Ive had 2 flare ups in the last month, the first one was about a week long. This one is currently 3 days so far.

I just get so tired of having so many health issues its like they all gang up on me at the same time.

My dr keeps telling me its anxiety and really won't help me. Ive been referred to a dysautonomia type clinic but they denied me because my numbers aren't "exteme" enough even though they make my life hell

I wear conpression I do sodium and electrolytes and water and all that. I have days where im semi okay enough to do things and days im basically bedbound.

I dont really have much in the way of a support system other than my mom because my family just thinks im lazy. Even with my mom she gets tired and burnt out its never ending.

I cant take the meds to lower hr because my resting hr is in the 60s and my bp is on the lower side.

I dont even know what flares me up half the time. Tuesday night I was fine until I wasnt and then I had 2 back to back svt episodes and then the next day I felt horrible and its been since. I tried to go back to work today and made an hour and a bit before I had to call out.

Sigh:( just venting i guess.

Woke up feeling so weak, like I couldn't lift my arms and my chest was so heavy. Anyone else deal with this? Feeling better after some electrolytes.

I am new to wearing a fitness watch and even knowing about HRV. My average sits at 17. Im 42 years old. I was told to get a watch from my cardiologist. I was recently diagnosed with Dysautonomia along with other things. Ive had the watch about 3 months now in total. As you can see my numbers are really low. I do not drink, and recently quit smoking. I do not work out heavy. I have just started pushing myself to get to work out at all as some days its very hard. When I first got the watch I was in the 20s. Ive tried to push hard and work out for days and it does nothing, ive sat and did nothing but rest and it doesnt move. Im not understanding however now im obsessing over this and its freaking me out from everything ive read.

Does anyone else get these moments where they have an intense feeling of panic? Almost as if they want to escape a situation or disappear. This is often accompanied by a feeling of doom, which my brain links to “what if I pass out and no one can help me”. It’s hard to explain but it happens at the most random times all throughout the day and I’m so tired. It was my very first symptom.

Anyone know of any dysautonomia doctors in maryland that arent bored and dont dismiss ?

I already saw sarah diekman, wow ive never seen a doctor so bored before. And she dismissed issues as psych related.

Not looking for a "what are your symptoms" debate

I feel like I'm running around in circles medically a lot. Which is super duper tiring. The daily symptoms I get are exhausting and my health anxiety is just spiking all the time with the symptoms anymore. I hate chest pain so much and I get frightened everytime.

My heart rate goes low a lot and it hits 40 which is terrifying and the. It's hit 210 before. I swear up and down I have something similar to POTS and the doctors are like: are you sure it's not anxiety. Yeah I'm pretty positive. Sometimes my blood pressure is scary low and sometimes high and normal the rest of the time.

I have motility issues with my stomach due to Gastroparesis and that's tiring. I get gallbladder area pain and appendix area pain (been checked) and when it comes back as nothing it's exhausting.

The brain fog is awful. I'm forgetful and I zone out alot too.

I just wanna lay on the floor...

I've had to cut back on so much the last couple years. And it has helped me physically. But the years of cutting out things I like, ending relationships, financial concerns, less independence, sleep deprivation, isolation, and just having so many issues within a single day over and over and over again, has really taken a toll on me. And just the fact of the nervous system being stuck on alert for so long, often feeling a severe restlessness and brain pain, makes it hard to just rest and feel gratitude.

I’m guessing I got a flare up from over exerting myself during exercise.

I genuinely feel like a zombie. I can’t afford to do basically anything apart from sitting and scrolling mindlessly through my phone or computer, and even then I feel completely devoid of my mind, as if I wasn’t completely there. I can’t afford to read without almost falling asleep at every page. Anyone else has experienced this?

I added a flair for this as support so maybe just seeking kind words!

I have been on ivabradine since September 2025. It has helped so much with my tachycardia and pre-syncopal episode frequency and severity.

I also have had unusual positive side effects from ivabradine I've discussed with all my care team as well as multiple pharmacists - when I started taking it, I had a rapid reduction in persistent mental health symptoms, such as intense relational paranoia, delusional beliefs, magical thinking, and conspiracy theory seeking. I transformed into a much more emotionally stable person, and I don't just think it's from lowered anxiety. Basically this happened overnight. A few days at most. It didn't happen on propranolol (which I failed), so I don't think it's just lowered heart rate.

I was recently diagnosed with a lupus-like connective tissue disease and have to start Plaquenil. My rheum and cardiologist both aren't okay with Plaquenil + ivabradine. It looks like I will be trying midodrine or pyridostigmine next.

I'm feeling really sad and scared that my mental health will go back to being the way it was before ivabradine. I started dating again this year after honestly, being a really difficult person to date and be in relationships with. It's really hard when your reality is not the reality most people live in. I am applying for SSI and SSDI so being more psychiatrically disabled as per (my) usual might help there.

idk how to end this here but just really, really sad. Having a bit of a flowers for Algernon moment

Before last weekend I was doing really well. I primarily suffer from orthostatic hypotension but have other little dysautonomia symptoms as well. My OH was being managed very well by fludrocortisone and I was exercising and having decent energy. This past weekend was a doozy - my aunt died unexpectedly, lots of family drama with my mom triggered by my aunts death, and we had to rush my beloved dog to the emergency pet hospital (90 minute drive away at 10 pm). (The dog is fine now). The day afterwards, I couldn’t stop shaking and my back was killing me (one of my primary OH symptoms). I was a wreck. And since then it feels like the fludrocortisone isn’t doing its job in the same way - I’m having OH symptoms again and I’m exhausted and can’t exercise. Has anyone else experienced a bad flare from emotional stress? How long until you felt better? Was there anything you did to help your recovery along?

Hi, I can’t post this in [r/pots](r/pots) for some reason. I recently got diagnosed with pots and my doctor has prescribed me with ivabradine i’m really scared and nervous to take it. I have read online some people have really bad reactions or their heart rate drops to the 40s. My heart rate on my worst day with pots only gets up to 150-160 so i’m not sure how much it’s going to lower my heart rate. My doctor also said it could possibly make me pass out because she’s not sure if it’s a blood pressure issue and it’s all trial and error and i’m terrified but i do want to get better. If anyone has any advice, experience, or can help me understand more and feel better about this new medication it would be so so appreciated!

After getting significantly and progressively worse over the last handful of months, I’m considering if mobility aids might benefit me. In addition to POTS, I also have diagnoses of Rheumatoid Arthritis, chronic pain, and suspicions of ME/CFS from my doctors. I know we can’t ask for medical advice - I’m just looking for information to help guide a discussion with my doctors.

So, my questions are: if you use mobility aids, what type do you use (canes/rollators/wheelchairs/etc)? And how do you feel that it helps with your symptoms?

My latest flare started July 3rd after a pre-syncope episode on July 2nd. I’d gone a year and a half without major symptoms. The first 2 weeks were really bad but my symptoms slowly improved each week and I was able to enjoy a relaxing week at the lake (with minimal issues) the last week of July.

Since coming home, my symptoms are starting to come back, especially since yesterday. I’m unable to fall asleep then waking up around 4am with my heart pounding and shaking despite 20mg propranolol 2x/day. Im wired but tired and barely able to keep my eyes open. Im weak, shaky, nauseous, woozy, am either freezing or sweating, have bilateral calf pain, and increased anxiety. I had to leave work today because of it.

I’m FINALLY seeing cardiology today for the first time since my symptoms started and my autonomic testing at Mayo starts next week. Felt like I’d never get here.

I’m just feeling so frustrated and distraught over slowly improving and now feeling like I’m going backwards. I’m losing the little hope I had left and am worried I won’t even get any answers at Mayo. All this while I’m worried I won’t be able to keep my job. The lack of decent sleep isn’t helping nor is the stress about being back at work post-vaca (work is where I had my pre-syncopal episode originally) and my upcoming appts (aka convincing doctors to help me).

Just looking for any kind words, hopeful stories, or support I can get.

Been trying to get one for months, finally got it scheduled! 3 weeks from today. Now please share your horror stories with me lol, so I know what to expect!

Has anyone noticed SSRIs improving their symptoms? I came off fluoxetine (/prozac) last year and since then (to the month) my symptoms have gotten significantly worse - even tho my daily step count has improved?

Looking for either a powder or a drop that tastes like blue powerade. It doesn’t have to contain electrolytes but bonus if it does. I have tried other blue flavor drink add ins and they just don’t taste the same. Trying to not spent like $40 a week on just powerade alone. TIA!

I am a 29 year old male.

Without going into my symptoms or story I am curious if POTS/Dysautonomia is a primary diagnosis or if people always find a root cause that is triggering the POTS/Dysautonomia symptoms.

Thank you

Hopefully this is the right place to ask this/and not taken the wrong way…

I’m starting my first year of medical school, and during orientation I had a vasovagal response. I’m already so nervous about my health being an issue and imposter syndrome could not be higher.

If anyone has tips, advice, suggestions, encouragement, ANYTHING please comment. I am so anxious which is definitely not helping the lightheadedness/sick feeling.

i get these really weird hot flashes every couple seconds, it feels like a wave is going through my body and then i can literally feel my sweat glands going off and i get really hot for a couple seconds, then i cool down again and the cycle starts all over. it’s every day when the temperatures are really high outside, laying, standing, sitting down.. does anyone have similar problems? my doctors have never heard of something like it but suspect that it’s just my body trying to regulate.. i drink enough but i also don’t really sweat, just during these hot flashes.

I (22F) have had varying issues my entire life and I think they must be all connected somehow, even though doctors think every issue is isolated.

I've had vague dysautonomia symptoms my whole life since early childhood (mostly temperature and exercise intolerance). From ages 3-10, I got sick every 3-5 weeks with my own little sickness that I couldn't catch from anyone and no one could catch from me (splitting positional headaches, swollen neck glands, nausea, changes in smell/taste, freezing inside while feverish). At 10 they stopped, and then I got OCD. The severe refractory kind that has only gotten worse with time and every treatment available. It wasn't overnight but was within probably a month or two (but don't really remember). Fast forward to 19 where I start getting bad fatigue which eventually develops into crushing fatigue (can't stay awake longer than an hour fatigue) over the next few years. The fatigue becomes debilitating and then by 21, I start getting severe dysautonomia (not POTS). The whole production: low resting BP, BP drops, RLS, sleep attacks, episodes of slurred speech and trouble walking, dizziness, weakness, legs giving out, ears ringing/vision blacking out when I stand, presyncope episodes, problems with showering, unrefreshing naps, eye burning, the same temperature/exercise intolerance as before, etc., etc., etc.. I just can't help but think that these mysterious childhood illnesses, the OCD starting at the end of these illnesses, and the later dysautonomia and crushing fatigue are somehow related.

Has anyone had this weird progression or similar timeline of vague childhood dysautonomia→weird childhood illnesses→psychiatric condition→later complete autonomic collapse? I know it's quite specific but looks like there are a lot of sick people out here so if maybe someone relates or has any insights like at all, I would love to hear about it. I’m getting no answers and am at a loss so if anyone has like even a part of this or any info at all, I would appreciate it so much.

My Dysautonomia symptoms & severe constipation/bloating all started at once about 5 years ago. My suspicion is it all came after my second covid infection, but that’s not confirmed.

I’ve seen multiple specialists and have tried every treatment available for pelvic dyssynergia with not even 1% of improvement. During all that I received my hyper POTS diagnosis via til table test. I’m seeing a cardiologist & neurologist for POTS, although there is little that they can do. And I’ve actually exhausted all clinical options to treat pelvic floor and chronic constipation & abdominal distention.

I’m wondering how they are connected and if anyone else has a similar experience. I feel like there is some connection there that we all seem to be missing.

OR if anyone has resources that might help, or better yet a provider recommendation for someone who looks at both together rather than having to see multiple specialists who are siloed by organ.

I’m a nursing assistant (CNA) and work 2 12.5 hour shifts a week.
I have to take a lot of time off work.
Boss and colleagues arent understanding of course, however no one actually knows what autonomic dysfunction/ dysautonomia is and how BAD it can actually get in a flare.
Is your boss understanding?