in a line or something. Most times I have completely blacked out I had NO idea it even happened and woke up after husband called 911 or woke up on the floor :(
Laying down:
Heart palpitations still, Skin feels overly sensitive like I gotta keep moving around. Even laying down, have to make sure my neck is not in an UP position
Every time I have an episode and a medical professional they just say, "Oh, you were dehydrated. See how you feel better after laying down with an IV. That's all it is."
You are an inspiration to us all. I am 1 year into this and feel like I’m at rock bottom. But you have reminded me that we can live with this. I just need to figure out the right meds so that I can keep on living life. Thank you.
I have POTS secondary to hEDS and yeah that sounds like it. Usually comes on after a big meal or if I stand up too quick or if the weather is warm and I been standing up for too long. The heart start racing, my vision gets staticky, my feet feel like lead, I need to sit down otherwise I feel i'm going to fall, I start sweating buckets, I get clammy but I feel hot, my nose starts dripping and I start salivating excessively, I feel like my throat is closing, I feel like i'm lacking air, I get nausea, vomiting soon comes after and then I start to shake, my hands and face gets tingly and I get incredibly thirsty.
Thank you for being vulnerable with us again and sharing your experience. It's so educational.. Thank you thank you ❤️ you're so resilient!!
You're so welcome! It's what I love to do!
I have been dismissed countless times for having anxiety. I am 32 and I was told i had inappropiate sinus tachycardia and to get my stress under control. Symptoms i have had lately are hot flashes up the left six of my neck, upper back pain, nausea, blurred vision occasionally, increased anxiety, hesdaches, fatigue and palpitations. One doctor mentioned pots;however, i did not trust her call becsuse my symptoms were not consistent, and when I told her about an increase in my anxiety levels, she pffered a prescription for Aleve. I am getting checked to determine if I have POTS. Wish me luck and ty for sharing your journey and struggles. You are very brave :).
This is very nice to listen to. Thank you for posting. I laughed very hard. I have dysautonomia (not POTS) and migraines. The symptoms in your ear sound very migraine-like, i call the ear wooshing a "head rush". It is terrible. Also my sinusses are effected and my nose and eyes start running. My migraine begins in my eyes but eventually my ears become sensitive too, but like you said.... I am hypermobile too due to EDS. Thank you soooooo much for sharing this. Sending you a ton of comfort for those times you weren't really listened too by the medical system. Strength and courage!
Ooh and, certainly... The anxiety is very very linked to the dysautonomia (or maybe pain in general?) and it is so hard to calm your nervous system back down so your brain can realise there is actually nothing too worry about. It makes me so confused and it's hard. Thx again
POTS really appears as an anxiety disorder. I'm discovering this with my 16 year old daughter, she is a female. I am a RN .
My 16 year old daughter too. Spent $1000 to rule out her heart is fine. Doc is willing to give her anxiety meds.. daughter and I both agree, no to that at 16 years of age. Christian counseling is next.
POTS has very clearly defined criteria for diagnosis related to posture. In my case it's because my brain fluid is leaking. I am so sick of people blaming anxiety.
I urge you to be careful labeling things as anxiety prematurely. It's harmful to the patient, who is clearly suffering if she has something that resembles POTS. Even if it's not something black and white like a leak.
I agree POTS is a real, measurable diagnosis. Not saying everyone with similar symptoms has anxiety. Just pointing out, as a RN and mother of a child suspected of POTS, with no proven heart problems( EKG, Holter monitor, blood labs all normal), sometimes anxiety presents the same symptoms.
@@tolliduininck6259 well as someone that has pots, it does not present with the same symptoms as anxiety. And you being an RN means absolutely nothing because most doctors out there don’t even understand pots.
Ear whooshing literally is you hearing your heartbeat. You probably just have a vein near your eardrum that you could hear blood moving around.
I ve had episodes where I thought I wouldn't wake up if I went to sleep - One particularly terrifying episode I called my doctor and he told me I was just having a panic attack - this was after knowing I have SVT but he ruled out POTS due to a lack of bloodpressure change on standing ?? Wrong criteria, Doc
The next day I had severe light sensitivity and motion sickness, was dizzy, nauseous, and anxious - I couldn't look out the car window at 5 mph without getting sick and spinning
Odd thing was - I had a regular heartrate and blood pressure the entire time so far as I could tell
I was diagnosed with Mobitz, vagal dysfunction and potentially POTS on top of SVT by my new doctor a few months later - the skipping beats from Mobitz made heart monitor not register the tachycardia and set off the entire episode
I know this is hard for you to speak about but I immensely appreciated hearing you speak out and learning I wasn't alone in this!
You are TOO CUTE and the role play was PRICELESS. You seem to have described what my daughter is going through. If she continues to struggle I will share this information with her. Thank you for making this video.
I've talked to 6 different doctors and they all said it's anxiety but I finally got a good doctor that diagnosed me with POTS
I have POTS, chronic anxiety and panic disorder (caused by the POTS), and I have experienced severe vertigo attacks. The room morphing and moving in directions is so so scary and I still don’t know how to live with POTS yet. I am 17 years old and it’s been a couple years with POTS. It feels like my teen years and life as a child got taken from me. I am devastated and am so scared it will be the root of the rest of my life.
Check if you have Ehlers Danlos Syndrome
İ have also the same symtoms.. understand you well
Can you get diagnosed when your blood pressure drops a little on table test @@SoulTarot90
Thanks for sharing your story Jen
POTS symptoms for me starts with yawning, exhaustion, nervousness. Then dizzy, lightheaded, overstimulated, heart racing, hands and feet numb, shadows and light start swirling together and warping around me, chest hurts, Confused like super confused, legs and sometimes hands turn all kinds of colors, I get pale and “stare off into the void” and finally my body gives out so I can’t move or I pass out. This was validating, thanks Jen. Also, had me DYING with the goop thing. I don’t laugh out loud often and that had me BAHAHAHAHAHA it totally is goop. It will forever be goop in my head. Spoons and goop. Does that mean we have to use spoons to get the goop out?
You described everytime I get up. I keep getting gaslighted from my doctor
I also experience that whooshing in my heart. My first doctor dismissed it, but it makes me feel really sick and out of energy when it happens.
Love this. I was diagnosed in 2019 after 1 year of symptoms similar to yours including randomly passing out at work. I have underlying RA as well. I also live in Canada where there are not allot of Doc's who treat pots so it really sucked trying to get a diagnosis. Some of my symptoms do differ to yours, I was wondering do you experience Abdominal pain, extreme fatigue, and blurry vision, Balance issues? My "other symptoms" (I say this in quotes because my doctor is always dismissing them) can be so bad that I am in bed for up to a week with my Pots. I also suffer from daily headaches/migraines and a host of other symptoms. The severity of these symptoms change on a daily basis which is the most frustrating part as I seem to have my Heart rate mostly under control using a beta blocker in the morning. I used to get extreme spikes of HR up to 180 bpm, but since the beta blocker (which works for me) I go to 120 or 130 bpm in a pots episode. I found your channel about a year ago and have loved it since then. Keep the videos coming and hope you are having a wonderful day.
14:40 - 14:46 yes, most of the time
18:57 you are strong.
I have panic attacks so i could tell the difference between a POTS attack and a panic attack
yeah you are so right sometimes it gets to the point where my service dog is doing DPT and i am on the ground lying down and i ask myself, am i ok, will this end and will i wake up when it stops. (i hope some people can relate to me)
I do have anxiety. That isn’t why I almost fainted multiple times on the sales floor. My current official diagnosis is inappropriate sinus tachycardia (heart go zoom for no reason) and vasovagal presyncope episodes. My cardiologist didn’t want to put me on a beta blocker because I was “otherwise healthy” (I’ve been chronically ill since I was a CHILD). My psychiatrist ended up prescribing my beta blocker because the cardiologist gave me the wrong one. I’m still mad about it and I still suspect POTS or something similar.
Do the poor man’s tilt table test you will know
I don't know if I have pots but I don't have a dr anymore and the last dr I had wouldn't do anything not even blood tests for me but for husband or son they asked and got immediately. I am in Canada and so far have been diagnosed with fibro, chronic fatigue, C-Ptsd, and being crazy or a hypocondriac. it is so frustrating
I have been having a lot of what you describe for 8 years and the y tell me it’s vestibular migraines. But if that’s the case I have 24/7 migraines. I also have lupus and sjogrens just thrown in for fun. Lost my self and life many years back. I now need a cane or walker for my migraines lol go figure. Glad to hear you are doing well and the baby is just precious!
Vestibular Migraine is one of the first diagnoses I got!! 24/7. Hope you find your NEW self, who is just as lovable 💜
I have had a lot of the symtoms you have described. For me I don't rilly get the exact ear feeling you were talking about. Instead I get what I call a feeling of "liquid sloshing in my head" and my ears will pop a lot if I'm in an "episode" so to speak. I get head aches, migraines, I have passed out etc. For the record currently I am diagnosed with adhd, angzity, POTS. I have previously ben misdignosed with focal epilepsy and am curently looking at further physical and mental dignosies. The reenactment of the doctors in very accurate. I just want a doctor that will test me for anything they think might be a possibility at this point. And another thing I've ben trying to put to words is as you put it "the goop overflowing". Evreyone says that if you lay down than in theory all your pots stuff should go away,or you drink a lot and eat a lot of salt it should simmer. But after a certain point there is nothing I can do about it, the "episode"is happening and I can't stop it. After a certain point their is no return to okay intill the "episode" decides to stop. I've ben trying to explain that to the people around me. Sometimes I rilly can't do anything even if the second I realise I do something about it. And it sucks. I feel that bit about going to sleep and being unsure, I feel it. I dont think I've ben that level, but I've definitely ben worried that when I woke up something would be worse.
1000000% true at a certain point there's nothing more you can do!! Laying down can't fix everything. I'm sorry you're going through this too 💜
It sucks that some doctors use saying it’s just anxiety to minimize or dismiss what you’re going through. Because even if it was “just” anxiety, you would still have needed treatment for that and would need help.
Great video and info. I think I have many symptoms of pots but 2 Dr told me I don't, one said it is just panic attacks. If e stand up and walk slowly around the house my pulse goes up about 20 or more points, i feel weak and shaky, when I sit down heart rate goes down pretty quickly to normal. Have been reading alot about pots but not much encouragement on what to do for it . Frustrating 😡
I haven't been diagnosed with POTS I often get super dizzy and I have to lay down. I passed out late June 2021, I really hurt my foot. After a week I decided to go to emergency, turns out I broke all the most important bones in my foot. I had surgery and now have four screws in my foot. I was getting saline bags into me as quick as they could put it in, they said I was dehydrated and had low blood pressure. I said okay sounds good. Then the nurses kept telling my to relax even though I just woke up. I am on anti-anxiety meds. Anyhoo my blood pressure is low with a heart beat that is sky high. This is all while on various meds. My normal blood pressure is 80 over 55 or to the high end 100 over 65. My heart beat in always high. So this June will be the one year since I will have these symptoms. I now I don't have any pressures that makes me leak. But I always get headaches. I lived with constant or chronic migraines when I was young (middle school years into High school). I did have many tests but they couldn't find any thing so I was put on meds. I do have severe social anxiety, and agoraphobia.
I’m 75 years old and I have had POTS for at least five years. I also have pseudo tumor cerebri for twenty five years. I take Diamox which is a diuretic so it doesn’t matter how much water I drink. I have fainted numerous times and my legs start shaking and then I face plant. There’s so many more symptoms and it’s so debilitating that I have only been out of the house five times in five years
The ear whoosh yessss. All of the things you mentioned yesssss. And so much more.
Gaaahhh yess but NOOOO
I can totally relate to the brain and body having totally different reactions to situations although I don't have POTS or anything like that. Specifically performing in front of medium sized crowds (big crowds are fine, just a few friends is fine) I am mentally calm but physically something gets triggered. I can feel my blood pressure and heart rate go up and I get supper shaky, especially in my legs to the point that sometimes I'm afraid they'll buckle underneath me. It can be hard to explain that I don't really have stage fright. I love performing and I'm not worried about messing up or what the audience members will think of me, but my body just decides that now is the time for all the adrenaline.
my doctor thinks that i may have pots but half the time instead of my heartrate being out of wack when i think it will be its just constantly feeling dizzy almost to the point of passing out and then even if i sit down it doesn't happen could one spike like i had the other day of like 130 bpm where my normal is around 80. it has had me on my butt all day today and i really hope i can get back to work soon
It's been a hard road and I still haven't been diagnosed with POTs. All my symptoms started during and after having Covid. At first I was told that these symptoms were transient and would go away after 3-6 months but it's been 1 1/2 yrs with no improvement.
The closest thing my first cardiologist would agree to is that I have orthostatic hypotension and orthostatic tachycardia (sinus tachycardia) but bc my tilt table test was negative he didn't want to give me dx of POTs although he did admit that the tilt table could've been a false negative since I had been taking midodrine at the time.
My poor man's test was positive for POTs which is why he ordered the tilt table but he put on the midodrine for a few months before I was able to get the tile table.
I'm seeing a new cardiologist electrophysiologist now and he ordered a 3- or 7- day telemetry to evaluate how frequently I get tachycardic and what occurs when I say I am feeling crappy.
Both cardiologists only care about my blood pressure/hypotension. I had to write down all my blood pressure and HRs for the last year to show to them that the tachycardia is a problem. I had to really convince the new cardiologist to focus on my tachycardia instead of my hypotension bc he was like, you look fine to me.
In addition to the tachycardia, I get really dizzy w/vertigo sometimes when moving my head only a few inches. Sometimes I get lightheaded and I'm more presyncopal then. I always have palpitations (I say always bc it's really anytime I move around and of course when I change positions). I was dx with migraines which the neurologist gave me some medicine for so they are not as bad.
But I do know that when my POTs symptoms are really bad I also get a migraine right after or during it. Of course I also have SOB when all this happens, and blurred vision sometimes that dims. I only lost total vision once and I only lost consciousness once. I can usually tell that I'm about to pass out based on my symptoms and I immediately sit down and if possible lay down.
Lately, I have noticed that when I have a hard time waking up because I'm so tired and lethargic, that it's going to be a bad "POTs symptoms" day.
As you mentioned Jen, I have spurts where my symptoms worsen when I am physically sick or having a migraine or stressed. The these POTs symptoms episodes can last up to a week or more instead of just for 24-48 hours.
I also get really bad brain fog with my episodes to the point where I can't talk and I can't put two sentences together to answer or ask a question. I forget how to drive, lose concentration and focus. When the episodes are really bad, I get panicky and all I want to do is lay down and go to sleep.
The thing that bothers me the most is when I start shaking. My legs will shake and go weak and I can't walk straight, my balance is all off and I tend to fall into walls or anything that I can grab to keep me upright. Sometimes, that's the only symptom I have to let me know that an episode is coming.
I live in FL so the hot weather really exacerbates my symptoms. Anyways thanks for the videos! They're a big help!
Lipedema, adhd, migraines which are new and probably hyper mobile. I also had skin cancer on my eye lid
Went to the ER after having pulse in the 90s, hot flash, shortness of breath, and lightheadedness while sitting at my desk at work, then pulse bounced between 106-126 while standing up to tell my coworker I was going home. Of course, my pulse went back into the 80s when I laid down for the EKG. It was back in the 100s when the doc came in. His first question was to ask if I was "going through the change." I told him no and he wanted to know how I knew that. His diagnosis was panic attack. (Also, my blood pressure was 144/106, but that's definitely unrelated to the tachycardia.) Had seen another doc before that and again after that who also asked about anxiety. At least she took it seriously enough to get a heart monitor and to tell me that she suspected POTS along with anxiety. I have a lot of the same symptoms as you, though milder and less often. It's enormously frustrating and infuriating to have to keep telling people I'm not anxious and definitely not having a panic attack. Your POTS videos got me to fight harder for a referral to a neurologist for a POTS evaluation and know I'm not crazy for having these things happen seemingly out of nowhere.
Curious- how would you describe the differences between what you experienced and what you understand a panic attack to be like?
@@TylersTrying I have had panic attacks, and there is an underlying sense of dread, fear, or true panic that doesn't happen when I have an episode that I would describe as being POTS. It's hard to say I'm having a panic attack when I'm not engaging in any activity or anticipating engaging in any activity that would cause any dread, fear, or unease. Standing up, talking to a friend has never ended in a panic attack, but I sure did have all of the symptoms previously described as POTS where I almost passed out and had to lay flat for at least 10-15 minutes to resolve. Not a panic attack. Now, I'm sure there is some component of anxiety or panic attack when a POTS episode begins and there is a sudden loss of control over your body, but it isn't what initiates it.
9:05 It's funny how many of these things that are correct but are never used. Like out-side-in and down-side-up are both exactly the same as inside out and up-side-down, but only the latter is ever used, because the former just seems wrong.
Out-side-in is a straight up migraine phrase if I've ever heard one 😄
@@MommingwithMigraine I like down-side-up better.
Loved this
I’ve been recently diagnosed with fibromyalgia, and I’ve had these weird heart palpitations now for about three years and in the heat it gets way worse which I believe to be pots and I’m in the process of getting that diagnosed right now but as far as the swishing sound in the ears, I’ve been getting that in both of my ears now for like three years and it kind of timed with my heartbeatso when your heart starts going 1,000,000 miles an hour you feel it and you hear it. Not a good time.
Sometimes the swooshy heartbeat would keep me up at night! That's a high cranial pressure symptom for me 💜 sometimes during migraines too. Hope you are able to find some relief - I have! I'm not perfect but I'm improving! blessings to you on your health journey. It's a tough battle.
@@MommingwithMigraine what’s with the high cranial pressure, I get that a lot it comes and goes all the time no rhyme a reason?
You mention you don’t do salt protocol anymore would you mind sharing? Why you stopped?
Please answer if u can.
Because unfortunately I can’t seem to get in a doctor anytime soon and I’m so scared !!!!!!!!
So sometimes my heart rate will be 70-90 laying down.
Then my heart rate can get up to 140 when I sit up ….
And stand up it can get to 170.
But it goes down after I stand and breathe in and out. If I walk around it will go back up but it will go down if I breathe in and out.
I keep getting told it’s anxiety but it doesn’t always feel like I’m panicking. Please tell me I this sounds like anxiety or pots ?
Another thing it will come for a week or two and go away then come back😭
Is it POTS if you experience symptoms while just sitting down? My heart will race and it feels like what I imagine being about to pass out feels like.. They come at random times.
I went through a stress test and 30 day monitor, but the cardiologist doesn't seem to think I have it. i want to trust her and accept this may just be anxiety, but these symptoms are so real.
I have POTS and have been diagnosed with anxiety and panic attacks but this sounds exactly the way I feel. I feel like my anxiety mentally is not an issue. I would really be interested to see/hear more about your tremors. I have tremors and the doctors have just said they are pseudosiezures as they look like a partial or absence seizure but I don't have the brain activity of an actual seizure.
That's exactly what happened to me 🥺 I kept being told it was panic and anxiety, and I kept arguing that I didn't feel anxious. My tremors also look like partial seizures, but no seizure activity (though I've never been hooked up during when a seizure episode actually occurs). There's a video of mine somewhere on my channel, but I can't recall which video. Hope someone else remembers and can comment the link. I didn't get any reassurance that it could happen with POTS until Dr. Driscoll. The audios explained 👌 I truly believe POTS episodes are not typical anxiety attacks.
Anxiety was my first thought when I first started getting it, too - even though I felt completely calm during them, I have had _(very_ occasional) issues with anxiety in the past, so I just wrote it off as that, since I was in a situation where maybe possibly I might get a little tiny bit anxious under very particular certain circumstances; I'd check my heart rate with my pulse ox (that I carried everywhere), and it would be in the 120s, but I knew anxiety can spike it, so I didn't think anything of it.
When that tremoring started happening when I was at home, that was one of the first indications that something was definitely wrong with me - I'd wake up and the moment I moved at all, even the slightest little bit, the tremoring would start, and it would usually last anywhere from half an hour to an hour, then go away; usually it was just my hands, sometimes some upper body, but there were a couple times where it was such intense full body tremoring that it felt like the uncontrollable shivering from a high fever (except I wasn't cold). Had to start checking my blood sugar during them (I have no history of blood sugar issues ever, and it was something completely different that had caused the only hypoglycemic episodes I've ever had), just to make sure that wasn't the culprit. It wasn't, so it was another couple months before we really figured out that it was my heart rate that was causing them, when I was wearing my pulse ox one time and noticed that the tremoring was in perfect time with my heart rate, just twice as fast.
I've had this since a little kid. Been told I have anxiety for three decades, yet I have never felt like I'm anxious of anything. I was diagnosed with Scheuermann's kyphosis in high school, and eventually had it surgically corrected. It was a perfect correction and my body looks and feels good. I gained a lot of muscle mass by working out many years. I look great... But these issues you describe still occasionally persist. I've come to believe it's related to my sympathetic nerve trunks. Do you sweat like crazy? I used to avoid certain colors because of how bad I'd be sweating all day. Ironically, I seem to sweat more when I'm cold. I have systemic and diffuse acrocyanosis and Raynaud's across my whole body. Vascular check was normal. It's neurological. I have found the drug Intuniv (guanfacine ER) to help a lot of this. Might be worth checking out, or clonidine. Try to workout as much as possible. It feels uncomfortable, but it's really the only tried/true long range solution I've found. Is it a cure? No. But at least in my case, it's helped. Thanks for the video.
The sweating is insane ! Drenched. - 5 temps
@@skyechambers1968 yes! The docs were testing me for pheochromocytoma! Turns out, I think I just drank a little too much coffee. LOL. stress test, echo, and autonomic testing was all fine.
All I hear from my doctor is that is just an anxiety attack and that I am too young to be having diseases. I was guilt-tripped by my dad to go back to him but he is somehow worse than he was before. My doctor prescribed me anxiety meds that the pharmacy actually rejected to give me because it would interact with my seizure meds. I don't know how he missed that. It's like I have to do the exact opposite of what he says or else I get worse. I started developing these pot like symptoms when I injured my neck. I have to do a search on doctors and see what my specialist doctors are going to recommend and then eventually I'll make the switch. Doctors are just not that good in my area.
Omg...i have hyper pots and also pseudo tumor cebri. Its the worst! The whooshing in my right ear is soo loud at times and lasts weeks sometimes that i feel like im going crazy. So when im having a pots episode and whooshing i panic more just cause not only can i feel my heart racing i can hear it too. My doctors also say its panic attacks and i try to explain to them its not. These episodes happen randomly for no reason and i only start to panic after cause in the moment i always think im actually dying that i start to freak out..but im still here, i always make it through lol its hard explaining this too people cause no one understands.
Same as you for 3 years told it was panick attacks attacks- my symptoms started when i bent down, in fact my husband got me litter pickers in. I dropped anythinh ( which is all the time. I have
I don't know what I have LOL Starting in elementary I'd get these episode, I called them my "white dot episodes' where my vision would start changing and I'd start seeing white dots, like strobe light white, not like TV static white, along the outlines of lines on the floor. Then the dots would start closing in/becoming fully white. I'd pass out. Later episodes I KNEW I was going to pass out but couldn't stop myself. Before passing out, I hear a high pitched ringing, my body feels hot/tingling, etc. It's really hard to explain. Now I know to get seated with my head down or get back in bed before it gets to that point. No one has ever figured it out, nor is anyone really trying.
Now that I'm older, with a lot of other issues that aren't completely figured out, I've noticed my BP is SUPER low when it happens, like 70's/40's or lower. So I'm assuming for whatever reason my body doesn't keep my blood pressure up and leads to these episodes.
Hi Jen, have any of your doctors looked into hEDS? I also have POTs and IIH and my overarching diagnosis is hEDS which causes a low blood pressure problem when I stand. From what I've been told by my doctor my POTS and IIH are symptoms/comorbidities of hEDS. Apparently hEDS is actually really common in women but also really underdiagnosed.
Girl this is literally me too thank you so much for talking about it I wish it was more talked about. The facial and limb numbness is applicable to me too so maybe I should bring that up to my doctor lol😭 at least we have extra anxiety pills though in case of emergency… Does anyone else close their nose and pop their ears when you think you’re congested or is it just me
I'm about to try to upload videos again and I hope one of these episodes can be caught on camera and I can send it to my doctors. I'm also going on a trip to Germany soon and that kind of scares me because I don't know if these episodes are going to happen over there, but YES TO THE EAR WOOSHING
I was just diagnosed so scared. This is the worst feeling.
I have the weird fluid thing in my face. Turns out I have sluders neuralgia which can cause migraines and does for me and other abnormalities in my nose and sinuses that actually cause the fluid to move and causes ear pressure. I saw an ENT who diagnosed me, he didn't think it was sinus related until he saw the CT scan of my sinuses. Originally, he just though it was sluders neurelgia. I also have fainting problems from all my sinus/nose issues. I don't fit the typical symptoms of sinus issues. I've been told it's anxiety by an ER dr but the ENT said it was all related to my sinus issues.
story of my life. weird. I get that head shift thing, feels like a glitch, like i glitch over a foot on the smallest head movement.
I shook my head really fast the other day reenacting something funny and clear liquid literally just quickly poured out of my nose like a faucet. Was that CSF? 👀 has that always been csf?
I’m crying with you right now
I have all of these symptoms . And I’ve had 4 doctors tell me I have sever panic disorder . ITS BULLCRAP. But they just re ignorant . I try to give them grace .
This is very interesting. A lot of it seems very familiar to me. I’ve sat with doctors being told I just have anxiety, but does anxiety make half your face numb? I discussed the possibility of Fibromyalgia because my dad has it, and his mom, but that was dismissed.
I *do* suffer from very low blood pressure and dizzy spells when I stand, have a history of fainting and once at work passed out twitching after a night of moving around boxes under tables and standing up repeatedly.
Also the feeling of fluid in my left ear to the point of not being able to lie down on the right because it feels like it’s pressing on my eardrum, the confusion…
I have orthostatic hypotension (low blood pressure) some days, too. Gosh, I hope you are able to get a diagnosis and start your journey to feeling a little better!!
A bit odd - have you had that ear checked out? Damage to the inner ear can cause some odd things - maybe worth checking? If nothing else it could be exacerbating the other symptoms
@@Izamota-q5v I've had my ears looked at plenty, an inner ear problem wouldn't explain most of what I'm dealing with.
@@danielled8665 I want to explain I wasn't being dismissive - I was thinking of how much worse my problems can be when I have and infection or problems from my messed up ear drum - I hope you finally get answers soon
Thank you 🙏🏽
You are so welcome
So my POTS episodes are identical to how you described yours except when they last a where I have a thing similar to your twitch thing. Which I describe as having an adrenaline release in my muscles. It doesn't make me twitch but I get the urge to and I feel better if I let my body shiver or twitch a bit to use up that sensation of nervous energy. But like you said I don't have any mental reason for feeling nervous it's purely a physical reaction.
As far as comorbidities I have POTS, vestibular migraines and Endometriosis (and lactose intolerance but I don't know if that's really what your asking haha)
That's an excellent way to put it. I've experienced that sensation! Thank you for putting it into words for me 💜
@@MommingwithMigraine I'm so glad it helped! Your naming of the POTS Episode really helped because I have never known what to call it so just gone with "I spiked (meaning my HR spiked) so now I need to die quietly for the rest of the day haha" and POTS episode is MUCH easier to say and understand so thankyou!
@@samantha7309 'I need to die quietly the rest of the day" I am so using that!! :)
I have alot of pots symptoms have caught and even had tilt test of my heart rate increase 30 bpm from standing also seen decreased of 30 bpm only diagnosis they will give is syncope. Don’t know if my doctor Dosent know what pots is and if I should bring it up
So I am fairly new to this... my first experience I was actually having a "good day" after having been pretty stressed for a few months. This good day i drove down to babysit another little boy and I take my 2 year old son with me, on my way home I stopped at the store while i was checking out I felt what I can only describe at my heart "clenching and letting go". I thought wow that was weird but i didnt really dwell on it and i went and got in my car and started driving. I got maybe a quarter mile down the road and I felt a burning sensation start in the left side of my chest that ran down my left arm and up the left side of my neck and face. I got extremely dizzy, legs felt weird, feet felt numb, my vision was weird, i felt like i had to pee bad & my heart was pounding. I thought for sure i was having a heart attack. I pulled over as soon as I could, called 911. The only thing that kept me going was knowing my baby was in the car with me. I was absolutely terrified. The ambulance showed up and checked me out and everything on the tests came back normal. At this point my symptoms started to calm down other some and my husband was on his way. I thought i was going to go home with him but then it all started happening again! I decided to go to the hospital and all my symptom spiked about 4 times before i got to the er, it lasted for about 2 hours total. When i got to the er they put me in a room in the psyc ward alone for 30 minutes and when the doc finally came in she asked me what happen so i described everything and she said "well you had a panick attack. I dont think we need to do anymore tests." She then acted like i was drug seeking and sent me on my way. I had my mom take me to the er again 2 days later because I did not feel like i had a panick attack, i have anxiety and I had never had a panick attack like that before. My second visit to the er they did an mri of my head and neck, an ekg, an xray of my chest and a blood draw to check my enzymes. Everything looked great. Except the level of anxiety and feeling soooo crappy lasted for a week before it started to calm down. Then my entire family was sick for 2 weeks and then i had another episode 2.5 weeks after the first. Again I went down to babysit and i was driving home, this time i managed to keep my anxiety down so i didnt completely panic and i could feel the artery in the left side of my neck felt engorged and hot to the touch and my face was burning and my legs felt super weird with numb feet. I took a Xanax and it didnt change any of my symptoms after about 40 minutes. I thought maybe i had a heart arrhythmia so i told my primary care provider, she brushed me off and told me there was no reason for her to referr me to a cardiologist and that i needed to check in with a mental health provider. Anyways I went to see my naturopath and was telling her about how i have no energy and when i take a nap with my son when i wake up my heart is pounding so hard every time and when i was trying to shovel snow and make a snowman with my kids i was getting so dizzy to the point of almost blacking out when i would stand up, i would immediatelyhave to sit down. My naturopath thought maybe its POTs. So far shes done one test on me that showed my blood pressure dropping to 79 after laying then standing for 10 minutes. Anyways so here i am doing research on POTs and i found your video. Thanks!
I have the same thing. I would love to know what we have????
I have hyperadrenergic POTS and ISTS.
I'm curious to know, do symptoms occur without bending over/ exercise ect? Like can symptoms come on and stay for days or weeks/months without aggravating it too much? Or does it not work like that?
Curious as I've had most symptoms but they usually stay once occurring for a decently long time.
Hello, when you have an episode does it ever terrify you feeling like your passing out along with neck stiffness. Feeling like your upper body is suddenly clinching up?
Oh yea also your legs get weak and shaky. Very weak and shaky, like you better find a place to land-?
Thank you for sharing-
The one sided weakness, numbness, heaviness, tingling coming on along with migraine sounds like my Hemipeligic Migraine. My POTS symptoms are more mild (I don't faint...okay maybe once or twice, but not usually). But the Hemipeligic Migraine (HM) is chronic in me. (Also in my son.) The weakness, heaviness, tingling and sometimes numbness are technically a sensory aura, but with HM it can last past the initial aura time and for hours into and during the migraine. They say it's like having a stroke, over and over again. I met people online who actually become paralyzed on one side for a few hours at a time. I've not experience anything to that extent. My son does have episodes of his affected arm and shoulder shaking and spasming when HM gets bad. He's fallen a few times with it. Not like a POTS episode, but just because he cannot use his right side when the migraine gets bad. In him its not full paralysis. I help him up and he walks with my support to a chair or the couch. He just gets very week on that side and it sometimes starts jerking. (They've not ruled out focal seizures for him, but it only ever happens with this type of migraine. So far there are 3 known genes to cause HM, but it's expected that there are quite a few more than 3. I also have hEDS, MCAS, along with the Hemipeligic Migraine. POTS isn't an official diagnosis for me because it only ever happens during migraine. But I definately have the same low BP and high heart rate with whooshing in my head when I stand up and walk. It always subsides fairly well for me though when I sit down...my heart rate doesn't stay high.
I'm not saying I have pots because it hasn't been diagnosed now for 8 month's but this is exactly how I am. Sometimes I move my head to look at someone and it literally feels like I'm on a boat. I always say to my wife (oh here comes a big wave) I also get the weird noise in my ear but mine is my left I've had this for years but it's now louder and sounds like a whooshie bass drum banging away to my heart beat. Some nights it wakes me up its so loud. The worst bit for me is doctors just don't seem to understand. Your bit about the doctor was exactly the conversation I had with my cardiologist the other day. He is now going to discharge me because its not blocked arteries like they thought it was but some how now it's not that it was me that diagnosed myself with that and sent myself for lots of tests. I've learnt my triggers though and its if I stand too long I start getting chest pains if they continue they get a lot worse and I then start getting dizzy my pulse seems to go higher and higher. The only thing I can do is sit down and stay down. Some days that's me done. I then feel tired and lightheaded and seem like I'm not here. This has been the worst 8 months of my life and now my cardiologist is discharging me I have no idea what to do. I can't work like this as my job is one where I walk all day and never get a chance to sit down for 12 hours and so I'm gonna lose my job because no doctor seems to think its anything other than anxiety. It's not though as you said I was just picking up my shoes. I'm not stressed apart from when they tell me it's stress. And yes this illness make me stressed because its turd feeling like this. I've even had people saying your not ill you don't look ill. Maybe I should walk around with a bandage on my head then they will say oh yeah he is ill bless him. Great video
I think I may have this lately I started feeling like I was having a stroke or heart attack im only 24 my chest would hurt I'd get pain in my arms and legs and my heart would pound my pupils would also fully dilate and I'd hear this weird squealing whooshing sound from my neck I also have been having constant tension headaches where I will feel pops and stabbing pain and also a vertigo like feeling I thought I was going insane and I have PTSD already and major anxiety issues but now 2 month after I've been having these issues I have panic attacks daily and I'm constantly on edge I've been to the hospital twice nothing came up on tests and most everyone around me thinks it's just my anxiety but I panic after I feel the symptoms could someone please help me in seeing if pots is what I have it's the only thing I've seen that sounds close to what Ive been feeling the past few months has been a waking nightmare for me
I also have pots syndrome, I got diagnosed after having my 2nd c-section. I wanted to ask you if your whoosing sounds would be constant or just come at certain times?
Near-constant ringing with occasional whoosh 💜
I have similar episodes. I have MECFS and probably POTS as well. I believe they are caused by low blood volume. Maybe medication that increases blood volume are helpful. I find saline infusions helpful.
I do not know if it’s anxiety or pots. My symptoms happen often time when i’m at work because i’m there most of the time. I’ll be sitting at my desk and out of nowhere and my heart starts racing. then comes the foggy head. then my hands start sweating. typing words on my keyboard start getting jumbled up. i also in the past few months started getting migraines. I’m moments like these i’ll get chest pain. I also in the last few months started getting heart burn/acid reflux and gi issues and it all started happening around the same time. don’t even get me started on being fatigued. all the time. i drink my daily coffee and it does absolutely nothing! i’m 21 years old and i do not feel like i should be this tired all the time?? i got to bed at 8:30pm and wake up at 6:30am. Doctor says it’s anxiety. maybe it is but what is it’s not????
Thank you for the information.Im a nerd like that. Why does the salt overload help?
You're welcome! Salt can help with increasing blood pressure, so it helps with minimizing episodes like this one. However, too much salt is bad for your heart and vessels! So, while it does work in the SHORT term for acute symptom management, in my opinion, in the LONG term, it's better to address the source of your symptoms instead, and avoid any damage that could be done with the salt loading.
@@MommingwithMigraine thanks I have SpinaBifida (questions welcome) wich comes with its own set of issues. One being Atmospheric headaches/migraines. Starting to train my SD to allert me to them so I can take my oils sooner to hopefully get aheadof them alittle. If that makes since.
@@MommingwithMigraine The interesting thing is that I've got (according to the testing report) mildly hypovolemic POTS because the saline significantly lowered my HR (and what I got of it that day was the single most effective thing that's ever happened for lowering my HR - nothing else has even come close to the same effect), but my BP is actually spiked if I don't get enough salt and fluids, yet if I bend over with my head below my shoulders for a while then stand back up straight (especially if it's hot out, but still can happen anywhere at any time; I'm often in that position when cleaning out my horse's feet before and after riding, which is where I started noticing it first, so I had to start making a conscious effort to keep my head above my shoulders), regardless of being hydrated or not, it will plummet, bringing with it the whole lightheaded presyncope feeling, sometimes to the point of my vision going and intense ringing in my ears (though I've never actually fainted in my life - fallen, yes; fainted, no, even with a HR of over 200) - it's weird. So I still make sure I get a minimum amount of salt every day, but I've got a lot more flexibility in any amount over that... except for liquids - I can't drink more than a small amount of anything that doesn't have at least some salt and real sugar in it (artificial sweeteners, even in miniscule amounts, trigger severe POTS flares for me, the last one of which lasted 3 weeks and I couldn't stand or walk to do anything - thankfully I'd spent several weeks after I got my wheelchair practicing doing everything around the house while sitting in it, so I was still able to manage just fine), otherwise it strips the electrolytes right out of me (hyponatremia's no fun, especially in a hot environment with no access to air conditioning, and even worse if it's humid as well - ask me how I know).
We eventually figured out that I had pretty severe mold poisoning (somewhere I had lived previously had been flooded... twice) - severe enough that the first serious issue it caused nearly killed me - and we were pretty sure that that was the cause of my POTS, since the type of mold also indicated I had a genetic mutation (I forget the name of it, and that mutation may be the cause of several other things I'm dealing with as well) - it's been 3 years since we started treating the mold (currently waiting on the results of the 3rd round of retesting - it was gone, then something happened over Christmas that indicated it might be back, so a retest was in order), and my POTS has improved to the point of sometimes being almost unnoticeable except for the spiked HR if I push too hard (I avoid flights of stairs and long uphills whenever possible): it's definitely still there, and it likes to remind me of that at least once everyday, but it's nowhere near as severe as it used to be.
Thank you so much for your discription. I have been having all of these symptoms also. Been going back and forth to a heart Dr for afib but starting to wonder if it’s not pots. I also get tingly numb feeling in my face, and what I call the roaring sound in my ears. I say “my ears blow out” and then like every sound I hear sounds almost like I’m dead and watching myself hearing it, know what I mean?
Ugh yes I know what you mean!
I don’t like calling it spoons. I like calling my POTS good days and bad days is ups and downsies. I have a lot ups and downsies on good days. Bad days are less ups and downs days.
I also have a euphoria feeling from time to time. I do have weird head pains too. My right ear also does that and it gets worse when standing. I started having those extreme symptoms with the weakness and jerking and seizures in 2012.
Yes. PTSD. Doing your favorite things and your body is out of control.
Is bradycardia typical for POTS?
I don't know what the correct answer is but subjectively I have had it while lying down
I really thought my fast heart and passing out In the middle of the street on the way to school every single day was a panic disorder 😩 turns out it was POTS. Sometimes the symptoms can be kind of similar to anxiety, or a panic attack.
I have pots and ringing in ears but my brain feels like it’s bleeding or leaking
I have strong episodes once or twice a month where my adrenaline spikes and my vision is funky and I lose hearing. I get dizzy and really tired. But it’s not always this bad. I can’t work during these episodes so I lose hours at work
I also suffer from chronic migraines, can u do a video on if living with a smoker makes the migraines worse and thank you so much Jen, I love your videos !
I can't speak for Jen, but smoke exposure definitely makes mine worse.
It can definitely be a trigger like anything else, but it varies person to person
Hey Jen, my physical symptoms are still not diagnosed despite a marathon of doctor's and specialist appointments last year, so I'm not going to claim I have POTS. Anyhow, I was wondering whether within the POTS community, the getting dizzy or even fainting from stretching while seated is a thing. I have this increasingly, I'll be sitting at my desk, noticing I'm tense or something, do a short yawn and stretch (remaining seated) and there's an about 50% change I'll feel dizzy potentially to the point where I have intense ear-swooshies and have to put my head down on the desk for a bit. Would love to hear from others, obviously my doctors weren't taking me too seriously so far, especially because I do have mental health issues so I'm being sent back and forth.
I seem to remember something about a heart thing related to yawning and causing dizziness you might search on that direction. I feel like something about a yawn interrupting the heart and causing it to skip? I might be mashing things together or remembering wrong but maybe put those search terms together and see if something pops up.
I'm sorry your docs don't seem to see how this is affecting your life. We had such relief when my daughter was finally, properly diagnosed with POTS at 21 by a neurologist. (I diagnosed her a few years before but what do I know, I'm just the worried mom!) We had pediatricians, cardiologists & then physicians for adults being patronizing, dismissive & perplexed from the age of 8 or 9 years old!
I googled & found the *only* neurologist in the state of Missouri who specialized in POTS and he didn't take long to see the obvious. She has a medication, dietary changes & fitness routines and has had a whole new life since! I tell you this so you are encouraged to be persistent. I hope you find your answers too 💝
@@Whateverhasbeenmynameforyears Thanks for your input, I've had my heart checked rather thoroughly and structurally it's fine, also passed a one day tracking of it (of course it was a non-potsy day where even purposefully doing things I know can be trickering for half an hour in the evening didn't trigger any of my symptoms, so I told the doctors that.) But I'll keep my mind open :)
@@luvfunstuff2 Hey there, I'm glad things worked out for your family eventually! I live in Switzerland and... well most doctors here, despite their famed education, haven't heard of POTS, for god's sake, they still regularily tell me I can't be autistic because I'm female and making eye contact... I'll keep looking, and your comment gives me some more hope :)
@@salo6724 Good to hear that at least that is not a concern. Of course it does not show up when you are testing. You just need to be testing all the time and magic fix right?? :) Like when you take the car to the mechanic and it stops making that weird sound.
I’m currently battling with doctors because no one will believe me that it’s not all in my head and the triggers could be anything depending on day, at this point it continues to get worse and is now at the point of impeding my regular daily activities even the most basic of tasks are feeling impossible
I'm sorrrryyyy =( hate hearing when dr's aren't listening!! I hope you figure this out!!
If I hadn't watched you suffer medical invalidation (as I have so many other times) with humor I would never have considered talking about these symptoms in conjunction with my migraine symptoms. I feel bolstered even in the fact that I now have to.
I did not realize you could experience symptoms like this during a migraine and that they could be seperate, but as someone who has lived with panic attacks for years following a traumatic incident and lived totally recovered from them for even longer, I can tell for sure these symptoms are not consistent with the panic attack thought process for me. Although the physical response is very similar. An emotional response certainly doesn't seem to proceed the physical response.
It can get so confusing when you catch yourself mentally responding to the physical anxiety symptoms because they're so chaotic - but I can still reorient myself in a way that is almost impossible to do with a panic attack. Even still, I assumed I was just stuck with a heart rate that's way too high, and that it probably was anxiety - or at least because of my history that's all it could be worked up for.
Ear whooshing yes, get it often but both ears. Don't get the sinus thing though, not during episodes anyway, I do when laying flat after sleeping very frequently.
Can you perhaps help me .My son has Pots with the recent solar flares it is really causing him a lot of problems he has the ear plugs that you suggested and is also taking in more of salt can you offer any suggestions for the solar flare activity.
I'm very sorry, but I'm not familiar with solar flares.
Momming with Migraine Thanks anyway