Day in the Life With POTS
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- Опубліковано 30 вер 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.
This helped me feel so normal..
I often find myself gaslighting myself. I get sick of the constant array of symptoms because I KNOW how I sound to others. I sound like a nut / hypochondriac. But I'm not. I just have SO much going on at all times.
As complex as it sounds from the outside, imagine how chaotic it is in our heads and all the things we aren't mentioning because we're still working out what's going on, what's causing it, which illness and what we need to do to fix it.
This is how I feel every day. The anxiety from it is horrible.
I went over 6 months feeling this way before I went to the doctor and was diagnosed with pots 😭 i just kept ignoring the fact that i was feeling sick all the time which i definitely shouldn't have done.
I have had this exact thought, like I have so little to show for how shitty I feel, because when you say you are tired or dizzy people just go "oh you are just dehydrated",,, not the same
I had decided not to talk about it at all. Not only cause I did not even know what was going on; but everytime I saw a doctor everything was perfecto. So, it was all in my mind.
I can relate. I'm finding I'm diagnosing myself waaaaay before Dr's are. I currently have Endometriosis, I'm pushing for a diagnosis for EDS and now I feel I have PoTs too as the last year my heartrate has been going nuts but I keep being fobbed off!
Thank you for including the "breathlessness" in your video. This is the symptom I have been most gaslit by PCPs and cardiologists about. I have repeatedly been told it is anxiety or my imagination and it is NOT a symptom of POTS. So THANK YOU for showing me that you get out of breath exactly the same way as I do!! Usually its in the morning and/or getting out of bed for me.
Are you doing well rn?
Goodness! Me too! Cardiologist says I'm normal. He says he will dismiss my breathlessness, even though that's probably my most worrying symptom.
@@JerwenSiendo-ff9lc Right this second- I'm fine. But early in the morning I am ridiculously out of breath like I just ran a marathon. And I have to hold on to the wall so I don't faint.
@@skittes3 I am guessing doctors dismiss much of what they do not understand, which is so frustrating for us. I used to think people would be MORE interested in learning about something they do not initially recognize.
When I practiced psychiatry, I had patients come in to be evaluated for anxiety when they actually had POTS. These were classic POTS symptoms with a typical presentation that somehow their PCPs insisted was anxiety. Fortunately for them, I knew the differences between the two, asked the right questions, and told them what was going on and how to manage symptoms. POTS is really not as uncommon as people seem to think it is.
I have hEDS and POTS (and Hashimotos, Lupus and MCAS) I am 42, most of these were not diagnosed until the last 5 years, I've just been treated like a hypochondriac or ignored since childhood. I just power through as best I can. I am really glad that more doctors are recognizing and treating things. My kids have hEDS too and POTS too. Thank you for sharing.
Yes hashimotos too, and growing up I was told “your on your meds why are you still tired?” Then they diagnosed me with tachycardia, but not pots.
People and Doctor's/Nurses can be so utterly horrible to us (Classical EDS & POTS for me).
It can get hard to ignore the fact that most people still think you are a hypochondriac even *after* you finally get diagnosed and have *visible* non fakeable symptoms.
It helps to remember that they are morons but it's hard when it's your own family.
I'm so sorry you had to go through that level of medical gaslighting. I went through the same and it's taking to recover from the psychological damage.
Its horrifying hearing all these people not get diagnosed for such a debilitating illness. I'm so thankful to have had doctors who listened and worked it out with me. At 15, I have been diagnosed HSD but the doctor has said herself that its most likely hESD when I'm old enough. I have symptoms from hESD as well. I also have been diagnosed with POTS which is so helpful because I had no idea what was going on. I hope more doctors diagnose (correctly) as time goes on and medicine realm evolves.
Hello--I'm not sure if you will see this but my name is Ella. I am 20 and feel I am in constant pushing through the chronic pain, of which I beloeve to be POTS. I finally decided to go to some doctors, but still, I am told all is fine and my stuff looks good. It is so exhausting, I'm not sure what to do. Any words of advice to get through?
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💔💔💔
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....
I washed my hair today and am just gonna be down for the rest of the day. Thank you for sharing, it makes me feel less alone to know that showers are other people’s worst enemy too.
Yes they are 🙈. Warnt it great to take a good long shower in those healthy days...long ago. Never thought such a stupid illness would exist. Thanks for your comment. Let us live our lives the best we can. Hope you have friends who come and visit. Health insurance gave me a wheel chair. Still dreaming I can walk my dogs again for hours. For how long have you been having to cope with POTS?
Greetings from Bavaria 🙋♀️
How long are
Yes! I just washed my hair after avoiding it for almost a month. I just didn’t have the energy to do it and I took a nap afterwards.
Yes, I've fainted in shower. I have to turn shower off, sit down and wash myself then stand up and rinse off.
I also have POTS and everyone in my life thinks struggling in the shower is just crazy. I have such a hard time that I use a shower chair and because I also have HEDS my shoulders sublex so my husband has to help me wash my hair.
Omg I feel so related to this. My husband helps me wash and dry my hair. I simply can't hold the hair dryer after a shower even if it's luke warm water.
@@BunnyFoooFoo same! We are both pretty lucky to have amazing husband's to help us
Yes! My husband loves showers, I dread them. I feel exhausted afterwards.
Omg I'm so jealous you have a husband to do that stuff :(
@@Fckyouification I am very lucky to have such a helpful and caring husband to take care of me
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 UA-cam 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 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'm so glad you kept in the breathless bits in the video :)
I can totally relate to this, especially the showering. I’m at the point where I spend most of my time having to lie down. It’s frustrating. It is very debilitating. If I tried to do bike or treadmill, I’d pass out. Thanks for sharing your experience so I can show others what I am dealing with.
That coat hanger pain is for real. I just had to come lay down, because my neck and the base of my skull are bugging me. Along with intense dizziness.
I know right 😬
I’m 26 years old, and have been dealing with many of the symptoms you’ve described (no coat hanger pain fortunately) since I was 12 years old. I always pushed through the discomfort 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” (quotes because I don’t have an official diagnosis) 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, frequently struggling to keep up with everyone else. 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.
Compression socks DO help me but I can’t get them on without dislocating my thumbs (and usually a few fingertips as well).
I love the Corespun cotton 20-30mmHg compression socks by Therafirm. My insurance covers them and they are the easiest ones to put on that I've found. I still have trouble putting them on if I've just showered or put on lotion, so showering at night helps me avoid this.
I have POTS, too, and the fatigue and struggle to shower is REAL Great video! 💕
I was recently diagnosed with POTS and all the time when i wake up in the middle of the night to go to the bathroom i have always noticed that i was stumbling and tripping over things and i felt a bit dizzy, but i just thought that i was more clumsy in the morning. But since researching and being more aware of my symptoms it is apparent that ot was from my POTS
Wow, it was really good to see the breathlessness - I get that too! I used to try to hide it from people but now I just let it happen. It’s taken a lot of adjusting
I've had pots since I was 12. I'm turning 23 this month and doctors are NOW testing me for it. My whole life I've been shamed, gaslit, and ignored about my pain. I groan at the idea of them ever saying "it could be anemia" for the 100th time. Or anxiety, oh lordy. Seeing your video and how you go about it is reassuring to me in some way. Thank you for showing us your world
It's always "anxiety" or they blame my asthma! I finally got diagnosed yesterday.. thank god for my new PCP
I was diagnosed with pots last year and I’m 17 now and my parents both never take me seriously when I tell them I physically can’t do certain things at times because I’m either about to have a fainting episode, or I’m having really bad fatigue. And they’re like “oh well me and ur mom are old and we still do things” 🤦♀️
Having an “invisible illness” is so difficult at times. I’m sorry your parents are not understanding of your issues. Maybe have your dr explain how debilitating it really can be to them. People take basic functions like having normal energy to even have a conversation or shower for granted.
İ am 21 an also feel the same things. How do you feel right now , is everything well
@@leylahasanova480 hey Leyla do you have instagram I am as well 21 and i have the same symptoms. When I stand my heart rate is super high and I can’t even do anything especially with heart palpitations
I hate that so much. "Oh haha lazy teenager" no I literally feel 80 and like I'm on the brink of death 😐 living is exhausting
@@sav2823 right but I think i found my soluation I have hiatal Hernia I think that is what is causing my fast heart rate and heart palpations especally after a meal it sucks so bad. got blood work done everything came back fine. CT scan everything showed normal. EKG normal. no signs of blood clots nothing just the hiatal hernia forsure. i wonder how big it is that it is messing up my day to day living.
I have hyperandrenergic POTS. Does anyone on here have that? do you work or are you on disability?
I have POTS only mildly, but it was quite a few years where I was telling people that walking (pelvis/leg pain aside) was fine, as long as I keep moving - I feel okay, but I can't stand still. I start to feel unwell. And it used to garner raised eyebrows. I also got really confused about sweating when I got out of the shower. I always felt either overheated or unwell when in or after getting out of the shower. Especially if washing my hair as well. I only really understood what was causing it (aside from general unfitness, being overweight etc) when I got a smart watch. My smart watch gave me a really good insight as to what was going on. I've always known my heart rate was at the upper end of average and my blood pressure was at the lower end of normal, but I didn't know how much it changed when I was standing. The less I move, the higher it goes. I'm so glad I've worked out what it is though. I know over 130bpm, I start to sweat. Over 140bpm I get a strong urge to sit down (can't explain it, but I just feel like I need to sit or I'll drop). Over 150bpm I begin to feel really unwell, and over 160bpm I start to feel incredible nausea. I suppose one upside of COVID is that we got a pulse oximeter and I was able to keep more of an eye on what my heart rate was doing. I'm really appreciating see what else other people deal with who have EDS/hEDS/HSD. I've felt like such a hypochondriac or nutcase for having such bizarre and seemingly (but obviously not in the context of EDS/HSD) unconnected issues.
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?
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) 🙂
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!!
At what age did pots start for you? 😊
14 years old.
This is my life for the past 10 months. I can relate so much to the shower issues and fatigue after doing house work for only a short amount of time. Hope we all get better!
I get extremely exhausted if I am even sitting and as soon as I lay down I am fine. Also, I can barely catch my breath while standing and add talking.. I get tired while walking but adding the talking part I cannot talk without catching my breath and I feel like I have to hunch over just to exist...is this a part of POTS
I had a severe vitmain b12 deficiency
B12 controls nerves and since so sever and didn’t get the proper treatment the deficiency was going on unnoticed pointed at other things
Now I have nerve damage and pots like symptoms (or pots) don’t know till Monday . Tilt table test was postive I guess but the dr said there’s another possibility too of atrial fibrillation so have the cardiologist check
I’m sick of living this way
One year ago was fine neve even knew what a dizzy spell felt like or weird vision or anything else experiencing
I just turned 25 not long ago and had to move back home can’t even live on own any longer
Can’t walk more than 10 minutes can’t remember things as quick anymore so hard to even cook big meals or have energy to eat
Im 105 pounds now.. so small and fragile
Ive been struggling with some kind of fainting disorder recently. And I think this might be what’s going on. Thank you so much for shedding some light!
Izzy - I just discovered your channel when you went to visit MUSC and I cannot express how much seeing you and the other hEDS patients and scientists being successful in academia and beyond. I’m a 24yo pre-med student and was just diagnosed with hEDS, POTS, MCAS, and some of the other common comorbidities (including autism, which was completely unexpected - but I digress) earlier this year. I’m just wrapping up my second extended medical leave from school, and about to start what is hopefully my last year of undergrad - but I’m still so very sick and have been struggling with feeling discouraged because of it. I can’t imagine how many people reach out to you and don’t want to ramble for too long, but it’s so great to see someone JUST like me doing the things that I’m also aspiring to do, and I’d love to be able to connect further. Thanks for all you share and making me feel ever so slightly more capable
Thank you for opening up about your experience! I live with POTS too. For me, I can do strength training, yoga, and pilates, but try to avoid doing too much cardio with my POTS.
Can you do a video on how to discuss chronic illness in the workplace? Like how to tell your boss you have or have just been diagnosed with a chronic illness?
I think I have Pots I’ve been to the hospital multiple times and they say it’s anxiety I get shortness of breath chest pain and lightheaded my heart rate goes up and so does my blood pressure and my body begins to tingle and go numb. Will I still be able to have a normal life why did this start happening all of a sudden?
Just got diagnosed, its really helpful to see how you manage it!
I am thankful everyday for my beta blocker (atenolol). Before I had that medication, I would feel like I was going to die every single day in high school. I grew up in Palm Springs, and it was over 100 degrees for multiple months of the year. Walking to class or standing waiting for my mom to get me was the hardest thing I’ve ever had to do. I couldn’t even grocery shop anymore. Now with the atenolol I am able to do all those things! I still cannot take hot showers, but I even work as a cashier without fainting!! Every once in awhile I’ll sleep for like 16 hours and miss a dose, and all those bad symptoms return.
I’m the same-I take 10mg of propranolol daily (a super low dose) and it is definitely a godsend. They seem to be doing something other than just lowering heart rate. Propranolol crosses the blood brain barrier so it may cause a change neurological speaking.
Did you ever feel like your heart was just pounding really hard and it would scare you? I have the same symptoms you say and just feel like i can’t go anywhere and have to just bend over /:
My heart races and I can't breathe when I get too hot. Its very uncomfortable and I wonder if I'm overreacting...
Seeing how you struggled in this vid with dysautonomia, and knowing my similar fight with energy from dysautonomia issues and studying a Master of Ecology, makes me hope so badly that you’ll get through grad school without too many illness-related issues! I was thinking of becoming a genetic counselor too but couldn’t sit 40 hours per week at a desk. Sending you good vibes and have fun on your holiday!
I don't actually know what the f is wrong with me, bro, but I don't want it. I literally do not want it. It needs to go away. I will literally get a heart transplant if I have this.
No thank you, would rather die.
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 started having pots after Covid. Did this happen to anyone else
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.
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!
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 think salt water and electrolytes are the answer to this ❤️
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
Thank you so much for this video! People really don’t understand what we go through on a daily basis!
I remember so often blacking out in high school trying to walk between classes. My friends knew and would look for me.
Hi Izzy! I’ve been watching your videos for awhile now and I finally wanted to comment and thank you so much for all your videos but this one in particular. It made me really emotional honestly watching this because it made be realize how I do so many things I didn’t even realize to help my suspected POTS symptoms. Also, I suffer from a lot of coat hanger pain and had no idea that could come with POTS and it is crazy to think that there is an answer for all these different symptoms I have. I’ve been struggling for years with doctors telling me I just have bad anxiety and sometimes I want to give up but this has made me not want to give up until I find a doctor to hopefully diagnose me with POTS or some kind of dysautonomia. Thanks again ❤️
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:)
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 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.
I was diagnosed without a TTT at 18, I've had symptoms since I was 12 or13, maybe earlier but dissociative amnesia.
Propanolol is a lifesaver, but the fatigue is so unbearable and random.
This is my problem! Propanolol helps so much, but I am an absolute zombie even on a tiny dose 😢
I’ve been struggling with pot’s symptoms since I was 13/14 I remember always being in trouble in cadets for not being able to take part in parades cause I can’t stand up for long times and was put on beta blockers after a severe ‘anxiety attacks’ but it didn’t help my heart rate my heart will race even when I’m lying down chilled and I constantly feel sick and doctors just put me on antacids and after showers I do throw up sometimes I it’s the worst feeling ever but I’m just labelled as a hypochondriac at the doctors but I’m just after a diagnosis. I’ve had a lot of anemia tests but they always come back negative
Try to see a POTS specialist or cardiologist physiologist
I know exactly what you're saying about the fatigue. People think if I take a nap, it will go away! Oh, how, I wish!
I have POTS and it’s extremely hard
I think my body is just flexed subconsciously, constantly, to hold itself together plus probably trying to constrict blood vessels etc., Plus cervical neck instability/reversed curve also leading to my body trying to stabilize and compensate... Plus the heart racing making my body think I'm working out.. yeah, I think that's why I get coat hanger pain and my body just wants to collapse. I got a hammock the other day and wow, my body loved the suspension. Felt like I had had a massage. Try some sort of suspension! Felt so rejuvenating.
Have you tried cold baths; but I really mean cold, like freezing cold. It is really helpful
Eds pots mast cell plus more... living in Florida in summer sucks. I found famotidine helps tremendously for pots and mast cell.
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,
Do you find the compression socks irritate your skin? My eds skin gets impressions from regular socks but I could use help with blood pooling.
Oooh that sounds so annoying. They don’t irritate my skin! But others ones don’t either so I don’t think I’m the best judge. Anyone else in this boat??
I found some spandex compression calf sleeves that are super soft and don't irritate my skin, while also providing great compression to minimize POTS. Perhaps compression calf sleeves might be comfortable for you as well. They're sold where marathon runners get their gear.
Same, you wana give spandax calf sleeves a go for sure i get the 2xu brand
@@polarevolta I get the 2xU brand, too! They rock! :)
Omg I have all this since covid in 2020. I got the coat hanger pain 24/7. I fainted when I got my mri with contrast. They kept telling me its anxiety. I have blood pooling, blurry vision, back neck pain, headaches for 2 years, and brain fog.
This really helped me I’m 16 and I’ve got pots it’s makes me really depressed cause I can’t go college cuz my heart rate goes to 180+ when standing up at first I thought it was anxiety but now I know it’s not
How are you now?
I am 17 and I think I have pots because my heart rate goes up to 120 when standing up
Does pots leads to heart failure ?
@@unnikrishnanpillai4499 update i am 21 and mt heart rate goes to 140 standing did they tell you you got pots ?
I always sleep with 3 pillows on top of eachother instead of one pillow, it really helps
To everyone who sees this comment I have a few questions.
- Did you drink coffee before you found out you had POTS?
- Did you quit drinking after feeling symptoms?
- If you continued to consume a decent amount of caffeine how did it affect your POTS?
Thank you in advance to everyone who answers I’m only asking because I drank a lot of caffeine because I loved coffee and I cut it out hoping it would help my sleep. It didn’t help and I learned I had POTS and coffee may have suppressed my symptoms. I started drinking again recently and have had a 324.7% increase in daily steps before needing to stop but ankles gave out before I could keep going.
I don’t advise anyone to try treating their POTS with caffeine because there’s no conclusive evidence of what it does and for some people it may make symptoms worse. Thank you.
I believe I have pots
How come not everyone gets pots or dislocations with eds hypermobility?
Just like diabetes or cancer or lupus every illness has differebt levels depending in genetics or progression or meds or lidlfe styles ect even the sex
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.
Your smile is an inspiration to anyone with dealing with a chronic condition. 😊
Another hypochondriac whining. Do you have EDS too? Fibromyalgia? Depression and Complex PTSD? Eating disorders, and how which letter of the alphabet do you identify with this week?
i have to sit in the shower unless i’d be like passing out or throwing up every time and it sucks especially since it means i can’t really shower outside of my home
Oh my god, your staring “spell” at 2:38 is something that’s happened me since I was little. Probably since an infant because I know I had staring spells then that got me evaluated for seizures. And I’d have mild POTS symptoms for most of my life that flared up massively when I was fourteen. Luckily, once I started on treatment I responded really well and I consider myself in a remission of sorts. But I still have the occasional POTS symptom, more often than I realize if the staring spell is considered a part of POTS.
You living my last 18/19 years 😢 minus dizziness Everytime getting up (undiagnosed)
Thanks for sharing with us how to live with POTS. please more video 🦋 i ve also the same things and İ don't know how to live with this 🌝
I feel like this after Covid been laying down all day for a month😭🤦♂️
Im Nigerian, and getting a diagnosis is pretty much impossible. Tachycardic, high blood pressure and a terrible aversion to standing up. But absolutely one takes me seriously.
I think POTS is adrenal fatigue.
It's not. It's an autonomic disorder that's extremely different from adrenal fatigue. I'm not sure what would make you say that but if you have a research paper to point to, i'd be interested in seeing it!
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!!!😮
Take .my medicine my light anything sep 6 6th locked law amen 224 Robin St
Thank you so much for this 🥺 I just got diagnosed with POTS yesterday and this helped in so many ways
My doctor has me wearing compression stockings 30-40...big difference in hiw I feel...way better
Hello! Thank you for sharing your day to day with POTS! My sister was just diagnosed with POTS and she’s absolutely petrified and worried how she’s going to be able to help support her family. It breaks my heart! Are individuals with POTS able to work? Any recommendations would help. 😢
My pulse will get up into the 180s when I exercise sometimes and it makes my chest feel weird. Is this normal if I’m exercising?
It might be normal if you're working out hard! But I'm not a doctor and I'd recommend talking to one if you're getting dizzy, faint, or anything else.
Mine would hit 165 when exercising, until I was finally put on decent POTS medications. Definitely speak with a doctor. He or she may want to run you through an exercise stress test when you run on a treadmill while they measure your heart rate with electrodes. Is your POTS managed by medications?
Same
Okay I'm late to this but I just found your channel and UGH TY. I have been trying to get EDS and misc related diagnoses for a few decades now and always question whether or not I have POTS because its hard to accurately measure a quickly changing heartbeat with consumer products, so my numbers vary all over the place. BUT the way you described how all of the symptoms feel, like every one of them is "yes I feel that way too!"
The blood pooling and fatigue of showering is no joke I take pathetically lukewarm baths which although not ideal at least helps me feel better about myself and do some self care. BUT if it’s ever so slightly too warm and I’ll feel terrible for hours or rest of the day. It also sometimes helps my pain too. Ive only been do with POTS so far but drs suspect hEDS, MCAS, and post-concussion syndrome and am going to UVA in the fall for a full work up.
My dysautonomia is from long covid and your videos are great. My wife got me a stool for the shower which saves some energy. I'll get the bike out tomorrow and see how that goes. Cheers!
I had an older Army vet in my jrotc classes help me somewhat. He reminded me to tilt my head from side to side before i actually get up from a sitting position , he thought my fainting spells were my equilbrium being off. Took me 30 years later to realize it was POTS and i was uber dehydrated. So i drink celtic salt with my water, the cardiologist suggested salt tablets but i wasnt happy with the side effects. Thabk you for sharing your journey, i havent tried compression atockings yet although they were also suggested.
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.
What compression socks would you recommend as of 2024?
I can never wash my hair in the shower because the dizziness, etc. is just too much. I wash my hair in the morning by kneeling on the tub side, head under faucet, warm water not hot . I quickly shower before bed so if symptoms kick in I’ll be horizontal not upright and going to sleep anyway. It works for me.
I have pots also and I have switched to only taking baths! It has helped so much
You’re so pretty, I’m sorry you have to go through this. Keep being the strong person you are.
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
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?
Watching Gilmore Girls is helpful for almost any affliction.
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!
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’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
Can Beta Blockers be used if someone with POTS has low BP?
Dulcimerist. I can't find your comment when I clicked on notifications, but I'm looking into clonidine, thanks