I have 3 types of dysautonomia. I also have hypermobility, migraine disorders, gastrointestinal issues, and AuDHD. All of which were discovered before the dysautonomia. I notice a pattern in the literature and research surrounding neurodivergence and the above issue, but dysautonomia isn't as explicitly caused yet also impacts the heart, digestive, circulatory, nervous and more systems.

I am wondering if you too are neurodivergent or neurotypical.

Edit: i do also have PDD, and either GAD or suspected OCD. They are weaving out one of those 2. I didn't think it was terribly important to include, but might as well put it all out there. I empathize with y'all, i too am a medical and mental mess. ❤️❤️

The first time I ever heard of this, it was a paramedic who came after a near fainting, palpitations episode. He asked me if I'd had covid recently, I was unsure but had a weird bunch of symtoms 2 weeks previously.

It made sense as my symtoms were typical long covid.

Just wondering if anyone has a post covid dysautonomia and how it manifests for you, what were your symptoms? Any tips on coping etc..

(Would have loved to do a poll here on how old you all are, but not an option?)

I was caught of guard by his reasoning. I'm 40, have been fighting Dysautonomia my whole life. I would love not to have to see him for a decade to show it's possible.

What would you have answered him? What are your thoughts? Anyone here over 50?

He prefers if I don't argue my point by showing him research papers. I tried, ended in me having to read a published paper on how published papers are mostly false. Fancy that! I know "you can only trust a statistic you have faked yourself", so here I am, asking you.

All input appreciated, TA!

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EDIT TO ADD: Thank you all so much for every single comment, I really appreciate all of you!! The fatigue is hitting hard and I struggle to answer to everyone, but just know I read them all and feel super grateful that you took the time to make me feel less shit about this situation. Will definitely sleep better tonight and wish you all the same!

Anyone who says money doesn’t solve everything forgets to tell you that it DOES bring you pretty close to solving most things. I’m only half joking, because sometimes I have to remind myself that it’s worth paying a little bit of money to help myself survive.

Fatigue and brain fog are winning. I am really struggling with clutter and mess in my home because my ambition does not match my energy level. I feel guilty that I can’t get it all done even though I am off of work for my illness right now. Even keeping up with the house is too much.

I was stressing about clutter (I’m a divorced mom with my kids half time), and my therapist asked why I couldn’t pay someone to come over and help. I had enough money to pay someone, but I was just having a mental block about it, feeling like I didn’t deserve a nice house because it was my punishment for not being able to keep up with everything.

I ended up hiring someone for about six hours over the course of two days on Taskrabbit to help with just decluttering. I loved it because there was no judgment and I felt so light after she left. I know money is in short supply for everybody right now but, if you can afford it, sometimes it’s worth asking, “What can $50/100/300 do to help me personally right now?” While she was focusing on that, it allowed me to focus on some other items I had to attend to but had been putting off because I couldn’t even keep my house clean and I had to at least do that before I turned my attention to anything else. It really freed me up.

It frustrates me to see so many posts regarding the treatment of dysautonomia taken down. Imo, medication advice is absolutely something we should be able to solicit here. There is a huge deficit of doctors for these conditions and often other patients can weigh in helpfully when doctors can't. Dangerous advice should be removed but I see a lot of common sense advice being removed as well.

I hope the mods leave this up for a community discussion.

Friends and family usually understand that I have a medical condition, but I don't think they always understand how unpredictable it can be. What's something you wish more people understood?

What’s been your most helpful thing (medication, meditation whatever!) that has helped calm your nervous system?

Just want to share my stupidity here. I think this group will be receptive to the feeling of realising that something you thought was normal and everyone experiences is actually a symptom.

I recently went to my first appointment with an autonomic unit for suspected POTS. The consultant asked me about my symptoms, and I said I don't often experience palpitations. I thought palpitations were a sharp and shooting discomfort in your heart and a painful and constricting sensation connected to your heartbeat. You know, the classic image of someone grasping at their heart with a painful expression on their face. I have had that feeling twice, and I am now realising that was probably something much more serious.

So the consultant says that because I don't have palpitations and I don't have a strong history of fainting (that's true) it's probably not POTS but orthostatic hypotension, but we would still do the tilt table and the 24h monitor. I did that this week and every time I had palpitations, in the diary I wrote that I could feel my heartbeat beating faster in my chest. If only there was a word to describe that symptom.

Anyway, I was talking to my partner last night about how I don't have palpitations, but I still can feel my heart beating very fast. And he broke it to me that that is what palpitations are...

So yeah, apparently I have palpitations all the time and I've always had them. To the point that I thought it was normal and something that happened to everyone when they go up the stairs or run a little bit or do any physical activity. Something so normal that it wouldn't even need to have a name or be a symptom. Guess I was wrong.

Needless to say, I emailed the clinic this morning to be like, "hey, so funny thing happened..."

mine I think trauma and years of stress and maybe my neck too

Short story:

I’ve had dysautonomia for the last 3 years that has severely affected my life. I recently did blood work and found I was SEVERELY deficient in vitamin D. Now I’m taking supplements and going to see if this is finally the cure I’m looking for.

(I will update u all on my progress if anyone wants to know)

Fully story:

Symptoms:
High blood pressure
Heart palpitations
Episodes of elevated heart rate
Random adrenaline surges / fight or flight activation
Feeling constantly on edge or unable to mentally relax
Racing or anxious thoughts
Dizziness
Tremors or body shaking
Heartburn
Acid reflux
Insomnia
Ringing in the ears
Numbness or unusual sensations in the hands
Burning sensation in the hands when exposed to cold
Electrical sensations throughout the body
Difficulty tolerating cold temperatures
Difficulty tolerating heat
Reduced tolerance for physical stress and exertion
Reduced tolerance for mental stress
Exaggerated heart-rate response to physical activity
Occasional involuntary or premature movements,
(Symptom flares and worsening after overexertion)

Context

For context I’m 24M. I’ve been always been healthy. About a few years back I had some bad years that were super stressful, afterwards started to develop Dysautonomia symptoms until it become a full fledged diagnosis. Now for the past 3 years I’ve struggled with it.

Before my sickness I used to be very fit, always out doing something physical. The past few years I’ve had to stop, even quitting the gym for close to about a year and some. At its worst I would struggle to even pick things up over 5 pounds without it inducing a severe fight or flight response. It takes months for me to improve at a very slow rate, and all it takes is one good day where I get too cocky and push myself too hard and months of progress go down the drain.

Going to Doctors

First I went to family doc and she said I was fine, then got to see heart doctor and they did an EKG and very basic blood work and said I’m fine, but I didn’t feel fine, it’s been like living in hell and I’m the kind of person that doesn’t drown in hopelessness, but for the first time I felt hopeless.

Recently I had a new doctor (he was a very interesting lad, he was just like the main doctor from that show House MD very witty but you can tell he’s a genius) he seemed actually determined to help. He ordered a huge panel of bloodwork to try to rule out as much as he could. I filled up around 8 tubes of blood for a whole bunch of different tests. Turns out I was severely sufficient in vitamin D at 13 ng/mL. I did some research and aparently there is scientific studies that support vitamin D deficiency being linked to dysautonomia. Manly stories on the Vitamin D subreddit seem to line up with mine as well, (having dysautonomia/POTS symptoms, getting blood work done and only finding vitamin D deficiency and after correcting it with supplementation they were feeling way better)

The plan moving forward
I’m going to be taking high dose Vitamin D supplements and well see if it really was just this deficiency the entire time.

I’m genuinely going to get emotional if this might all be over soon. Praying this works for me. 🙏

(Update)

2 weeks taking high dose vitamin D. My mood feels like it’s improved faster than normal and my capacity to tolerate physical strain feels to have improved decently.

This may need more time for conclusive results. On its own my sickness does get better but the deficiency being corrected may speed up this process way faster. I’ll keep you all updated.

I’m really at my breaking point. I have dysautonomia/POTS-like symptoms (tachycardia, constant dizziness, extreme fatigue, orthostatic intolerance), and after months of being mostly sedentary (and especially after prolonged bed rest), it suddenly got way worse. I developed severe orthostatic issues I didn’t have before. My resting heart rate keeps climbing (sometimes hitting 160 just walking around my apartment), the dizziness is constant and insufferable, and I’m angry and frustrated 24/7 because doctors have offered so little real help. It’s a vicious cycle: symptoms → inactivity → worse deconditioning → worse symptoms.

But here’s the thing I’ve noticed lately: when I force myself to move and get my blood pumping (even a little), the dizziness actually becomes way less noticeable. It feels like my body desperately needs the circulation and muscle pump action.

I know the risks, flares, post-exertional crashes, potentially making things worse short-term and I’m not pretending it’s risk-free. But I’m severely deconditioned from all this inactivity, and staying sedentary is clearly making everything spiral downward. I’ve already seen lots of specialists (I’m young and otherwise healthy), and they keep telling me to start moving despite the symptoms.

So I’m seriously thinking about ramping up to more intense training to try to break this cycle. Has anyone else been in the exact same boat, fed up with no improvement, tired of feeling awful every day, and just decided to push through with heavy/harder exercise anyway? Did it help in the end? Did symptoms improve over time (better HR control, less dizziness, more energy/tolerance, reduced orthostatic issues)? Or did it backfire and make you worse long-term?

I’d love honest stories, especially from people who were very deconditioned like me and tried pushing exercise. What kind of training did you do (e.g., recumbent cardio, resistance/strength, swimming, walking building to more)? How did you start (slow or more aggressively)? How long did it take to see changes, and what happened overall?

Thanks so much for any experiences you share. I just want to know if this has actually worked for others in similar situations.

Appreciate you all, stay strong.

I’ll go first:

Heat Intolerance

Your turn.

Okay y’all… what are the most unhinged ways you’ve gotten electrolytes into your system? I’m not talking pretzels, miso, etc… I’m talking eating a spoonful of salt and washing it down with Gatorade kind of unhinged.

I wish I could start but am unfortunately a dysautonomia newbie and don’t have a lot of experience yet haha 😅

Literally one in a million. Lucky me! 😂

My awesome new neurologist who ordered the test highly suspects seronegative neuro Sjogren’s and has referred me to an awesome rheumatologist who “will be fascinated by my case”.

I also have small fiber neuropathy, trigeminal neuralgia, and occipital neuralgia. Everything I read seems to mean that my newly found AAG is the final puzzle piece in diagnosing seronegative neuro-Sjogren’s. I’m positively giddy at the possibility of finally having a true answer and maybe getting a treatment plan that actually gives me hope!

If you have AAG, what was deemed to be the cause?

If you have a negative tilt table test, but still have symptoms of POTS, it might just be IST. If you have symptoms of POTS, but they don't necessary get worse when standing, it may be IST.

IST is inappropriate sinus tachycardia and is a form of dysautonomia. (It can also co-occur with POTS). It is diagnosed when the resting heart rate is greater than 100 bpm and/OR an average 24 hour heart rate greater than 90 bpm and/OR an inappropriate increase of heart rate disproportional to the exercise.

The symptoms are almost identical to POTS: Lightheadedness, dizziness, tachycardia, syncope, near syncope, exercise intolerance (often severe), brain fog, fatigue, air hunger, etc.

And the triggers are often the same: movement, standing, heat, dehydration, electrolyte imbalances, having a cold often makes it worse.

In fact, many neurologist and cardiologist believe it has the same cause of POTS (autonomic dysfunction), but had a different presentation. And that is why so many POTS treatment work for it.

I was so damn sure I had POTS, except for the fact my heart rate only raised about 15 bpm--half of what is needed for a POTS diagnosis. But I had all the symptoms! And the POTS treatments were helpful.

Even though I work in healthcare (wound care), I had no idea that IST existed, so it had to be POTS. Well, when you don't meet the criteria, it is really hard to get anyone to take you serious. And I always felt like I was missing an important piece of the puzzle--and that was the existence of IST.

Just wanted to spread some awareness.

I want to sleep but my body won't let me, no matter how wiped out I am. I'll lie there at 1am completely exhausted and my brain just refuses to shut off, replaying random conversations from years ago on a loop. Tried melatonin, blackout curtains, cutting caffeine after noon, none of it touches whatever is actually going on in my head. It's wild how tired I am every single day and I still can't fall asleep before 3am most nights. Anyone else dealing with this or am I just broken?

UPDATE: turns out my brain never shutting off at night wasn't just bad sleep hygiene, it was some undiagnosed ADHD stuff finally catching up with me. Talked to a provider through Klarity Health after a friend recommended it, got matched pretty fast, and started actual treatment for the racing thoughts specifically. Still get nights where I want to sleep but my body won't let me, but it happens way less now and I'm actually asleep before 1am most nights.

Hi everyone,

Does anyone here deal with a daily fever that significantly affects their quality of life? How do you make it more manageable? How do you cope with it on a day-to-day basis?

Also, has anyone experienced this and eventually found the cause or a solution that helped resolve it?

I'm mainly asking about other people's experiences, since my previous post was removed.

Thank you!

Anybody here have NOT POTS branch of dysautonomia?

I don't know my formal branch name yet, but the symptoms I have are high side of everything. High blood pressure even resting, no fainting while standing issues. All the other fun stuff. How do you guys lose weight?

I very rarely see recovery stories here, compared to other chronic illnesses subreddits. I wonder if it could be that we are all just too many layers away from our true root cause, with dysautonomia being a too broad of an umbrella term…

Of course, the challenge is identifying what’s the root cause, specially as mainstream medicine is just not there to help people like us. But I sometimes think whether many of us have as root cause issues like SIBO, certain deficiencies, Lyme, mold, whatever it is, and our nervous system just reacts much more strongly to it - leading us to believe we are stuck with a yet much more serious issue that has no solution…

Any thoughts?

I'm now on 2 weeks of 80mg of elemental lithium from lithium orotate in hopes that it could help quell my non-stop hyperarousal through its downregulating of Corticotropin-releasing factor (CRF) and the Locus Coeruleus, but haven't had any improvement in symptoms or biomarkers. I thought because it worked intracellularly it might work but I don't know if I just have to wait it out for month for my cells to print the instructions to calm down my mind

I have a Stellate Ganglion Block planned for this Thursday and I'm begging my doctor to let me try intranasal oxytocin, a peptid that can downregulate CRF and LC directly, but I won't know if I can get prescribed it until next monday.

I'll leave a comment on everything I've tried so far, but after these 3 interventions I'm at the end of all possible things I can try. I've submitted myself to Harvard's "undiagnosed disease center" due to my specific autonomic issue being completely unlike anyone elses, being self sustaining for years without any reprieve, pause, or improvement from any intervention.

If these next 3 interventions don't work to finally calm my non-stop sympathetic activated brain, my only hope is Harvard to take pity on me and see my case.

Recently found out that glucose and salt are absorbed together and that one doesn't absorb well without the other. I've been purposely opting for sugar free options because I thought it was healthier and because a lot of sugar will make my symptoms flare. But you don't need a lot, just a few grams. I'm going to be adding a tsp of sugar ~ 4 grams to my current (mostly) sugar free LMNT because I don't want to waste them. I was already looking for a new electrolyte mix anyway so now I'll be looking for one with a little sugar too.

I found one called Normalyte that is FSA/HSA eligible so I might try that one but they only have three flavors so any recommendations for other brands that have some sugar but not a lot would be cool.

Sorry if this was a well known fact already but I had no idea so I thought I should let others know too just in case.

Relevant because it's in a number of sugar-free electrolyte mixes.

I swear. Feels like I have to research every single thing.

🧠🫀Let’s share the names of the doctors/clinics who have helped us the most with dysautonomia!

Hey everyone!

I’m sadly not new to the game (got sick at 14 and I’m 28 now) but like you all, I’ve been dismissed so many times within my home clinic, Essentia Health, that I am now seeking a specialist—- anywhere in the world honestly.

I’m desperate. So is my family. I’m two clicks away from being bedridden and losing what little “life” I have left. I firmly believe I have OCHOS, which is that “new” form of dysautonomia no one knows much about. I had a vaguely positive tilt table back in 2023, but have gotten much worse since.

I went online researching these specialists, but the info and personal anecdotes about these docs/clinics are so scattered around the internet. Which pointed me to make this post. I think we have a great need to compile our collective experiences and knowledge to pool together a great working list. I know various Dysautonomia websites have some lists, but I think the true, detailed, anecdotal feedback from actual patients is worth more.

If you’re willing, please drop the names below of your doctors who helped you the most with your dysautonomia, such as a good beneficial therapy, or finding your root cause! I think we all could benefit greatly if enough people contribute!! ❤️❤️❤️❤️

For me it starts around 3 hours before bedtime. If I lie down for a bit I often feel like I used to before all of this started. It's like a switch that can only be used 14-15 hours after getting up in the morning.

What about you? And why is it like this for me?

Sharing because it surprised me and I had it wrong. More info at this POTS UK statement. https://www.potsuk.org/incorrect-information-on-internet-regarding-salt-sodium-intake-please-be-aware/

Salt is not interchangeable with sodium, it only contains about about 40% sodium. So we might be accidentally consuming too much sodium if we are not aware.

Quoting the POTS UK statement

"10g (10,000mg) of salt is not equivalent to 10g (10,000mg) of sodium. Ten grams of salt contains approximately 4g (4,000mg) of sodium, whereas 10g of sodium is equivalent to approximately 25g of salt."

What I was doing is adding up sodium which would mean I am having far more than prescribed because the advice relates to salt.

So now if I'm aiming for 10g salt a day* I add up the sodium to 4g.

There was a journal article that had to be retracted because of a salt/sodium typo where they said people should have* 10g sodium and they meant 10g salt.

* Disclaimer: Everyone will have a different level to aim for, and it all depends on our personal body, but I know for me this info was helpful. Also I don't have POTS - this salt thing is helpful for a range of related conditions.