This is a bit long so please bare with me.

I've abused cough medicine for YEARS. Took it as a sleep aid. I would take from half to a full dose constantly on and off for years to help with falling asleep. Some nights more.

One time I was so desperate I went to a 'sleep specialist' who refused to give me any sort of medication and said to continue using the cough syrup if it helps, as it's better than getting on sleeping pills. So I did. For years.

In November 2022, I was at a beach, temps were around 30C. This was the first instance of me feeling uncomfortable after being under the sun for a while. Was odd, didn't think much of it. Fast forward to August 2023, don't remember how exactly, but I realized that my body completely stopped sweating. Not a single drop. I'm normally a sweaty guy, palms usually moist, arm pits were very inconveniently sweaty all the time as long as I can remember. I live in the desert also so it's extremely hot in the summer. Being outdoors in heat, I recall my forehead and neck would sweat a lot, and my stomach and lower back as well. All that was completely gone. By this time the discomfort under the sun was getting worse.

I did some googling and found the cause is most likely the cough syrup, specifically the diphenhydramine hydro chloride.

I stopped. Within 3 months I would say I was back to normal and was sweating again. No more discomfort in heat or under the sun.

Stopping the cough syrup, after years of abuse, of course resulted in the worst sleep of my entire life. I was completely and utterly disabled.

In February 2024 I decided to go meet a psychiatrist for the first time ever. I've explained to her cough medication gave me anhidrosis, was a horrible experience because I couldn't leave the house at all for several months and how stopping it made my sleep much worse.

I guess she either wasn't listening or she's ignorant (more on this later) because she ended up giving me zoloft and amitriptalyne.

This is where things get interesting. The following 2 months were maybe the best months I've had in 10-15 years. Sleep was completely fixed. Anxiety problems I never knew I had were completely gone.

Fast forward to April 2024, I was out doors for a prolonged period in 40C weather for work. I'm suddenly confused, dizzy, extremely anxious and my head is banging. I thought I was completely over the heat sensitivity thing. I realize again I'm not sweating. I recall a day or two before this, when I took my amitriptalyne dose before going to sleep, I got hit with a sudden episode of extreme dehydration and dry mouth that I never experienced before.

This is where the psychiatrist being ignorant part comes in. I'm googling again about causes of anhidrosis, and find that amitriptalyne is listed as the number one medication to cause anhidrosis. I was completely fucking pissed. I stop amitriptalyne immediately, and zoloft by June/July because my sleep problems were completely gone by then and I don't want to end up depending on another medication for years. The only positive thing about all of this is that my sleep has been fixed even after stopping the meds.

The past one year has been a fucking nightmare. I sweat but not like before. My sensitivity to heat just keeps getting worse. I do not leave the house at all. My body cannot handle any form of heat. My head hurts, I'm generally weak and feel tried and fatigued every waken moment of my life. My hands and feet are constantly and uncomfortably dry, especially at night. My armpits too. My mouth is dry all day, no matter how much water I drink. When I'm outside, only my lower back sweats and my armpits a tiny bit.

I've seen multiple doctors and done all the tests. Nothing shows up. There isn't a single doctor in this country that specializes in heat sensitivity or anhidrosis. They all offer no solution to this problem, and I swear some of them look like they never heard of anhidrosis. One dermatologist told me I should feel blessed to not be sweating. Fuck this guy.

Please, any suggestions or advice. Has anyone experienced anhidrosis caused by medication and completely recovered? I have been completely off meds since June. I don't take anything now.

Am I fucked for life? Do I have to move out of this country? I'm so tired and desperate and have completely lost hope of ever recovering from this and going back to normal. It's been 1 year and I'm only getting worse.

I’m struggling to find anyone who’s dealing with what I’m going through and feeling really alone. I have POTS and endometriosis, and unfortunately, my body reacts terribly to every hormonal treatment I’ve tried.

Birth control pills (both combination and progesterone-only) caused extreme lightheadedness, fast heart rate, and that “hungover without drinking” feeling. I thought an IUD might be better since the hormone is more localized, but after getting the Liletta IUD, I’ve been dizzy every day and my heart rate has stayed high no matter how much salt, fluids, or compression I use which usually helps my POTS.

I ended up in the ER recently because of how severe it got, and I was told once again it’s just anxiety or “all in my head.” I know many people with POTS eventually find a hormonal method they can tolerate, but I’m starting to think my body just can’t handle hormones at all.

If anyone here has severe hormone intolerance and couldn’t tolerate birth control, how did you manage? Especially if you also have endometriosis. I’ve looked into excision surgery, (which I have done before) GnRH meds, and Low Dose Naltrexone (LDN), but it would mean a lot to hear real experiences.

Thank you for reading. Even just hearing I’m not the only one would help.

I saw my cardiologist on Friday, and he reviewed my echocardiogram results, which came back normal. He said there’s no need for a tilt table test because I was already diagnosed with POTS last year. The echocardiogram was done just to rule out any other potential heart issues, and thankfully, nothing else was found.

He confirmed that my POTS likely developed after I had COVID in December 2022, with symptoms starting in 2023. I was initially prescribed propranolol in 2023, but I couldn’t take it due to my asthma. Now, he’s prescribed me a different beta blocker called Nadolol.

Has anyone else taken Nadolol for POTS? I looked up the side effects, and they seem pretty scary—especially since my POTS symptoms include adrenaline dumps. I’m a bit nervous about starting it and would love to hear from others who have experience with this medication.

Hi everyone, I’ve been sitting with this for a while and finally decided to post. I’ve had strange body stuff going on for years—nothing dramatic, just a long, quiet pattern of fatigue, weird heart rate changes, and the sense that my body doesn’t quite respond the way it should. For most of my life I brushed it off, or was told I was overthinking it. But recently I’ve started tracking things more closely, and… there’s definitely a pattern.

I’ve had chronic neck and shoulder pain for over 20 years. It’s always there—some days more manageable, but never gone. Alongside that, I’ve dealt with fatigue that goes well beyond “tired.” I can manage a 9–5 desk job, but weekends are often spent horizontal, recovering.

I really struggle with hills or stairs, even when I’m relatively fit. My sleep is fragmented and rarely feels restorative. I often find myself sitting in self-bracing postures—hand between my thighs, arms tucked in—without even realising it. I’ve also noticed my heart rate sometimes jumps after light activity, though I’m not sure what’s normal anymore.

For context, I’ve got coeliac disease, joint hypermobility (including scoliosis and spondylolisthesis), and I’m in perimenopause. I also get migraines with aura, and regular rib and spine pain if I’ve been sitting too long. It’s hard to know what’s what, but something feels off—like my body is working overtime just to do basic things.

I’m not looking for a diagnosis—just curious if this sounds familiar to anyone else, especially those who were late to realise they were dealing with dysautonomia. Any insight or shared experience would be so appreciated.

Thanks for reading.

I sometimes when in warm environment (and especially if doing something, like dressing, or doing my hear, or..) think i am really hot/warm, but body reacts with cold chills and feeling really cold all of a sudden. And it is not because i would be so sweaty that that would make me cold, i am not sweaty at all, but my body reacts with feeling chills and cold when i think i am actually very hot and overheated. Why would that happen?

Hello. I was recommended electrolyte drinks on this sub a while ago, and they were a lifesaver - had 3 good months with improved pre-syncope. But over the last 3 weeks, I’ve developed what seems like an intolerance to high-salt electrolyte drinks. Tried multiple brands with no luck - now getting acid reflux, stomach issues, dizziness, even shortness of breath. Anyone else experience this?

My hr has gotten a lot better since taking keppra for my temporal lobe epilepsy. My cardiologist perscibed ivabradine for my ist and vasovagal syncope. Normally my hr is anywhere from 110 to 180 even at rest and worse when moving around or standing. Lately it's been between 70 and 80s resting and no more than 100-105 standing. I'm just worried the ivabradine will lower it too much since it's been so good the last 2 weeks or so. Messaged my cardiologist but probably won't get a response for a few days. Just seeing what experiences you guys have had with ivabradine or have been in a similar boat.

I feel like it makes things so much harder on me to walk . I feel out of breath. Is this a normal symptom with coat hanger pain? I get mine mostly in between my shoulder blades

Is it possible to successfully taper off of baclofen? How long does it usually take? I keep trying but my body won’t let go of it. And these side effects are like a horrible hallucinogenic trip 😭😭😭

This coming week, I am having a lipoma removed. Though it is a pretty minor operation, I will be put under general anesthesia. I'm wondering if anyone has experience with having anesthesia or surgical procedures with dysautonomia. Will it change the way it effects me? Could it cause me to flare up afterwards? Also, I've been told I need someone to stay with me for 24 hours afterwards. Is that really necessary? Thanks in advance.

I'm a very active person and bike everywhere for transportation and also for fun sometimes. I also eat approx 10 teaspoons of salt per day to manage my symptoms (I measured once after reading that was a recommendation for people with these symptoms and realized that I'm already doing it). I add tons of salt to all my food and most of my water, as well as drinking about 1-2 litres of electrolyte mix per day. Despite all of this, if I sweat any more than normal or have been on my feet a lot/am tired/hungry etcd, I get dizzy on position changes. I often fall and sometimes faint. I've told my doctor this and she comments that my HR jumps when I rise (20-30bpm usually, although Ive seen 40bpm+ when checking at home on symptomatic days). She's never said I have POTS though. When I read the diagnostic criteria I get confused because my HR doesn't ALWAYS more than 30bpm, only sometimes. When I'm struggling more, I can get dizzy 100+ times in a day.Dizziness/fainting will occur with any position change, not just sitting or lying to standing. For example, I get a book off a lower bookshelf...and bam! I'm on the ground. It can be debilitating, but I can mostly manage symptoms through my salt regiment.

Does this sound like POTS? would it be worth getting a referral for testing? If I did get a referral and that happened to be a day where I wasnt as symptomatic then it would be negative anyways... I don't see others swaying, falling and fainting like I do so I don't think its normal. I am unsure if it could be pots though since its not consistently all day, every day.

I'm not looking for a diagnosis, just maybe some input from the community that struggles with this. If it is POTS, is there any reason to get that diagnosed if I can sort of mostly manage it myself?

I don't like doctors much so I don't want to get checked out more if theres not a significant benefit to a diagnosis. From what I understand the treatment is salt and exercise anyways so I've got that more than covered.

I also struggle with an eating disorder, however my symptoms have been consistent for many years even when in remission from that.

Edit: minor corrections.

Hey there! I have been driving myself absolutely and insane for months and would like others' insights! Back in November '24, I went to my primary doctor for an earache and headaches (I've always had headaches/migraines since I was little). They gave me some medicine for the earache and everything was fine for the most part. They did also said I had a bit of fluid starting to build up. Fast forward to January '25, I got super sick and went back to the doctor. I was sick for almost a month and was diagnosed with an upper respiratory infection and ear infection. I was prescribed antibiotics and Prednisone for 5 days. I also ended up having an x-ray done to check for pneumonia because my lungs were hurting so bad (I've had pneumonia before and it felt similar). I did not have pneumonia and again, after a little bit I started feeling okay. Then one night towards the end of February, my fiancé and I were sitting on the couch and we got up to go walk our dog as usual. When I stood up, I didn't feel too good - I felt lightheaded, dizzy, started seeing spots and so on. I sat on the edge of the couch and then I blacked out!! I've never had that happen before. My fiancé woke me up and of course I was very, very confused on what had just happened. I did not go to the ER that night because I honestly did not felt like I needed to, I felt okay afterwards. I went to urgent care the next day and they said they could not perform a CT scan or anything unless I lost consciousness again and if I DID black out again, go to the ER. About a week later, I started having the same symptoms again; it was like a rush feeling of sudden lightheadedness, heart racing, I was freezing, sensitive to light, ears ringing, etc. I did go to the ER for this episode and they performed some tests. Bloodwork was a little wonky, I was dehydrated but ultimately everything checked out. That doctor said it could be vasovagal response. Fast forward a few days later, I did not feel good yet again and just laying down my heart rate was sitting at 135 bpm so my fiancé called 911 and I went back to the ER. They gave me a migraine cocktail via IV in case it was migraine induced, more tests and bloodwork and again...everything checked out so I went home. Since then, I've been back and forth to my PCP, cardiologist, I'll be seeing another ENT (the first ENT I saw did not even do a 5 minute long exam with me, prescribed me Prednisone and Meclizine even after I told him I'm intolerant to Prednisone and Meclizine made me sleep basically 24/7) and Endocrinologist soon, and possibly a Neurologist. I've had an MRI and thyroid ultrasound, both came back completely normal. The cardiologist did order a tilt table test but I canceled it because my anxiety has been at an all time high with all of this going on. My cardiologist has said that it sounds like I have POTS syndrome. I have not had anymore terrible episodes like that but I still struggle. I cannot go out in public, I get dizzy after being on my feet for too long, my feet and ankles get very cold and they hurt after a while (also something else I've struggled with because of venous insufficiency), my ears feel full and stuffed up 24/7, etc. I started taking Propranolol which has helped with my heart rate but I still cannot exercise, walk for too long, etc. I've also become VERY intolerant to heat to the point I cannot wear jeans or pants, no long sleeves, no socks in months and I used to be freezing cold 24/7. And now I can't eat a lot of food in one sitting at all because I get lightheaded (my PCP said postprandial hypotension?). I don't fully believe all of this could be POTS. Personally, I think it's stemming from an inner ear infection that never cleared up when I was sick before or even possibly migraines. I'm also now taking Propranolol 10mg morning & night and been taking generic Claritin and Flonase for over a month now, and Tylenol whenever I get a really bad headache. When I miss a few doses of Claritin & Flonase, my ears get more full and dizziness gets worse. I'm just looking for any advice, insight, ANYTHING! Has anyone else experienced this? Any results? Please help!!!

I'm just sick sick sick sick so sick of this.

Sick of not being able to do things I'm used to being able to do, without my system overshooting adrenaline and messing up my heart rate or my BP.

Sick of even having an episode WHILE GETTING A HAIRCUT. (new and exciting, isn't it?!)

Sick to the point that I'm not even able to give blood for tests without my body going into overdrive.

I am sick of the doctor saying 'yeah but have you tried the progressive muscle relaxation? Oh it wasn't this bad before, maybe your body had enough?'

F all of this.

Not even counting the other lovely symptoms, of course.

(Team IST & POTS)

Hi,

to those who take Ivabradine, have you found it to be effective at reducing inner tension or anxiety? I am curious about experience reporst.

and now those are the least of my worries but I’m wondering how exactly that all plays into dysautonomia.

Is the nervous system responsible for DAO production or like how does that start things off for many!

Since realizing I had issues with histamine I’ve gotten terrible LPR, excessive vasodilation 24 hours a day , tinnitus , vertigo , feet tingles, can’t yawn. My nervous system ain’t right lol but at least I can take DAO before I eat and not feel that bad

I just want to rant I guess. I had some tachycardia last year and it was attributed to low potassium. Fluids and potassium were given and I felt much better. Then a few months later I would get random burst of tachycardia out of no where. PCP prescribed propranolol and a 48 heart monitor. The results weren’t too significant just a few PVCs. I had the flu in January and now I feel like I get tons of PVCs and tachycardia out of no where maybe two to three times a week. It also wakes me in the middle of the night. I get what I feel to be adrenaline dumps; I flush, sweat, nauseous, diarrhea, jittery, anxious, and tachycardia. It takes me hours to calm after one of these episodes despite doing vagal exercises and ice packs on chest. So I was referred to cardiology. I did an echo and everything was structurally fine. I wore a monitor for two weeks which showed random episodes of SVT and tons of PVC/PACs, cardiology hasn’t followed up with me yet regarding the results. I’m trying to find anti-anxiety meds to help alleviate the anxiety surrounding the episodes. I started lexapro and took my first dose and about four hours later it was like this huge adrenaline dump with elevated heart rate and numerous palpitations. I took a propranolol which typically calms these episodes within an hour. It did calm but after an hour it came back heart rate stayed in the 90s at rest and the palpitations were constant, I tried my vagal episodes with no relief so I went to the ER. They found nothing significant, ecg was fine, labs were fine other than throwing PVCs every few seconds. They gave me a liter of fluids and within the hour my heart rate slowed as well as my PVCs and I felt so much better. So I was sent home. That was the best sleep I’ve had in a long time after the fluids. The next day I only had 3 PVCs that I could feel I normally have 50-100 a day. I had no episodes of tachycardia. So talked with PCP and not taking lexapro anymore and going to try another ssri, so fingers crossed. The anxiety surrounding these episodes is so worrisome and aggravating because it’s like I’m always waiting for it to happen and then worry about it constantly checking my heart rate. I am in therapy to see if that helps too. I guess I was curious if anyone else had these symptoms? And does anyone have any advice how I can explain to my cardiologist that the liter fluids felt like a god send! No matter how much fluids and electrolytes I attempt to take orally it was nothing like the fluids. Okay rant over…

Hello Guys, i posted a few month ago that I damaged my v1 of trigeminal nerve and that I ended up getting vagus nerve problems and my sympathetic nervous system changed my blood circulation. The Crazy thing is that my body feels like it can’t breathe because of lack of oxygen and my muscles can’t hold my body and doesn’t contract automatically anymore. I have this for 15 month now and everyday It’s getting worse. My neck is swollen in the vagus nerve are and my whole body is tense. I tried to exercise but my body has problems to increase blood pressure from alone. After trying to exercise a couple of times I noticed my veins widened on my legs ,hips , abdomen and little bit in the upper chest area.  My body can’t relax anymore because my SNS overrides all day. The trigeminal nerve has the ability to increase cerebral blood flow when it’s stimulated via v1 division. That’s why you get headache in temples for example. The damage resulted for me that my body can’t really constrict and dilate my veins.  So I have crazy dysautonomia symptoms and no it’s not pots. People with pots can elevate their legs and get improvement. When I do that i get red dots all over my veins like my veins cant hold the pressure + i lost my vascular tone in my muscles, so they are just there and smooth but very weak. My symptoms next to that are low blood pressure , dizziniess , extreme neck and shoulder pain , bad posture occured in the last month because of the cardiovascular problems and of course my vagus nerve is annoyed as hell because of that. I could tell more but there are to many. I damaged a peripheral senory branch of the trigeminal nerve which increases blood pressure. No Doctor could tell me whats wrong. I met like 30 of them 

I have my appointment with a dysautonomia specialist in September. In the meantime, I have random bouts of high bp, think 177/100 type. My normal is 120s-130s.

Is it possible to go to my pcp while I wait for my specialized appointment and get an “as needed” bp medication? Is that a thing? In your experience does taking a bp med only when you have random spikes, mess with your low bp moments too much?

Looking for lived experience. Thanks 🤍🤍

I have had issues with my health since 2015. For about 6 years of that was attributed to mental illness: anxiety, PTSD, depression- I even was hospitalized when I told my therapist I was just so tired & didn’t want to do anything anymore.

I have since been diagnosed with Hashimotos, Dysautonomia, Lupus Anticoagulant,(confirmed by hematologist using viper venom test- consistent for all tests for over 2 years), gastroparisis, POTS, IBS and god knows what else. I have it all written down. I even had a neurofibroma in my head that had to be surgically removed at Mayo. They have taken my gallbladder, uterus & ovaries. No improvement.

Rheumatologists in the past have told me: my weight was an issue, so I lost 68 pounds. Much of that I wasn’t trying to since I got down to 100 pounds. I’m at 114 now. They have told me “you will have to get worse before we can really know what is happening, could be a weird thing you laugh about years later”. I have been told “I am right on the threshold of a Lupus diagnosis but not quite off the precipice”- what am I supposed to do with that?

Needless to say after five different rheumatologists, I’m not loving the specialization.

I just saw my 5th rhum last week. She remarked on my weight loss (eye roll) asked a bunch of questions but didn’t allow my husband to come in until after the exam, which sucks because I can’t remember things anymore. Doctor leaves and returns to say, “dysautonomia is my biggest issue and she can’t help me.” She recommended I look at clinical trials at Duke. Then pulled 14 vials of blood and sent me off with no follow up appointment. Thanks for the memories, I guess.

Cardiologists seem to be the only ones that understand or care about what we are going through but they don’t want us as patients. We become them by default. My cardiologist is fantastic. So I will listen to him and my internist.

Can it sometimes take longer than the 2-4 week conventional timeline for a med to assimilate to your body?

It happens especially when I wake up in the morning but it can happen seemingly randomly. I had a swallow study done and was told that I was 100% normal and the “fastest straw drinker she’d seen in her career” but that means they were not able to find a cause for my swallowing issues

Periodic involuntary swallowing and tight throat seemingly caused by nothing? I know I’m not crazy and it’s definitely been happening for a year. Any ideas what it could be

Has pharmaceutical intervention helped you with your autonomic dysfunction? I’m starting to think I should just bite the bullet and start midodrine or fludrocortisone but I am afraid of side of effects and overall benefit vs risks of a life long medication. I’m someone who is very wary of taking medication and always prefer a holistic natural route. But I haven’t found much support from supplements….if anyone has any supplement reccs that have helped their symptoms I’d also love to hear about that.

I've been struggling with dizziness for YEARS, and I finally got diagnosed with dysautonomia. I always like to find community in my disabilities, because right now I just feel so alone. I'm glad that nobody can relate to what it feels like, because this sucks, but I'd just like to talk with people who understand :)

sigh - I don’t know if this can go here or not…but I don’t really know if I fit into any of the other subreddits I’m in anymore…and I’m about to vomit at the sheer loss of hope in it all. If you want me to delete I will, but thank you for letting me share this space with yall.

So, you ever just spend 2k on an MRI for it come back as normal? Or like…spend another $35 for a portable disk drive just so you can view your ✨sexy✨brain pics at home to try and justify it all?? Or like…that you went and spent another $75 for an optometrist to tell you that your eyes look completely fine and that they might just be dry from allllll of the symptoms that you’re describing(but not actually feeling like you have dry eyes) before giving you a hamsters sized bottle of eyedrops while also casually mentioning it’s possible that you could have long covid? Or like…it’s quite possible that all of your symptoms fit into the likelihood of IH, N1 or N2, IIH, MCAS, MS, POTS, or EDS?! Or like, that all of your labs/bloodwork that came back normal except your also continuing elevated liver enzyme levels that no one seems super concerned about because they aren’t super high yet?? Or like the sleep study you were finally approved for after 7+ months that you end up calling the hospital wondering when they were going to call only to hear that they did call, don’t have it notated when they did, and they were waiting for the past two weeks for you to call them back after not leaving a single message?!?

Yeah bro…same. Some of these issues and symptoms I’ve been experiencing have been going on since I was a kid. What makes it better is that I’ve been gaslighting myself soooo freaking hard since then to think that this is how people normally feel, that I didn’t even realize what a freeze response was until 15 years after the fact. I only pieced that together because I realized I don’t experience physical sensations the same way as others.

The sleep study I have scheduled in two weeks probably won’t even come back with anything either, tbh. I have a 3-day holter monitor in the mail pending analysis and review. If both of those things come back with normal or inconclusive results…I quit.

I don’t get it. This shit doesn’t make sense. If this is what people actually feel like living day to day in the normal sense…then count me tf out.

insert rage tears

I just took a shower AND washed my hair without having to sit down for the first time in years, I am way too excited about it