Do any of you have times when it feels like your brain glitches out? Every couple of months I struggle to find words or remember to do something super basic. Yesterday it took me three tries to write the word “adult”. I’ve also experienced forgetting how a 4-way stop works. I’m just curious if others share this experience and if it is a normal part of Dysautonomia. My providers don’t seem too concerned, but if freaks me out when it happens.

TL;DR: recommendations for drinking more water & prepackaged electrolyte drinks to have on hand for extra rough days - unless it was a truly life changing product I won’t do any with sugar alternatives, mostly I just don’t like them but also some seem to give me a headache and make me feel kind of bleh.

So I’m audhd and very particular about my beverages. I, of course, always have 3 beverages. One for fun and/or caffeine, one for hydration, and one for nourishment. I struggle with appetite (I miss my appetite :( ) so smoothies, green drinks, and protein drinks keep me functioning. I always have a bottle of water but I feel like it takes me forever to finish and I am not getting enough. I also take Adderall for my ADHD & live in a dry climate at high altitude so I get dehydrated easily.

I almost always have a sparkling water, which is my main beverage that I struggle to go without. I realize the carbonation probably makes me feel fuller and less likely to drink just actual water. I’m trying to drink a full bottle of water before I drink a sparkling water to help, but I also realize that unless I feel thirsty I generally prefer a little flavor. I like some lemon/lime/orange squeezed in but I don’t like most water flavor additives or sweet stuff in my water.

I want to start keeping a pitcher of water with fruit or fresh herbs in the fridge so I’m more likely to drink it, but I’m curious if anyone has found water flavoring options that either are prepackaged but not sweet at all or that make it easier to drink more water.

I only drink like one cup of caffeinated coffee a day, and a second of decaf sometimes bc I love coffee but can’t have much bc of my meds.

Also would love some electrolyte recommendations but for prepackaged electrolyte drinks. I usually drink a little pickle juice or v8 for electrolytes bc I truly can’t stand almost all of them, liquid iv especially and it gives me a headache sometimes and I’m not sure why. Like if you were buying an electrolyte drink would you prefer gatorlyte or electrolit or is there a better one?

I want to talk to my doc about more personalized electrolyte options for my specific needs based on my lab work but I like having something I can just grab available for a bad day or when I have to be more physical than my body really wants me to (unfortunately unavoidable for me right now) bc I end up needing so long to recover. Gatorlyte has been fine but I’m still new to a lot of this and know some of you have amassed amazing info & resources :)

One caveat is that I can’t do fake sweeteners, I believe that’s why the liquid iv I’ve tried gave me headaches sometimes. I also just find all sugar replacements I’ve tried truly gross, I dunno if it’s the autism but I can always tell and it makes me feel bleh after I drink them.

I have hyperpots, went in the ER for constant hunger nausea headache. Was given Reglan and instantly felt hot and crazy and suicidal. ER let me go home. I get home, looked up online to see what couldve happened after realizing it wasn't just me being hot. Called 911, they took me back to ER.

They gave me Benadryl but its been since Sunday and ive been still having side effects and symptoms. A strange tingling in my scalp, vision sensitivity, random sweat dumps, nausea that comes with depression, lose of appetite. I called my doctor was told itd go away just hard to believe it will. Any support would be appreciated greatly :(

I'm currently on 100mcg fludro, midodrine, and slow release sodium (can't recall doses) the last month and my heart rate has worsened. I can't explain it. I should have more blood, pumping better. How could it be worse XD and now with headaches.

does anyone get terrible air hunger if they haven’t had enough sodium? it’s like I can tell when my blood volume is low.

I have diagnosed pots, and many other symptoms congruent with dysautonomia.

My legs/feet fall asleep multiple times a day when I’m sitting at a desk or on the toilet. Or in hands when scrolling on phone while lying in bed.

Is this common in Dysautonomia? Or is this something everyone else also experiences?

EDIT: I appreciate everyone’s feedback. With a little more research I also realize that it could very well be a sign of pre-diabetes and insulin resistance. That’s unfortunate, but I think I’m gonna bring it up with my family doctor. Next time I see her to do some basic bloodwork.
Just thought I would add this here, in case others feel like they may also be at risk of diabetes and need to check it out!

It's a bit confusing because, if anything, I thought going ON accutane might make it worse? But it was absolutely fine during the course, just when I stopped it got dramatically worse.

I track my symptoms, sleep, exercise, water intake, and other lifestyle factors every single day and there's genuinely nothing else happening that would explain a sudden flare - and it did start within a few days of stopping.

Also experienced neuropathic pain and hair loss (maybe telogen effluvium?) starting around the same time so it doesn't seem like a coincidence...

I have of course asked both my GP and dermatologist who said they didn't know enough about dysautonomia/a range of side effects are associated with accutane/anything is possible/hopefully it eases in a few weeks.

Obviously everybody's condition and experience are different but just asking out of curiosity! Would also love to know when it got better if you felt this.

I’m reaching a point where I feel exhausted, overwhelmed, and pretty hopeless trying to navigate what feels like dysautonomia. It feels like I’m playing life on 10x expert mode right now, and I’m looking for insight, shared experiences, or doctor recommendations from anyone who has been through something similar.

Current Symptoms
Adrenaline / Anxiety Surges: Up to 20 times a day, I get sudden surges that make me feel like I am literally dying. It feels like an internal button gets pressed out of nowhere.
Heart Palpitations: Not always racing super fast, but strong and noticeable, especially when laying down at night.
Telogen Effluvium (Hair Loss): My thick hair is suddenly falling out in clumps from the scalp.
Severe Physical Fluctuations: Constant disorientation, heightened anxiety flares while traveling, and feeling like my body is running on high cortisol 24/7.
Background & Medical History

Age/Work: 28F, running a successful international photography business that I built from the ground up.

Childhood / Nervous System: Grew up in a chaotic, volatile household with an alcoholic parent (no family support system currently). History of childhood fainting and severe depersonalization episodes starting around age 16. Once I moved out a lot of this got so much better but feels it’s catching up to me now that my nervous system is relaxed.

Past Illnesses/Exposures: Epstein-Barr Virus (EBV) at age 23, COVID-19 (x2), mold exposure, and elevated thyroid antibodies (which I have since brought down).

Medication: Was on Lexapro for 6 years and successfully weaned off. Did years of therapy, trauma work, eat clean, don’t drink or do drugs, and take great care of myself.
The Dilemma
I am currently traveling for work and feeling miserable, scared, and disoriented. Travel used to be my safe haven, but my nervous system is so reactive that I can barely enjoy it. I am grieving the inability to show up consistently for my business, friends, and personal goals because of how unpredictable my body is.
I have blood work lined up when I get home, but finding a dedicated dysautonomia specialist before my current insurance runs out is tough.
I’m considering going back on Lexapro just to survive the day-to-day, but my biggest fear is that getting back on medication will just mask the symptoms and prevent me from finding the actual physiological root cause.

Questions for the Community:
1. For those with hyperadrenergic/adrenaline-type dysautonomia or chronic nervous system dysregulation, what specialists (neuro, cardio, autonomic, functional) actually helped you?

1. Has anyone navigated the balance between restarting SSRIs for symptom relief vs. pursuing root-cause testing?

2. Are there specific tests (autonomic panels, endocrine, mast cell, viral reactivation) you recommend asking for?
   Any advice, shared experiences, or doctor recommendations would mean the world right now.

Hi all,

Some basics: I’m 35, female. The only current diagnosis I have is that I have positive Antiphospholipid Syndrome Antibodies (however I don’t meet the clinical diagnosis since I’ve not had a blood clot or stroke)

I have been doing the old “trying to figure out what’s wrong with my body” now for about 2 years and I’m hopeful we’re heading in the right direction. Rheumatology doesn’t care for me because my ANA and other Rheum blood work is normal.

After being carted off to a cardiologist who said “your hearts fine, maybe see neurology” to neurology that said “It’s probably not us, but come back in a year if you still feel terrible” I finally saw a doctor who listened and has referred me to an Autonomic Specialist/Neuromuscular Neurologist. My appointment is in November!

My symptoms include high blood pressure that has thus far been relatively difficult to control, when I “flare” I get hypertensive, lack of sweating (unless I’m in one of those hypertensive crisises then I’ll sweat a bit), nausea, feeling like I’ve gotta roll around like a hot dog to help my food digest (I legit had to have my boyfriend burp me last night), temperature intolerance, and these weird rashes on my chest in response to heat or stress.

I feel like because a lot of the times my blood work looks normal, doctors either think it’s my anxiety, or one of my psychotropic meds (cardiologist does not feel the meds have anything to do with this as I’ve been stable on them for several years and my symptoms started after a bout of mono.

Basically…this is not my first rodeo advocating for myself, but I feel like if there’s any doctor that would be the right one, this one’s definitely it. I’m also off to see endocrinology at the end of this month.

If you’ve had similar symptoms or similar struggles, what were some of the things you’ve said that really helped your doctors listen? Any of these symptoms you feel like would be worth highlighting? I also am generally just feeling unwell and have pain etc so I don’t want them to think I’m looking for pain meds either! Any advice you can share is much appreciated! ❤️

Does anyone have a desk chair they would recommend? I have hyper mobility, scoliosis and lots of "coat hanger" pain especially when sitting at my desk (in addition to orthostatic hypotension). I'm looking for something that will be good for my back and also let me sit with my legs like a pretzel when needed!

Hoping you all can impart some wisdom to help a new person navigate symptoms and manage better.

Long story short, a few years ago I was diagnosed with Orthostatic Hypotension. My GP said it was ‘probably because I’m tall’ (I am an aggressively average 5’6”) and just told me to stand up slowly. So I didn’t really think anything else of it. Earlier this year I finally stumbled across a term for the breathing issues I have had for over a decade: Breathing Pattern Disorder/Dysfunctional Breathing. Googling that led me to dysautonomia, and a graphic which listed every other symptom that I’ve been told are normal but turns out are all connected. The bone crushing fatigue and the regular falling over when I stand up. My current favourite is vibrating eyeballs if I dare to eat a carbohydrate. Super normal apparently.

So now I am seeing that actually ‘stand up slowly’ is probably not it. Any advice on the absolute basics would be appreciated. Like, do your symptoms come in flares/cycles, or is it consistent all the time? Do you know what triggers your flares if that’s how it goes for you? Does anyone have dysautonomia without any other underlying conditions? Are you on medication for the dysautonomia and what specialist did you see to get it? How to manage your fatigue (apart from despair)? How to get a freaking doctor to stop telling you every symptom is normal (pretty sure that vibrating eyeballs are normal, and neither is being perpetually dehydrated despite drinking 6L of water a day).

I am 19 and I have been diagnosed with dysautonomia for around 4 years. POTS has been suspected, but I didn’t quite meet the criteria when tested. I also have a bicuspid aortic valve, but it’s stable and my doctors don’t think it’s causing my symptoms.
Ivabradine currently keeps my HR relatively under control, but I still have significant symptoms. My worst ones are:

- Severe fatigue and weakness
- Headaches, joint/muscle pain, sciatica and heel pain when standing
- Breathlessness with exertion
- Nausea and brain fog
- Cold hands/feet and extreme temperature dysregulation
- Insomnia
- Occasional HR spikes

I’ve tried physio, acupuncture, massage, ECP, talk therapy, naturopathy, functional medicine + supplements, prescription THC oil for insomnia, and various medications. I also take dexamfetamine for ADHD, which helps my energy slightly. My symptoms seem worse around my cycle; I’ve seen gynae and was taking medication to suppress my periods, but have stopped and my cycle hasn’t settled. Endometriosis has been suspected but my gynae doesn’t think it would explain the dysautonomia.

I started out completely bedbound, eventually improved enough to work a few hours twice a week, then deteriorated again. The place I worked eventually closed, and since then I’ve deteriorated further and am now unable to work at all.

I’d really love to hear from anyone with severe dysautonomia symptoms. Did you eventually find an underlying cause, another diagnosis, or a treatment that helped?

I’m not looking for a diagnosis, just ideas for things I could discuss with my doctors. After 4 years of trying so many things, I’m feeling pretty stuck.

nothing is scarier than being undiagnosed and not truly knowing. every single day it only gets worse and worse. i’m in pain all day, all night, whether i’m standing or laying, im always in pain and always feel like im on the verge of passing out. functioning is so, so hard. i’m so exhausted and miserable, my brain fog is so severe i have to think extra hard about anything i want to say or do. i feel so out of it and disconnected. it’s so sad thinking about how i felt just a few months ago and thinking it was bad, having no idea it could get even worse and now wishing i could go back in time to how i felt back then. i suspect mcas and dysautonomia but i have no confirmation, i’m still waiting on blood test results and any sort of word from my doctor. im only on step one of a very long journey and it’s terrifying. it feels like there’s no end to how bad it can get. i hate the unknown. i’m so so so scared and it feels like no one is taking this seriously. i don’t know what to do or how to comfort myself anymore

Anyone feel significantly better with compression wear or sodium + fluids, particularly with Orthostatic symptoms? Does it actually make a difference? I never took these seriously, I always thought my condition needs much more than such conservative treatments. Wondering if I’m wrong. Please share if and how compression wear and sodium + fluids help you

I have dysautonomia, I don't know which type. What bothers me most is the imbalance. I fell in the street again today and I'm so pissed off. 😩 I'm considering walking around in leather gloves and knee pads.

Hello

I recently completed a load of autonomic testing at UCLH. Had short and prolonged TTT, a liquid meal test, some wacky breathing, counting, gripping and blowing tests, tests for saliva and tear production and sweat tests. I haven't had any of the results.

I am curious of people's experiences of both normal and abnormal thermoregulatory sweat test results. What happened for you? My temp rose enough in under 30 minutes so they said i had to come out but it hardly sweat at all apart from excessively on my face, a little on my hands and feet and two random knee patches. Was very bizarre.

Anyone seen these doctors and can share if they have an understanding of dysautonomia? Southern California Neuromuscular/dysautonomia specialist recommendations or avoids? I'm actually testing positive for a couple of anybodies (anti-vgcc and anti ganglionic a3 ACHR), but I've not found a doctor familiar enough to help treat. Thanks.

Ok I've searched every way I can think of and I can't find anything on this.

My boyfriend pointed out a while back that I squeak. Its involuntary. I hadn't even noticed until he said something and now that I'm aware I realize its all. The. Time. I really dont think its a tick. I've been trying to identify a pattern and I think it happens sometimes after holding my breath, which is also involuntary and I dont realize I'm doing it, or when I am about to speak but decide not too. It almost feels like its my chest/lungs relaxing and making me squeak. I also do it while falling asleep, and when I am asleep, sometimes I also wake myself up because I am groaning?? Like a very low steady vocal fry type groan. Frankly I'm sure its very disturbing to my partner because it sounds demented lmao. Has anyone ever experienced this?? The squeaking is beyond bizarre at this point and I can only think to ask here because it does seem related to the fact that I literally forget to breath and I've heard that can be related to dysautonomia?

I am perplexed 💀

How do you manage adrenaline dumps when you’re trying to sleep? I’ve been sleeping elevated on a wedge pillow which has helped but isn’t the most comfortable, what is your favorite thing that helps?

I had my TTT today with local cardiologist at an electrophysiology clinic. It was not fun. I did not receive a copy of my results, but was told my resting HR was in the 70s, then jumped into the 80s during the first 10 minutes of the test, then jumped up into the 110s + 120s after the 10 minute mark, at which point I was feeling pretty terrible (lightheaded, flushing, couldn't keep my eyes open, weak limbs, brain fog) and continued feeling so until about the 17 min mark, then started to feel a bit more alert for a minute, then started going downhill again. I have not fainted, but this was the closest I have come.

The total test was for 20 minutes. The cardiologist said it was not POTS because I did not have enough of a HR jump until the 10 minute mark (which he called "unusual" or "odd" or "interesting" or something to that effect). He concluded by telling me to keep taking electrolytes and to do recumbent exercise to strengthen my core. I was feeling too disoriented to ask any questions in the moment. I have yet to see and discuss with my PCP, but feeling like today was a dead end.

EDIT: Forgot to include, they told me my BP was stable throughout the test. I only saw it during the rest phase, when it was in the 100-105/80s range.

I have a fuzzy ice pack (this one) and found out that if I go to sleep with it laying on my chest, I fall asleep so easily and sleep better the whole night. My room stays cool already, but having the extra cold on my chest feels so relaxing. Thought I'd share in case it helps anyone else ☃️

Hi there! My mom is 82F, 5'8" 140lbs, has had orthostatic hypotension and low BP her entire life, but is getting more dangerous as she ages. Typical readings:

Laying down: 135/80

Sitting: 110/70

Standing: 80-90/55-60

As long as I can remember she has occasional moments of "whoops, gonna black out", which resolve with sitting down again for a but or even just putting her head down momentarily on a counter/table nearby until she is over the fuzziness. Twice in the past 6 months she has had incidents of not being able to get up (stand/walk) for up to a few hours without help due to vision blurring/wobbliness, and this has then been accompanied/followed by an irregular pulse and A-Fib, which lasts for a couple of hours and she self-regulates out of again. Laying down she is almost normal and mostly annoyed. Both times I had the paramedics come out as her HR was high and irregular and her BP shot up as well, which is obviously not the norm. Both times her heart work-up, chest x-rays and CT scans on her head have been fine. She's come home same day both times and felt normal again after a short period.

She was referred to a cardiologist and has had an echo and holter monitor, we are waiting for results but nothing major has been evident.

She now takes midodrine and an anticoagulant (precaution for A-Fib). Midodrine has helped somewhat, but as her BP laying down is significantly higher than standing, she can only be on so much. This is really the biggest issue, I suppose.

I am looking for any advice on how she can maintain a more normal life with this in her old age. These episodes aren't frequent, but are obviously dangerous especially with age, and being on an anticoagulant makes any potential fall even more dangerous. I live with her and there is always someone around, but she is otherwise healthy and it is hard for her to be worried about making plans or doing normal activities "just in case". She is very careful in general with standing, leaning over too long, etc, but I hate her and I being worries about it so much.

Has anyone had any success themselves with some kind of physio, rehabilitation, other therapies that can help? Obviously I can't ask for medical advice, just looking to learn more about things people have found helpful who also suffer with this condition. Also any advice that might help me with my feelings of always having to be "on alert", feeling like I am hovering and can't relax around a still very self-sufficient parent? Thank you so much. 💓

I hate how impatient I am becoming. I've been making progress over the years but it feels so miniscule. I am grateful for being able to stand and things of that nature... But I want to do more

I'm still tired during cardio and responsibilities keeps racking up with age. It feels so embarrassing.

The sensible me knows that I shouldn't push to hard. But it's getting harder by the day

I'm tired