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Does anyone have any experience with insomnia caused by POTS, especially waking up rapidly after falling asleep? I've got a chronic problem with my sleep where very soon after I drift off I'm brought back to regular consciousness as if I'd heard a loud noise or something similar. It's rapid enough after starting to fall asleep that I'm conscious of the process of beginning to sleep and then the jerking back to wakefulness (like if someone made a banging sound right next to me).

Someone suggested to me that it could be an adrenaline surge due to my POTS and I was wondering if anyone else experiences this? My doctors dismiss it as anxiety but I'm very confident it isn't that as it comes on when I'm very calm and doesn't other times when I'm actually anxious, so doesn't seem to correlate with emotional states.

Historically, I've been good until 82-85° F, but this spring I've started getting woozy at 70° and fully fainted at 74°. I've got a cold loving spouse and 2 cold weather dogs and a kitty who likes to take naps in snow banks, so we kept our house around 62° F all winter because it kept me more mentally present. Not sure if I'm getting worse, or if I just need to acclimate myself to increased temperatures and increase the standard internal temperature of our home so there isn't so much of a difference. I'm wondering about the experiences of others. (Please no Mr. Freeze jokes unless you think you are particularly clever, I appreciate them but have gotten my fill)

Edt - I used speech to text and some of my contractions were missing their requisite apostrophes.

I keep having to use stronger compression, and for more hours out of the day, and my skin is at a breaking point. I can see the ingrown hairs getting worse the more I wear compression, and it starts to get better when I take a break. But I can’t take compression vacations for long, otherwise I can’t do anything. Does anyone else struggle with this? Have you found a solution? I’ve tried exfoliating, dry brushing, shaving, using sugar scrubs & slightly abrasive washcloths, but nothing helps. (I have slightly sensitive skin & it’s gotten dry in the past year which may be due to Sjogren’s or Lupus but that’s only suspected at this time, still waiting on blood test to rule out or confirm.) I also moisturize my skin very well, and I’ve even tried lotion with AHA in it for these ingrown hairs. If anyone has found a solution, PLEASE share it with me! My grandfather stopped growing hair on his lower legs where his socks rubbed his skin, and it only took a few years. At what point does that blessing occur with compression socks? Because after 10+ years of compression use, I’m still waiting lol. I wish laser hair removal was more affordable, because I have very seriously considered that for my whole legs, so my skin doesn’t have to be so bothered by my compression tights & socks anymore. I haven’t tried waxing because before using compression, waxing was already something my skin hated, so I don’t want to irritate it even more. If anyone has any experience with this and found something that gives you relief, please share the secret. I can have self control while I’m awake, but when I’m asleep I scratch at my legs until they’re bruised and bleeding. So I really need to find a fix. I can’t keep abandoning compression and doing nothing that requires me to be upright, until my skin can tolerate the tights again. Thank you so much to anyone who took the time to read all of this, and for any advice offered!

Hey y'all, I struggle with iron deficiency and anemia. I’ve been getting a series of iron infusions every 3 months or so for quite some time now. It will raise my numbers for 6 weeks give or take and drop back down. When my iron drops I have several symptoms and my IST gets bad as well. My hematologist wants me to address my cycles he thinks that’s the root cause but if not we can check for other things.

The problem is I have severe anxiety and terrified of getting it inserted. I’ve read some people feel faint and I HATE that feeling it makes me panic. My OB did prescribe me Valium and Painkillers but I’m also scared of taking any medication with my IST, I don’t even take a Tylenol unless I HAVE to. I’m supposed to go in the morning and I’m seriously thinking about canceling. I know I NEED something to stop this heavy bleeding and hopefully help with my iron but I’m so terrified it’s unreal. I’m also worried it will make my heart start having more PAC/PVC. I got a few of them here and there around my cycle. I was stuck in trigeminy for 8 months last year and I don’t ever want to be in that situation again. It's like a number of things I'm so worried about. What was your experience did it trigger your IST? Are you on metoprolol ER and have taken valium and painkillers? How was the pain? Give me all the details or help calm me some 😟😣🥺

I’ve had POTS symptoms for about 5 months now, my PCP has told me she very much thinks it’s POTS and did all the blood work/bed side tests.

However my insurance is being stingy, and I have to see someone to do an official tilt test. This is fine, because after speaking with the cardiologist and my doctor we’ve pretty much concluded it is POTS.

I am concerned about the test though. I have pretty bad anxiety, and panic attacks in small spaces or feeling trapped. Even seatbelts are hard for me, let alone feeling strapped in. I saw the videos online of it, and it just fills me with fear. That’s a large reason my pcp and I were worried about the test, and just my mental ability to take it.

I usually take anxiety meds for stuff like this, but I’ve been advised not to.

TL;DR; to those who got the test, how bad was it? Is there anything I could do mentally to prepare or expect? Does everyone pass out fully?

I was thinking about those paintings of women fainting from the 1800s and I wonder if it’s dysautonomia related. Do you think there’s any connection to that?

I always wondered if dysautonomia was due to pesticides or plastic usage in recent years and it’s somehow affecting the body, but I’m wondering if it’s been around for longer and no one paid attention to it.

What do you think? Have you come across any old medical journals that describe pots, ist, etc? Do you think it’s due to modern toxic chemical usage or is it something that’s been around for much longer?

things were pretty bad for months. this week after getting off meds and salt by doctors suggestion; i had a good week and then yesterday i had an awful episode again. i went to school this week it was great. yesterday at night i stood up and my chest felt heavy and empty. my heart was beating too slow for my body being stressed. my adrenaline came on horribly.

i didn’t know if id have to go to the er . i didn’t know if id wake up. and things were getting better but now my bp is going into the 90s/50s and im terrified. was this week just to have one more good week before it goes back??!! i have bad ocd & anxiety anyway.. but i woke up today having the same feeling. it’s like when u stand and haven’t eaten in a while. but i have eaten. i’m scared. i’m so sorry for posting so much just want to know if anyone relates. i’m terrified.. i just have this insane doom feeling

I am having laparoscopic surgery next week. I am terrified. I already am having issues with daily dizziness, fatigue, random heart racing/palpitations, heat intolerance etc. It’s a short surgery - should only be 45 mins if everything goes according to plan.

I was wondering if anyone has been affected by the anesthesia? And if so, does it get better with time?

I’m very very anxious, but I need this surgery to potentially diagnose endometriosis.

I was climbing boulders one day with my brother under the summer heat. 8 levels of boulders and I've managed to climb all in the past. This time I was out of breath and dizzy on the 2nd level but insisted on continuing since I'd done it before. I crouched a few times when I got too dizzy but getting up again would make me even more dizzy. Eventually I crouched again even though I knew I'd be dizzy after and asked my brother who was a couple boulders ahead of me for some water. He didn't rly know I was too dizzy so he told me to walk over to him. While I was crouched I looked over and he looked like a Simpson. It was like a yellow filter had been put over my eyes. I ignored it and went over to him. The rest doesn't rly matter but I sat and apparently dropped the bottle while drinking and went face first between 2 boulders TT I've only passed out twice in my life, the first being when I was 10, a long time ago. I've collapsed quite a bit, mainly from getting up too fast and I get dizzy spells like a lot. I'm not anaemic or anything; I've done blood tests to check. My main concern was the Simpson vision tbh. This was 2 years ago and really recently I've been getting blotchy vision and body pain and tremors. I rly don't know if any of it is connected but since the doctors said my blood tests were fine, I ignored it but I'm kinda concerned now since my dizziness hasn't been going away for years now even though I started drinking more water. This became an essay but does any one have any ideas on what this could be because of. TT

My 11 year old son was recently diagnosed with dysautonomia after more than a year of daily fevers, fatigue and generally feeling unwell. We saw several specialists including hematology, gastroenterology and rheumatology.

Two months ago, he passed out at a doctor’s appointment and was hospitalized for a few days while they ruled out epilepsy and other conditions. He tested positive for Epstein Barre and sent home. A follow-up with his rheumatologist is when it was determined that he has dysautonomia, although no official diagnosis is listed in his record. We were sent home with instructions to eat more frequent meals and increase sodium intake and hydration.

His presyncope symptoms seem to be dizziness, tunnel vision and what he describes as his stomach suddenly feeling completely empty. He has experienced this a few times but only passed out the one time.

He has recently switched to cyber school and that has helped significantly since can sleep later and take more breaks and eat/drink as needed.

He has a follow up with the rheumatologist in a few months but we have not been referred to a cardiologist or neurologist. Should I be looking into these options or continue seeing the rheumatologist only?

Also, he was doing really well at first with eating and staying hydrated but recently is not drinking enough and says he’s not thirsty and not hungry. Nothing I say or do seems to have any effect. Any suggestions?

I covet your advice and any help you can offer, as this is all new to us. Thanks!

i started experiencing symptoms of IST 2 months ago. my boyfriend passed in november and my life was basically turned upside down. last week, i was hospitalized and finally given a diagnosis. i'm on bisprolol and corlanor now, but am terrified to try to leave the house. i haven't been to a grocery store in months. since coming home from the hospital, i've left my house twice and barely leave my bed. i took a leave of absence at work and am staying with my parents. i'm 27f and i feel like my life is over. i'm so scared of everything.

I'm in my early 30s and have been relatively healthy my whole life.

In December, I started having a sore throat and figured I had strep because I've had it a couple times as an adult. I was treated for it, and while the sore throat went away, I continued to have mild symptoms like feeling feverish, muscle aches, weakness.

These symptoms progressively got worse and eventually resolved after eight weeks. I felt ok at work during the day but would get home and couldn't do anything but lay on the couch. I would feel like I was on fire and my face would be flushed but my temp was usually no more than 99 degrees. At one point, I was so weak I couldn't hold my infant for more than 30 seconds. I also had several random days of feeling extremely itchy.

I saw several doctors that did extensive workups and the conclusion was I had CMV that maybe caused an autoimmune reaction. This seemed like a reasonable explanation at the time.

A couple of days ago, I started having a sore throat again. Two days later, I was feeling fine during the day but then felt feverish and achy at night. Those symptoms continued yesterday and I felt terrible. I was achy, extremely hot, but my temp was only 97.8.

I'm scared to go through this for eight weeks again like before. It's soul-sucking to feel good during the day, thinking you're better, and then feel awful by the evening over and over again. Has anyone had symptoms similar to this?

I've seen similar posts/comments about ME/CFS and MCAS. MCAS seems possible based on some of the symptoms I've experienced and other chronic issues I have. For example, I always have post nasal drainage and will gag often from it. If I get a bug bite, it'll be red and itchy for almost a week. Someone can barely touch my skin and it'll turn red for an hour or so. Could these things be caused by excessive histamine release?

I appreciate any input.

I don't really know my cause. All I do know is that I never felt back to normal after having my second child and then things started to get weird just after a year he was born. All kinds of weird symtoms like weakness, pins and needles, feeling lightheaded etc.

Add on another year to that when I got covid for the first time followed by my third covid vax 3 months later - all hell broke lose. Although I can't say that's my cause as it started before this...it's just this made me feel much worse and brought a whole new host of symptoms like adrenaline rushes/temperature dysregulation for example.

I'm not on any meds, nor do I feel like I need to be at the moment...but I feel like crap. A general feeling of unwellness most days. Is there any way to heal this/make it go away when you don't really know your cause?

I noticed when I drink water quickly I get dizziness..anyone have this?

Hi all,

I've had weird symptoms for years and years but not as severe as many people and also intermittent.

For example, sometimes.when walking just 100 m or so, I'll get short of breath and massive increase in heart rate. I have hyperhidrosis. Sometimes doing the dishes will cause massive sweating, increase in heart rate, dizziness. Standing up will cause feeling like I'm going to pass out but don't - but this is intermittent. I'm massively intolerant to heat and will get a hugely increased heart rate, shortness of breath, dizziness etc. Also struggle with the cold, so general issues with thermoregulation!

Years ago I had a tilt table test and heart stress test, and it was normal (apart from dripping all over the treadmill). I used to enjoy hiking as a child but often within the first five minutes I'm so dizzy, sweaty and short of breath that I can barely speak and feel like I will pass out / have a heart attack. I get cold hands and poor circulation even when sweating and feeling like I'm exercising. I get bad headaches and often feel exhausted due to this, and painkillers don't work, only sleep seems to help. I tried beta blockers years ago but this made symptoms worse.

Passing the tilt table test made me think it couldn't be POTS but as my symptoms are intermittent, maybe it still could be, or something else.

Any suggestions for things to consider gratefully received, thanks.

I'm mostly recovered from long covid/dysautonomia symptoms but I find that when I do overexert and get some mild PEM (headache, tinnitus, excessive hunger, fatigue, tiredness, slight fever) that my POTS symptoms completely disappear. This is happening today, I woke up headachy and tired and my HR won't go over 80 even when standing, also have only taken half usual beta blocker dosage. The symptoms tend to come back when I'm feeling better though.

Hi everyone! I’m new here and needing some recommendations/advice/experience! I just had a Zio patch which showed inappropriate sinus tachycardia after a fairly extensive cardiac work-up. I saw a cardiologist (who I will ask questions of in follow-up as well!) and prior to my monitor results she told me to increase salt to 5g minimum per day, increase water, wear compression socks, and start on a beta blocker. I’ve been doing all of these things and for the most part feeling better! I am wondering from all of you wonderful people if you have any recommendations for managing this and also if you had continued increased salt intake after receiving an IST diagnosis? Again, I’ll of course ask my doc but also want to get a feel of how to make my life better and what it may look like moving forward.

I have EDS, POTS and was just diagnosed with fibromyalgia. I started Cymbalta 2 weeks ago and it immediately calmed that heavy pain feeling I have. But it has made me so tired and just zombie like. I’m going on vacation next week and wonder if I will be better adjusted by then or if I should maybe stop and wait until I get back to start it? Anyone take this that has advice? It has helped my pain so much but I can’t even sit and have a conversation with my husband much less pack a suitcase.

This has probably been asked before but… did anyone start experiencing “sleep apnea” sorts of symptoms after developing dysautonomia (I just have POTs, but any kind.) I’m talking about nodding off and then jolting awake gasping, as if you had stopped breathing, with the feeling you were about to die. I started getting it occasionally at the same time as my pots symptoms started, repeatedly waking up like this for sometimes hours. I have a feeling it’s caused by anxiety for me, just because it tends to prop up when I’ve been anxious or paranoid, especially paranoid about my health during a bad flare up. But I’m curious if it’s a known dysautonomia symptom/comorbidity or more likely to be psychological.

I came into Walmart feeling ok, then ughhh the darn presyncope started. I panicked and went to look for a bench. I found a short bench in the corner of the shoe department to sit on while I drank water from the bottle I brought in.

I pondered how to get to the check out or will I be stuck here on the bench. I quickly got another item and then bee lined for the self serve check outs. I asked help from my guardian angels.

I have a rollator but didn't feel like sitting on it in a busy aisle with people seeing me. The self counciousness of being seen by others is also a trigger. I did sit on the rollator while scanning my groceries.

I so resent an ex friend who told me in the past that I don't need a rollator and making me feel weird for having one.

I'll continue shopping at Walmart for their benches.

I was overdressed for the humid heat and hadn't had enough sleep this past week.

I (29F) have POTS and am EXTREMELY heat intolerant. I live in the PNW but have my AC running almost year round while sleeping and if not, then the windows are open. My skin is too hot for my partner to touch in the evening. I also can’t stand being outside when visiting family in FL. It immediately makes my body feel so heavy and I sweat profusely.

I’m wondering what others’ symptoms of heat intolerance are? Any tips other than just avoiding all hot weather?

Does anyone else get kinda Brady but it causes a weird feeling in your chest ?

I was sitting watching tv and my chest felt funny so I checked and my hr was 58 which isn't horribly low but I'm wondering if it's common with people who dysautonomia ?

My bp is 101/67, hr is now 62 My hr is going up if I breathe deep or move like always lol

Anyone relate?

I have been waking up in the middle of the night with a heart rate of around 130. It usually happens when I am dreaming and my heart rate only goes up briefly, enough to wake me up but it comes down almost immediately. So far, tests have been normal. Does anyone here experience the same thing? For me, it only happens at night

There’s countless websites on how to activate the vagus nerve, but if it’s over activated, it backfires and causes pre-syncope or syncope. What do you do then? Breathing? Meditation? I haven’t been able to get a clear answer.

I’m 25 F. I’ve had symptoms for over a year but was just officially diagnosed with orthostatic hypotension. I really think I have POTS and CFS too but my doctors have been unresponsive so I haven’t been able to talk to them about those. I haven’t heard a thing from my cardiologist since my first appointment with him in early February, so I’ve been working through his main APRN, but I also haven’t really heard anything from her since late March.

I haven’t had a job for years because I was focusing on school, but now I can’t handle taking classes (even online) and I can’t hold a job because of my health. I can only shower once a week, with help, if I’m lucky. I’m living with my parents because I don’t have nearly enough money to live on my own, not to mention that I can’t really function on my own. I barely leave the house at all, despite wanting to. I’ve been cancelling appointments like the dentist, eye doctor, hair appointments, therapy, etc. because I just don’t have the energy to go and they don’t feel as important. I have no friends nearby that I can spend time with and I can’t leave the house to try to make new friends. I haven’t dated in over 3 years. I’ve been getting more and more depressed because I’ve never felt more stuck and I’m not getting any help or any better, no matter how hard I try. I’ve tried multiple medications which I haven’t tolerated well, I do my best to hydrate and get salt in, I get IVs once a month (not prescribed because my dr refused to prescribe them), I do light exercise when I can, wear compression socks, everything. I’m constantly exhausted even though I do nothing. I feel like shit whenever I’m not sitting or laying down. I’m so frustrated and irritable. I’ve been working on getting a custom wheelchair so I can actually function and leave the house and try to be a semi-normal human, but I feel like I should maybe just give up instead of paying thousands of dollars for a chair. I feel like it’s impossible to make my doctors and parents understand how bad I feel because I try to push through but I’m so over it all.

I have this precisely, and nothing weird has shown on my past EKGs or ultrasound. Curious if anyone else has more knowledge in this field and can answer. It was during my psychogenic non-epileptic seizures which appeared to induce extreme vasovagal syncope episodes via the stress.

My cardiologist and I discussed the possibility of me starting propranlol, but he said he was cautious about starting me on it because it can cause more problems since I experience both low and high bp. I was just curious what everyone else's experience is with it? I'm wanting to weigh my options, since I just experienced full syncope for the first time today.

basically my whole body feels weighed down. the past week has been great (got off meds, dr said to…got off salt pills..) and was able to go to school for the first time in forever. wasn’t feeling many symptoms other than mild insomnia &mild headache & mild tachycardia.

WELL.. today (& yesterday)s different. my whole body feels sore and heavy. my throat feels swollen. head pain that’s very bad. adrenaline dumps that went away for a while. i thought i was recovering ?!

anyway the worst part of this is i feel like i have to breathe manually. i’ve tried to distract myself which helps with the breathing aspect, cause it happens anyway,.., but my throat feels tight still. when i get out of focus, then feel the tightness more & focus on that instead, i am back to manually breathing.

everrrrything hurts. this is so frustrating. i got diagnosed w scoliosis & told i didn’t have a good curve in my neck & it’s backwards or something last summer because of bad back pain but it never hurt like this horribly…not like this HAHAHAHAHAHAHAHhahahahahahahahahhhhh…..help

I just don't know what to do anymore. I feel so scared, how much more can I take?? Having dysautonomia is literally hell on earth. I wouldn't wish this disease on my worst enemy. I'm just here suffering all day, no quality of life at all. On top of all that I have a horrible toxic mother-in-law, but that's a story for another day.

For me it all seems to have started after I was bitten by mosquitos in May-June 2023 and had a massive allergic reaction lasting a long time, I've also had Covid but that was back in early 2020 and then Dec 2021. After that my symptoms started with numbness in my limbs, muscle weakness and within a few days full body loss of sensation. This was all in August 2023. Also I have hEDS and history of trauma to my cervical spine from an accident in 2016.

Fast forward to now and I am dealing with dysautonomia (pretty much every symptom), MCAS like symptoms/Histamine Intolerance, brain fog, daily headaches, daily chest pain, blood pooling, bad circulation, bradycardia, anxiety, low/high blood pressure, severe dehydration, shortness of breath, blurred vision, and the list goes on. I feel like I'm dying and no one helps me.

My rheumatologist diagnosed me with Hypermobile Ehlers Danlos Syndrome in February 2024 (he was the first doctor to understand what I was dealing with, I had been to like 10 before him), and I'm taking H1 and H2 blockers, but everything else is still there. The doctors around don't really have knowledge of dysautonomia. So, I've been basically trying to do things myself. Drinking my electrolyte packets 2-3 times a day, lots of water, and things with salt like chips/pretzels, but even that doesn't help.

Today I feel like I'm flaring really, really bad and I have no idea what is causing it. Was it because I had to drive around yesterday for appointments and got over tired or is it the weather (warmer and high humidity)? Who knows. 😢 I'm drinking a ton of water and right away urinating then I'm parched again and I get these horrible and weird sensations in my chest/stomach.

Is there any hope for us suffering from this horrible condition? In the span of 9 months my whole life has changed and gotten worse. It keeps getting worse. 😢

At the moment I have the state issued health insurance because I lost my job due to this. That's not the best insurance and lots of doctors don't accept it. Soo, even though I have all these issues I was able to get a government job thanks to God, with my Schedule A letter. Now I'm worried about being able to perform my job, I need it though because I need good health insurance to be able to see better doctors. The primary care doc I have is useless, I told her about my blood pooling and all she said was "That's normal, you just need to stand up and move around". Then the Cardiologist I went to was useless and didn't care about my bradycardia that started recently. Waiting to see an Electro Physiologist but my rheumatologist is having a hard time finding one for me that accepts this insurance. Also, I was seen by a horrible Nuerologist who said I don't have small fiber nueropathy because of all my symptoms (even though she never did a test) and suggested my symptoms were psychosomatic, which I know well that they are not.

There's so many things I miss doing, just normal things. Walking in the grocery store, going to the park, eating food that I like (my diet is extremely limited now), being able to sit down and not get sick (when I sit too long I feel sick and have to either stand or lay down). Now everything affects me, from the food I eat, to things I watch or listen to (sounds, images, music), to smells, vibrations (from car or loud sounds), or even just being touched can at times feel like too much. At times I feel overwhelmed or overstimulated. 😢

Just wondering what everyone else does to cope, especially those that have severe symptoms. It's hard to not cry daily. I just don't know what to do anymore. I keep getting doctors that have been awful and no help at all, I feel so let down and frustrated by all this.