r/dysautonomia

Hi fellow sufferers.

I just went into hospital. Waited 20 hours to see a doctor, but I was at my Hail Mary point.

The doctor suspected stroke or brain tumour.

I had a CT scan which suggested tumour - enlargement in right side and smoothness. Consultants everywhere and a slight feeling of staff panic.

They ordered an MRI.

Spent the night thinking, ok, this explains it. I don’t want to go out this way. I cried all night.

Then, the next morning, a team of doctors came to see me. The MRI was fine. No tumour. No stroke. YAY.

I talked about my nervousness, anxiety, zero energy and pain. Also mood and wanting to die.

They listened!

I am on a new medication. It’s called pregabalin.

Wow. Just wow. Less pain. Much better mood. I have a feeling of wanting to get back into shape and do stuff.

I have been completely bed ridden for months. My body is still frail and I have to take it easy but my body feels like it’s working again. I still need a walking stick and some low back pain but it feels like my nervous system has settled down.

I was in complete burnout and my nervous system was shot after years of masking autism. This seems to have worked. Fingers crossed I am on the mend.

Has anyone else tried this medication? Did it help?

I’m having some dexterity issues and I’m curious what other people struggle with.

Apparently because small fiber autonomic nerves are everywhere and control everything, it's possible for someone to have dysfunction that causes the body to produce lots of urine even in conditions where one hasn't taken in lots of liquid. This is happening to me increasingly, and I'm just curious how many other folks have noticed this as a symptom.

I'm trying to better understand the different ways dysautonomia can begin and evolve over time, as I'm currently trying to get a better grasp of where I am in my own journey. My symptoms appeared suddenly following a beta-blocker taper step that I think was too fast and it has been a lot to navigate. It’s already been a long road, but I’m finding out that, that might be my only way out of this.

I’d love to hear the stories of how your symptoms first showed up—specifically, if you had a distinct trigger event that started it all, or if things just seemed to appear out of nowhere.

For those who experienced a sudden onset did your symptoms gradually get better over time? Did you ever reach your "before" baseline again, or did you settle into a new normal?

The limitations of Dysautonomia are hitting hard this morning. I'm shattered after my 3 days of work. I switched to a 3 day a week role hoping it would help (it also has other things going for it including generally working in a more stable temp environment). I'm 5-6 weeks in and realising that I'm still really struggling. And it sucks cause it's thursday-saturday, so if/when it wipes me out then it knocks out my Sunday with my husband.

He's trying to get what I'm going through, but he's struggling with the transition that me and our ageing/degenerative conditions laden dog are placing on our life. He's likely on the autistic spectrum so change is hard, especially when it's forced.

He tries not to blame me, but sometimes it still feels that way.

This morning I had to be honest about not being able to consider a morning dog walk in what looks to be lovely fresh conditions outside before I've eaten, and not being able to guarantee that my nervous system won't be saying no even after food. He accepted and is doing the morning dog walk alone right now. He then followed up with how he'd like it if I could sometimes be a bit less resistant to getting up and getting going in the morning.

It's so hard to get him to understand that these aren't choices I'm making. They are choices my body is making for me. And that if I push through there's a chance I'm just increasing the interest on the energy debt and it'll take longer to payback.

He says he gets it, and then he remembers that only a few weekends ago we did manage a couple of good walks on the Sundays. And then he says he's just ranting, which I get. It's hard though cause he doesn't have other people to rant at, so he rants at me, but that just makes things worse.

So sorry, you guys are now getting my rant because he's out walking the dog and I've been sat here crying cause I just wish that I could go for a goddamn walk with the dog and life's not fair and that sucks.

Extremely long post, but it's because I really hope sharing my experience will help others out there. I will put a TLDR at the end for convenience!

My foundational event happened the morning of August 26th, 2026. As of writing this (October 4th, 2026), I have been gotten back all normal tests and results which I will list below. I currently am experiencing symptoms still, and for the time being my doctors are simply pursuing the idea that everything comes from a psychiatric condition based on some trauma and poor stress management habits that they are hoping therapy and medications will fix. Will update this point as I can, but first:

SOME POINTS OF BACKGROUND CONTEXT:

To start, I am 30M living in Southern California. I have a history of several mental disorders which include (my therapist believes) ADHD and general anxiety, and I specifically point this out because I believe it has also likely exacerbated my dysautonomia symptoms - for example, I tend to try and push myself hard, deny myself breaks, challenge myself to push through discomfort, and find it difficult to switch tasks and generally regulate or manage my stress and focus. Aside from possible ADHD, I've also experienced catatonic episodes, convulsions, and a range of much more mild typical mental health issues starting and peaking in my adolescence during times of intense emotion and stress. Because of all that, I did get an MRI and the neuro at the time said my problems were in my mind and not my brain.

Mild possibly relevant symptoms from throughout my life before this dysautonomia adventure:

• I generally have constant bad posture, bump into things while walking, always slouch, lounge, and instinctively lean on tables or shelves for support to avoid standing up straight.
• During long periods of physical inactivity, I've noticed I would develop issues that would flare up even when doing mild exercise: difficulty breathing, congestion, numb or tingly limbs, feeling faint, dizzy, lightheaded.
• Extreme sensitivity to cold water, to the point where my limbs go numb and I feel like I'm going to pass out until I get used to the water after ~5-10 mins, at which point I am fine after.
• GERD and skin rashes, including dermatographia.

The past two years, however, I have also experienced months of being in pretty good physical shape, being able to go hiking, rock climbing, being out in the sun (70F-90F), light jogging, etc, with little to no issues whatsoever.

Over the past year, I lost a close family member, became extremely isolated from all my friendships, and have not been able to hold down a job because of layoffs, reduced hours, or other reasons. Basically, I've been extremely stressed because of financial, social, mental, and general instability.

I also work at an outdoor nursery, where temps can often get to high 90F/low 100F, with mild to high humidity and dew point.

TIMELINE AND SYMPTOMS:

On August 25th, I noticed I had a particularly difficult time working. It was early morning during a mild heat wave (probably low 90F), but it was hard for me to breathe, I felt weak and light headed, nauseous, and kept on kneeling to try and recover. I eventually sought refuge in our AC break room where I thought I was about to pass out, but simply entered a state of hunched over stupor (possibly catatonic), and had some mild tremors. I relaxed as much as I could, focused on my breathing, and after a few minutes felt better to get back to work, and the rest of the day went normal. The next morning, I woke up feeling absolutely terrible. I was extremely overstimulated by everything, was nauseous almost to the point of throwing up (I gagged a bit to near-vomiting in the restroom after a bout of diarrhea), was shaking and having seizure-like tremors, and felt like I was genuinely going to die. I went to the ER, got an EKG, Chest X-Ray, blood work, and, no surprise, doctors said I was perfectly fine. They even pointed out that my electrolytes were fine, and suggested I might just have PNES. I had a terrible time afterwards; what felt like tachyarrhythmia when falling asleep, tremors, feelings of falling down, etc, all taking place as I felt I was about to fall asleep. My PCP was initially quite dismissive, and said that I was simply exhausted by the heat and to drink more electrolytes. I took a few days off from work, but came back, coincidentally, during a time period of mild weather, and everything felt fine for a week or so.

However, as temperatures went back up, so did my struggles. I started to panic more, get pre syncope sensations, especially after having to stand up at the cashier for several hours (POTS symptoms?), and eventually had to leave work altogether. An interesting note is that, the night before my last day of work, and my morning drive back home after work, I had a deep episode of crying and weeping, lamenting the loss of my family member and friendships that I had depended on for years. It was my first time being able to process any of the emotions that I had been developing for months.

Since being out of work, my condition has spiraled, but gotten stable, thankfully, over the past few days. I've been experiencing headaches, dizziness, erratic BP and HR, feelings of panic, impending death, weakness, and so much more of what you can typically read up on here. The most troubling condition I've developed which started about a week ago was awful insomnia, laying down for 3, 4, 5+ hours in ideal sleeping conditions but not being able to sleep at all. Throughout this past month, however, I have also been able to go on a night hike, go on a night bicycling event with some friends where I was able to push myself fairly hard reaching BP of around 140 (panicked for a moment but calmed myself down and assured myself I wasn't going to die, also doused my head with water and had someone give me a ride home), and also go to tour an arboretum in 90F weather with only a cooling towel and handheld fan for around an hour. I generally feel myself improving, despite seemingly developing a horrendous new week-long condition every week.

SUMMARY OF TESTS AND SYMPTOMS:

Coincidentally enough, a few months prior, I had an EEG because of some very frequent headaches I was experiencing (which at the time, was likely due to too many video games, and they stopped after I quit playing). The EEG results showed up a few weeks ago and my neuro said he really didn't think I had seizures at all, and after describing my dysautonomia symptoms, he suggested I consult with a psychiatrist. He did, however, arrange for my to get an MRI, which has also come back normal. I am currently waiting for some upcoming therapy and psychiatrist sessions.

• EEG: normal
• MRI: normal, except for "small bilateral maxillary sinus mucus retention cysts"
• Blood work: normal
• EKG and chest X-ray: normal
• I have not yet tested for nervous system related vitamins and minerals like B complex, D, ferritin, blockers, magnesium, etc, or for hormone related issues because of blood work from earlier in the year showing my vitamins and thyroid are normal, but would like to explore more nervous system related tests with my PCP soon.

I have, overall, experienced

• Eye twitches that feel like my optical nerve is being pulled or grabbed (have not experienced in weeks)
• Tremors, freezing legs, or falling down a pit sensation while about to fell asleep (not experienced in weeks)
• Convulsions, tremors, catatonic episodes, and muscle control issues, especially in my neck, arms and forearms
• Neck and back strain, noticeable when trying to sleep that also flares when stressed or anxious
• Difficulty looking up
• Anxiety, fatigue, panic, heat intolerance, light headedness, congestion, headaches, brain fog, lack of motivation or direction to do anything, diarrhea, etc
• Easily overstimulated and aversion to screens, social media, videos, sounds, music, etc
• Debilitating insomnia, getting only 1-2 hours of sleep a night, despite being able to lay down for several hours in ideal sleeping conditions like dark air conditioned room

TLDR:

Doctors (ER, PCP, neuro, therapist) think I have a psychiatric condition where my trauma manifests somatic symptoms that include the symptoms listed above. They have not yet once mentioned dysautonomia and hope that as I get therapy and the right medication, all my symptoms will go away. I personally hope that with or without therapy and meds, keeping calm and slowly regulating my nervous system will get me feeling better.

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If you made it this far, I appreciate it, and if I can help at least one person, it will have been worth it for me. I will gladly answer any questions in replies or DMs; I wish everyone here the best. Much love!

Im age 34 with lifelong undiagnosed Orthostatic intolerance and also lifelong sleep apnea (16 RDI/h).

I get about 25-40 elevated heart rate and 25-30 elevated diastolic blood pressure when standing up in the Schellong test.

I wonder if these conditions can be connected?

Standing up: I usually feel weak and dizzy if I stand upright and still for too long, for example if I’m lined up in a queue I will get uncomfortable after about 5 minutes and either crouch/squat or walk around to get relief.

Sleep: I often wake up feeling wired and jittery, as if in fight and flight. And my average heartrate while sleeping (65-70) is often higher than resting daytime (60).

I’m currently pursuing sleep apnea treatment (expansion + jaw surgery) because didn’t notice much relief from PAP.

I wonder if there’s any tests or specialists I should see to get the mechanism and causes of the Orthostatic intolerance more analyzed?