Day in the Life With POTS
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- Опубликовано: 28 сен 2024
- Here's with a day in the life with POTS and dysautonomia is like. POTS = postural orthostatic tachycardia syndrome, which is a blood circulation disorder that leads to symptoms like dizziness, nausea, fainting, pre-syncope, blood pooling, & so many other symptoms.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-dan...
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org...
❤️ cle.clinic/2p1...
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
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Beware of the beta blockers. I used to do what you do in my thirties, as in take a lot of beta blockers to make myself feel better. Big mistake. It made my body work harder to maintain the blood pressure and I ended up with autoimmune problems that are likely related to stress hormone receptors, as in my body does not react to excessive amount of stress hormones anymore like happens in diabetes type 2 with insulin.
It was fun when it lasted, I was perky like you despite the physical exhaustion. (I do not have EDS just hyper-mobility, so my POTS was not as serious as yours when I was younger.) Now I am unable to work and vomit upon standing a lot and have to lie down for hours to digest food particularly if I eat any carbohydrates (the digestion of which require stress hormones).
Just saying, nobody knows how this functions. I suggest you move to Europe when you still can. We have a welfare state and better health care, which is the only reason why I am not living on the street.
Good day. Knowing that there will be others with POTS, watching your videos; can you please use a steady tripod so your clips are not so jumpy. They cause more dizziness and nausea. Thank you for understanding.
Did you get gardasil?
Hello ! My name is Steven and i am Greek .
In 2016 i ve changed my diet for 2 months, because my Psoriatic Arthritis was getting worse . Ι fasted red meat, gluten( which gave me psoriasis ), nightsade vegetables, legumes, grains, nuts, sugar, dairy, coffee .
I mostly ate raw fruits and vegetables(especially leafy greens whithout oil, wich are the best for autoimmune diaseses) , olives, backweed( sprouted and dehidrated ), kinoa, dates, sweet potatoes , a little brown rise and once in a wile i ate fresh fish, oil and eggs .
Now, i have zero psoriasis and almost zero pain ! In 2021 dysautonomia came and i also manage it with the same diet ! The cure is amazing !!!
Remember RAW not cooked vegetables . Give it a try for one month and you will see the resaults !
I hope you get better soon . Keep fighting .
The fatigue that comes with pots is freaking relentless! Lying down throughout the day is essential. I wish more people knew about and understood this condition, because it can feel so isolating xx
The fatigue can be Myalgic Encephalomyelitis. The hallmark is PEM Post Exertional Malaise
If so, staying within energy envelope, and avoiding anaerobic heartrate are key
Do you ever have days or times where you feel totally normal?
@@SP.Addams I never have a day where I feel normal. I get moments where I feel a bit better, but it's a daily problem
@@EE-xo3qr Im sorry. I haven’t been diagnosed but have read of people who feel just fine in some instances almost as if they’ve been “cured”. I’m not on a treatment plan obviously but there are anomalies where I would expect to have symptoms and don’t, and then the opposite happens as well! Things I normally don’t struggle with become and issue.
Ok literally I relate so much to the whole “you just need to get down” thing! For years I just thought it was normal to feel like you’re about to faint after showering or exercising, boy was I wrong! I’m still fighting for a diagnosis, doctors keep saying it’s just anxiety. It can be so frustrating when medical professionals won’t hear you out.
Yes, my daughter would just 'drop' or sit on the floor.
Most doctors really suck with this. I got lucky and my almost-a-doctor-Dr. saw I was right, when I told her I figured out what is wrong with me. EVERYONE wanted to think I was exaggerating or lying. When I figured out I had 56 MS symptoms, by my own research, I got the permission to get an /mri...they don't just hand those out, I hear. The treatment and attitude you get dealing with this stuff is enough to actually MAKE you become one of the Mental Patients!
Mine is an abuse induced spinal cord injury since I was 5. I have, and always have had a lot of stuff going on. This is 100% one of them! so glad I found it....
The research I've done has shown that there is a definite correlation between cervical instability and Dysautonomia - It has something to do with the vagus nerve getting pinched in the neck area. I have moderate-to-severe cervical instability, including a tipped atlas and loss of curve in my cervical spine. My neck slips out of place a lot, even sometimes during sleep because the muscles are so relaxed. It's quite painful but I never knew it was related to my autonomic dysfunction until I started looking deeper into my EDS. Which is how I found your channel too. 💜
Vagus nerve involvement also explains why POTS researchers at Vanderbilt and other research hospitals have discovered that the vagus nerve stimulating medication Mestinon (Pyridostigmine) can be an excellent treatment options for certain POTS patients. Mestinon also happens to improve digestive motility, and researchers at Mayo Clinic and additional facilities have discovered that it can be a highly effective treatment option for patients who have gastroparesis, IBS-C, intestinal dysmotility, and digestive pseudo-obstruction.
I have hypermobile type Ehlers Danlos syndrome with POTS, digestive motility issues, and additional EDS issues; and Mestinon has been my miracle cure for multiple EDS issues.
Yes vagus nerve crap yes but ive had a cervical.cranial fussion n no changes
Absolutely, I agree. Cervical Instability
I've been wanting to look into this connection bc I too have a bunch of diagnosed neck issues including lots of curve, disc bulge, disc wear, and more. Any book recommendations on this connection? For me, I don't think chiropractic is helpful with pots symptoms bc I sometimes feel worse after my neck is adjusted (getting nerve pain down my elbows for a day or two AFTER being adjusted) . But I do see a PT and she does manual therapy on my neck and dry needling. Sometimes also scraping and other pt treatments. I've seen her twice monthly for at least a year now. You do have to be careful with dry needling because it can excite the sympathetic nervous system (induces flight/fight). So she's careful to not overdo it.
@@SDWits I am not aware of any books on the subject, but if you just type "cervical instability vagus nerve" into RUclips you will get a bunch of results to start your investigation. For me, I have benefitted from using neck pillows to help with support (especially if lying on my back) and improving my nutrition, as well as taking certain supplements such as vitamin D3, vitamin K2, and food based B-Complex and vitamin C as recommended by my doctor. I used to do exercises and stretches for my neck, but I actually found that, for me - less is more and I seem to have fewer symptoms if I just leave my neck alone as much as possible. Best wishes to you 💜
I totally relate 🥺😔And am in Africa, I don't even know how I will get the necessary help, because most doctors in my country are not helpful. I go for appointments and they just send me back home that nothing is wrong with me😭yet I feel sick💔💔💔
I recently got diagnosed with POTS and started a beta blocker and I feel like it has given me my life back! I still have fatigue but I can take showers without feeling exhausted afterward. It does make my blood pressure kinda low but I can deal with that because overall I feel so much better!
YAY I'm SO happy to hear that the beta blocker helps you too! For me, meds vs no meds is night and day
If the blood pressure gets a bit too low with the beta blocker, you could ask about Ivabradine. It works much like a beta blocker, but does not lower blood pressure. Ivabradine is the medication that Chronically Jaquie had the best success with for managing her POTS. I miss her a lot.
I was on propranolol but cardiologist told me to stop as it was making me faint even more than usual, I really want a job but I can’t stand for long I hate this illness
@@billiejoe2791 Propranolol and other beta blockers made me faint more, too. When that happens, POTS specialists will switch the patient to Ivabradine. Definitely advocate to be tried on the POTS medication Ivabradine, which won't crash your blood pressure like beta blockers.
I ended up responding best on Mestinon (Pyridostigmine) to treat my POTS, since it also treats gastroparesis and IBS-C. There are several other POTS medications out there, and it usually takes time and a good doctor to go through the options to find what works best for each unique individual patient. Don't give up!
@@Dulcimerist I also have gastroparesis! But i have a telephone appointment soon with my dr and I will ask to try ibravidine and if that doesn’t work well I’ll go with the second one you mentioned, thank you for the advice x such an annoying illness to have! People don’t understand how your automatic functions can be all over the place like us
I just fainted on my table tilt test yesterday so I think I’ll be getting the POTS diagnosis in a couple days! Ty for making this video to help teach other people with pots how to manage!❤️
I hope the tilt table test is informative...especially since the process of getting it done made you faint!
I'll get my results Thursday so hopefully I can get some help and treatment soon!💕 From your video and some reading I know that beta blockers can help so I'll see what my cardiologist will suggest! Btw I have eds as well!💜🦓
@@IzzyKDNAiam tillt tabl test postve my semptom . heart rat selp 70 and standg 150 dzinens fatig
@@duckiguess5958 I have hEDS and had my tilt table back in 1996. Back then they didn't know I had hEDS, and they put me on drugs that increase my blood pressure (Florinef was one of them), which can be dangerous for people who have EDS. Eventually they tried beta blockers, but I had adverse reactions to them. Beta blockers can work for many people, though. If they don't work for you, don't give up! Other great POTS medications include Ivabradine, Mestinon, Guanfacine, and Clonidine. I'm on Mestinon since it treats both POTS and gastroparesis/dysmotility.
@@Dulcimerist ty for letting me know! I would be intrested in Mestinon since i get gastroparesis too!!
I found your channel when I first suspected I had EDS. A trip last week to the ER left my doctors and nurses highly suspect of POTS as wells. It was a (weird but good) comfort to find a recommendation on your video for POTS. I have had to monitor my heart rate closely during workouts (I love cardio) so I don’t go over 160. This past year has been especially hard, but I’m glad I found your channel as I navigate all of my increasing medical concerns. Thank you so much for the time and energy put into these videos. It means so much to someone who is just now learning that I was never lazy and have just had chronic illness the whole time that was never seen and always misdiagnosed.
Tip: If you have a hard time showering, I recommend using a leave in conditioner, it's a hair cream you can apply after the shower while your hair is still wet (I recommend Paul Mitchell brand) 🙂
Your smile is an inspiration to anyone with dealing with a chronic condition. 😊
Been having some pretty strong POTS symptoms these past week or so. I made the mistake of doing too much exercise when I had a really good day and now we're paying for it. :Z It feels so good to see someone else who has to lie down after pretty much every activity. It's pretty disheartening and lonely otherwise. So your channel means a lot.
Physical. E ertion, followed by "paying for it" is PEM Post Exertional Malaise. PEM is the hallmark for Myalgic Encephalomyelitis.
@@leslie6189 Thanks for letting me know. Maybe I'll need to ask a doctor if I might have that. But how to know what is normal tiredness after exertion, I mean everyone gets tired after working out though?
@@specialagentA PEM is usually remarkable. Sometimes it can be delayed, and hard to trace what made a person so tired. There's a good video to watch called mitochondria not hypochondria, produced. By the CCDP Complex Chronic Disease Program at BC Women’s Hospital. And you can look up Myalgic Encephalomyelitis, CFS, ME/CFS, SEID Systemic Exertion Intolerance Disease.. Lots of info online, and if it resonates, you could chat with a professional about it, but do look online
Exercise intolerance is also part of pots.
@@vikhashiniananth7601 This is good to know, thanks!
I just started watching your videos. My husband and my eldest daughter of 21 has EDS. My daughter also has POTS and they both just started the salt pills. It has helped them so much! I wanted to thank you for all your help. At times I feel helpless and just want to do something that will help manage their issues better. Any little thing we find that helps is such a blessing. So big hugs from me to you and again thx:)
Thank you so much for all of your videos. They have been so helpful through the journey that our family has been on in the last 4 years. My now 9 & 13 year old daughters have been diagnosed with HSD, and hEDS. I have been almost diagnosed with most likely EDS or HSD and POTS. This video really resonated with me. I just hadn’t felt a great description as to why I felt like laying down so frequently throughout the days. With my research, I knew the medical research, but it is SO NICE to see a human describe it like you do. Thank you so very much for your videos. Also, I absolutely love your old school radio wallpaper! Sending warm.. well, maybe not warm right now, but, loving hugs from Wisconsin. ~Jen
The whole "2 conditions working against each other" thing can be so annoying! I have fibromyalgia and the muscle pain from that feels a lot better after a long, hot shower, but I also have orthostatic hypotension which is worsened by heat, so when both are bad at the same time I'm like.... well I dunno what to do then
Could you explain the symptoms of those two diseases please?
I always sleep with 3 pillows on top of eachother instead of one pillow, it really helps
I’m so glad that someone else understands. My brother and I both have HEDS and POTS and it makes life so difficult for us. I struggle as an adult trying to get on with life, and my brother struggles as it is now limiting his teen years.
Hallo! I've had Dysautonomia since childhood. I dont quite fit the heart rate criteria for POTS specifically, but I still experience these symptoms, to a slightly lesser degree. I've managed to avoid passing out thus far, barely.
This morning I'm laying on my back watching this, because when I stood up I got the typical black vision, ligtheaded, and my eyes hurt very badly. So! We're delaying the start of the morning.
My family often downplays my symptoms, or they dont understand them. My Fiancé also has a bit of a hard time comprehending why I "just can't" do things sometimes, but he can learn. I rode horses for 13 years, and it kept my bodily condition up very well. I had to stop riding a year ago and my condition has been declining steadily. Things are so much harder than they used to be, and I'm concerned to see how it developes. Just sitting up or bending over causes immediate issues and/or intense pain. Lots of digestive issues too. We will see.
Dysautonomia & EDS girl here, you do so well not using a wheelchair full time and not having a full time carer. I have a carer and I use a wheelchair full time. Showers are the absolute worst! It’s so nice to see you have your independence, but I can see how hard you’re trying to keep it. I faint multiple times a day and have pre syncope. I could see you being hit by it throughout the video. It’ll be cool to see that unedited. I wonder if you could set up some cameras to film all day and if you do manage to capture it on you blog camera then you could get the footage from the all day. To show a real day in the life with Dysautonomia. Thank you for making this video, to bring awareness. It took me 24 years for me to get diagnosed, been diagnosed for 4 years now. I do the bike to keep my thigh muscles, because I’ve put on so much weight with atrophied muscles, your BMR reduces with less muscle. Not found it’s help my POTS at all. But any exercise is really good, helps me get my frustration out. Being disabled is so frustrating when you can’t run around and do the things you want to do.
Thank you so much for making these videos on POTS. I had heard of it and people having it but never really understood what it was. I’ve been diagnosed with hashimotos at 16 and Lupus at 25 and all through those years I’ve had symptoms that I was confused on like this neck heaviness that causes nausea and weakness, blood pulling after large meals or being hot, dizziness everyday, low blood pressure and rapid heart rate, and so much more. So thank you for sharing your experience with us I really appreciate it and have never felt more seen. I’m like 99% sure I have POTS but just need the confirmed diagnosis now.
Propranolol is a life saver alongside midodrine for me. Especially in the Florida summers. Compression socks have never done much to me other than make me feel really hot. I understand that shower struggle. I literally just sit on the floor of the tub throughout my shower or practically lay there. Either way though I end up laying around after I shower to regain some energy.
I’m 26 years old, and have been dealing with many of the symptoms you’ve described (no cost hanger pain fortunately) since I was 12 years old. I always pushed through because I was worried about other people judging me, including my family. When I tell them I can’t help them with something because I’m feeling weak enough to faint, they roll their eyes. Well, I’m having an especially potsie weekend. I felt really weak yesterday (Saturday) and I only got weaker as the day went along. It’s now Sunday, and I’ve been in bed all day, only getting up to feed the cat, use the bathroom, and keep getting gatorade and water from the fridge. This is the worst I’ve felt in a long time. I finally have a doctor’s appointment in a couple days to start the process of getting an official diagnosis. I honestly feel really emotional about this, and to finally get a diagnosis to validate what I’ve dealt with for so many years… it’ll be unfortunate, but I just might cry tears of joy. It’s such a struggle having days where you’re just trying to keep up with everyone else.
Same here plz update !!
Any update?
About 3 months into my POTS diagnosis after dealing with symptoms for 11 years and countless drs dismissing my symptoms are just telling me I had anxiety issues. Propranolol twice a day is my current sweet spot but I have to watch my blood pressure because I deal with Orthostatic hypotension coming out of a squat or bending over. Showers on bad days are a definite no go and that fatigue is REAL!!! Mid afternoon naps are the only way I make it thru the day. POTS life is a rough beast for sure.
Thank you for this video and showing the breathlessness. I wondered why I am so breathless sometimes and was not sure if it was from the POTS. My POTS is pretty mild but it is hard to explain sometimes why I just need to lay down. It makes me feel like I am just lazy or something but your video is very comforting. I also have a lot of neck pain and do not have EDS. Never heard about this coat hanger syndrome before so I'm going to do some research into it. You really are amazing and I am so excited to watch you throughout your career.
I have had an ongoing dizziness problem for nearly 2 years now. First I got RSV(look it up if u don’t know) and that made me dizzy for a year then for the whole of last year I was dizzy and they had know idea why then just a few days ago I went to the doctors and he didn’t know what was happening so he sent me in for a blood test and it was all fine so now I am getting referred to the children’s hospital because they think that it is pots. But this video has made me get a deeper understanding of what pots is so thank you.
Compression socks have always caused me pain to wear and more pain after I take them off, but I don't know what pressure/tightness levels I've been given. Had no idea I could choose something with low to moderate pressure. Thanks for the link. I might try it and I'm sure my mom would be interested. Great vid and editing. Thank you! 👋🥰❤️
Not to mention there are a ton of other crazy symptoms with pots. I hate the fainting, but there are a lot of others. Ymptoms that I hate the pods like exercise intolerance, heat intolerance and when the blood pulls to my legs, it's his itchy, cold burning sensation. My vision's blurry, my voice changes and the extreme fatigue
In the event you also have lung issues, turn on the bathroom fan if you have one. It keeps the humidity out of the air.
Eds pots mast cell plus more... living in Florida in summer sucks. I found famotidine helps tremendously for pots and mast cell.
Recently diagnosed with Dysautonomia POTS and really in the thick of it. I’d love any and all tips from people who’ve been treating it for longer.
Liquid IV brand to add to your water (hydration is so important!) if you feel faint, either eat a small amount of salt or if you’re hungry, eat a pack of ramen noodles (loaded with salt). A consistent and good sleep schedule, knowing when to take breaks and close your eyes, rest your legs. It’s such a rough battle… but dont get down on yourself if all you do is nothing but lay around all day! Also- if diagnosed you could get social security disability for it. I let mine get so bad I was having seizures!!!😮
My daughter is 22, she got POTS at 12. I did My studying or research late (should have done before I allowed Gardacil shot) anyway, at 20…I discovered a Dr. On RUclips that said he gave patients Acetalzolamide, major game changer!!!!! She is driving and going to work as a waitress even…and on deans list at ASU! Go to your Dr, get it!!! It’s only a water pill but decreases headaches/ brain fog to point she can do all that! It helps the CSF move vs. sleep at base of skull accumulating in one spot. God Bless girls❤
Wait, does cerebral spinal fluid pooling contribute to the coat hanger pain?
3 days till I see a geneticist!!! I’m really nervous but excited to finally get professional help after being on the waiting list for 9 MONTHS
GOOD LUCK! I hope you get answers
Good luck !!
@@IzzyKDNA ty!!
@@nicolelauderdale3919 thx!
I’m also about to go see a geneticist, next Monday. I had to wait a while to get in too. I wish you the best of luck 💜💙
I use a waterless leave in body wash meant for bedbound people. It helps me on days when showers are impossible.
You living my last 18/19 years 😢 minus dizziness Everytime getting up (undiagnosed)
I feel like this after Covid been laying down all day for a month😭🤦♂️
i just got a tentative PoTS dx. i feel incredibly blessed to have already been using compression socks & clonidine (propranolol alternative) daily for other reasons, so i already have tools under my belt to manage symptoms. thank you for showing what you do every day, this is super helpful for a baby PoTS patient
Wow I’m 62 and I can relate to everything you say- the neck pain w/the POTS and dizzy, fainting feeling unless I lie down!
The mornings are the worst and the showers!
Who helped you?
Name of doctor?
I’m sure I need the meds!
I thought I had vertigo but cardiologist said autonomic but he’s not really into POTS(unsure)!
Any help will be so appreciated!
You are appreciated and I’m
Praying for all who have this POTS!
🙏🙏
I have pretty severe pots, i have a service dog whos trained to preform tasks that help me, ❤ if possible, i reccomend a service dog if its really bad like this, they are INCREDIBLY helpful, they do require 2 years of intense training in order to be considered fully trained though, mine is trained to retrive items for me, psychiatric tasks, dtp, and hes currently being re trained to alert to my pots episodes, hes going to be trained to press a button in the car to let me know when ill be having a flare up and to signal me to pull over since i get dizzy at the wheel,
I'm glad I found this video. You are lucky you found out at a younger age. I've been struggling for years and just found out about POTS. I have a long list of other things also which doesn't help the situation. Thank you for sharing I'm going to show my husband
Your apartment is superrrr cute haha! That’s all I could think of watching this lol
Thank you for this
Have you tried cold baths; but I really mean cold, like freezing cold. It is really helpful
Thanks Izzy. Good job. You make a difference in many people's lives. It helps me a lot to see that I am not crazy ...It is just POTS. No, no "just "! POTS sucks. Got it after a flue shot. Whished I had never taken it. And thanks for the compression socks. Look great, will try to get some fancy ones. Mine are beige and black 🤪
All the best to you ❤
My daughter sits on the shower floor and uses the handheld. Still the warm water can effect the vessels causing symptoms but better than standing up.
I have POTS, Gastroparesis, and apparently Dumping Syndrome. Dysautonomia is no joke dude. I've been dealing with it for about 5 years now after I had my gallbladder taken out and I'm still learning how to adapt to my illnesses and learn how to live with them. Any tips or tricks that anyone knows that could help (I'm pretty much bedridden at the moment), that'd be AMAZING. :D
Sorry you have to deal with all of that. I went through a bedridden phase for a few years because of my Ehlers Danlos syndrome, POTS, gastroparesis, and additional issues. My doctor finally put me on Mestinon (Pyridostigmine) because it's an emerging repurposed medication to treat both POTS and gastroparesis. It's also currently in clinical trials to treat chronic fatigue syndrome and exercise intolerance. Although it doesn't help everyone, it's been a miracle sure for me. Unsure if you've tried that one yet, but that one and some other options are available. It might take some time and a good doctor to try a few different options in order to discover which one works best for you.
i wear compression socks to keep the blood circulating through my legs. i also put my feet on a pillow to keep them elevated. i take so many supplements, but i also recommend a sodium packet. you just mix it into a water bottle and the one i bought has 1000mg of sodium. so usually i drink one or two a day. i also sit down in the shower when i wash my hair to prevent myself from falling over.
I have POTS and it’s extremely hard
I have to do the same thing in the morning… I’m currently sitting up in bed watching RUclips for a few minutes before I try to stand up 😂
Im 14 years old and recently suddenly started developing symptoms of pots, at first we didn't know what was wrong with me. I was admitted into the hospital about a week ago and am still in the er, the second day of my stay i was told i have pots this video helps me see ways i can help myself with this condition
Hi, if you don’t mind me asking what were your symptoms? Sometimes I would wake one morning and I would feel like the whole world is spinning super fast and it was kind of hard to walk and felt like throwing up too so yeah and i would feel like this for days. If you don’t want to answer you don’t have to I would just like to know.
Can we have a house tour please!😀 your house looks beautiful♥️
I can't stand, walk or just sit up straight without my legs immidiately going purple and feeling terrible. Been on the couch for 2 months now feeling depressed. I'm going to try to get a pots test asap. Btw, is the purple leg thing dangerous?
I’ve been battling with doctors hospitals etc for 3 years now , I’ve lost 6 stone. I can hardly stand I’m always dizzy , my feet are constantly freezing , I shake when I stand up , I can’t do anything without feeling I’m going to pass out , was thinking it was heart related but it’s all put down to health anxiety , it’s driving me insane , I have a lot of if not all the symptoms of pots
Why don’t you wear compression stockings to the waist? They’ve made all the difference for me. Socks alone hardly do anything in comparison.
Testosterone replaced therapy has been shown to ease most of symptoms of POTS. (including dizziness-lightheadedness , tachycardia)
-ISOMERLAB
My doctor has me wearing compression stockings 30-40...big difference in hiw I feel...way better
thank u for helping me feel less isolated I'm almost 15 now I've had this for a while but I've been more dizzie and fatigued lately and i started taking supplements maybe theyll start to help
Great video!
Lol I know Gilmore Girls sooooo crazy well, that I knew that that's what you were watching based on the sounds in the background! It was the episode Rory goes to Dean's house and pretends to be a girls scout when Dean's little sister answers the door 😂
We have so much in common! I have pots and Eds and I love Gilmore girls! It’s my face
I also have fibromyalgia and there trying to diagnose me with early onset lupus
Coat hanger pain is the worst 😢 I totally understood when you said the pots and EDs fight against each other. All moly illnesses do too
Same! I can’t stand up in the same spot for awhile but I can walk and not have an issue
If I start getting dizzy I will sit and take a break but it’s crazy what our body’s go through
I believe I have pots
YOUR CATS ARE SO CUTE.
I Fought to get my diagnosis and finally got diagnosed about 5 years ago, i also have scoliosis so i totally undertand everything in this video 😭 ive always managed to find a seat before i pass out but with my scoliosis its so hard to get out and about without one or both illnesses bugging me. Its hard because my mum doesnt fully understand but shes tries her best
POTS effects every body system & that’s what people don’t understand. They think it’s just a high heart rate but there are sooooooo many other things that go with it. The dizziness, the constant nausea, the muscles weakness, the fatigue, the brain fog.. I could go on all day. Lol.
I bought a shower chair and it made my dizziness so much worse 😩
The need to lie down is hard to explain. I feel out of breath and need to
Lie down immediately to slow down my breathing.
It’s like running really fast, your heart is beating so fast, and being out of breath, and all you want to do is lie down to ‘relax’ and catch your breath. Your body kind of feels like it’s exerted so much energy and need to kind of ‘collapse’
I feel strange with this one thing. Everyone here is having such a hard time with showers, but showers seem to help me. Maybe its because i move in the shower more than normally, maybe its because the temp make me feel like i have a consistent temp, maybe because showers are a comfort thing for me. Does anyone else have it this way too?
Thanks I didn't know i had it till you.
I take imdur
That was a really useful video, Izzzy. Thank you from someone who was diagnosed and just left to get on with life xxxxxxx
❤️❤️❤️❤️
How do you stay so strong???
I have been learning more about my pots because of the standing or movement based tachycardia so I realized I probably have had it for years because showers were the worst for a long time. If I ever took a hot shower( Vs the lukewarm ones I take now) I would get super nauseas with belly cramps , short of breath and my heart would be racing. I would have to quickly stumble out of the shower or turn it to real cold to minimize the pain 😐
Not sure if this is related but I've noticed a lot of women with pots and cervical instability have very long hair. My daughter with classical eds had it too when she got worse with dizziness and nausea. She had it cut a lot shorter, not sure if she's better but it seems not to be getting too much worse.
Wow . Of course it’s unrelated . Do you think that if they cut their hair then the disorder would magically disappear ?!
I have a chiropractor and feel like he helps so much with coathanger pain! And rib pain when I’m more out of breath
THANK YOU xxx
How did i not connect the shower to worsening symptoms omg
My wife and I have had POTS for a long time before covid. The odds of this are low, so it makes me wonder. All ideas would be interesting.
Can we get a thumbs up from the dudes with POTs!
I know I got anchors with actors from media..I just went with it. It is just timed script. I respond as if I had a conversation.
Rumors and such, I cant really make acquisition if I can't validate that. People can say they abused someone when in reality they didnt and just looking for you to swing out their name wildly.
Or even abused people can come forward and share their real story, say where they are and then gaslight you later about it to attempt to invalidate you if you share it with others to back your own story.
I've been to the doctor for similar symptoms, but they really haven't helped me. They can never get past anxiety for any symptom I report. I have a question about the coathanger pain, I always have that. In the winter, I feel cold in that area all the time as well and can never get warm. Do you frequently feel cold there? Even getting cold for a minute and I'm freezing the rest of the day in that area without adding direct heat such as a heat pad. Layers don't help because it seems like they just insulate the cold. Thanks for reading this!
so off-topic, but i need to know where you got your adorable glasses?!
I had a period when I was often very dizzy, nauseous, had a headache, felt light-headed and weak and so on. my heart rate then was 37 and my blood pressure 6/34. this was pretty scary and didn't feel right. never went to a doctor.
Hi! I’ve recently been diagnosed with POTS and I am struggling coming to grips with the fact that I am now limited to certain things and I can’t be the same. Can you give me any advice on how you managed this and let go of any negative thoughts?
Thank you so much for sharing! It made me feel better seeing that someone else relates to the things i feel since I haven't met anyone else with it. I was just diagnosed with it and put on midodrine to help relieve some of my symptoms, and also get to wear compression socks.
Do you find that sitting with your legs crossed and then standing up makes the POTS reaction to standing much worse? Leg crossing tends to elevate the blood pressure, and I've found that it seems to cause the blood pressure drop and near-syncope episodes to be more severe with me. Crossing my legs while seated makes my Ehlers Danlos hips feel better, though. Before standing up, I do better if I uncross my legs and then moved them around for a minute before standing.
Can you please say whether metaprolol decreases bp...I already have low bp..Please do reply..Thanks in advance
@@karthigasundar9319 Metoprolol lowers blood pressure, but sometimes it can stabilize blood pressure instead of lowering it too much. Work with your doctor to see if that medication is right for you.
Ivabradine is often a better option, since it controls the tachycardia without lowering blood pressure. Your doctor can determine if that one is right for you.
What compression socks would you recommend as of 2024?
I've been suspecting that I have POTS for a while now, but I've only ever fainted once, which was like 20 years ago. How likely is it that someone with POTS just has the lightheadedness, dizziness, and heart palpitations without actually fainting? Everyone talks about fainting with POTS.
I'm not a fainter and I have OH and POTS. Your body learned to do little tricks like tensing your muscles or shifting your weight to prevent from fainting. Also some people are more mild than others and it differs from day to day. On a good day my heart rate would only go up 30 to 40 beats and I just thought that was normal, not even feeling lightheadedness then. On bad days I have a 100bpm increase and then get really symptomatic.
Can you only have noticable symptoms around a heavy period and stressI always have problems with racing heart but no falling until after my period. Sometimes i have horrible attacks like being sea sick with rapid vomiting and dizziness when i first get up and SALT helps. I have recently been just falling over when trying to get up from sitting. Just cant stand and feel better with head on ground.
I have pots and dang it’s been hard lately. It’s nice to know I’m not alone. Pain has been hard what meds have you found that help some?
My physical therapist recommended I sloooooowly sit up in bed, then, with my legs hanging over the side of the bed, kick my legs to pump the blood before standing up. It helps my POTS, but I have to balance that with my need to bolt (stumble 😆) for the bathroom due to incontinence 😳
I’ve heard of POTS before so when I started developing symptoms I became very paranoid. Don’t know if I actually have it, but here’s my symptoms:
I got Covid between my moderna vaccine doses. I got my second dose 10 days after being symptom-free from covid. Night of the vaccine I started getting tachycardic but I thought it was just because I had a fever coming on. I felt the exact same next day tho-low grade fever, 70 bpm lying down but 130 as soon as I stood up. It feels like an endless panic attack; it’s so debilitating
Sounds more like a vaccine reaction. Check VAERS to see common reactions
How are you feeling now? Anything change?!
@@Hope-un9ls hey! My HR rarely goes up to 130s now, but I still get significant increases when I immediately stand up from lying down or stay too long in the heat. Now, I average high 110s most days.
Omg you are the third person that told me after the vaccine they end up with tachycardia. I took the Pfizer and I was diagnosed with sinus tachycardia even when I was resting , but now I’m experiencing high heart rate when I stand so weird! I go to the cardiologist the 11th hope to see what’s going on!
@@lacretiadurant1888 i hope you get answers! i went to a cardiologist two weeks ago and he was extremely dismissive to the extent that he basically said "POTS is so rare that it probably doesn't even exist." I left so infuriated. I have no official diagnosis but I'm 99% sure what I have is viral POTS, which will only improve with time, rest, and lifestyle changes.
Does pots dangerous for life or just difficult for everyday life?
Do you have a pacemaker?
faints cutely*
do you have the link to that shower chair??
I'm still on the lookout for compression socks- any recommendations fellow potsies?
I prefer compression calf sleeves like marathon runners wear. I like the brand 2xU the most. The calf compression sleeves do the job much better for me than full stockings.
Wasn't Hyram outed to be a scam artist or shill something?
I am new to this pots, please tell me what a episode of pots is like, my symptoms usually are: Pounding heart at rest, neck pain, and i usually suffer from a panic attack. I am scared that i will get a heart attack even though the doctor said i have nothing.
What fitbit do you use?
Did Corlanor work for you/ have you tried it?
Do you ever feel like fainting a lot because I do
My 3 y/o son doesn’t quite understand when mama has to take a bit to get up and can’t just run after him sometimes, but I still do when I have to and wooo my body does not like that 😅🤦🏻♀️ showering I have to do at night for sure. The heat is not good for my POTS but feels good for my RA it’s a double edged sword haha
I know what you mean! It's so annoying when someone knocks on my door and I'm lying down. I have to get up rather quick to answer the door, but then I also feel so dizzy and sick😵!
Do you find that the added salt causes constipation? I have POTS and it seems like the more salt I take, the more I'm constipated.
hmmmmm i don't think so, but I never really thought I about tbh. I randomly get constipated all the time though idk if it's due to salt intake. Has anyone else noticed this?
I haven't experienced constipation from extra salt intake. I suppose if someone took way too much extra salt, the water retention could potentially lead to harder/drier stools.
It's hard for me to test this now, as I take Mestinon to treat my POTS, and Mestinon is also a treatment for gastroparesis and chronic constipation.
maybe you need to increase water as well.
What meds did doc out u on