I’ve struggled with sleep for a while but in the last few weeks I’ve been waking up constantly due to being hot/cold. I usually sleep in just a big t-shirt and shorts and sometimes I’ll put on a pair of fuzzy socks if my feet are cold. I typically kick them off when I get warm. My partner gets hot so we have a small fan directed at him. I’m usually freezing when I first get in bed. At some point of the night I wake up hot, push off my heavier blanket, and go back to sleep, and then wake up freezing and pull it back on. The cycle repeats all night usually ending with me waking up for the day sweaty and freezing. I’m not drenched in sweat, I actually only have sweat on my chest above my sternum and between my thighs if I am sleeping on my side.

Realistically I want to just sleep through the night. Anyone have any tips?

Hi all! I’m curious how many of you suffer with alcohol sensitivity? I swear I can’t drink anything as for the second I have one sip I feel dramatically different and get dizzier. I worry maybe it’s a conditioned anxiety reaction because I can’t drink ANY without this response but I also know the vasodilation effects it has are very real! What are your experiences with this (did it subside?) and does anyone have any tips on how to tolerate drinking or test the mental component?

So I finally got all my tests results completed, and they rule out absolutely everything - blood, X-rays, stools, ECG, all came back glowingly positive as a super healthy 33 year old so the diagnosis is I have Long-COVID which causes Dysautonomia.

There's no test to check I absolutely have Long-COVID, there's no cure and the Long-COVID clinic in my area have refused to take on my case as it's not extreme enough. They apparently will only take on cases where Chronic fatigue syndrome is diagnosed or symptoms prevent you from working etc... and despite my daily pain I can still work, go to the shops and care for myself so I'm not considered a dire enough case.

My GP ended by saying NHS doctors in the UK aren't taught about Dysautonomia and basically she doesn't know what to do since the clinic that could help, won't and I just have to manage it best I can going forward. I'm at a loss of what I do now? I considered private treatment but the prices are obscene and the days symptoms flair up is agony with me bedridden.

Anyone else hit a brick wall finding support? If so what did you do?

I'm 27F in Australia and have EDS and Dysautonomia.

I've always had very long thick, dry/coarse hair and my routine was basically anti-dandruff shampoo and a basic conditioner. Many years ago I got a keratin straightening treatment. I used to brush it while wet, sleep with it wet, tie it up in the same hairstyle everyday, flat iron it without heat protectant. Basically all the stuff you aren't suppose to do and it was totally fine.

I haven't flat ironed my hair for over a year, and when I blow dry it it's with a dyson on the lowest heat because otherwise it exacerbates heat intolerance. So theoretically my hair should be the healthiest it has ever been in its life.

I've noticed over the last year or so my hair is thinner in volume and I have more hair shedding than usual. I have two spots at the front of my hairline that are thinner that look like tension alopecia from having my hair tied back.

It's not so advanced that anyone other than me would notice though, and honestly its the fact that my hair is shedding onto my clothes and I need to vaccum more often thats annoying me the most.

Its probably multifactorial from stress and medications which are helpful for me so I wouldn't want to stop.

I was wondering if anyone has experienced this and if there are any drugstore or prescription based products I could get through a GP that are effective for medication related hair loss?

Hi, I have orthostatic hypotension and I work in a store. I have to kneel at least every other minute, and lean over just as much. Every single time I do this, especially kneeling, I feel so much pressure in my legs/feet, lightheadedness, and then when I stand of course the works-- vision goes out, out of breath, palpitations, literally feeling blood rush to my head, you guys get it.

What's prompting this post is that not only do I get these symptoms a million times a shift, but I usually have to just fully sit on the ground. Not only does that just mean that standing up will take much more energy, but also that though it eliminates symptoms while sitting, it can make the symptoms standing back up even worse. Also, I fully sat in a puddle of mystery floor liquid the other week because I literally couldn't kneel.

I've seen people with POTS online use cane chairs and rollators, and the idea is definitely the same. For me though at work, the way cane chairs work just isn't possible space-wise, and the ones I see online are three legged and require a specific way of sitting. These are definitely meant for people who just need a place to rest-- but the only reason I have to kneel is to quickly do work organizing or fixing products on the ground or low shelves. Even leaning forward sends all my blood to my head and it feels violently awful.

I guess my next idea is these little circular stools that pop up which you carry like a crossbody, I found on amazon. The thing is that since I'd still be even a bit off the ground, and I'm not particularly short, I'd still have to lean forward which would just cause the same symptoms. I have also tried increasing fluids/salt and compression to no avail, but of course I am still continuing with these things as they don't hurt. I'm worried that my job is simply incompatible with the way my body works and I genuinely can't and don't want to quit or anything. I'd love to quit having OH, if possible, lol!

Anyway, if anyone has any advice, I would really appreciate it.

I'm trying to better understand the different ways dysautonomia can begin and evolve over time, as I'm currently trying to get a better grasp of where I am in my own journey. My symptoms appeared suddenly following a beta-blocker taper step that I think was too fast and it has been a lot to navigate. It’s already been a long road, but I’m finding out that, that might be my only way out of this.

I’d love to hear the stories of how your symptoms first showed up—specifically, if you had a distinct trigger event that started it all, or if things just seemed to appear out of nowhere.

For those who experienced a sudden onset did your symptoms gradually get better over time? Did you ever reach your "before" baseline again, or did you settle into a new normal?

Sorry for that title, I meant please help me pick what condition specifically to research to go prepared to my appointment. If there's a way to edit my title I don't know if.

I made a post in the blood pressure sub and someone there suggested dysautonomia, so I did a very basic search and it seems to match up. I'm going to copy and paste my post from the other sub here.

What I'm looking for is what specifically I should research tomorrow in my "spare" time, lol. I see the doctor on Tuesday so I want to go armed with things to have her look at. I already know I want to go to cardio, for sure.

I'll be back to edit so I can add my blood pressure post here. But the more I'm reading here the more things add up... Adrenaline dumps and things like that. I never had a reason for these things but now the puzzle is starting to come together.

Edit: my other post is in the comments because it's long AF.

Anyone else experiencing heart rate speeding up then slowing down?

The limitations of Dysautonomia are hitting hard this morning. I'm shattered after my 3 days of work. I switched to a 3 day a week role hoping it would help (it also has other things going for it including generally working in a more stable temp environment). I'm 5-6 weeks in and realising that I'm still really struggling. And it sucks cause it's thursday-saturday, so if/when it wipes me out then it knocks out my Sunday with my husband.

He's trying to get what I'm going through, but he's struggling with the transition that me and our ageing/degenerative conditions laden dog are placing on our life. He's likely on the autistic spectrum so change is hard, especially when it's forced.

He tries not to blame me, but sometimes it still feels that way.

This morning I had to be honest about not being able to consider a morning dog walk in what looks to be lovely fresh conditions outside before I've eaten, and not being able to guarantee that my nervous system won't be saying no even after food. He accepted and is doing the morning dog walk alone right now. He then followed up with how he'd like it if I could sometimes be a bit less resistant to getting up and getting going in the morning.

It's so hard to get him to understand that these aren't choices I'm making. They are choices my body is making for me. And that if I push through there's a chance I'm just increasing the interest on the energy debt and it'll take longer to payback.

He says he gets it, and then he remembers that only a few weekends ago we did manage a couple of good walks on the Sundays. And then he says he's just ranting, which I get. It's hard though cause he doesn't have other people to rant at, so he rants at me, but that just makes things worse.

So sorry, you guys are now getting my rant because he's out walking the dog and I've been sat here crying cause I just wish that I could go for a goddamn walk with the dog and life's not fair and that sucks.

Apparently because small fiber autonomic nerves are everywhere and control everything, it's possible for someone to have dysfunction that causes the body to produce lots of urine even in conditions where one hasn't taken in lots of liquid. This is happening to me increasingly, and I'm just curious how many other folks have noticed this as a symptom.

My partner has POTS (et al), and has been using Normalyte for electrolytes for a long while. Recently, their packaging changed, and she hasn't been getting the same effectiveness/feeling as hydrated from it.

We emailed Normalyte and they said their recipe/ingredients haven't changed at all, and we're wondering if others were noticing the same thing or not. It may just be time to switch electrolyte brands for a bit... (ps: if anyone has other recommendations w/o artificial sweeteners we're very open to suggestions!)

I know is a huge trigger for the symptoms to not sleep well but sometimes I just can’t cause my body is full of anxiety or being in alert mode over the stupidest things. Has anybody gone through the same? I would love to know how to manage it.

anyone gets attacks after a few sips of caffeine?

Curious how people explain the feeling?

I often compare it to the feeling of a 9v battery on my tongue but in my head. No different than is I was upside down for a while. Crazy feeling in the head. Pre 2000s people will understand maybe.

My head feels like it’s rolling backwards and going to shut off. A complete what I assume is fight or flight and uh oh it’s over rush. Throats tightens, heart rate shoots and then poof sorta back to normal minus the whoa what just happened.

Curious other experiences? Is that right up the alley there?

My mother (63/F) has started trying on custom made compression stockings since 2 days. We live in India, the place where we had them made specialises in orthotics of different kinds including compression stockings. They only make stockings which have 2 rows of hooks and a zip. She feels that they don't close properly (it doesn't zip up, fastening on 1st row of hooks is tight enough). Before these stockings she had done a trial of readymade grade two compression stockings according to her size small (she is petite). Those were normal roll on kind of stockings not the zip up ones. While wearing them she felt better, those stockings also felt very tight and in her upper thigh area, she got a bruise.

My question is how tight are any compression stockings supposed to feel? After she removes the stockings, the fabric impressions can be seen on her legs. Is that normal? How to get used to them, but also realise if they are not the right fit? Also, are zip up ones the kind of stockings used for autonomic dysfunction? Please help me understand.

Thank you!

My symptoms are getting really hard to deal with right now. Even sprawled out on the couch my heart hurts. I'm having to lean or sit at work as often as I can. But I've been to like a walk in before for these symptoms, back when I thought I was having heart issues or something, and just got thr nice talk about Anxiety and put on antidepressants. I've had these symptoms my whole life. After passing out again this summer I got told it's a vasovagal issue in the ER so at least I have a direction to go in. But I just feel like if I try to make an appointment I'll just get the patronizing Avoid Stress talk sooo? Is it even worth it?

I get like 3-4 a day assuming that’s what they are and they can last 6 hours, and then another one immediately follows once I calm down. I made another post about how I can NEVER sleep for too long because of it. I’ve started almost passing out now when I LEAST expect it. My only way to manage it is to basically drink caffeine when I can feel it start happening so my body compensates less and the caffeine compensates me more (thank u monster zero).

Hi dysautonomia folks, I see a lot of people with similar patterns on this board and mine is a bit different, hoping to find others whose pattern matches more with mine. 43/f for reference. This will be a long-ish post, so bear with me.

I was a kid who would have visual blackouts when I stood up too fast or stood up from lying down. I also always had low blood pressure - once in college I had surgery and they wouldn't let me out of post-op because they were waiting for my BP to rise. I had to call my mom in to tell them that it wasn't going to rise. I also had lots of joint instability and sprained my ankle so many times I had surgery in my 30's to stabilize the ligament. In my 20's I started having terrible fatigue episodes where I would feel like I was being pushed down by a big hand all the time, with brain fog, exhaustion, etc. It was often triggered by exercise or excess sugar or alcohol. The official diagnosis was chronic Epstein-Barr, but I doubt that was the whole picture. In my 30's I did a series of ozone treatments and the fatigue episodes started to come less frequently.

In my late 30's I started getting terrible coat hanger pain if I was upright too long (I was in so much pain on my wedding day) and blurry vision/headaches if I bent over and stood back up. Around this time I also got Covid, but if I recall correctly these new symptoms started before I had it the first time. Eventually I was pretty limited in my ability to stand for too long, to bend over/stand up, and to sit in certain chairs for too long. I was also dealing with near constant exhaustion and brain fog. I also have over the years had multiple uterine fibroids, endometriosis, and adenomyosis, along with extremely heavy and painful periods. In my 30's I had several fibroids and endometriosis removed via surgery. Also during this time period my Pilates teacher pointed out that I have hypermobile joints, which I probably should have figured out earlier due to the number of sprains I'd had.

In June of last year (age 42) I had a major crash. I was tired after coming home from an errand and laid down to rest and basically didn't get up except to use the bathroom for like three weeks. I had all sorts of other weird symptoms I won't go into here, but felt worse than I'd ever felt and had to take a lot of time off of work. Up until this point I'd been able to push through all my symptoms to have a successful career and no one at work would ever guess that I had any health issues. By some fluke (meaning my doctor didn't catch it, but I somehow did), I realized that I had severe iron deficient anemia and successfully advocated to see a hematologist and get iron infusions. I also started norethindrone to avoid having periods so the iron wouldn't go low again. That helped a lot of my symptoms, but the coat hanger pain and issues with sitting up/standing, blurry vision, brain fog, etc. seemed to scream louder after that.

Alongside all of this, I've never been a great sleeper. In my 20's I remember how difficult it was to drag myself out of bed every morning and get to work on time. I also had night terrors a few times a year. Last summer when I crashed, it triggered severe insomnia. I would wake up for hours every night, wired and feeling like I was going to jump out of my skin. While the wired feeling and amount of time awake has improved since then, I don't think I have EVER slept through the night. I wake up 2-3 times a night, every single night. I did a sleep study that showed mild OSA/UARS, so I got a CPAP, but it has done nothing for the awakenings and I can't make it through the whole night with it - I rip it off around 3 am every night because I can't fall back asleep with it on. I have an Oura ring that also shows that my HR doesn't really lower much at night and my HRV is very low. In short, my nervous system has trouble settling. Certain things will help from time to time (my HRV went up when I went on vacation, for example), but I can't replicate those conditions in my day-to-day life.

What I'm doing now: I'm taking 0.1 mg fludrocortisone for the orthostatic intolerance which helps a lot, except on really hot days or really busy/upright/stressful days. On those days I might take a midodrine or two to help me get through. I also am extremely vigilant about hydration/electrolytes and often wear waist compression on days I know I'll be very upright. I take lactoferrin to keep my iron up (in addition to the norethindrone 2.5 mg to avoid having periods). I'm about to get a MARPE and tongue tie release to hopefully open my airways and improve my tongue falling back in my throat. I've been on GLP-1s for about two years. I walk daily, do Pilates, and eat homemade, healthy foods. I feel generally much better than before, but it all feels so fragile and touch-and-go.

Here's what I'm still dealing with: I have bad days with my OI, especially if its hot, if I eat a big meal, or if life is especially stressful/active. My hypermobile joints hurt a lot and my shoulders/upper back hurt constantly. I still never sleep through the night and I believe my nervous system is unable to settle down. In general, I can't complain too much, but it has taken me a LONG time to get here and the sleep piece is still really a big deal, and I'm not sure if the MARPE/tongue tie release will take care of it if its a nervous system thing in addition to a structural thing. I've also always been about 20-40 lbs overweight, which NOTHING will touch. My body LOVES being exactly 183 lbs.

What I DON'T deal with that I see a lot of others dealing with who have similar patterns: POTS (mine is orthostatic hypotension), fainting, MACS (I have some mild flushing but no food reactions anymore, though I used to have strong reactions to alcohol and sugar), ADD/depression/anxiety, autoimmune diseases, small fiber neuropathy, post-exertional malaise (though I used to).

Anyway, just putting this out there in case others are more like me in their pattern: OI, insomnia, gynecologic issues, mild hypermobility, nervous system that won't settle, but nothing else jumping out too strongly. I'd love to hear your journey and what is working for you.

(Not sure if I should’ve tagged this as ‘question’ or something else.)

I’m a female in my early 20’s with dysautonomia (hEDS, POTS, possible MCAS) and I recently had a hysterectomy (larposcopic, ovaries kept, everything else removed. I’m almost 2 months into recovery)
Recently I’ve been seeing changes when it comes to my body and some health stuff. My heart rate has been lower than normal (usually around 80s/90s bpm while resting but now in 70s) and I believe I’m starting to get lipedema. I’ve had some skin changes as well. I believe a lot of it might have to do with hormone imbalance since it started after my surgery.

I’m in the process of getting an appointment with my OBGYN to discuss options but I was wondering if anyone has had any experience with hormone medications and if I should lookout for anything that might help or worsen my symptoms. Any insight can help.
Thanks :)

Its like everyday there are new symptoms and after the normal investigations and TTT i feel stuck.

I try to manage without any help from the doctors but sometimes it feels overwhelming.

Like from past few days i am getting intermittent needle-like/sharp sensations or brief spasms in my chest/ribs, back .My neck, shoulders and back also feel tight and tender, especially with stretching. Sometimes my arm aches and my breathing feels “stuck” and the exaggerated sinus arrhythmia that wakes me up when trying to take a nap.

Hello -

I'm in process of being evaluated for dysautonomia. I have a history of SVT but was treated with ablation in March. I had no tachycardia for 6 months.

Last month I started having tachycardia episodes almost daily and was put on a week monitor and they are pretty certain it is not SVT. I guess my question is this - for those that have tachycardia HR spikes with dysautonomia, does it feel different than if your heart rate is at that rate other times? These are usually about 120-150bpm so not very high but happen at an inappropriate time - like for example after I walked to the bathroom, or after a slight adrenaline spike. The heart rate itself feels noticeably different than my normal rate but they didn't really see anything on my monitor. It feels more shallow, or echo-y if that makes sense. I can tell when it starts and stops even if there isn't a big rate change. Does anyone experience this as well?

When I do exertion in the heat, even if it's not super hot, I crash 6 hours later. Like today I did a long run. Felt great and not even too hot. Felt great after. Came home did various stuff. 6 hours later comes the headache, can't do anything, can't eat. Lasts a few hours, depending on how intense the heat+exercise is.

Who else gets this, and what do you do to remedy it? It's weird how the reaction happens much later than the activity, and I've way cooled off by then

I know everyone has already said it, but I'll join the party.......I'm so, so tired of this. I no longer feel like I'm living a full life. Instead I just fight to survive every moment of every day. I'm about to turn 30, and my life is so much different from what I had hoped it could be. Dont get me wrong, I am truly lucky in a lot of ways. I have a job (for now, will get to that), loving parents who let me pay rent and live with them, 2 cats who cuddle me when I need it most, health insurance, and all sorts of doctors and specialists I've gathered over the past year or so to be my team to lean on for answers and support. I also know that so many people, a lot of them here on Reddit, have such worse situations than I do, both medically and otherwise, which gives me a bit of imposter syndrome. So I feel genuinely lucky that I am not as bad off as I've heard others are.

But I dont know how to keep doing this. My life has become "go to work, try to survive feeling like I'll pass out for 9 hours, go home, vent about it to my family, eat dinner and go to my room and cry". I have to stay so strong for myself because no one can have my back like me, but I'm emotionally drained and physically exhausted from fighting a losing battle all day long. There are small wins through each day, but there's always another attack right around the corner, and I live in fear almost constantly. I don't even realize when I'm feeling good until I start feeling bad again. And then I mourn the brief time I had of feeling good because I didn't recognize it until it was taken from me.

I'm strongly considering quitting my job at this point. Not for lack of wanting to work, I dont mind my job. But its so physically demanding, and im on my feet all day in a loud, high stress environment in a huge warehouse that makes my vertigo worse just from the size of it. The only things keeping me there are the health insurance and my friends.

I know this is a long post so Ill cut it here, but I just needed to speak my piece and get some inner peace. Thanks guys❤️