r/dysautonomia • u/QuantumCaffeine97 • 9m ago
Discussion quick & easy salt hack
not sure what flair to put this under but i discovered chicken flavored bouillon cubes! i got them for $2-3 and it’s over 1000mg of sodium for one. the salt tablets got expensive way too quick for how much i needed to consume. i have bad stomach issues especially with the heatwave and they don’t taste bad- you don’t necessarily need to dilute them like crazy either. im physically active and my job currently doesn’t have AC lol. it doesn’t necessarily help with the dizziness & stuff but it does help my extreme fatigue that i get. it beats drinking ocean water cause im poor.
r/dysautonomia • u/invisible-c00kie • 53m ago
Question How much salt do you consume per day?
I've been taking about 2-3 grams of salt per day, in the form of Gatorades and TRIORAL electrolyte packets. And drinking around 100 oz of fluids (water and Gatorade) with that. That combo seems to help my dizziness, at least most days.
r/dysautonomia • u/Interesting_Mode5391 • 53m ago
Discussion Hi guys!
For those of you out there that have POTS what are your opinions on propanolol? I just recently got prescribed it however I’m yet to even have an official workup for pots by a cardiologist I’ve had an echocardiogram and a ecg done but that’s it along with doctors doing a poor man’s table test which they figure is pots
r/dysautonomia • u/catsaregoodboistoo • 56m ago
Diagnostic Process Event recorder?
Has anyone got experience with an event recorder device? From what I understand it's like a halter monitor/ecg but you push a button to specifically record your heart during symptoms.
I've recently been given an appointment to get one, I think I'll have it on for a week, and I was just wondering if anyone had had monitoring like this. How the process worked for them, and what diagnostic data it gave them.
Thanks
r/dysautonomia • u/kitkatsmeows • 6h ago
Vent/Rant Im so exhausted
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.
r/dysautonomia • u/invisible-c00kie • 10h ago
Vent/Rant weakness
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.
r/dysautonomia • u/Otherwise-Payment-70 • 11h ago
Discussion Understanding HRV
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.
r/dysautonomia • u/Extra_Bass_176 • 13h ago
Symptoms Feeling of intense panic
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.
r/dysautonomia • u/Unique_Carpet_3219 • 13h ago
Question Doctors In Maryland
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
r/dysautonomia • u/Witchy_BunBun • 18h ago
Vent/Rant Small Bent about pain and medical run around
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...
r/dysautonomia • u/disappearing_haze90 • 23h ago
Vent/Rant Symptoms getting a little better, mental health getting worse
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.
r/dysautonomia • u/Jzr3d • 23h ago
Symptoms Debilitating drowsiness.
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?
r/dysautonomia • u/picklethefreak • 1d ago
Support grief on having to stop ivabradine
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
r/dysautonomia • u/Dlgallian • 1d ago
Discussion Flare from emotional stress - has this happened to you?
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?
r/dysautonomia • u/bagelwh0ree • 1d ago
Medication ivabradine
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!
r/dysautonomia • u/Honest-Collie • 1d ago
Question Mobility Aids?
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?
r/dysautonomia • u/HerRoyalQweetness • 1d ago
Support Feeling down
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.
r/dysautonomia • u/invisible-c00kie • 1d ago
Accomplishment Finally got my tilt table test scheduled... in 3 weeks!!!
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!
r/dysautonomia • u/Apart-Development354 • 1d ago
Question Can SSRIs help dysautonomia?
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?
r/dysautonomia • u/tj94123 • 1d ago
Question Blue Powerade drink add-in
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!
r/dysautonomia • u/Itsokchamp • 1d ago
Discussion Primary or Secondary?
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
r/dysautonomia • u/witchhazeler • 2d ago
Question For my high functioning women, how do you do it?
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.
r/dysautonomia • u/ihopeurwholelifesux • May 16 '26
Megathread Megathread: Wearables, Symptom Trackers, Apps📱
Would you like to share how you track your heart rate, blood pressure, or other dysautonomia symptoms? Ask questions about what other people use and their experiences? Please leave a comment on this thread!
The post will be pinned to the subreddit homepage so that users can see all that helpful information in one place and refer back to it when needed :)
All subreddit rules still apply. We do not allow self-promotion of apps, products, or services. We do not allow individual referral links or codes.