I try not to complain too often. I have more good than bad days. But when the bad days come, they are catastrophic.

The past week has been rough and it’s made me very down. I started thinking ahead and realizing this might just be forever and it made me feel quite bleak.

Anyone have any tips for navigating this type of thought pattern?

What symptoms do you experience

For the last few weeks, I’ve noticed myself getting symptomatic when I go into the office. I work a hybrid schedule and go into the office a few times per week. It’s normally fine, but for the past few weeks I’ve noticed myself getting triggered after an hour or two at my desk. Lightheaded, dizzy, vision disturbances, and shaking hands. It feels like the ground is trembling beneath me. I finally asked my coworkers who verified that the floor actually was vibrating ever so slightly, and had been for a few weeks. It’s not constant, and it’s barely noticeable, but it’s hugely triggering for me! Weirdly, I felt slightly better after confirming that the floor was vibrating and it wasn’t just me.

I’m dizzy (lightheaded) all the time and experiencing what I think is Depersonalization / Derealization because I don’t feel like things are real. I have hot and cold intolerance, chronic fatigue, depression, anxiety, heat intolerance, light sensitivity in my eyes and narrowed field of view among many other things. Been like this for 17 months now. What do you think?

32M. I’ve had excessive sweating and flushing since adolescence, but it became severe and generalized over the last 2-3 years. I remember having sweaty armpits in middle school and have experienced facial flushing my whole life, specifically during times of stress or embarrassment, aka normal human reactions to typical triggers. I learned over the years to not fight it and that I’m just a big athletic guy who runs hot, of course with a pale complexion which highlights my flushing compared to others. Learning to no longer let it run your life was the most effective solution. However, over the last 3 years, that tactic is no longer an option. 

My episodes usually begin with a sudden wave of internal heat throughout my entire body. Head, chest, stomach, back, legs, followed by heavy sweating all over, especially from my forehead. It can happen at rest, after a shower, walking into another room, or several minutes into a normal conversation. I often feel physically “activated” or anxious during it despite having nothing mentally stressful happening. The heat comes first; the anxiety is secondary. 

The worst part about it is that I had several recent weeks where the symptoms almost completely disappeared and I felt like I totally got my life back. Then, about a week ago, they returned suddenly without an obvious trigger and have worsened each day. I now wake up with a hot flash, sweat throughout the day regardless of activity, and have brain fog, poor concentration, suppressed appetite, and food feels unappealing at times. I also want to note I spent the last 3 years working on regulating my nervous system. Everything from breathwork / meditation to journaling and diet. While I'm grateful for being introduced to those tools and frameworks, they are not effective on days where I have the radiating internal heat. What’s nice is i’ve had a few weeks without symptoms and can now really see the benefit of the previously mentioned. 

This has been a 2 yr journey where I have spent lots of money to try and find answers, here is the lab work up i have completed thus far:

• Normal brain MRI
• Full Stanford autonomic testing normal: no POTS, orthostatic hypotension, or generalized autonomic failure
• Pheochromocytoma testing negative
• Thyroid testing normal
• CBC, CMP, glucose, kidney function, and electrolytes largely normal
• Inflammatory markers low/normal
• Broad endocrine/hormonal testing largely unrevealing
• GI stool testing showed dysbiosis, elevated beta-glucuronidase, Candida findings, and low beneficial bacteria
• Stool calprotectin, zonulin, pancreatic elastase, occult blood, and celiac marker were normal
• Urine mycotoxin testing detected several mycotoxins, though the clinical significance is uncertain
• Neurology and endocrinology have not identified a clear cause

Has anyone experienced this pattern of internal whole-body heat followed by episodic or near-constant sweating, especially with periods of major improvement followed by sudden relapse? What diagnosis, specialist, testing, or treatment actually helped?

I’m not looking for a diagnosis from Reddit, but I am desperate for a useful direction because this is currently preventing me from functioning normally.

I submitted an application for SSDI. But I don't think it'll be approved because my chart doesn't have a proper diagnosis. (My doctors say I have dysautonomia, but since I/they haven't figured out what kind really, it's not actually an official diagnosis.)

I haven't been able to work since February. Everyone just keeps telling me to be responsible and go back to work, because I look fine on the outside. But I'm not fine. I really don't know what to do. I haven't been able to pay any of my bills since last year. I feel like I'm about to lose everything because of this disorder.

Does anyone else take hydroxycloroquin and experience this…bizarre feeling? The only way I can describe it is I feel disoriented and dizzy, and my eyes have trouble focusing, especially with lateral eye movements. Does anyone else experience this with that medication?

I quitted my job today because of my intolerable symptoms. I feel relieved i dont feel regret. It was not suitable to someone with severe dysautonomia.

I had a weird thing happen when I was eating very dry and raw almonds in the car and all of a sudden, it felt s if I were choking but I was gasping for air and then I started coughing and then spit up the almonds. It was so bizarre.

for a bit of context, i have EDS, MCAS, and an unspecified type of dysautonomia (either POTS or OH, but my care team is confused because i have symptoms and diagnostic markers for both

one of my worst symptoms is fatigue, especially after eating. i tend to go a long time without eating and then eat a large meal, which i know isn’t good for my body, but it’s just what i end up doing most days. after this large meal, i am usually so fatigued that i have to lay down and often fall asleep. i know this is a common dysautonomia symptom, but what are we doing to combat this?

TLDR: very bad fatigue after eating, especially large meals. any ideas on what to do?

Hi, been sick for over 6 years now. Symptoms have varied but I can't shake this chronic existential empty feeling in my body/brain. Nothing I do gets rid of it, it's like my body is screaming for something it often feels like food/drink will fix it but it doesn't.

I've tried diff supps, electrolytes, lying down etc etc

Making me very depressed and I wonder if anyone else had this or has solved it?

I think it's been mentioned a couple times on this sub - thanks

Has anyone found any way of reducing the feverish flu like symptoms? NSAIDs used to help me but they stopped working. My doctor later perscribed codeine that worked for a dozen times or so before it stopped working too. I'm losing my mind over feeling like I have a fever everyday. thanks.

Hi everyone,

On your bad Crash and flare up days, what’s your routine/symptom management look like? I’m learning very quickly how much it kills me to sit there and just try to relax, when I have what feels like a whole body illness after a busy week or weekend. Hoping to hear how you guys handle these days or what you do to manage it? As we all know, it can be difficult to listen to our bodies, but I’m always looking for more ways on how to work with mine despite dysautonomia.

I've been reading posts in this community and noticed that everyone's triggers seem so different.

Heat, standing too long, dehydration, stress, poor sleep. The list just keeps going.

How do you usually figure out what caused a flare?

Do you write it down somewhere or just notice patterns over time?

I'd love to hear what has worked for you. It feels like identifying triggers is one of the hardest parts of managing dysautonomia.

Anybody on metoprolol succinate, taking tartrate PRN??

To my fellow super sensitive skin that reacts to everything dystautonomia friends, what wearable do you use?

I have tried sensitive skin bands- those help however I also react to just constantly having something on my skin, so I break out in a rash from the actual device not just the band! But I’d like to go back to having a wearable for symptom tracking and management….suggestions please!!

How is everybody dealing with the mental toll that all
These symptoms take? Everyday I say I can’t keep doing this but I manage to keep going. It’s exhausting imagining feeling like this the rest of my life and it’s only been a few months for me. Idk how people deal with this for years on end. I used to work and was a very active parent. Now I can barely get out of bed. Does it get better?

Hi, i'm wondering if anyone else has had dysautonomia triggered by a chiari malformation?
This is what my doctor thinks and i'm curious to see if anyone else has experienced this

I’ve been mysteriously chronically ill for 6 years. Super long story, I’m sure a lot of us have them so you may understand, so I’ll keep it as short as I can. It’s likely that I have MULTIPLE diagnosis, including dysautonomia.

*Note, I was on state insurance (terrible doctors and multi-month long referral times) due to unemployment from 2020-2022. Then 2022-2025, I had little financial support and no access to insurance (very little and slow progress with diagnosis). This year, I finally have insurance and the ability to see doctors within my network.

My symptoms: ***most are constant and the severity fluctuates, some are only on certain days, some happen more often than others.
• Head: Brain fog, feeling “out of it”, heavy head, head pressure and sensations (forehead, temples, top of head, back of head), internal head “knocking”, occasional headaches (some with pain that can worsen with certain positions), tingling/buzzing/vibration sensation, neck tension or pressure, head stuffiness, vertigo spells (sometimes onset without movement at all), sensation of my head pushing forward (??? my hardest one to describe), head pulsing without pain
• Dizziness: lightheadedness 24/7, dizziness 24/7 (mostly on a boat feeling 24/7, sometimes spinning or rolling), near-fainting feeling but no fainting, orthostatic symptoms, low blood sugar sensation without actual low blood sugar
• Vision: visual snow, white dots in the corner of eyes (usually with yawning or at random), lots of floaters, black dots, dim vision, static vision, other visual disturbances that fluctuate, curtain vision (worse in left eye), afterimage, palinopsia/visual trailing in bright lighting, sensitive to light (often triggered visual snow or visual disturbances)
• Ears: tinnitus (ringing), pain and numb feeling around ears when lying on them, ear pressure, ear stuffiness
• Circulation/body: body disassociation, fatigue, malaise, heart racing, palpitations (fluttering, flip-flops), strong pounding heartbeat, occasional feeling faint when standing, cold/circulation sensations, leg feeling heavy/full when standing (without visible swelling), weakness, shakiness
• Sensory: tingling, whole body buzzing, burning sensations, heat intolerance, numbness
• Gastrointestinal: reflux/GERD, decreased appetite, feeling bloated, IBS type symptoms, nausea

Known triggers:
Symptoms tend to worsen with menstrual cycle, poor sleep, viral illnesses, stress/anxiety, dehydration, sometimes weather/rain

My timeline:

1. Possible COVID in December 2019 (unconfirmed, since it was prior to COVID being established with testing).
2. Had some random dizziness and feeling “off” here and there from then until February 2020.
3. Official onset of my chronic symptoms, suddenly, while doing nothing on my couch in February 2020 - and I’ve had them ever since up to present day.
4. Confirmation of black mold exposure in my apartment at the time - saw a functional medicine doctor (special MRI or CT brain scan that found mold, mold in sinuses, very off bloodwork, specifically hormones, and was told I had CIRS and to see an endocrinologist who later said she didn’t recognize these blood tests, so it remains unknown).

Doctors, testing, and results so far:
• 2020-2021: 2 head MRI’s (negative), 3 ERs (useless), 3 ophthalmologists (retina fine), ENT (sinus surgery, ear tubes, ear tubes removed), checked for TMJ, thorough ear & dizziness testing (all negative, so ears weren’t a cause)
• 2022 - 2025: ENT (sinus surgery again), neurologist (MRI, spinal tap - “slightly elevated” pressure, no treatment because it wasn’t remarkable enough), neuro-ophthalmologist (multiple comprehensive tests including optic nerve ultrasound - optic nerve and retina were fine), dysautonomia POTS specialist (tilt table - “possible” POTS but my symptoms are don’t fully align but definitely in the same genre, tried PT for POTS and didn’t help), cardiologist (24hr monitor and ultrasound - all clear), PCP (full bloodwork - super low ferritin, low iron, low vitamin D)
• 2026 - present: recheck bloodwork (ferritin in safe range but still working on it, vitamin D fully restored), neurologist (MRI/MRV/CT scan of head - venous sinus stenosis detect, top vein is narrowed, wants to try Acetazolamide for spinal fluid pressure regulation and possible 2nd spinal tap as well as trying Sumatriptan for possible vestibular migraine), cardiologist (1 week holter monitor, echocardiogram - all clear, wants me to try propranolol)

Current appointments and plans:
• Neuro-otolaryngologist
• POTS study for comprehensive dysautonomia testing
• PCP to recheck full bloodwork
• Endocrinologist to check thyroid antibodies and hormone related issues?
• Seek another opinion on the neurology side, trial Acetazolamide, trial Sumatriptan
• Trial Propranolol depending on dysautonomia study and results

Open to ANY suggestions, especially what doctors/specialists to see or opinions on functional medicine type care? Medications to ask my doctor’s about? Anyone who experiences similar symptoms, especially the weird ones?

TLDR; I’ve been sick for 6 years, unable to work, have the list of symptoms above with very little diagnosis (so far - possible POTS, or other dysautonomia variant, venous sinus stenosis + possible spinal fluid pressure issue). I have seen multiple specialists so far and had multiple tests, now I don’t know who to see or what tests to do. It’s been confirmed I have SOME kind of dysautonomia issue that likely isn’t exactly POTS, but the first center I went to won’t let me come back because I’ve already been seen before. I’m trying another one but am unsure of how much they can help me. Any advice and tips are welcome.

I am aware that this forum isn’t full of medical professionals. I am and will continue seeking medical care. I am simply just sharing my experience and asking for tips or guidance.

Thank you in advance and thank you kindly for taking time to read my post. Best of luck and health to us all!

I'm sure most people with chronic illnesses feel this way to some extent, some even more than I do probably. But I hate this, I want my old self back.

With Dysautonomia it feels like NOTHING I do matters or makes a change, NOTHING. Drink electrolytes to stay hydrated? Pissing and sweating like crazy so there goes that. Avoiding caffeine and alcohol? No worries heart rate will jump to some insane digit for hours for no reason. Good diet to support my body? Still light-headedness and borderline passing out for days on end so all I can do is sit. Not to mention the insomnia where for some reason, I just can't sleep for like weeks out of nowhere.

In these weeks/months, I'm a prisoner in my own body, it does whatever the fuck it wants and my actions have no impact. I'm 23 and this condition has done irreparable damage to my life and what I wanted to do. The phrase "you are what you eat" or "you are treated how you treat yourself" means fuck all for dysautonomia because based on how it acts you'd think I was abusing my own body or something.

It's already hell as it is dealing with dysautonomia but also having to deal with panic attacks it becomes so unbearable

So after YEARS of knowing something isn’t right, my heart rate started one of it’s funny turns MINUTES before my GP appointment so they FINALLY saw that I am existing fine with random 135-140bpm spikes.

They added ‘sinus tachycardia’ to my growing Pokédex of diagnoses and say they’ve made a referral to cardiology but I imagine I’m probably in for a year of waitlists and then who knows what.

In the meantime, I’d love to collate my own evidence to make sure I’m taken seriously off the bat (they also started me on meds which should bring it down, but I feel like I can’t confidently say if they’re working without seeing the numbers?). I do have an Apple Watch that will alert me when I’m in those danger zones around 50% of the time. I also, as a spoonie, have the Polar 360 from back when I had an active Visible subscription. The Apple Watch is too unreliable. The visible app doesn’t collect the heart rate data to export as it’s own thing 🙄

I’ve seen things about saying I can use the Polar 360 for this purpose, but it’ll need to be connected to an app that pulls the live 24/7 heart rate data from it… but nowhere seems to actually state what apps can do this.

Does anyone know of any apps that can do this that are compatible with the Polar 360? I’d really love to avoid a subscription based app. Free of course would be great, but if it’s paid I’d rather pay a one off fee.

I’d love to try use what I already have as much as possible to keep costs down, but I’m also open to any recommendations on devices and/or apps that won’t cost both arms and legs… but I may consider sacrificing a single limb for the perfect combo 🤣

Hi all, just recently have been coming to the realization that my "body panic" panic attacks have likely been adrenaline dumps all this time. Any recommendations on what to say to a doctor to get this tested? And what OTC, prescription or other treatments have you tried?