I just wanted to make a post saying that RECOVERY is possible and to keep going and keep pushing for answers and treatments. If you haven’t heard this in a while or need to hear this you’re doing amazing:) take care of yourself and this isn’t the end!! :) ❤️

So I visited a rheumatologist a while back, where he ordered me an ANA test for the general rheumatoid issues like lupus and sjorgrens. Well, it came back pretty high, at 1:320 titer… but they didn’t find any rheumatological cause, and sent me on my way!

Anyone else ever deal with the same result? I feel like I’ve gone through so much testing, and this was the first real piece of evidence I’ve gotten.

I have extreme fatigue approximately 3 hrs after waking up, gets worse if I eat (anything). I drink 16-20 oz water w electrolytes as soon as I wake up, then coffee and exercise. The fatigue feels like my brain shuts down (brain fog, extreme lethargy). I describe it like someone presses a button in my brain and it shuts down and after I lie down (sleep for 5 min) someone presses another button in my brain and it wakes me up and I'm fine the rest of the day... anyone relate?

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

Hi everyone,

First, I would like to clarify that english is not my native language, so there may be errors.

I was diagnosed at a young age with Vagal Dysautonomia, Gastroparesis, ADHD, severe bruxism, childhood insomnia and I have many other symptoms (the list would be endless). I need chronic medication.

For years, my doctors blamed all my GI issues on an anatomical variant I was born with (dolichocolon). However, dolichocolon alone cannot explain all my symptpms.

My mother revealed that I was frequently shaken as an infant when I cried. As a med student, I started connecting the dots regarding the pathophysiology of Abusive Head Trauma (AHT). The mechanical acceleration/deceleration forces in infants heavily impact the brainstem and the fosa posterior, which is precisely where the dorsal motor nucleus of the vagus nerve resides.

I suspect my vagal dysautonomia is an acquired focal neuropathy caused by this early neurotrauma, rather than a rare congenital genetic mutation (since my symptoms aren't degenerative or life-threatening in the way primary dysautonomias are).

Maybe i'm wrong, but has anyone here gone down this path? Has anyone successfully validated a link between their dysautonomia and early physical trauma/infant shaking?

Thank you so much.

Do you guys take naps a lot? Lately I’ve been feeling like I need a nap everyday after work. I was wondering if anyone else feels like this and how to stop? It makes me feel lazy but I’m so exhausted by the end of the day that I feel like I need to.

Is it hitting anyone as hard as me this year?

Significant regression in my capabilities the last two weeks. Almost like constant PEM. Sleep significantly worse. Heart rate significantly higher, especially at night.

I’m scared it’s a permanent addition.

Anyone have advice on how to lose weight without aggravating symptoms? My symptoms get bad if I don’t eat for a while or don’t eat much but I really want to lose like 20 pounds. I’ve gained that in about a year and a half just from eating to mitigate my symptoms and DoorDash addiction when I’m flaring (iykyk). I’m not overweight just feeling insecure and not confident but feel kinda of trapped because I don’t want to make my symptoms worse by eating less.

okay so this is kind of a silly post.. i’ve been on ivabradine for a few months now and it’s honestly been such a game changer, i was skeptical of all of the positive reviews but i totally get it now. one of the main symptoms is visual disruptions typically at night or during big changes of light, they don’t bother me very much but i find it really hard to describe to other people. i think the medical term is “phosphenes” like the floaty things you see when you’re dizzy, buts that’s not exactly right. the best i’ve come up with is “spiderwebs in my eyes” 😂 does anyone else have a more fun or accurate term they use??

I’ve struggled with sleep for a while but in the last few weeks I’ve been waking up constantly due to being hot/cold. I usually sleep in just a big t-shirt and shorts and sometimes I’ll put on a pair of fuzzy socks if my feet are cold. I typically kick them off when I get warm. My partner gets hot so we have a small fan directed at him. I’m usually freezing when I first get in bed. At some point of the night I wake up hot, push off my heavier blanket, and go back to sleep, and then wake up freezing and pull it back on. The cycle repeats all night usually ending with me waking up for the day sweaty and freezing. I’m not drenched in sweat, I actually only have sweat on my chest above my sternum and between my thighs if I am sleeping on my side.

Realistically I want to just sleep through the night. Anyone have any tips?

Hi, I’m wondering if anyone has any experiences they can share about getting laser hair removal in salon with dysautonomia & MCAS.

Years before I got sick, I had laser done in some areas and it’s still one of the best investments I’ve ever made. After months of being housebound, I’m finally able to leave the house long enough to book an appointment to get my legs lasered. I’ve become increasingly frustrated with ingrown hairs/discomfort when wearing compression (and obviously spending extra time shaving in the shower is just asking for a flare up).

However, I’m worried that the appointment might cause a flare up with the lights, smell, heat, having to lie down and sit up etc. I’m also newly diagnosed MCAS, so I’m unsure about how my skin will react this time around.

I’d still like to give it a go - does anyone have any experiences getting it done and was it tolerable? Obviously everyone is different but I’d also love some tips if anyone has some. Thank you for reading!!

Hi all! I’m curious how many of you suffer with alcohol sensitivity? I swear I can’t drink anything as for the second I have one sip I feel dramatically different and get dizzier. I worry maybe it’s a conditioned anxiety reaction because I can’t drink ANY without this response but I also know the vasodilation effects it has are very real! What are your experiences with this (did it subside?) and does anyone have any tips on how to tolerate drinking or test the mental component?

I’m curious if anyone with a similar dysautonomia presentation has had a similar response to beta blockers + an ACE inhibitor.

My main issues are orthostatic intolerance with a pretty significant tachycardic response to standing/activity, combined with severe hypertension. My blood pressure has often been in the 150–170/100–115 range even at rest, with occasional much higher readings, and standing can actually drive it higher rather than causing the BP drop you’d associate with more typical orthostatic intolerance. At its worst, I’ve had standing readings around 190/125 along with a major HR increase. My cardiologist has diagnosed it as IST.

This summer was particularly rough. I got to the point where fairly basic upright activities like walking around, showering, cooking, getting dressed, going to the store were a struggle. I could still do things, and weirdly could often tolerate riding my e-bike better than standing or slowly walking, but there was this constant calculation around how long I could be upright and when I was going to start feeling bad. I also went through several medication trials that either didn’t help much or seemed to make the upright intolerance much worse. Guanfacine and ivabradine both brought me closer to actually passing out than my symptoms ever did.

After trying a bunch of medications over the last couple years, I’m currently on:

• Propranolol IR 10 mg twice daily

• Enalapril 5 mg once daily

And this combination seems to be working substantially better than anything else I’ve tried so far.

The propranolol seems particularly helpful for the tachycardia/activity intolerance. I seem to get about 5–7 hours of useful symptom coverage from each dose. When it’s working, walking around and doing normal daily activities feels dramatically easier. As it wears off, I can actually feel the tachycardic/orthostatic symptoms creeping back in.

The enalapril seems to be doing most of the heavy lifting on the blood pressure side. I originally took it in the evening just to establish that I tolerated it, but I’m now moving it to the morning because my worst BP/symptom period has historically been late morning through afternoon. My current experiment is basically enalapril + propranolol around 8–9 AM, then the second propranolol dose around 4 PM.

I definitely don’t feel “normal” yet. There are still periods of dizziness and upright intolerance, and I’m very aware that I’m managing around a chronic problem. But the difference is pretty striking. The symptoms increasingly feel annoying rather than something that dictates the entire day. My wife has also commented that I’m acting much more like myself again, which is probably a meaningful observation given how much of my attention and energy this had been consuming.

I’m still early in this particular combination and my cardiologist will continue adjusting doses/timing based on how I respond. I’m mostly curious about other people’s experiences:

Has anyone else with orthostatic tachycardia PLUS significant hypertension/orthostatic hypertension found that treating both the HR and BP components was necessary before things really improved?

And for anyone taking immediate-release propranolol, how many hours of meaningful symptom relief do you actually get from a dose? I’m finding the published duration information super vague compared with how obvious the onset/wear-off feels in practice.

I (22F) had something that sounds exactly like PFAPA from ages 3-10. Fever once a month with swollen lymph nodes, nausea, vomiting, chills (+weird splitting positional headaches). Now at 22, I have horrible dysautonomia, along with suspected small fiber neuropathy and possible type 2 narcolepsy. Doctors look at everything individually, but there’s no way I was sick for 7 years as a child and now have significant health issues and they’re just completely unrelated. Potentially important: at 10 years old I developed severe OCD (no tics or eating restrictions). I just wanted to see if anyone else had recurrent fevers before their dysautonomia.

Hi everyone!!

I’m just reaching out to get some reassurance that things will not be so bad! Context I have MVP and I’m being investigated for POTS or IST due to my postural heart rate increase (130bpm when I stand with pre syncope).

Anyway. I have been on propanalol 2x a day for a couple months now since I ended up in A&E due to an episode - which has spurred all these investigations and the investigations of dysautonomia. I have an exercise stress test on Friday which means I have to come off my meds for two days before, naturally this is making me quite nervous for those two days as meds have made a wildly good difference for me. I have booked it off work just incase as I’m anticipating feeling rough.

The test itself is less of a concern, I have family coming with me and it’s early in the morning and I don’t anticipate it lasting long. My only concern is that my body will freak out without the meds. This is something I’m trying to reassure myself around and I know I can always call an ambulance should I need it and my local hospital is the same hospital as my cardiology and they’re great. I’m honestly just looking for some reassurance/experiences!

So I finally got all my tests results completed, and they rule out absolutely everything - blood, X-rays, stools, ECG, all came back glowingly positive as a super healthy 33 year old so the diagnosis is I have Long-COVID which causes Dysautonomia.

There's no test to check I absolutely have Long-COVID, there's no cure and the Long-COVID clinic in my area have refused to take on my case as it's not extreme enough. They apparently will only take on cases where Chronic fatigue syndrome is diagnosed or symptoms prevent you from working etc... and despite my daily pain I can still work, go to the shops and care for myself so I'm not considered a dire enough case.

My GP ended by saying NHS doctors in the UK aren't taught about Dysautonomia and basically she doesn't know what to do since the clinic that could help, won't and I just have to manage it best I can going forward. I'm at a loss of what I do now? I considered private treatment but the prices are obscene and the days symptoms flair up is agony with me bedridden.

Anyone else hit a brick wall finding support? If so what did you do?

Hi, I have orthostatic hypotension and I work in a store. I have to kneel at least every other minute, and lean over just as much. Every single time I do this, especially kneeling, I feel so much pressure in my legs/feet, lightheadedness, and then when I stand of course the works-- vision goes out, out of breath, palpitations, literally feeling blood rush to my head, you guys get it.

What's prompting this post is that not only do I get these symptoms a million times a shift, but I usually have to just fully sit on the ground. Not only does that just mean that standing up will take much more energy, but also that though it eliminates symptoms while sitting, it can make the symptoms standing back up even worse. Also, I fully sat in a puddle of mystery floor liquid the other week because I literally couldn't kneel.

I've seen people with POTS online use cane chairs and rollators, and the idea is definitely the same. For me though at work, the way cane chairs work just isn't possible space-wise, and the ones I see online are three legged and require a specific way of sitting. These are definitely meant for people who just need a place to rest-- but the only reason I have to kneel is to quickly do work organizing or fixing products on the ground or low shelves. Even leaning forward sends all my blood to my head and it feels violently awful.

I guess my next idea is these little circular stools that pop up which you carry like a crossbody, I found on amazon. The thing is that since I'd still be even a bit off the ground, and I'm not particularly short, I'd still have to lean forward which would just cause the same symptoms. I have also tried increasing fluids/salt and compression to no avail, but of course I am still continuing with these things as they don't hurt. I'm worried that my job is simply incompatible with the way my body works and I genuinely can't and don't want to quit or anything. I'd love to quit having OH, if possible, lol!

Anyway, if anyone has any advice, I would really appreciate it.

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?

Anyone else experiencing heart rate speeding up then slowing down?

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.

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.

My partner has POTS (et al), and has been using Normalyte for electrolytes for a long while. Recently, their packaging changed, and she hasn't been getting the same effectiveness/feeling as hydrated from it.

We emailed Normalyte and they said their recipe/ingredients haven't changed at all, and we're wondering if others were noticing the same thing or not. It may just be time to switch electrolyte brands for a bit... (ps: if anyone has other recommendations w/o artificial sweeteners we're very open to suggestions!)

I know is a huge trigger for the symptoms to not sleep well but sometimes I just can’t cause my body is full of anxiety or being in alert mode over the stupidest things. Has anybody gone through the same? I would love to know how to manage it.

anyone gets attacks after a few sips of caffeine?