r/dysautonomia

I hope someone of you as an idea, 33M. I always were the skinniest kid in school. When I went to the school doctor, I had a heart rate of 160. I am diagnosed with ADHD and likely have Autism as well. The medication is not reason for the increased heart rate, since I started only a few days ago.

I stopped smoking tobacco already when I was a teenager and stopped with nicotine 8 months ago. I never drank alcohol or took drugs. Now I am doing excercise every day for 1–2 hours. My excercise is walking very fast, 3.5 to 10 miles a day.

When I sleep, my heart rate will be between 53–68.

Nonetheless, when I am awake my heart rate is between 75 and 95 while sitting. And if I stand up, it will be between 100–110. Walking at a fast to very fast pace will cause a rate of 126–145. While I am writing this text I have 93.

Stopping with nicotine and doing way more exercise alsmost didn't change anything, my heart rate is almost as high as before even though I can feel that my condition became better.

However, it nonetheless feels like that my heart won't become bigger but just keeps increasing the heart rate if I am doing excercise. I should have a resting heart rate of 50 and not 71–80 as it is now according to my Apple watch.

I was at a cardiologist. He was very nice to me and said that he doesn't know why the heart rate is so high, but he confirmed that the heart looks very good in the echocardiogram. He gave me Ivabradin since he said I am too young for beta blockers.

I feel like I have read that there are certain medicines that people with dysautonomia should stay away from, but it may have been some other disease… I am overwhelmed with several pressing issues at the moment and need some help otherwise, I’d start digging in to research myself… Thanks in advance!

I was prescribed Midodrine a while back to help with suspected dysautonomia. I have all the hallmark symptoms, but my blood pressure is normal (it ranges from 100/70-120/78 usually). However, my heart rate jumps about 40-60 beats when I stand for longer than five minutes, which has led to fainting episodes in the past.

I've been on the meds for three days (taking 2.5 mg/day), and it's already sending me into Stage 1 diastolic hypertension (106/82 - 119/89). Don't get me wrong, it's been great - I don't have dizziness, brain fog, fainting, or fatigue when I'm on it. It has been such a big relief, but the numbers are concerning me, even in the adjustment period. It's definitely not a desired effect.

I also do not know if I have hyperadrenergic POTS. I've been diagnosed with hEDS and MCAS, but since wait times are long for specialists, my doctor is pill-trialing my dysautonomia.

Can anyone who has normal blood pressure and is on Midodrine share their experiences?

I'll be discussing this with my doctor on the next appointment, but figured I'd ask.

So to start- I’m not anti psychiatry or anti medication. My SSRIs helped me a LOT as a young teenager suffering from OCD made made me go from hours of obsessed praying and worrying about going to hell the a semi-functional high schooler.

However, it also messed up my autonomic nervous system.

I remember having these “episodes” starting at 14 where I would get intense impending doom, feel my insides moving, and have diarrhea and/panic. It was diagnosed as panic attacks and I was given clonezipam which helped. Cool, right?

But as I got older they got worse. They were especially triggered by driving. Think of the most intense pre-syncope you can and that was it. I would zone out against my will and they got better with clonezipam but my dr said not to take it while driving so I was SOL.

Anyways I stopped driving for my safety and was told I was “letting the anxiety win”. Whatever. These episodes feel PHYSICAL, not mental to me. I can have a conversation and do complex math while having an episode- it’s physical not mental and can last anywhere from 15min to 2hr and is often relieved by pacing, burping, passing gas or stool. Basically all signs of an overactive autonomic nervous system.

Last year I slowly weaned down from 200mg of sertraline 12.5mg at a time every month. It was hard but I managed. My psychiatrist said I could drop down to 75mg (so a 25mg drop) next time so I did. MISTAKE. Within 2 weeks I was in the ER with the WORSE STOMACH AND INTESTINE PAIN OF MY LIFE. Turns out decreasing SSRIs can cause visceral hypersensitivity. I didn’t know that for a colonoscopy it came back clean but I was in the worst pain of my life. I couldn’t eat without pacing and crying. I was losing weight. Anyways after colonoscopy came back clear my psych said go back up to 100mg of sertraline. I did, and within 1 month the pain resolved. Strike 1 showing I have a sensitive nervous system.

Fast forward to this year. I’ve been working with a functional med doc and my “episodes” of adrenaline ect were normally 45min and manegable without clonezipam. I’m on 20mg Zyrtec 2x day 20mg Pepcid 2x a day and 1mg Ketoficen 2x a day. Functional med doc suspects MCAS okay we can work with this.

My episodes are starting to get worse but only with specific triggers. Heat ect. I’ve gradually become more isolated due to this and the urgent diarrhea makes me carry a camp toilet in my car because the urgency and not having access to a bathroom makes the episodes 100x worse. Apparently that’s a mast cell thing. I’ve been grinding through life going on business trips pooping in the back of my car when I need to with my family member driving. Embarrassing but ikyk we have to do what we can to function.

Everything changes may 10th. I was stung by bees the day before and I felt cold and tired so I slept all day. I wake up the next day with a 101.5f fever and figure it’s from the bee venom reaction. I’m on high alert for anaphylaxis but am breathing fine so I take antihistamines and hydrate go to bed. Wake up 2hr later with the feeling of something being WRONG. I am going from shaking chills to too hot and tear off all my clothes and run to the bathroom. Yell for my husband a wet towel and my epi pen because I feel something is wrong. Start projectile vomiting and feel that I am about to die so call 911. I don’t lose airway but I feel like death. Trying to a kid ambulance bill so Ems says husband can take me to urgent care. Urgent care says my HR is 150 and my BP is in the shitter and I’m going by ambulance to ED. ED treats me like shit and says it’s “not anaphylaxis” because I have an airway and discharges me and I am a wreck for the next week healthwise but slowly getting better.

I get a referral to allergy for 1 month later but have an episode so bad in the car due to the heat I can’t make it. They’re refusing telehealth and I have to transfer my referral to a clinic closer to my home and now that appointment is set for August 11th 2026.

In the meantime my functional med doc and I are suspecting systemic mastocytosis. Apparently the “atypical anaphylaxis” with hypotension is a hallmark of systemic masto. Also my symptoms/episodes of flushing anxiety tachycardia and diarrhea are textbook mast cell mediator symptoms.

Hematology oncology appointment is set for August 19th and again trying for telehealth because I cannot survive a 1hr drive rn.

Anyways my psychiatrist says my OCD is worse because I’m not leaving my home/able to go to appointments. Most of my OCD is about if/when I’m going to have an episode at this point but she says let’s increase the sertraline from 100mg to 125mg to help me.

I say “remember last time we decrease by 25mg and I ended up in the hospital? Let’s try 12.5mg that has proven a safe interval for decrease in the past”. She disagrees says it won’t happen again due to increasing I agree begrudgingly and try. 3 days into the higher dose I got outside in hot weather for 15min o get the mail/do stuff in my yard. It’s not ideal but in the past my capacity has allowed it but we are in a heat wave. I come inside to the AC and start feeling BAD. HR is 150-170, I’m shaking and pacing trying to ride out the adrenaline, but this is 10/10 and so much worse than usual. Then swallowing starts to feel weird. Then I start gagging. I started throwing up during my last anaphylaxis and I think this is happening again from the heat and text my MIL and call 911 because I know MIL can help and hubs is working.

MIL is there in 5min as is 911. I have a bottle of clonezipam in one hand and my EpiPen in the other and ask which I should take and they say neither. My HR is 130s BP 140/100 but they clear me. I proceed to have a violent adrenaline dump for the next 2hr so severe my MIL sticks around while I have diarrhea and think I’m dying and it passes and I fall asleep.

That night I get THE HEADACHE. The sertraline withdrawal headache I remember so well while weaning down from my 200mg dose. Also my stomach is spasming like when I had vjsceral hypersensitivity AND IM WRIED AGITATED AND CSNT STOP MOVIng. But I’m INCREASING dose not decreasing why is this happening again!?! Psychiatrist is on vacation I compare notes with my husband that I think the 25mg dose change is fucking me over again. He agrees the next day I go back to 100mg and have an emergency appointment with my PCP who agrees with my assessment.

My psychiatrist texts me from vacation saying “this was a panic attack and can’t happen and I need to take my clonezipam and keep increasing sertraline.” HELL NO.

I found papers- TONS OF PAPERS- academic papers citing autonomic activation, agitation and anxiety increasing when increasing or decreasing sertraline dosage. I’m not crazy. This is real. My psychiatrist is just shitty.

So now I have 3 hypothesis-

Hypothesis 1: The sertraline dose change itself caused the visceral hypersensitivity in a vaccum.

Hypothesis 2: I have an underlying mast cell disorder, and the sertraline dose change simply lowered the threshold
90% sure this is it.

Hypothesis 3: The visceral hypersensitivity has been caused by an undiagnosed mast cell disorder all along, and the timing with sertraline is coincidental

Doubt it. Why have I had issues BOTH times when increasing or decreasing sertraline?

Anyways I’m BETTER but not back to baseline yet back on 100mg. I still have 2hr adrenaline dumps after eating that cause diarrhea burping throat spasms adrenaline and feeling gross BUT that 10/10 intensity is gone and it’s 5/10.

It’s going to take another month for me to even out probably and the adrenaline dumps to wind down again.

Which is just as well because I’m waiting on allergy immunology and oncology to schedule my BMB to see if I have systemic mastocytosis and can finally have ANSWERS and treatment.

It’s been 15 years of hell at this point but I am close to answers and I know my flares are cyclic and mathematically CANNOT last forever so I just have to get tot he drs for the BMB and diagnosis.

But yeah- if anyone says SSRIs do not affect dysautonomia/adrenaline dumping/ sensitivity, don’t believe them!

3

I'm a woman in my early 20s who's been dealing with dysautonomia for several years, and I'm feeling a bit stuck.

My original diagnosis was POTS with orthostatic hypotension, but over time my cardiologist's working diagnosis has changed to cardioinhibitory syncope.

I've tried several medications, but unfortunately my body doesn't tolerate them well. I had to stop both propranolol and midodrine after developing significant side effects, including episodes of extremely high blood pressure 220/140 (my cardiologist advised me to discontinue them). Right now I'm only taking a low dose of fludrocortisone.

One of the biggest challenges is that my vitals fluctuate a lot. I've had:

• Blood pressure as low as 60/40 and as high as around 180/110.
• Heart rate dropping into the low 30s and at other times going above 200 bpm.

I've already had a neurological workup, which was normal. My echocardiogram and a Holter monitor were also normal, although the monitor unfortunately didn't capture any of my significant bradycardia episodes. That testing was done a few years ago.

I also have hypermobility Spectrum Disorder.

Lately, the episodes where my heart rate drops have become one of the hardest parts to deal with. Sometimes it gets so low that even sitting upright or having a conversation feels exhausting. I become extremely short of breath, dizzy, and feel like I can barely function. I've also experienced convulsive syncope, which I've been told is related to reduced blood flow to the brain during these episodes.

At the moment, my heart rate is dropping into the low 30s at least once or twice most weeks, although the frequency varies.

I've requested a teleconsultation with my cardiologist, but in the meantime I'm feeling uncertain. My family generally only takes me to see a doctor or to the hospital if they believe it's a true emergency, so I often end up second-guessing myself. Part of me worries these episodes are more serious than I'm treating them, while another part keeps telling me that if it were truly dangerous, something would have happened already.

Has anyone experienced anything similar with cardioinhibitory syncope or dysautonomia? How did your doctors approach recurrent episodes of profound bradycardia? Were there any additional tests or treatments that ended up helping? I'd really appreciate hearing about other people's experiences while I wait to speak with my cardiologist.

So for me this feels like the floor is trying to pull me in. I get dizzy, my vision gets...weird, and then it's a sort of intense irresistible sleepy feeling like "ohhh just relax and have a nice sleep" and I feel weak, like if someone tapped me on the shoulder I'd just fall right over. My balance gets bad and I'll really stagger around if I'm walking.

I can fight it to an extent. But I'm extremely muscular and I think I'm just using muscles to do it because if I give in at all to that "just relax" feeling I hit the floor like a ton of bricks. I have to be tense. Occasionally I forget to not relax for a sec and bam, I drop where I am.

Then it's often like a sort of weird sleep state, usually can hear but just toooooo tired to even lift a finger or open my eyes, body won't budge no matter how hard I try, and then everything comes back online and for the most part back to normal. I'm not sure how often I am completely out or if I'd even know if I was.

Wondering if others experience this same weird pull to the floor before passing out/falling, like a sudden need to nap RIGHT NOW while standing up lol.

It's literally like my body is fighting me to lay itself down on the spot. I just have to TENSE and usually I can stay conscious though not always super coherent, and I try to get somewhere cool immediately.

When I start to warm up I get severe itchy skin with pins like poking in the skin sensations!any one else??

Does anyone else get physically sick from cabin fever? It's a very distinct feeling, like my head gets fuzzy, similar to if I've been watching TV all day. I will get headaches and feel generally unwell, as if I've got a cold or am coming down with something. It's immediately relieved by going outside. It never occured to me that this could be related to dysautonomia. Is this typical, do you experience it?

Not diagnosed yet but recently realised I have always had a lot of dysautonomia symptoms. Waiting to see my Rheum again

I’m one of the trifecta POTS, MCAS, EDS along with other diagnoses and am wondering if living in the Blue Ridge mountains Asheville is hindering toward any path of recovery. I currently live at 2800 ft elevation, and been here for 3 years now. My symptoms ramped up after moving here (undiagnosed before), we (medical team) thought it was due to an infection that went untreated so my body rebelled causing POTS etc but now that I’ve been diagnosed with EDS as well I’m wondering could it be the altitude. I’ve moved around a lot in the past but all at lower elevations Brooklyn, Seattle, Charlotte. I always feel better when I’m on vacation at the beach but is that just because I’m on vacation or is it also the elevation?!? I also feel better when visiting family at lower elevations but again is that because I’m with family so spirits are high, I’m paying less attention to my symptoms, etc etc. Anyway has anyone in our community moved and seen an improvement?
Also I’m doing all the right things have all the specialists and right doctors so no medical advice please. Just looking for those who have seen a similar pattern or moved and seen an improvement.

I just had a Specialist remove all my immune-mediated & neuro-immune dx’s from my dx list, in addition to confirmed symptoms and medical findings from their own boss. I then later learned they have a strong conflict of interest in medical cases like mine. That probably being the reason they weren’t the Dr, that I was originally assigned too.

One dx is a severe a Poly-D dx, that was complete with an action plan to avoid further ANS crisis and systemic shock, moving forward (for a routine medication I reacted to).

Now, if I’m an emergency and cannot speak for myself, or can’t due to my Autism, my life is at imminent risk of harm or death, at the hands of emergency doctors; and they will have no clue.

They’re going to pull up the first record on file, and see that there are no concerns.

/rant, that I heavily coded the other day due to anxiety around how I have to now proceed, in order to fix all of this, and protect other patients moving forward.

I’ll probably delete this later but I have 0 people to speak to about this, other than my dr whom is really unimpressed, as per their emails to me. I have to basically stay hush in my real life til it’s all dealt with, as it also includes severe medical neglect, surgical documentation errors, practising without a license, and etc.

Often, healthcare professionals prescribe exercise for individuals experiencing dysautonomia - what factors influence whether you feel ready to exercise that day or not?

Long covid sufferer here. Went to a neurologist just for fun and she gave me a tilt table test after I described buckling knees/falls , fatigue and brain fog. In the test I had a drop of 60 in my blood pressure which is a lot and stopped the test early. Thus the above diagnosis. Among many things she prescribed fludrocortisone. Does anyone have experience with this drug they can share?

I’m so tired of this. I just want to sleep one freaking night. This is starting to cause some dark thoughts. I’m so tired of waking up panicked. Left side of my body feels like a bunch of nerves are firing off. What do you do when it’s too much? It’s too much tonight. They have me taking 60mg 3x a day pyRIDostigmine. I think it’s stopped working. Back to feeling weak and the adrenaline dumps are back with a vengeance. I’m exhausted. Any advice helps.

I am looking for a Neurologist in the San Antonio area that may know something about POTS?

or even Boerne?

<3 let me know

23 male here, Ive been to the hospital 10 times and 8 of them were for tachycardia and heart attack symptoms but never found anything. Cardiologist says my heart is good and that it’s all mental. Every time I get up from lying in bed I can feel my heart pound hard and slow and can feel a squeezing sensation in my chest feeling faint. Idk what to do anymore, no doctor is taking me serious.

Amazing relationship. So many happy memories and great times. She decided to end it with me two weeks ago which is crazy because I was getting ready to propose. Lost the apartment, her, and she took our cat with her. She looked me directly in the eyes and said I cannot handle your health issues. Really sucks. I’ve been dealing with dysautonomia for the last 5 years but in recent times it’s gotten harder to manage. I ended up having to leave my job a couple months ago because the symptoms were so bad. I let my anxiety and depression get out of control too and I tried to do everything I could to keep her and still help out but it just didn’t work out. I think when I lost my job she got scared and just couldn’t handle it anymore…

So my cardiologist diagnosed me with inappropriate sinus tachycardia despite my resting heart rate being low most of the time (low 50s). However, every time I’m at the doctor my heart rate is well over 100 because of anxiety. So they saw that, decided IST must be the cause of my symptoms, prescribed me ivabradine, and said see you in a year.

I am not convinced that that’s what I have, since like I said my heart rate when sitting or laying down is usually in the 50s and never randomly spikes unless I stand or am anxious. When I did a poor man’s tilt table test at home, my sitting heart rate was 55, and then after standing for 5+ minutes my heart rate is 100+ the whole time and I get dizzy and dark vision (not locking my knees). I also notice discoloration due to pooled blood in my feet and ankles. I’m wondering if I have POTS, but i know if I do the same test at the doctor they wouldn’t get a normal baseline hr and I’m not sure if the increase would be as noticeable because of it.

Has anyone else had a similar experience?

I finally saw a POTS specialist and he put me on ivabradine. I was on Guanfacine from my primary before this POTS specialist appointment. My primary did diagnosed me with POTS from symptoms + after my catecholamines test came back over 600 for norepinephrine levels. The Guanfacine has been great for my adrenaline dumps/surges, excessive sweating, headaches, etc. - it has lowered my heart rate some but not that much (about 95-110 resting, 80 sleeping).

The POTS specialist told me to get off Guanfacine for the ivabradine. I tried tapering off to just a 1/2 pill for one day and it was not good. Full adrenaline surge and dump all day long. I told the POTS specialist this, he doubled down on still not taking it. (Note: the POTS specialist “doesn’t believe” in hyperPOTS and I told him that it helped other symptoms, he didn’t want to hear it).

I reach out to my primary as he prescribed the Guanfacine. He said to try adding ivabradine and not stopping the Guanfacine for 3-4 days to see. Then I could slowly taper off the Guanfacine (he’d give me a schedule) if it’s not good. I feel much better with my heart rate, my visible band didn’t go off once today. I feel less hot and less dizzy.

The only couple of problems I have are -

1. I slept a longggg time after taking my first dose. Like I couldn’t keep my eyes open after 30 min of taking it.

2. My heart rate is a little low and it’s worrying me a little. It was 69 sitting up in the car (I was not driving), 60-62 lying in bed. The highest it’s gotten is 87. Websites say below 58 is bad / bradycardia, which I might get to when I go to sleep. I have my Fitbit set to wake me up if it does.

3. The middle of my chest is a little uncomfortable but in no way is it affecting my breathing. O2 is 97% on my Fitbit.

I’m on 5mg 2x a day.

Area these things normal and go away with time?

This is literally my first day taking it so I’m going to give it the 3-4 days. I’m not sure if I should ask to lower my ivabradine dosage or try to get off the Guanfacine (I really don’t want to). I’ve already tried other meds so I was hoping this one would work.

Thank you for reading & for any insights you might have.

I’ve been in the hospital for several days now battling autonomic dysreflexia again. This time, I’ve been dealing with severe overheating, and it’s been absolutely miserable.
My doctor wants to send me to the Mayo Clinic in Jacksonville, Florida. It really sucks, but I’m hopeful they’ll be able to help me better understand how to live with this condition and manage it more effectively. It’s been a really rough road.
When I got here by ambulance, my blood pressure was incredibly high. They were able to get it down with IV antihypertensive medicine 200/100
I didn’t even think that was possible

I got diagnosed with POTS October last year, I had never had a fainting issue in fact I had never even actually fainted in my life! This past 5-6 months have been very difficult for me and two days ago I had my first fainting episode in the shower, luckily I was sitting on my shower stool and in the corner otherwise it could have gone badly. Now today while walking my dogs I got so lightheaded that I had fell over into a muddy puddle and had to sit there for about seven minutes before I could stand cause I was just so out of it and couldn’t get up. I’m just wanting some suggestions on what can help me with these issues other than the usual, water, salt and electrolytes as I am meeting all of that. I am also seeing a doctor that specialises in POTS and I have a cardiologist but can’t see them til my next appointments which are in about 1 month. The medications I am on are Midodrine, Bisoprolol, and Ivabradine if any of that helps.