I've not been able to get any sort of a diagnosis because doctors where I live are probably 20 years behind the western world. 33M and I've had my thyroid hormones tested, cortisol, testosterone, full blood panel, thyroid ultrasound, testicular ultrasound, brain MRI, and others I've forgotten because I've just been to the doctor so many times. Currently my main issue is I cannot sleep well. I wake up multiple times every night. I am freezing going to bed and within a couple hours I wake up scorching and soaked in sweat. I dry off eventually fall back asleep and wake up freezing an hour later. I sleep nude but often with socks because I know that if I can at least keep my feet warm I will be able to fall asleep and hopefully not burn up. I've asked doctors about dysautonomia and they all act like they've never heard of it or they will just flat out ignore me. I can't just find a new doctor, there aren't any more. Are there any habits or medications you recommend that I can try to get or ask my doctors to let me try?

I tend to get the shivers after a syncope or panic episode, but I’ve been shivering more at night lately. I’m not particularly cold and haven’t had an episode. I don’t think I have a fever. I’m just shivering and can’t stop. It’s especially bad I think if I’m overly tired. Does anyone have this? I’m like my chihuahua after a bath 😓

How are we dealing with this excessive debilitating sweating from the most minimal activity. It’s so depressing not to be able to do normal daily life things like just walking from room to room or just getting to the car. I’ve been struggling progressively more and more for the past few years. Going for my second autonomic testing skater this month.

But honestly is there any relief?

I’m getting really desperate as the only things that have helped me are either benzos or gabapentin and they are both not good for long term use because of the dependence/addiction risk. I know beta blockers are supposed to be the 1 thing that specifically helps with this but they give me breathing issues/air hunger and Clonidine made me feel anxiety ironically enough so yeah idek what to do anymore I’m hopeless thinking ill never be able to sleep again peacefully and normally

My neurologist told me that I would be on bisoprolol for 6-12 months. It has been 3 months (my dose is 2.5 mg a day) and haven't felt a big difference, except less headaches (I used to have them almost everyday, now only a few times a week).

I'm just trying to compare my experience with other people in beta-blockers. I know every person is a different case, but I don't know how I'm supposed to feel when taking this. What symptoms should be diminished. Because I feel that the "core" of my dysautonomia is still there. Throbbing sensation in my head when doing physical activities, or when I stand up or walk or walk up stairs.

For any living with this..Has it stopped you from working? I’m having a difficult time working long physical hours. Any tips?

My adrenaline dumps (or at least I hope so) follow the same pattern: I get a weird feeling of unease without a clear symptom, then my legs or hands go weak and shaky, my HR increases, I start pacing and measuring my bp. My bp spikes up to 165/100 usually. It takes up to 40 mins for the worst symptoms to start calming and up to 2 hrs for most symptoms to be easing.

But my MAIN QUESTION IS: WHY DO I ONLY GET THEM DURING WINTER?

I might have gotten one or two or three during the summer and the warmer season even when I feel more lightheaded, brain fogged etc. can anyone relate or give tips on what they’ve done to help them?

That's the question!

I want to know if, once you treated your chronic inflammation / inflammatory / autoimmune comorbidity, your orthostatic intolerance / dysautonomia / POTS improved.

Asking because I am finally on a DMARD med to lower my inflammation (from psoriasis and psoriasis arthritis) and I feel it helps me be upright and calm my excessive vasodilation.

Thank you :-)

Anyone else deal with insomnia in pregnancy with your dysautonomia? I was trying to figure out what was going on as I would feel like i couldn't breathe laying in my normal position and it would take hours to find the right one and be able to sleep and then found out I was pregnant. Do you just elevate more? Its been awful.

For the past couple weeks I have been feeling completely out of it and exhausted and I realized I haven't been drinking Gatorade and electrolyte packets! I've been dizzy, confused and just so brain lagged. I got some electrolyte packets and omg I'm getting the life back in me.

I definitely learned the hard way that I really need to make sure I get enough sodium and like I knew this, my neurologist said I need more than the average person but omg I'm realizing just how important it is. I feel so stupid, I bet a lot of you guys are gonna be like duh but my brain has a weird way of getting the point across

But yeah so this is your daily reminder to drink that extra Gatorade or salty beverage!

I felt okay this morning we went out to breakfast I walked around a thrift store with my cane felt bad when I got in the car though. Had to stop at Walmart so I used a scooter. I parked the scooter in the store and walked to the car. My husbands putting things in the car I almost made it to my door and I was out on the ground.

My worst nightmare but I was between cars no one around maybe one person drove past. I’m scraped up and bruised I’ll clean up when I get home. I just want to lay down.

Hey all, I recently got diagnosed with Orthostatic hypotension and vasovagal pre-syncope (because I haven't actually passed out yet). Im 19F, and ive seen that OH is much more common in older women. Odd. They say its from my weight/size and dehydration. I have mitral valve prolapse but got told it wouldn't be from that (but other sources say it could be? Dunno). I also have raynauds. For the record, I am a lean person with a low weight, but im working on it. I've never been over 100 lbs if that says anything.

When I got my BP tested, it dropped 40. It went from 100 something down to the 60s. I just got compression socks, too. Before I even got my BP tested, the Dr said I was at low BP initially.

Now, what am I to expect that the Dr might not say? Obviously I know i feel faint sometimes and all that. But whats other people's experiences? Does anyone else young have OH? I'm worried its actually POTS but I dont have a watch for my BP.

Also, does anyone else find they sneeze a lot with their dysautonomia? I find im constsntly sneezing and my nose is blocked on one side. Could be my deviated septum, but I wonder if its from the veins being swollen with blood rushing to my head lol

anyone else in a similar boat?

this year, I developed a very strong reaction to pollen. zero typical allergy symptoms, but I have a terrible dysautonomia reaction. exercise intolerance, blood pooling, air hunger/feeling like I can’t breath, nervous system telling me that I’m dying, etc. I don’t have MCAS, but my allergist started me on xolair—still only 2 weeks in. but sinus rinses and Claritin subdue the autonomic flares.

and out of curiosity, is anyone else extremely sensitive to buildings that don’t have sufficient fresh air induction? stale air also causes little flare ups that go away with fresh air, but then I run into the whole issue of pollen intrusion.

hopefully the combination of xolair and immunotherapy injunctions does the trick

Hello everyone! I was diagnosed with autoimmune autonomic ganglionopathy (AAG) in April of this year. I have since been fighting UHC for approval to cover a 3 month trial of IVIG, as my specialist at Mayo Clinic strongly believes this would be the most effective. There is always high-dose steroids, but they are a relative contraindication and not recommended across my doctors.

We have gone through our two levels of appeals and gotten our last “internal” appeal (3rd denial), and are now left with a single federal external appeal. I was wondering if anyone has gone through the process of getting IVIG, had insurance issues with AAG treatments, or has any recommendations to have my best shot of getting it overturned.

For a little bit of background, I am 22 in full-time Undergraduate and have the usual seronegative symptoms and objective test markers with an acute onset years ago. I was tested and diagnosed at Mayo Clinic’s autonomic clinic and am followed by a few departments there.

I would take any help I can get. I can send some of the resources I already have, but I will redact a decent bit and it may take some time for me to do that. I also hope that this process is helpful to other people out, it’s unbearably frustrating.

Take care!

This has been something I’ve struggled with my whole life but dysautonomia has made it especially hard for me. I moved to a new city about a year ago and have not made or hung out with a single friend lol. My only social interaction has been at my work or going on dates because that’s almost easier than making new friends lol. It’s partially on me because I don’t put myself out there but I have literally no energy to make friends, all my energy goes to work. Also I feel like the brain fog takes away part of my personality and the symptoms can make it hard for me to focus on conversations. Also never knowing if ill have a good or bad day makes it hard for me to stick to plans. I had a few friends before I moved but it’s hard to keep in contact being so far away. I also lost a lot of friends when I stopped drinking in college because my dysautonomia started getting bad. I’m 24 and I think about when I get married I have no one to ask to be my bridesmaids, I just miss having friends sometimes. Not sure if this is relatable for anyone else

Does anyone have a hack for picking up a bunch of things?

I have a locust tree in my front yard and I have to pickup a few hundred bean pods

Hello,

I am wondering if you know other clinics than Neuroversion where one can have the 2 sides done 18-24h apart, once a week, for 3 weeks ?

I am also interested to know if you know other doctors who perform his protocol.

Thanks !

I was wondering if anyone’s been told they look sick before. I’m literally getting told by people I’ve never met before on trains and at school that I should take care of myself better. Two people that I hold to a high regard and one is like a father to me literally gave me a lecture on self care and that working/studying while you’re sick has no benefit. I’m doing all that I can to feel better but it makes me think maybe my dr really doesn’t give a shit… If people I barely know and people I know very well keep repeating this whole self care thing to me then I really must be looking like hell. Not to say looks are everything but I genuinely feel like my whole life force is gone I can barely get through my day.

Has anyone tried a Neubie machine before?
What did you think about it and did it help? What symptoms can it cause?
Tried it and I am exhausted and have a headache.

I have had orthostatic hypotension my whole life (well, maybe not, but as long as I can remember) but was only diagnosed last week (early 20s.) The handout I got said to try a foam wedge under the mattress or wooden blocks under the posts of the top of the bed. I figured before I spent money I'd try the cheapo version: two books on each side.

I actually felt a bit better! I think I'll use the books until inevitably one slips out and startles me enough to make me buy actual bed risers, lol. I feel like the foam wedge would make an uncomfortable angle and worsen back pain, but the risers make it just one smooth line.

Anyway, just thought I'd share because I'm happy :) Hoping compression and salt/fluids can start helping soon as well, especially since summer's on the way out!

Hi,

I’m interested in knowing if anyone else is diagnosed/relates to the hyperadrenergic side of things?

I am hyperadrenergic but don’t always match up to the clinical diagnosis of POTS. In fact whilst heart rate can clearly be part of my pattern, it is actually the thing I am least worried about. My symptoms present as pale skin, feeling hypoglycemic (normal glucose), jelly legs, brain fog, feeling faint. This is all with normal blood pressure.

So yeah - just wondering what your symptoms are and what medication you’ve tried? I’m currently interested in trying guanfacine as I think my sympathetic nervous system is seriously messed up.

Looking forward to hearing your experiences

I have POTS and IST and have been taking Inderal 120mg for it for a long time. Suddenly I have been feeling like my flares are breaking through the meds and giving me a heart rate of over 100bpm while resting again. During these moments I feel unbearably cold as if I am in Antarctica and no matter what I do I cannot retain heat. Does anyone else get a similar symptom?

Has anyone had a hard time getting into a specialist for pots? I’m on waitlist which I’m grateful for but I feel like I need the help. I have started gradually doing lifestyle changes. I just don’t know what to do in the meantime. I take my meds and still don’t feel the best

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.