I’ve had some sort of nervous system issue since May, triggered by issues with my levothyroxine dose. It got significantly worse following an ER visit in early June. It calmed down a couple months after that, but resurged when I was put on too many different meds in a short period of time. It eased up again until a couple of weeks ago. This time the trigger was three (low) doses of Vitamin D over several days.

Now everything I drink just comes out, and I’m so dehydrated. I’ve been relying on electrolytes since late May and when I forget them I get dizzy. Sometimes my heart rate gets out of control, but I’ve been able to avoid my beta blocker for over a month. Any food I’m sensitive to causes significant GI issues. Same with alcohol, certain supplements, or certain meds. I am exhausted, my body wakes me up too early, and my work is heavily impacted. Sometimes I don’t digest my pills, which causes withdrawal symptoms. I have frequent abdominal pain that makes all these issues worse. If my GI issues fully return, I will be screwed because every GI med/treatment made either my nervous system or electrolyte balance worse.

I’m trying not to add anything new; it was dumb enough to try the vitamin D. But before taking it a couple weeks ago, I was feeling optimistic. I was just starting to run again, was planning on going back to the gym, and was more active socially. I thought I was returning to the way my life was before these issues started. This has been going on for months. It is making me put my life plans on hold, and cancel social plans. I tell myself “I’ll start when I’m better” but it doesn’t seem to end.

Every time I see improvement something happens to screw things up again. I’ve been trying to be optimistic but I’m losing hope. All tests have showed up normal. If a doctor tells me I’ll have to deal with this for the rest of my life, I might give up. I’m trying to tell myself that this is a temporary setback caused by the vitamin d, but I might unintentionally take something in the future that starts the cycle all over again. After the ER visit I basically peed out everything I drank for five weeks straight and this time it’s been almost two weeks of the same. I’m scared and tired. The longer it lasts the worse it will get.

I’ve tried everything and nothing seems to help (except magnesium glycinate, but it dehydrated me more and caused more GI issues). Has anyone had their symptoms improve, or have been able to take back their lives? I’m so tired and I just need some hope.

Until about a month ago, I never used to have such a low heart rate. Recently, I have started noticing a lower heart rate at rest. It is usually around 63–65 bpm, but when I lie down in bed for a long time, it drops to around 53–55 bpm.

I haven’t made any significant lifestyle changes. I still occasionally work as a waitress at events, where I am constantly moving for around 12 hours. However, I only do this two or three times a month, and not necessarily every month. I don’t do any regular exercise.

My heart rate does increase when I move around, cough, stand up, or walk. However, the low heart rate genuinely worries me because I can feel it dropping, almost as if my heart is applying the brakes.

While I’m asleep, my heart rate is usually between 45 and 55 bpm.

My main concern is that this is a new change for me, as I never used to have such a low resting heart rate before.

it was like 53 sleeping and 68-73 resting not mid 50’😵‍💫

anyone with similar experience?

I'm new to dysautonomia

Recently downloaded Tachymon, i genuinely do love the concept of being able to easily track my heart rate that way, but today i noticed while checking the graphs in the health app that when the app isn’t recording, i have single numbers as a heart rate vs when the app is monitoring, there’s always a range for each singular minute.

Am i making sense? Just wanted to see if others get that too since i started freaking out about it thinking my heart rate is just changing and jumping too much every minute.

hi all. i’m applying for my first job and i am so nervous about interviews because things like that trigger a flare and i just can’t think and could lead to me passing out. how do y’all deal with this? im scared to even go to interviews due to this, or it becoming too much that i just can’t think and they’ll just reject me on the spot because of the answers i’d give. i have POTS and VVS. i also have anxiety.

Hi everyone!

I finally had my TTT today and at the beginning I was disappointed and thought nothing would come of it because I wasn’t really feeling any symptoms except when they initially tilted me up to the different phases.

I noticed at about 26 minute mark I started yawning and feeling really tired, but I thought it was because I woke up at 6am for the appointment.

Then at 36 minutes, I started feeling flushed and had just an overall bad feeling along with slight vision black spots and dizziness/ swaying, so I told the techs. Then they immediately laid me back and I felt disappointed because I thought I could’ve pushed myself further. I did notice I was not tired once they laid me back. When I asked at the end they said they didn’t stop the test because of me having symptoms but my BP had dropped to 68/33 shortly after I started feeling bad and I started having more variation and slight slowing of my heart rate.

Does anyone else have experiences with taking so long to evoke symptoms and what was your experience after with diagnoses and treatment? I know I need to wait for my doctor to give his input, but I am just wondering what everyone else’s experiences were.

For the last week any time I wake up at all my entire body is shaking, I don’t think it’s waking me up but it’s just happening a few seconds after. Like I can physically see it. It’s not like violently but more like I’m vibrating. I have like zero other symptoms than recent internal buzzing in my legs and a bit of nerve pain. But I feel fine even when I’m shaking so I don’t know what could be causing it?

I am in a position where I have no choice but to get a job, even a part time job. It's difficult for me to be on my feet. I have been out of the workforce for 3 years, can't drive, and have no education or skills. I feel like I'm screwed. I've been applying for remote jobs for months but they're either scams or extremely competitive. I've been considering working at Subway, since I worked there in highschool and the kitchen isn't too hot. But I know I'd only be able to manage 3 hour shifts, maybe 15hrs a week. Anyone have any advice? I'm only 25 and have been denied disability, I'm gonna try again but who knows how long that'll take. Thanks.

I just got an interview for a job! It's at a small restaurant/bakery that's locally owned. I really want it because it's super convenient for me and seems like a good place to work.

They would like to hire me for prep cooking as well as working service. My issue is that I have mild dysautonomia/pots that doesn't effect me much in my daily life, except my one trigger for feeling sick or fainting is cooking. Standing still for long periods of times causes presyncope symptoms for me. One of the 2 times I fainted was when I was chopping carrots in a kitchen. That was like 2 years ago however, and I think that I could probably push through it with out a stool, but I would feel awful often.

Should I mention that I am fully capable for doing this job, but that I would need a stool if I'm prepping food standing for a while? I heard that I should only mention that I need accommodations after I get the job, but I want to be honest and clear so they don't get a bad impression.

I am a little nervous that they might feel like they are taking a risk on me for being inexperienced and if they see I need accommodations, they'll decide to go another direction.

Hi everyone!

I’m a 38Yo F, and I stopped taking nebivolol (Nebilet) 2.5 mg 15 days ago, after discussing it with my cardiologist.

During these two weeks, and I’ve noticed some significant changes in how my body responds to physical activity.

My resting heart rate has increased slightly, from around 65 bpm to 70 bpm, which doesn’t really concern me.

**What surprises me is how much higher my heart rate gets during exercise, even when I feel completely fine.**

For example, today I went on a 5.4 km walk through a hilly forest. My average heart rate was 150 bpm, with a maximum of 182 bpm.

Yet I felt great throughout the walk. I was breathing comfortably through my nose, my legs felt strong, and the effort felt relatively easy, even on the hills. I recovered quickly afterwards.

It’s almost as if my heart rate and my perceived level of effort don’t match.

I’ve also noticed that my body feels more physically reactive to stress, and I’ve occasionally experienced fatigue and mild breathlessness during everyday activities.

**I’m curious about other people’s experiences after stopping nebivolol or other beta blockers.**

I’m being followed by my cardiologist and have a Holter monitor scheduled soon.

I’d really appreciate hearing from anyone who’s been through something similar, especially those who successfully stayed off beta blockers.

Thanks!

I haven't been diagnosed with POTS but I struggle with related symptoms.

One of the worst is that I cannot eat vegetables as they are too strong of a diuretic for me. I will pee too much, too frequently and get horrible muscle cramps. Broccoli and asparagus are the worst but even squash, spinach, kale, etc are offenders. Even when I take in extra salt I will always have this reaction. I love vegetables and want to eat healthy and hate that I have to avoid them. Does anyone else have this problem? What is it about vegetables that do this to me?

I’ve had limited improvement with other treatments and my neuroimmunologist says Rituximab is the next step for my autoimmune autonomic ganglionopathy. I like the idea that it’s only every 6 months versus the monthly routine I’m on now but risks are scary.

Anyone else on it and willing to share your experience?

Curious to hear from anyone who has had endocrinology testing to rule out (N)CAH (Nonclassical) Congenital Adrenal Hyperplasia and differentiate from PCOS. I’m curious how others with dysautonomia have fared with this test.

As I understand it, the ACTH stim test happens early in the morning, fasting, requires a blood draw, injection to stimulate cortisol production, waiting period, and subsequent blood draw. 😵‍💫 Is this the final boss of bloodwork? 😂

I developed IST and SVT after getting some kind of virus (probably flu or covid if I had to guess). Because of that I’m kind of scared to get vaccinated for this winter, because any kind of cold/flu symptoms cause my heart rate to increase a LOT. I’m going to anyways, since whatever side effects I get from the vaccine will be better than the actual illness, but I’m still wondering- did anyone have any negative cardiac side effects after getting theirs? Thanks to whoever answers

Hey! Im 33F and struggling a lot with health issues. I have been diagnosed with pots since 2012 but symptoms have gotten progressively worst for the last 2 years and since August im mostly bed bound. It just feels like my body failed, gastric issues, nausea, constipation bloating, dilated pupils, piloerections, pins and needles in my hand and feet, worst chronich pain in my neck and lower abdomen (this is pretty chronch) but not it's worst with vertigo, like could not stand for a while (o also tmj issue which probably does not help), worst disautonomoa, like so hard to walk (before I could hike volcanos), inability to regulate temperature like I cannot cool down or worm.up some times (just out of nowhere) horrible night sweats (wake up at least three times drenched) my bladder issues are also worst like now I have pain like uti 24/7 but no infection and frequent urination. My Brian fog is worst, like I don't remember words some times, and I feel dizzy and palpitations and lightheaded like I am about to faint but my bp and hr are all normal. Sugar levels also seem ok. O am really confused and have been to over 40 doctors and they really dont know what to do with me if they even take me seriously (im in mexico). I have increased salt (salt tables and electrolites and wear compression garmets but have seen no change. Honestly Im mostly house bound atm.

Just need to know if it possible to get better, because im feeling a bit desperate and im.starting to lose hope and wondering why I keep holding on... it did not used to be this bad... I have had autoinmune tests (negative ana, rheumatoid factor, celiac, etc).. so I dont know what is causing this. Im scared and just wanna hear what the future likely looks like.

Could breathlessness and air hunger be related to dysautonomia?
Since December, I’ve been experiencing episodes of breathlessness and air hunger. Around the time this started, I was going through caffeine withdrawal and began feeling unwell. I’m not sure whether that’s related, but that’s when I first noticed the breathing symptoms.
Sometimes I feel like I need to catch my breath or like I’m not getting quite enough air. From my doctors’ perspective, everything else seems fine, so I’m trying to understand what could be causing this.
Has anyone with dysautonomia experienced something similar, especially with breathing symptoms being their main issue? I know Reddit can’t diagnose me, but I’d appreciate hearing about your experiences and what you discussed with your doctor.

Do you feel like they really do make a difference in your ability to manage symptoms? I have my MIL’s old Apple Watch right now and the hr monitoring is lacking a bit for what I want, but I’m scared of having TOO much info. I’ve read some other posts that people have started to feel better the less they track, but honestly I feel like I’m floundering and don’t fully understand how to pace myself and live with dysautonomia.
So any pros/cons, I’m all ears!

Has anyone experienced this? The best way I can describe it is being in a car with the gas pressed completely down in the brake pressed completely down. I am almost 46 years old and I have been like this every single day of my life since I was 22 years old. I spent majority of my twenties and 30s just debilitated and in a panic and just extremely hard time functioning, I couldn't work, I would go to doctor after doctor after doctor trying to find out what's wrong everything would come back normal, I would try anxiety medications to settle me, none worked, I would try antidepressants, none worked I would try sleeping medicine to combat some of the insomnia, no sleeping pills worked it's like nothing tones this down.

Fast forward many many years, about 2 years ago I learned about my nervous system and it really explained why I was really having a difficult time relaxing. Like I have not felt true relaxation, refreshing sleep, I have a complete inability to nap no matter how little sleep I get, and honestly I feel like the only person on the planet that has lived like this.

Once I learned about the nervous system it made me feel a little better mentally just knowing that this had an end date, but that has been hijacked by perimenopause. New and worsening symptoms. It's been devastating to say the least. I have never had medical interventions work for me so I am just literally at a loss.

We can forego the perimenopause talk for now, I just really really really want to hear from anybody that has experienced what I am experiencing in my system from GHIA. 🩷

Anything over 72 degrees and I sweat just from existing. Thats not even counting moving around which lowers that number to like 67 degrees.

Keeping my world that cold is expensive, inconsiderate, and seemingly impossible.

I live with a partner who I love and she spent the entire summer bundled up when in our home together just so id be a bit more comfortable.

But somehow it feels like its getting worse. Over heating feels even hotter than it did like 2 months ago.

And sex is impossible cause it feels like I'm in a broiler while trying to have this intimate moment.

I'm tired of always needing a fan, or being sticky from extra sweat.

This was an issue growing up for me, but once I started taking anti depressants like 6 years ago and its only gotten worse.

And every summer is hotter than the last so even though we're approaching winter, the only time of year I enjoy being outside, I just know we'll be right back here come May. (I live in Coastal Virginia, its basically swamp land but paved with asphalt everywhere.)

Hi folks, I have IST and have been really craving matcha recently, but I am incredibly sensitive to caffeine, so even a small matcha latte increases my HR & causes a crash later in the day :( Has anyone found a brand of decaf matcha that actually tastes okay and works for similar caffeine sensitivity? I can typically tolerate a Coke or Dr. Pepper fairly well, but just not a matcha latte, even homemade or Starbucks 😔 just hoping for a small treat, I really miss the freedom of just going out and getting a drink without worrying about the effects :( I also unfortunately can’t have milk or nuts, so just pure matcha powder suggestions if possible please! 🙏🏻 Thanks :)

Hello everyone

I had been diagnosed with tachycardia and high BP in December 2023 after i suddenly had in panic attack during sleep and after that I went through several test including MRI and EEG all came back normal but after that incident my body just developed a fear of sleeping

so from that time I had multiple ecgs and multiple Echos all come back normal and show just signs of sinus tachycardia and in the echocardiography also there is just wearing ejection fraction rangeen from 55 to 65 and rest is normal but whenever I have food typically in the evening I always have taking Idea and had high BP also this was going on for like 3 years

then and June 2026 I noticed that My tachycardia was there to mainly changes while standing up my heartbeat increased so I got to my doctor and they ordered a 24 hour holter monitor and because I noticed during the time that my resting heartbeat had become less from my usual self it had come down to you know 60 to 65 and my BP which used to remain in the 130 by 90s sometimes 140 also had come down to 120 over 80 and sometimes 75 also so I was frightened why sudden change after that I had another Eco that also came back normal and after the holter monitor doctor give me a diagnosis of pots but

in recent 15 days I have noticed that the BP in both my arms is different it's sometimes has a 20 point difference also and sometimes come identical also after 3/4 readings but it has 10 to 12 point differential as a average and I also noticed my right I am BP shows 102 by 68 as an average and my left arm BP is also less now so it shows 112 by 68 and sometimes 70 also but the average BP has become less although the medicine has not been changed i am taking propranolol 40 mg long acting and i have not done any weight loss also so how my bp is taking low now is it because of pots, dysautonomia or something else the doctor did Doppler also on both my arms it showed no stenosis and after taking a reduced 20 mg dose also for a day bp shows in same range

i am very frightened that i am developing some type of automic failure or heart failure or some serious disease and no one takes me seriously because of my age and in india where there is no awareness about pots or dysautonomia and one more thing even when my arm is slightly not in a correct while reading bp it shows wrong reading very quickly i dont know my nerves are sensitive I don't know.

I get jump scared and jolting of the body for a second accopmanied by rapid heart rate increase when an unexpected source of sound appears like when someone calls me from behind when i dont expect, neighbour opening the door in the middle of the night, plates falling down in a silent room when these things happen I get a jolt in my body.

What is happening and whats the cause of this? I have no stress or any anxiety in my life.

I never had a problem like this in my life. It started in 2021 when I was 30 after usijg minoxidil for 3 months daily

Hello everyone. So as a summary of my situation, I’m a teenager who is stuck at home due to my Autoimmune Autonomic Ganglionopathy and all my friends I already had are also disabled, which makes it hard for them to talk too. Does anyone know anywhere that’s safe for teenagers like me who are disabled to make friends? adults can be there too, that’s not an issue, I just want it to be relatively safe. Having Dysautonomia has made me beyond lonely, so Im just wondering if there’s anywhere I can go to make friends that’s safe? my mom hates social media, thinks everyone on it is instantly a child predator, does anyone know anywhere I may be able to convince her is safe? Thanks for reading this, I’m really lonely and figured some of you may have the same issue :(

Besides all the other tricks - smaller meals, compression garment, salt, caffeine for vasoconstriction etc...

My BPM has been resting over 100 for the past week or so. sure it goes down to 80 when lying down but I would guess 60% of time its over 100 and im highly symptomatic, im really struggling with crushing fatigue, dizziness, exercise intolerance, lack of appetite, brain fog, light sensitivity. prior to that it rested around 90

I dont have a diagnosis for this specific symptom except my doctor suspects dysautonomia, and is ruling out other conditions prior to an ME pathway. I have clinical diagnosis of endometriosis, as well as controlled epilepsy, medicated. This year I was also sent to hospital with an episode of atrial fibrillation and I had anemia (treated and recovered). I do talk therapy and walk a small amount daily. im out of work and super situationally depressed. My doctors brush me off until something shows up in office like the afib.

I dont have a wearable device just a manual one, so i can't get an average