Neurocardiogenic Syncope: POTS Fainting Caught on Camera & At-Home Tilt Table Test for Dysautonomia!
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- Опубликовано: 19 окт 2024
- POTS Awareness - fainting on camera! I suffer from POTS & orthostatic intolerance which leads to vasovagal syncope. Dysautonomia comes with many orthostatic hypotension symptoms. This video goes over neurocardiogenic syncope, pots, fainting, and how I mitigate symptoms of orthostatic intolerance, plus more! You will see real footage of my POTS episode caught on camera! Neurocardiogenic syncope, or vasovagal syncope, is very disabling and I hope this video of my dysautonomia attack helps with POTS awareness and dysautonomia awareness!
At about 9:15 I do an at-home tilt table test for orthostatic intolerance. The tilt table test is how to be diagnosed with dysautonomia, POTS, orthostatic hypotension. Tilt table testing is recommended for patients with orthostatic intolerance and syncope.
Autonomic disorders are neurological diseases that can affect the cardiovascular system. Syncope, Dysautonomia, and POTs (Postural Orthostatic Tachycardia Syndrome) are the most common forms.
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FAVORITE POTS PRODUCTS (the ones I really use!):
○ Blood Pressure Monitor: amzn.to/3gjXi3t
○ Weighted blanket: amzn.to/2Eq39Hr
○ Compression socks (looser): amzn.to/3j14wv5
○ Compression socks (tighter): amzn.to/3aSZDRV
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I hope you found this video insightful!!
@Russell Fricia Thank you. I do have a doctor for it, but being pregnant my treatment options are limited.
How did your journey with pots start? Did it start slowly and then just progress ?
I did!
@@dackthepro1741 what are you even trying to say, bro?
thank you - very helpful. I have migraine and POTS too. Undiagnosed for 20+ years.
Ok, the Eminem quote got me. Not what I was expecting you to say after fainting twice within a short period of time.🤣
When you have "air hunger" it's important not to hyperventilate. In through the nose, out through the mouth. Fight the need. Love to you from a long-time POTS patient♥️
I have pots and it improve much after pandemy. I have also anxiety panic disorder, that's why I have "air hunger" hiperventilation but really right now I don't know is shortness of breath relayed with anxiety or Pots?? My heart rate is changeable when I standing. Sometimes 130, sometimes 140-150. It is so diffult .. pls help me if you know what need to do
@@leylahasanova480 I have POTS too and also Panic Attacks & Migraine headaches, there’s so many different stories on The Social Media and about 3/4 of the People are giving terrible advice, I was very fortunate when I told my Dr my symptoms he immediately told me I had POTS, I’m on Beta Blockers & it helps some but I’m so sensitive to the medication that I have to be on the lowest dosage so it can’t really help to much, when People say they do Yoga & they exercise I can’t really believe they have POTS, I can’t stand for over 10 minutes without Blacking out & can’t walk at all, Hopefully You’ll find a Good Dr that will help You find the right medication for You, My Prayers are with You 🙏🏼
I only just learned this term its so frustrating when explaining this to people without having a term to use they think its something else
This made me want to cry because I spend so much time trying to explain this to people and it was so comforting to see that I’m not alone. Thank you for sharing these vulnerable moments. There is nothing quite like waking up from passing out and seeing someone looking down at you with crazy concern. 😭
As a POTS patiënt myself, I deeply felt your “phoooo!!” after lying back down from your tilt table test. Nothing like lying down and feeling that calm and clearheadedness washing back over you. Good luck with everything!
Girl as a fellow POTS/NCS sufferer I feel the pain! That feeling before you pass out is the worst. You get flooded with anxiety and panic. Ugh watching you faint broke my heart. 😥 it sucks. Hang in there sweetie!
YES, the panic! Seriously, it's like "no no no no no no no no no" ....and then suddenly waking up. I usually feel a bit better after waking. Sorry you're going through this =( Hope you've found some ways to alleviate your symptoms to minimize your discomfort.
Yup
You are unbelievable, I'm not a sufferer but I am a nurse and your information and your positive attitude is invaluable resource for those who are!
okay this woman is amazing 2 faints in short time frames then wakes up and qoutes eminem love to see shes doesnt let this block out humor .
Thanks for sharing this video! I have a younger sister who has had POTS for several years now. Living away from home it's hard for me to grasp just how much it affects her day to day life. This was extremely eye opening! Thank you for being a true leader and sharing this for people to see!
You are so welcome! POTS can range from totally mild to totally debilitating. It depends on the patient and it depends on the day. As a patient it does get difficult to explain how life-altering it can be because in general people only see you on good days, and you get really good at pretending you feel fine, when in reality, for many of us not an hour goes by without symptoms. It's very sweet of you to be looking into the condition in your spare time. Your little sister is lucky to have a sibling so thoughtful. 💜
You seem to be hyperventilating, you need to slow down your breathing one time when I Blacked Out I went straight backwards, I didn’t know it was coming on, I never know when I’m going to Blackout so I don’t stand very long & I use transport chair & always have my phone with me
I understand POTS better than I did.
It was painful to watch. It's jarring, seeing an apparently healthy young person going through something like that. But it's definitely educational, for those of us who aren't well-versed in the syndrome. You're providing valuable content here.
Thank you so much for this highly informative and BRAVE recording of your struggle with syncope. A 69 year old survivor of a near fatal heart attack last year (requiring 3 stents) I had a truly frightening episode of syncope at work the day before Thanksgiving 2022. I either had food poisoning or a severe allergic reaction to something, causing severe hives over my entire body.
I remember being extremely agitated and panicky and then vaguely thinking how nice it would be to lie flat on the floor. The next thing I remember is waking up on the floor, very confused and wondering why my glasses were broken and my face was bleeding. I was rushed to the hospital and after brain scans, EKG and blood tests I was given a clean bill of health with a diagnosis of syncope.
I still experience vertigo after rapid changes in the position of my head but the feeling is actually quite pleasant and recover within a few seconds.
Thanks again for sharing your experience. You have gained a new subscriber...
I’ve been suffering from neurocardiogenic syncope for the last 17 years and have never seen someone else have an attack and watching this video I felt every second as if I were going through an attack.
Oh my god. This is incredible. I have been to countless doctors appointments cause they thought it was siezures for the tests to come back fine. I never thought to mention that I get dizzy when standing up cause I was always told "you just stood up too fast"
There is SO MUCH this quilt tripping: "You must be doing something wrong if you are not feeling well." Don't listen to that talk or attitude. (Not that easy, when you are not sure what is actually going on with yourself).
I’m here after my tilt table test :) it was fun until I fainted
I did that at home test you talked about just for fun and it showed that I have something going on with my pulse and blood pressure so now I'm waiting for my Dr appointment to make sure everything is OK so thank you I might not have realized if something was wrong without you making this video
Thank you for posting such a vulnerable episode! I just found your channel btw. I have been struggling with this for almost 2 years and my dr thought I was crazy. She sent me to an ENT after I told her I didn't think it was my ears, but no one would listen to me. I have now been off of work since November because it has gotten so bad. I finally seen a Cardiologist today who is sending me for a Tilt table test. Anyways, thank you for sharing!!!
Victoria Baughman: Did she find the cause of your migraines and blackouts?
Thank you for sharing this, especially the actual episode. I've wondered if I have POTS or orthostatic hypotension for a while. Seeing your episode showed me that the things I've experienced really look like POTS or OH. I felt like I was overreacting, but now I feel validated and like I can finally go to my doctors and ask for testing and diagnosis. Thank you so very much. I'm so relieved!
YES! These videos are so validating!!!
This makes me fell so much better! As a fellow POTS patient myself.
Your room is spotless. Rolling into the recovery position is brilliant.
wow... when I was pregnant, I had all these symptoms, especially when standing for long periods of time at work. I'd get dizzy, my heart would race, I'd be gasping for breath like I'd been running, then I'd get tunnel vision or complete blackouts and my knees would buckle. I got tons of blood drawn, and I wore a heart monitor for 48 hours, but nobody ever mentioned POTS or suggested a tilt-table test or anything like that. They always just said it was due to my (minor) anemia or anxiety. Thank you for spreading awareness about this!
Very thankful that I found you, I have suffered with Chronic migraines, virtigo, low blood pressure and other issues for over 20yrs. To this day no answers but many things click with what you have. I will have to talk to my neurologist about some of these similarities. Thank you for being vulnerable and sharing all of this publicly.
You poor girl. Wishing you the very best managing in life. Respect for you holding it together enough to document it.
Thank you so much for sharing this. I have recently been diagnosed with POTS and I’ve been trying to explain to my family, friends and doctors what happens when I have an episode as I can never seem to get a video going in time to catch it. This video was such a help as it’s almost exactly what happens to me, although the shaking is a bit more vigorous. It’s been really helpful to watch. Thank you so much.
The shaking can definitely get much worse, I'm sorry you're going through it! So glad I could help. I totally get what you mean with how fast it can come on. I wasn't expecting to catch this one, it was totally by chance when I was trying to record something else and I just happened to be set up on the floor for the intro.
It is so great you took the time to do this video. My daughter seems to have this, so this was VERY valuable. God bless you and cure you
Can’t thank you enough for sharing such personal & powerful footage to help spread POTs awareness, Jenn! Greatly appreciate your favorite POTs products list too. You are truly the best! 💛
You are so welcome! Happy to help any way I can. I wouldn't have kept my sanity without other people being brave before me, so I'm excited to pay it forward
OMG I feel like I have just watched myself on video. I am being investigated for having POTS and I actually think I have it. My symptoms are so similar to yours. Thank you so much ❤️❤️
You're welcome! I hope you get your answers soon, and more importantly, some methods to relieve your symptoms!
@@MommingwithMigraine thank you so much. I tried your method today where I put my legs up on the couch and it helped.
@@Hannahpandas03 Aww great! that makes me so happy!
The tilt table test was the worst thing I have ever done in my life, it was extremely traumatic for me personally, I totally blacked out and shaking/ convulsions. I just wish more doctors would be more willing to take us patients seriously.
I hated the tilt table test as well! I was so frustrated because the doctor actually told me to breathe normally when they stood me up because she only wanted to record actual symptoms! I told her "This IS normal for when I stand up!"
@@sarahkwast1250 That doctor....pffff....Good that you told him!
I know this is old but I feel your pain it sucks going through severe symptoms and not being believed
I can't imagine living with these issues. Good on you for sharing and educating others, all while seemingly maintaining a very positive outlook.
thank you so much for posting this. 9 friends witnessed my 1st episode. i got about 3-4 different stories as to what happened. others that didn't witness it seen to believe I'm faking it. Just got the diagnosis today. after experiencing the fainting, it is so hard to watch you do it, but very informative.
i get convulsions too but i always thought it was anxiety during episodes
It could be a variety of things, including convulsive syncope. You'll have to check with your doctor to know for sure!
Momming with Migraine can i ask how low your blood pressure was during your first faint? looks like it took it right as you went out
me to
I’ve woken up from a faint before convulsing only once and it was so freakin scary
you don't get convulsions with anxiety. You need to see a doctor.
For the last 2 months I have suspected I have PoTS. My symptoms are literally the exact same. Thank you x
Side note I am seeing a cardiologist but this is definitely something I will be bringing up
I’ve been watching your videos on and off all day today and with each click on another video, your subscriber count just keeps rising! It was fun to refresh the page and think that you hit 8000 subs while I was watching, haha :)) Glad to see the algorithm is favoring educational and well-intentioned content more and more :D
Hi, Momming with Migraines! OM
gosh; I had no idea that anything could warn of an impending fainting spell-so thank you kindly for that!! And, I have never known someone else who experiences this in the same way that I do, although I suspect that our autonomic anomalies may have different causes.
I’m doing the water thing all day long, and very often salt, too. Compression stockings at times, It took some doing, but it took quite a bit of weight gain to get me to a point where the blood pressure stays high enough to keep me from passing all the way out, at least much of the time. (It seems like so much of life revolves around dealing with migraine and passing out, along with related symptoms...). You have workarounds that haven’t occurred to me, and I appreciate your sharing with the rest of us going thru this sort of thing. It would be awesome to pick your brain; I m simply going to have to take in all your videos. Do you have a blog to go with your video series?
I can’t help but wonder if you have sleep issues with all that you’re experiencing.
Thanks kindly! This is very exciting! :)
I just found your channel. I love how informative and open you are. I have separate/individual diagnoses of general hypotension, POTS, and episodes of orthostatic hypotension as comorbidities of genetic and autoimmune issues. Sometimes it’s “nice” to see someone else with a similar normal who isn’t worried about hiding their invisible illness(es). It can be hard to watch, but kind of comforting knowing you aren’t alone. My SD retired earlier (am working on getting another active dog), but he still doesn’t miss a single alert when I’m home with him. I honestly don’t know that I’ve seen many other medical alert dogs for this particular type of disorder, so seeing you with buddy also just kind of helps with that “imposter syndrome” type feeling.
My daughter has been diagnosed with POTS.Your video was very informative. Ps what is the weighted blanket for ?
Thank you 👍🏿
Glad it was helpful! I'm not sure if any scientific studies have concluded anything definitive about the use of weighted blankets, but in my experience it's been extremely helpful to sleep with one on my legs. What I've heard is that the weight can push the blood back up toward the heart if there's pooling or vasodilation in the legs. My pressure goes pretty low when I'm falling asleep (90/50), so usually my heart starts pounding or palpitating to compensate, and then I go into convulsions. If I have the blanket or my husband's legs over my legs, it eases things. I think the gentle constriction to keep blood out of my legs helps my heart do less work to keep my pulse and pressure stay more regular. Less pounding = I can actually sleep.
An extremely common service dog task called "Deep Pressure Therapy," or DPT, does about the same thing, just higher pressure and for a shorter time. I went over this in my POTS Tasks video. DPT does lessen the severity of attacks when my dog alerts to them and I'm able to have him apply pressure before I feel it coming. You can probably find info about this online, then soooort of apply the findings to the blanket. The way I look at it is the weighted blanket allows for this to happen gently over the whole night.
Even for able-bodied people, weighted blankets are used for decreasing anxiety and helping with insomnia because they are basically a heavy cuddle. With bad palpitations or during convulsions I like it over my entire body like a regular blanket because the hug feels so comforting.
Again, not sure what's based on science, so take it all with a grain of salt, but this has been my body's reaction and my personal findings. Hope it helps!
@@MommingwithMigraine Thank you so much for the in depth information. I will definitely read more about it and will probably buy it.You can only try it ..Thank you again and you take care of yourself. Looking forward to more of your videos.
Positive Vibrations to you and yours.
This is exactly what has been happening to my son for months and we are yet to get a proper diagnosis (cardiologist appointment next week) Thank you for this video
Struggling with air hunger a lot! I have convulsions like that during episodes (in the process of a pots diagnosis). I thought I was just crazy, or it was maybe anxiety. I wasnt aware it was connected. so thank you for sharing
I have just discovered your vlogs. Very interesting. You are awesome keep doing these, to educate people like me that had no idea! God bless you!
Oh my gosh thank you so much for this!!! I just happened to stumble upon this video and your channel and now I'm subscribed and will start watching all your videos. I've been battling with daily migraines and fainting spells along with various other issues since getting a series of brain injuries. A major fainting spell that I had during the summer caused me to pass out and smashed my head on a metal sewer grate (I only know what I hit against after being told after the fact). I was out for about 5-10min and then came to with a fireman over me checking on me before I was taken to the er. I have a friend who has POTS and told me I should get checked out for that after I told her of some of my issues. I just have to get a new doctor so I can get someone who cares enough to run these tests since my current one doesn't listen to my complaints of my issues.
Thank you for your bravery and vulnerability!! ❤
Thank you sharing this personal event. You’ve really given me an education about a recurring problem I’m having. But I’m old at 67.
Im glad of these videos. I thought my pots was relatively mild but just recently I started to have what I call "episodes". It starts with a pressure feeling in my abdomen, I then sweat VERY heavily and feel like I cant get a proper breath. My head gets very foggy and I lose the strength in my legs. Its made even harder being male and suffering with it. I get a lot of comments like " oh you have a womans illness."
Those kinds of comments are so unnecessary, I'm sorry people are saying crap like that. It's not a woman's illness, it's just more common in women. Ridiculous. I hope you're able to find some relief from your episodes! It's hard when you know you're going down and there's nothing you can do about it.
@@MommingwithMigraine I get looked at blankly and am then told "just have a balanced diet and drink plenty". Great words of wisdom....
@@david18ireland Sooooooo helpful *rolls eyes*
Thank you so much for sharing this! I am hopeful this will help with getting a proper diagnosis for my husband. Your episode is very similar to the episodes he has begun to have and I wanted to find a video to share with him and his doctor. Thank you!!
The Eminem quote...😂😂😂 this is why i call myself a sitdown comedian.
I really appreciate it 😊 thank you. Hope your channel will grow.
Aw, thank you! It is! 🥰
I am learning so much from your videos. I was recently diagnosed with POTs but have been with symptoms for quite a few years. Syncope for me isn't a regular thing but very random. My presyncope symptoms seem to act the same way each time so i do generally know before I pass out that I am going to but sometimes it happens so quick I have had issues with falling. Thank you for sharing your story with us.
You may want to consider looking into whether or not there are any smart watches that can automatically and/or continuously measure your blood pressure. I have an Apple Watch and it’s actually how I was alerted, completely by accident, that my resting heart rate one day had become over 150BPM. I spent basically that whole day in the ER afterwards. Since then, I’ve used it to keep track of my heart rate throughout the day, including when I have involuntary sleep episodes.
Googling tells me that there’s a Samsung smart watch that has the ability to do blood pressure, but I only did a surface google, not a dive.
Well, judging by the scale going up to 120 bpm, you went off the charts.
I have Long qt syndrome. I get the syncope with shaking. It has been really intense during the summer months. I also have a pacemaker. The dizziness with syncope scares me. My heart went into Vfib before the pacemaker. Glad I found your channel
I am currently waiting for an autonomic test ordered by my neurologist, everything was postponed due to COVID -19. Thank you so much for this video. So informative.
Thank you.
Do you wear a medical alert bracelet as well in addition to having a service dog?
You're so welcome. I hope you get some answers from your testing, how frustrating that it got delayed! I don't wear a medical bracelet. I didn't get potsie until last November, and didn't start fainting until Feb or March... quarantine time. So I haven't been so worried about being out because I haven't been out 😋 There's a plan in place, though. Buddy's new cape (arriving in a few weeks) will have a zipper pouch with emergency info inside, and a bright tag calling attention to the pouch. I'm rarely alone, but if I do get more brave flying solo, I may get a bracelet later.
Ah, I just realised that I need to get a boyfriend!!! 😂😂😂
(And not be single and alone with my cat if I start fainting around.)
i dont have pots but i do have a fainting disoder that is triggered by standing up and back and neck strechs i always end up hyperventlating and convolsing alot when i faint and id never seen anyone else hyperventlate or call it air hunger thank you so much for making my episodes esier to explain to people
Omg I have severe vaso vagel. Thank you so much for sharing!
You're welcome!
Jen, I was diagnosed with Orthostatic Hypotension 3 years ago. My current doc is now thinking POTS (as opposed to OH). I noticed on this video that you wear a wrist BP monitor. Can you share the brand & model and your thoughts on it? Thanks, Greg. PS> Your videos are helpful!
I get this too. There are times when I would stand up and almost immediately fall onto my fiance from what I can now see a possible fainting episode. I've dealt with this since 2011 and have been diagnosed with seizures but this is way more what I'm experiencing. I've questioned for quote some time whether I faint or not. The mini fainting episodes you showed are pretty much exactly what I experience. Most of the time im aware fully (just no movement) or slight blackout. For me it feels like that feeling you get when your in that dream wake state. Your just barely hanging on to reality and your barely able to comprehend what is going on.
So now it makes sense when I feel as if I just ran when in reality I just took a few steps. Whoa!!
" ' You also stop breathing at times with this?! So does my Human Friend! Zeke and I (AriYo) work ourselves to pieces to get Human Friend back to consciousness asap, especially when she has stopped breathing for about a minute or two. ' ''
~ AriYo the APBT Service Dog in Training (June 2, 2024)
Since I was young I suffer from migraine too, I hope you feel better. God bless you. 😟🙏🙏🙏🙏🌲🌲😃🌷🌷
Great video, if somewhat disturbing. Although not diagnosed with a posture related blood pressure problem, as I never complained to my doctor, I often get faint when I rise up off a chair too fast. When I used to visit the library, squatting down then standing back up to see all the books on the shelves always made me feel faint.
The past ten years I have suffered with unpredictable Vasvagal Presyncope. It is so like the attack you showed here. I never faint once lying down but that means I suffer all those horrible symptoms for about 30 minutes solid every time one comes on.
The hot flushing, nausea, dizziness and greying out set in quick. I get myself on the floor fast so I don't hurt myself. My breathing gets deeper and faster just like yours.
What I really hate is the cold blood feeling that starts deep in my neck and feels like it works its way through both arms to my hands, whilst going through my spine and into my head. A tingling and oddly cold feeling despite the massive hot flush I am having, as my vision narrows and colour vanishes. It's awful.
As mine is triggered by the vagus nerve the bowel symptoms are very strong, like nausea, bowel activity and even pooping accidents can occur.
Like you I end up in the recovery position in case I do faint. I seem to suffer vibrations like the shakes too. I cannot move for about an hour and I am fatigued when finished. I lie down the rest of the day so I don't trigger another episode.
Recent bowel problems have triggered up to 10 episodes a day, the worst it has ever been. I even contacted a doctor for extra advice during a bout. I get so worried as I live alone, that makes it quite scary. It is reassuring to see others recover despite how traumatic these episodes are.
You are such a wonder and so inspiring!
(I hope interaction helps with views)
Thanks for this, hope you are well, always. Question, do you see things when you are out? Because I did!
I also have Dysautonomia and Pots. I have hyperadrenergic POTS, so it’s a bit different for me but I do pass out sometimes. Mine is caused by Ehlers-Danlos Syndrome. I just found your channel, so I’m still getting acquainted with your situation, so I’m wondering if you also have EDS?
I have hyperadrenergic POTS and other issues from hypermobile type Ehlers Danlos syndrome. Since it also gives me gastroparesis and chronic constipation, thankfully I can treat both issues with Pyridostigmine. Either Clonidine or Guanfacine before bed further addresses the hyperadrenergic POTS and a few other issues. Hoping your doctors have found treatment options that work well for you.
In another video she mentioned she has hypermobility, so I wouldn't be surprised if she is eventually diagnosed with one of the 13 types of Ehlers Danlos syndrome. My diagnosis was important, since I received it right before my daughter was about to be sent to inpatient psychiatric care. My EDS diagnosis was able to get my daughter properly diagnosed and treated for her physical health issues that were mimicking bad anxiety and mental health issues. If I hadn't been properly diagnosed with EDS, my daughter likely would have been harmed by inappropriate psychiatric treatment.
Bless your heart. I have those same symptoms. Prayers and blessings. ❤️🙏🏻
Actually, I do find this helpful bc I feel like I have these symptoms too but haven't been diagnosed with pots. Had a heart attack in 2017 and had these same symptoms since. So scary and weird.
When I get up mine goes to 150 as well. Gosh, these symptoms make so much sense.
This is really interesting. Thank you so much for sharing!
Hey! Thanks for sharing this. If you don't mind my asking, do you ever find it difficult/tiring to just sit? I often have a hard time sitting at a desk and find it hard to sit long without my feet propped up. I notice you mentioned that the raised heart rate can be tiring and how it is high even sitting and am wondering if this could be the cause.
So very helpful! Thank you!
Thank you so much for sharing!
My 4 year old has similar episodes which I was thinking were seizure related but his EEG was clear.
If yourself or anyone else can answer few questions I'd really appreciate it.
How long do your episodes last? Have you always been able to lie down prior because you anticipate your symptoms or did you collapse in the past? 9/10 my son wanders off and finds somewhere to lie down before becoming unresponsive
You're welcome! I was also told seizure at first. My episodes aren't very long, maybe 10 or 15 minutes? I couldn't tell you for sure... a little preoccupied when they happen =P I don't collapse unexpectedly. I get an alert from the dog, but without him, anxiety then heavy breathing is usually the first sign that I need to get horizontal. After-effects sometimes last 10 min, sometimes for the rest of the day. They are absolutely exhausting if they play out all the way.
Britt Cee- were u able to get a definitive diagnosis yet?
If not, I can suggest a possibility that you may be able to check out. Your family physician may be able to find out if there’s polysomnography testing available at your nearest sleep study lab for children so young, or what there is in its’ stead; if he’s not going through the stages of sleep that he needs to, he could be suffering from a condition where individual sections of his brain spontaneously power down to rest, with all sorts of symptoms resulting-depending on what’s resting. It can look like something small, like words coming out in the wrong order/backwards/gibberish for a bit, or a fall because a leg stopped responding for a while. It can also be an entire body switching off suddenly, and he’s on the floor and awake but paralyzed, or totally unconscious. If that happens, as he comes to, he can experience something that looks like a seizure; it’s involuntary and may be frightening, but doesn’t cause neurological damage. It also goes away with measures that get his sleep patterns on track.
It might account for his unresponsiveness, when he lies down.
If he’s wandering off and lying down, chances are that he’s noticing something, even if he’s a bit young to be consciously aware of it, or to be able to explain it yet.
I hope you’ll let us know how it goes with him.
I had my first episode in about two years 02 22 2022. And it was my worst one yet. The two women that found me thought I was having a seizure and so did all of my coworkers who were around me. I could not speak properly, my eyes kept rolling behind my eyes, I couldn't stop flickering my eye lids, and my body would twitch and shake. All out of my control. VERY SCARY!!! It had me second guessing if I really was having a seizure (even though I know I wasnt). Being completely aware of what your body is doing without your consent will always be extremely terrifying. I will never get used to it. But it does ease my mind to see and hear others that have my diagnosis who have very similar experiences to mine. It reminds me that im not crazy. I really wish all of you health, happiness, and an over all beautiful life going forward. May we figure this out and improve our health together.💜💜💜
Thank you so much for posting this
My pleasure!
I have dysautonomia without POTS or hypotension issues. Instead my heart rate is ALWAYS fast (at best about 110 to 120 and at worst over 200), blood pressure is also high (at best 130/85 and worst stupidly high/stupidly high otherwise known for at my worse 170/240 at least from what I remember), body temperature regulation is pure crap, my gastric motility is also pretty crappy and I have CENTRAL sleep apnea.
I do have CIDP (chronic Inflammatory demylanating polyneuropathy) and there is evidence that my upper brain and brainstem has areas that are impacted by my immune system destroying the nerves by destroying the mylan sheath covering the actual nerve.
My aunt has POTS and before she faints she breathes heavily and one time i saw that she fainted at my cusins event we went too, i hope POTS does not let you down. Goodluck out there
when you convulse, is it just the minor shaking? do you feel cold? When I faint i am super cold when I come to, the longer i'm out the worse it is. And I shake/shiver. my arms shake like yours but i personally feel like its because I feel so cold, and my jaw shivers as well.
as a fellow POTS patient, Im really curious about how these patients reach their 70s and 80s and die...... I mean .... who's gonna supervise the medication?? I hope that by then new technologies like slow drug liberation implants or something related could be a solution.
This looks so scary!! You poor thing 😭
"air hunger"!!! oh my gosh i hope its okay if i steal that for when i have asthma attacks XD
It's an actual medical term
Coming back to this video I do want to say.. the dr that treats me for it has me breathing from my abdomen rather than my chest. Breathing from your chest will only speed up the heart rate more. When I go into my episodes and I breathe from my abdomen, it really does help.
I’m curious when all of this began. What age did you start having migraines?
Literally fell into an episode while watching this
Watching POTS syncope isn't a trigger for others to faint. It's not like yawning.
@@sixmercer2504 I know but I was getting up while watching it
Ugh I hate these episodes SOOOOO BAD! Have you had your cortisol and ACTH tested? I was treated for a spinal csf leak which helped with many symptoms, but still getting these random episodes
Nope, doctors tell me I'm just anxious
Didn't know until recently that POTS was even a medical diagnosis. For years I have been belittled, called Lazy Azz, Hypo Chondriac, Munchausen, Put on, actress, slob but mostly lazy and just accused of trying to get out of work until the server bullying started when I would have bladder problems and not be prepared enough to work a full or extended shift or be self conscious of the excessive sweating and body odor concerns. Or worse. Being accused of workers compensation fraud because you had episodes at work and work sustain mild to moderate reportable injury.
It's tough.
Wow! Thanks for sharing.
Thank you! Yikes I think I faint more than I think I do bc I don’t seem to count if I’m not out long. Any advice on what to do at work? I’m a student teacher, and I always feel like my supervisors see it as such a burden and ruins my rapport with them when I tell them.
Thank you.. It's nice to know I'm not alone.. You do exactly what I do.. But Im Not diagnosed yet.. Saline does help stabalize me and my epissodes can last for a few hours until I get that water/saline in me. I'm OK when I stand up but this happens to me randomly. I could even be on the couch and it will happen. Luvkily this only happens a few times a year and has only happened about 5 times so far. I started documenting on my last episode since these seem to be a regular thing now.. Symptoms almost exact same thing as you except my heatwaves are awful and I need a fan ir else a pass out from the heat as well.. Thank you so much for this video
I don't know too much about Pots. I don't understand why were you fainting when lying down with your legs up? What's the mechanism of it? I'm myself prone to vasovagal syncope (induced by stress trigger), and for me lying down with legs up is exactly what prevents me from fainting. I understand it's something different, I just wonder how it works.
As for your convulsions to me it looked simply like a neurogenic tremor, a natural reaction when the body is for example tensed or stressed (I may be wrong, that's just how it looked to me, also that here they didn't occur during the lose of consciousness).
(I just noticed it because I'm familiar with the method 'trauma stress release', which uses the natural shaking/tremor mechanism).
Thanks, your Video gave me the hint that I needed to start to understand the odd fainting my doctors seem to dismiss, and investigating in this direction.
They had me doubting I'm even fainting, since I get warning, and can usually lie down before passing out, but seeing you, yup, that's pretty much how it happens for me.
Been testing all of yesterday and today and my pulse jumps up by about 35-45bpm when I go from lying down to standing up. Let's hope my doctor won't dismiss this too.
Only weirdness, it only seems to happen in the afternoon for me, but I'm guessing the 20mg of Hydrocortisone I'm taking in the morning, seems to help, my pulse only jumps up by about 25bpm after that, but by afternoon I'm right back to 35-45bpm.
Get them data. Perhaps they respond better for that. Write down your heart rate at different times of the day for some period. With a common sense and logic, it does not look normal for me.
Hi, thanks for this video. I just got diagnosed with neurocardiogenic syncope during a tilt table test. My heart rate went up from 75 laying to 145 after 12 minutes tilted, and my blood pressure dropped to lower than 71/45, that was the last reading before they stopped the test. I did not pass out. They said I don't have POTS, because I had a drop in blood pressure, my blood pressure is low naturally. I feel like I maybhave POTS because my pulse goes over 100, especially in the mornings to 130s just from standing. This is all day, everyday. It's exhausting. I feel I need more answers. So you have both POTS and neurocardiogenic syncope? For 1 year doctors and everyone thought it was anxiety. I had 2 panic attacks that started from these episodes, from not understanding what happened to my body. My body shakes just like yours, but all of it. Paramedics said it was the adrenaline from my panic attack, but maybe it was just an episode? I wish I was calm like you when this happens, I get so nervous and scared my pulse goes even higher. Today went up to 160. Hope you see this
What are all of your symptoms? Have you tried incorporating different things to help, like salt tablets. Has any doctor believed it to be POTS even though the table test said differently. It sounds like you have symptoms regardless.
I hope you feel better,.
Thank you 💜
Thank you so much for sharing this with us! One thing I was wondering, wouldn't you want to drink a bunch of water at the moment you feel faint? I am in the process of being diagnosed for POTS and the specialist said on the onset of the faint feeling to drink 16-20 oz of water rapidly that it would help. I'm still trying to understand this all!
I've had POTS since 1983, and the rapid water is new to me. Generally it takes a while for hydration through drinking to have much effect at helping POTS, and POTS specialists will often offer saline infusions every few weeks to treat certain POTS patients.
Hoping you can find a good treatment plan! Compression calf sleeves can be a big help. There's also a wide array of medications available to treat POTS in various ways, and it can take time to find with one helps each individual POTS patients since we are all a bit different. Some of the medications include beta blockers like Atenolol or Propranolol, alpha-2 agonists like Clonidine or Guanfacine, and newer options like Ivabradine or Pyridostigmine.
I’m currently going through this. I’m unable to walk. I’m wondering how I can work like this… have any of you guys fully recovered?
Hey hon, I haven’t fully recovered yet but I am able to walk again. Spent 3 days in the hospital with doctors telling it will take months. I ignored them and started hobbling around in a few hours after I got home. It took maybe 3-4 weeks before I could walk normally again. Took months before I could go running or do bleachers at school. Every time I have an episode I have issues walking again but after a few days to a week I have it under control again. I 100% believe in you! You got this! It’ll take time but just do it at your own pace. Don’t let anyone pressure you. You’ll be in my thoughts and prayers. 🤍✨
Thank you. I am being diagnosef in a few days. Took what hone test, and my heart rat way up. I was diagnised with Atrial Fib and migraines for years and migraines. Mainly?I have just sufferedh UT. Then I got the Corona virus ANF now lots of people ( including myself) are experiencing ALL kinds of weird symptoms like those in POTS, so at last they' re really studying POTS, AND all the other diseases hat they have ignored a long time now. I Can' t work, and used to be a really capable employee( a a social Worker ) and NIW some days, I can hardly get out of bed
I’m trying to figure out if I have POTS. Doctors don’t always listen and especially right now, no one wants to send me to the hospital for a tilt table test. I have done a lay down/stand up version at home with an oximeter and blood pressure cuff I own and as far as I can tell from what you describe I have it. I have had a couple episodes of fainting but I’m told I’m just falling asleep. Which is extremely insulting because I think I know the difference between fainting and falling asleep.
I took a tiltable test at 18 and the faint was so strong that I woke up in so much pain, sobbing, sweating. I don't ever want to do that again 😭
Same, I usually wake up before my body does and on that table I was still blind and my whole body was just viciously burning for an insane amount of time. It was the worst blackout I had ever had and I thought I was going to die. That TTT aint no friggen joke 😅
What's the difference between convulsing and shaking in a situation like this? I've never fully passed out but have come very close to on multiple occasions since the development of what I believe is POTS over the past few months. Sometimes, I shake a lot (and it's uncontrollable) when coming down from an attack and get cold and sweaty in my hands and feet. Would this be considered convulsing or shaking since I have a cold feeling that typically goes with it?
How hard was ur pots diagnosis?!?! I been trying for one since 2013 but only had my first tilt table last yr but it didn't show nothing but when I stand I feel my chest pound blood course intense dizziness etc etc, I sometimes get dizzy just sitting up it's insane! Went to e.r. other day my BP was 98/51 laying down I weigh 298lbs that's not normal, can't control my own body temp one min to the next almost faint all the time heck I go to the bathroom and if I'm in there more then two min I know I gotta stand up slowly don't move brace for impact and pray I don't hit the floor, chairs I sit in if my legs go numb I know there a good chance that I'm hitting the floor when I stand up .... Fighting for a pots diagnosis and autoimmune diagnosis shouldn't be this hard 😲 my resting heart rate at that is roughly 120 and skyrockets or drops from there 😰
Thank You for your video Pea
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1000 Hearts & a 1000 Hugs
So sorry you endure this too. My managed EDS, POTS and MCAD and Occip Neuralgia...took a turn after 4.5 years of balance and now has triggered 30 months plus of moderate to severe NeuroCardiogenic Syncope daily . Its so debilitating. I have lost my business my car and driving abilities. Even lately any riding motion takes me out. Anyone who suffers from this understands. It breaks me to know others suffer from this awful DYS chord in our daily life and function.
Curious ...Have you had genetic testing?
If so anything regarding the SLC6a2 or SCN genes?
Thank you again for your video and care shares
((Together We Are Strong))
((💙🦓🦓💙))
Whenever I get up and move I can't breathe and feel like I'm going to pass out
I can highly related to this. I am supposed to be doing a halter monitor and tilt table soon. Just waiting on an appointment. I have EDS (ehlers danlos syndrome) which pots is common with. I was diagnosed with orthostatic hypotension 11 years ago, and have thankfully only fainted one time. Though I broke the end off of my fibula in the process by rolling my ankle. I don't recommend that, it was the one time I put off sitting down way to long. It was also the day after I had my gallbladder out so don't recommend that one either lol. It started getting worse and I started having issues with being short of breath, dizzy, sweating, etc. Well we have a home pulse ox for my hubby and I decided to check mine, and just standing my heart rate stays about 130-145, within a minute of sitting down it is back to normal 70's to 80's.
With those phone heart rate apps don't put your finger on the flashlight sensor. It gets pretty hot. Learned the hard way
Omg i have these slight seizures. I dont pass out to unconsiousness but greyout, heart feels pumping, shake like you did, feel pressure drop in my head
Do you have maybe EDS? I also had bad POTS during my lyme-disease infection but it got better with a lot of electrolytes.
Yes, suspected.