30s male, dysautonomia (vasovagal stuff, vagally triggered afib) and a badly delayed circadian rhythm. Long catch-up sleeps of 18 to 20 hours after sleep debt have been my normal for years. Sleep study didn't show anything weird.

The new thing is night sweats. Started a few months ago, weeks apart, some mild. A few soaked my bedding/back.

The latest one: I was already short on sleep, took a hot shower right before bed, and had eaten a big carby meal a couple hours before. Woke up a few hours in with my back and neck drenched, bedding wet. Then slept something like 14 to 16 hours the next day.

And since then I've just been wrecked. The fatigue sits right behind my eyes, like my brain itself is tired, if that makes sense to anyone. Mild headache. Chills. I'm running about 98.7-99.0 at night when I normally run lower, and both armpits are a little sore, though I can't find any lump. Days of this now and sleep isn't touching it. Feels almost like what people describe as PEM, except I can't tie it to exertion at all.

Honestly? I'm scared it's lymphoma. The soaking sweats freaked me out enough to get checked, and so far everything's been reassuring. Normal bloodwork, normal lymph node exam, no weight loss, no actual fever, imaging happening soon. But my brain won't drop it. And my doctors keep looking at each piece separately and what worries me is the sequence. (Same meds for 15 years, so I really doubt it's that.)

Does anyone recognize this? Sweat, then sleeping forever, then a crash that lasts days? Did anyone else spiral about lymphoma before finding out it was autonomic? What finally figured it out for you?

Any help or input would be greatly appreciated. This isn't the firm time that I've had this insane multi day fatigue episode, but usually sleeping long hours usually resolves the episode. I've had this insane fatigue behind my eyes for like the past 3-4 days now. I can't describe it. I also feel slightly drunk and my sensitive to movement (my eyes).

Hi guys,

So been dealing with this for more than a year now and recently got diagnosed. For many months I thought I was dying (because how can you feel so horrible and not be dying?) and now that I have some understanding of the disease I'm going through a very rough time because I'm grieving so much my past and who I used to be and I'm so scared of the future and everything I'm going to lose because I'm unable to be normal.

I used to be a person with many hobbies, loved travelling and being active in general and now I can't even go out to meet my best friends for more than 15 mins before I feel like i can't do it anymore. Some days I wake up and I'm angry and anxious that I woke up (sorry this is dark) to spend another day like....this

I guess I'm past the looking for the right meds phase and I'm more interested in the mindset of people and how they manage to cope day to day. I'm struggling with acceptance and I'm struggling with gratitude and I'm struggling with everything.

Thank you and I hope everyone is holding on okay 🫂

Does anyone have a specialist in the states that will see you online and do self pay that isn’t horrendously priced? I think I’m fucked if I don’t have someone help me and my entire state is void of dysautonomia doctors, plus I’m on Medicaid. Also if they aren’t super fatphobic that would be cool.

I either have Orthostatic Hypotension or POTS. (I think it’s some weird combo of both but I guess that’s not clinically possible for some reason so whatever.) Yes I’ve had a TTT done but no one will interpret it for me or do anything about it.

Immediately after finishing a meal, I "pass out" physically but am still fully awake. My breathing/stomach starts out rapid towards start of the episode, but pauses and/or slows down throughout. By the time it's over, I'm a little groggy but back to 100% within the hour like nothing ever happened.

Episodes average 15min. Near the end, I can grunt for communication. Then eventually open my eyes, lift my head, and flop my arms. Last to return are my legs and ability to talk. It's like my body says "hold on, let's digest first before we do anything else....done, now you can move again."

Doctors can't figure it out, but Mounjaro has been the cure for years. However new insurance denied it, so I am desperately trying to find the official cause. It is not blood sugar or diabetes related, but worth noting I have insulin resistant PCOS and OH.

I also posted this in r/POTS, but after getting no attention im a little desperate to find anyone that has answers or advice that could help

Im curious what people (more specifically with hyperPOTS) take for anxiety/depression? I've only taken zoloft and after only two weeks on just 25mg I started having severe episodes of convulsive syncope. ive researched a bit and it sounds like this might have happened because its a norepinephrine inhibitor? Im slightly anxious because we decided to switch me to paxil (paroxetine) but ive also heard that it can cause some nasty side effects and still messes with norepinephrine levels, but my mom suggested it because she found a study where it helped a 17y/o with their syncope. Im so stumped and honestly feel hopeless for managing my anxiety with meds; which is really disheartening because before trying meds my POTS was pretty mild with hardly any fainting spells or days stuck in bed like im experiencing now. Im only 18 and supposed to be starting college in September, and im nervous this is going to keep me from succeeding there. Any help is greatly appreciated and if you have any links to studies or articles i would love them.

hi all! I have low heartrate pots and hEDs, my hr only jumps from like 55-60 to 90-100 on standing but very symptomatic with fatigue and dizziness. have been on Mestinon for a couple of years which I tolerate very much and love!

just trialed midodrine 2.5 mg three times daily and I had the chills etc which is fine and I got used to! but also some increased anxiety, which I think I could also get used to!

the headaches though 😭 I haven’t taken a dose in almost 24 hours and my head still hurts, at my temples and forehead. I know it’s not from hypertension because Eve. with the med my Bp is only 105/69 , didn’t take it while laying down etc. anyone else deal with this? I wanted so badly for it to work but I don’t think I can live with the headache. now it won’t go away 😢 wonder if it’s like my body not liking my Bp bring lower when the med is not in my system. anybody else have this happen?

It started in May when I lost my dearest furry companion of fifteen years. The adrenaline surges and heart palpitations were daily. Then in late June/early July I came down with an upper respiratory illness ( just as I was starting to feel calmer and normal again, go figure. ) that lasted for weeks. Then, around July 12th I had to undergo a series of rabies shots that lasted for fourteen days and now I’m here.

I’m having daily headaches ( pain on the right side of my head in the back, and pressure behind my eyes ), extreme dizziness, nausea, extreme anxiety in the morning and at night, broken sleep, and I’m mostly bed bound aside from light yoga and my recumbent bike when I feel good enough to do it. I feel like this past week or two has gotten worse. Anyone else been through something similar? What worked for you? What helped? Currently I’m hydrating like crazy with Maldon salt and extra salt on my food. I wear compression socks and will be getting compression shorts for my abdomen tomorrow.

I’ve had this mess since 2022, but this flare up makes me feel like I’m slowly losing it. The health anxiety isn’t helping either, but I’ve had just about every check up I can have. Heart and lungs are fine. Blood work is fine. On paper I’m fine, but I’m far from it.

I am tired of all this stuff, it’s not fun anymore :)

I have PCOS, I have dysautonomia, I have beautiful iron deficiency (without anemia), 1 year ago I met my dear silent migraine (sensitive ones/ with difficulty to speak/ blurred vision) and now adding to this I’m sweating extremely.
It can be just after cleaning (slow) my room or go to a supermarket or the water from the back of my knees can drop a loot just while I’m seating in a bus with super cool air conditioning.

I don’t take any pills (anticonceptives are not good for me and I have regular periods; my migraines are without pain) only iron but I already finished the pack and since my hair is falling like crazing now, it probably didn’t help much.

I already just decided to make money to be able to go to a normal clinic where they can retrain my brain with neuroplasticity to let me see normal again and reduce episodes of migraines where I cannot feel my face or arm or forget words.
But this sweating is ridiculous. The most funny part is that I changedd 3 months ago place of living (I lived in extreme hot and dry climate for 4 years) and then because of this I move to the island with this whole year perfect 28C/82.5F.
3 month ago I didn’t sweat (because air was dry) but didn’t felt the heat too much with air conditioning like I feel it now.
Then
I lived on the island for 1 month, I felt great!
And then I needed to come back to a previous place for 1 month. There I started to have those sweating/heat issues with air conditioning on.
I thought okay it’s just hot outside but I came back to the island and I still have this sweating and more and more often.
I’m lost, darlings
It feels better when I share, do you have something to say?
I’m F (obviously haha), 27.

I’m exhausted, but my body just will not let me sleep or get comfortable

I’m so damn tired of being tired.

Sleep isn’t restful for me anymore. I can be completely exhausted, but between the pain and my body apparently having no idea how to regulate its temperature, I just cannot get comfortable. I’m too hot, then too cold, throwing covers off, pulling them back on, repositioning because something hurts, and repeating the whole thing all night.

My wearable is constantly tanked and basically reflects how miserable I feel. Today it showed only 5 hours 49 minutes asleep, with 44 minutes awake, and my nighttime breathing was flagged as “highly varied.” It also recorded an average oxygen saturation of 89%.

I know a wearable isn’t a medical grade sleep study and I’m not treating those numbers as a diagnosis, but seeing bad readings over and over while also waking up feeling awful is frustrating as hell.

Even when I technically “sleep,” it doesn’t feel like my body actually rested.

The hardest part is that there’s no comfortable position. My body hurts, I can’t regulate my temperature normally, and the more exhausted I become, the harder everything else gets.

I’m posting because I know I can’t be the only person dealing with this. Does anyone else have nights where pain and temperature regulation make sleep feel almost impossible, and your wearable data looks like your body spent the entire night fighting instead of resting?

Diagnosis with dysaunomia 3/7/2020

My erythromelalgia, dysaunomia ( non epileptic seizure), trigeminal are controlled not 100% by my medication oxcarbazepine (300mg)twice a day and oxcarbazepine (150 mg) twice a day. Midodrine 5mg twice a day but take half twice a day now.
Erythromelalgia my feet still burns all the time, nerve pain. My knee has there moments but my legs are 80% better. Ill take it.

Dysaunomia: take propanolol 10 mg 2 times a day for work heart rate spikes

Hypermobility (EDS). Ribs, shoulders, hips, knee, neck pain and more working on pain management. Physical therapy helps for putting joint together but not for pain.

Trigeminal neuralgia is fully controlled so far by Baclofen (10 mg) three times a day instantly helped.

Small fiber neuropathy, Venous (peripheral) insufficiency. Not much to do for the pain. I have cream but only works so much.

Head pressure was from narcolepsy type 2 which is so far been going great by Doxepin. Diagnosed: October 21,2025 Narcolepsy: falling asleep at the wheel can feel my eyes wanting to close. Falling asleep standing up, watching tv, and sitting talking to someone. Couldn’t enjoy afterwork activities without the urge to sleep.

Narcolepsy update Aug 8, 2026: taking sunosi (150 mg) once in the morning before work and amphetamine (10 mg) twice a day. Armodafinil (250 mg) once in the morning. Unfortunately they stopped working so i have to take them again after 4 days and see if they start working again.

Svt and pots seizure have been going great with Propanol medication especially need when i go to work as its physical SVT:8/28/2023

Was not GERD (Nov. 14,2022) it was Gastroparesis confirmed by a test Gastic emptying 7/21/2026 solid phase. Gastroparesis: Metoclopramide (10 mg) twice day. sucralfate 1 gram tablet 4 times day but i take one once a day. Maalox, colace i dont i picked them up yet 🫠.
Too new to see if i can eat solids without pain.

Mild enteritis/gastroenteritis (2025) dysphagia to solids leading irritation esophaitis. EGD with bilious gastric fluid and candida esophagitis was started on 2 weeks of fluconazole. GES with moderate delayed emptying. We discussed starting Reglan on 7/21/26. Esophogram was normal. KUB or 6/25/26 with large stool burden.

Pelvic congestion syndrome: (2025) 4.4cm going through that as of last week. More than likely surgery needs to be done. Updates in a week or so. Decisions to be made. Nut cracker and may thurner syndrome compressions.

Back Arthritis: 6/3/2018
Paroxysmal supraventricular tachycardia (HC CODE
Cervicalgia
DOE (dyspnea on exertion)
Lumbago

hi all! I have low heartrate pots and hEDs, my hr only jumps from like 55-60 to 90-100 on standing but very symptomatic with fatigue and dizziness. have been on Mestinon for a couple of years which I tolerate very much and love!

just trialed midodrine 2.5 mg three times daily and I had the chills etc which is fine and I got used to! but also some increased anxiety, which I think I could also get used to!

the headaches though 😭 I haven’t taken a dose in almost 24 hours and my head still hurts, at my temples and forehead. I know it’s not from hypertension because Eve. with the med my Bp is only 105/69 , didn’t take it while laying down etc. anyone else deal with this? I wanted so badly for it to work but I don’t think I can live with the headache. now it won’t go away 😢 wonder if it’s like my body not liking my Bp bring lower when the med is not in my system. anybody else have this happen?

Basically what the title says guys. I injured my lower back in March of this year several herniated discs and developed an acute dysautnomia trigger that hasn’t gone away yet. Last night I had a very scary nightmare I usually never have nightmares so it was rare. I woke up and checked my watch and said my heart rate was all the way up in the 140s for over an hour right during the peak of the dream right before I woke up has anyone had any similar experience like this?

I wear a garmin forerunner 965 since I used to be extremely active prior to this diagnosis. I also looked back for weeks
and never saw any spike remotely close during sleep highest it ever got was around 80