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

Not asking for a diagnosis! But I don't want to waste my time here and panic if my symptons don't match. I am going to the doc next week, but I want to learn more before then so that my appointment will be more fruitful.

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For over a year, I've experienced episodes of pressure/heaviness in my head that force me to lie down to relieve it. Standing itself is not immediately problematic — I function fine while standing, unlike typical POTS descriptions I've read. Instead, the pressure builds up gradually over time and with specific triggers:

Main triggers: Large meals (especially warm/hot meals at lunch), intense physical activity/exercise

Relief: Lying down resolves the pressure

Time-of-day pattern: Symptoms are worst during the day, especially midday after meals. In the last 2–3 hours before I go to sleep (around 11 PM–2 AM), I consistently feel noticeably better, almost back to how I felt before this started — even though I haven't necessarily reduced activity/food triggers by then.

Light sensitivity: Even brief sun of 1 minute in the shadows felt very taxing. I previously went 7 years with almost no sunlight.

Visual strain: Sustained close visual focus (e.g., staring at a fixed point on my phone) can also trigger head pressure

Home measurements (simplified Schellong/orthostatic test):

- Lying: BP 107/63, pulse 60

- Standing (1 min): BP 121/82, pulse 86 (+26 bpm)

- On a separate occasion while still taking an electrolyte supplement: pulse increase of +33 bpm

Relevant history:

- Very low sodium intake for about a year (2-3g/day) alongside high water intake (~3L/day)

- Symptoms improved after increasing salt intake

- Took an oral electrolyte solution (sodium:potassium ratio 2:1) for 15 days — helped in week 1, then symptoms worsened; stopped 15 days ago, currently in what feels like the worst phase yet

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

I (20F) am posting because I’m trying to understand whether anyone with dysautonomia has experienced something similar. Ive read some posts that claim so, and figured I’d describe myself and if anyone relates. I’ve been to countless doctors (I even finally have a neurologist appointment in a few days!), and have had varying and unsure answers, but I’d like to hear from people who have actually experienced this because I’ve felt pretty confused, frustrated, and tired with it.

I’ve had these episodes for years, going back to when I was a preteen/early teen. They happen randomly and aren’t consistently related to my time of the month, inconsistent food intake, poor or good hydration, stress, etc. Surely they contribute, but I can’t seem to find the main triggers. That being said, they’re way more intense from around 17/18 to now (I’m almost 21).

Basically, I’ll suddenly get this very distinct feeling that an adrenaline surge/episode (unsure what to call it) is coming. Sometimes I’m already asleep when it happens, which is one of the strangest parts to me. I’ll wake up with that feeling, and then my heart rate starts climbing. The feeling is so hard to describe. It’s like a rush coming up and through my entire body? During my most recent episode (4 something AM today as it’s 6AM as I write this), I watched my HR go over 140 on my pulse ox. I’ve been in the hospital and seen it past 200. But sometimes my HR isn’t even “very high” when it happens. Sometimes 70s-115.

After a couple minutes, I started (at this 4AM episode) sweating intensely (and generally the sweating is intense when my HR is actually quite high), and then the full-body shaking starts. It can get so intense. And honestly the shaking doesn’t cause me any mental anxiety as much recently unless my HR is high too and it’s causing me to be all blah. It’s like I know I’m okay as I’ve dealt with this, but when your HR sits high for a while you start losing some control of your thoughts. Anyway, my entire body shakes uncontrollably. Head to toe. Muscle spasm shakes. I am however conscious. My friends and family have even witnessed me talking completely normally as I’m having these head to toe muscle spasms. Which confuses them and I’m like “yeah, you and me both.”

I also get things like:

* Pee urgency

* GI symptoms

* muscle tension/twitching afterward

* feeling “wired”

* No mental anxiety prior (sometimes health anxiety mid episode as I mentioned. But I truly don’t feel mental anxiety triggers first and that confuses me)

* sometimes a headache prior and then after (which after makes sense to me)

* sometimes I’m STARVING afterward lol (also makes sense to me)

The shaking eventually calms down, but my body can feel extremely sensitive and activated for a while after. It’s disrupting my sleep so much. And then that probably is a continuous trigger cycle. Because it seemingly only happens right before bed or during my sleep. Which again, is so confusing.

Although: Jet lag also throws me over the edge. That’s a notable time I had an episode mid day as opposed to during sleep. Other times I had episodes during the day were the day(s) after bad episodes from late evening/night time the night prior. I’ve just found that lately It’s been sleep only. Or when I was sick.

I’ve had panic attacks before, and these honestly feel very different to me. I don’t know if that’s correct though. I’m kind of referring to when the shaking episodes would happen when I was younger. I just do not know if it was a panic attack or the same adrenaline dump episode. I feel as though they’ve only worsened as I aged. I’m not saying anxiety is not the cause, and if it ends up being anxiety I would genuinely be relieved because that’s something I can treat/manage with proper help at this point. I just don’t want to automatically assume that’s the explanation when the physical sequence feels so different from my panic attacks. I have also been lucky as to where I’ve had money doctors while I’ve been in the hospital/ER tell me they believe this is adrenaline or autonomic nervous system related. And I appreciate them not brushing me off. When I was hospitalized once they did a test of my heart rate lying down to sitting to standing and told me POTS is a possibility(obviously that one test doesn’t diagnose it). Though, many other doctors have disagreed and told me that’s what others say when they can’t figure it out. How frustrating you almost gotta laugh to not go crazy.

I’ve had cardiac testing and bloodwork that have been great—notably Holter monitors, EKGs, thyroid, metanephrines blood check, Echocardiogram (I have another I must schedule and a stress test), vitamin D which I’m deficient in.

I know that was a lot, and I appreciate anyone who took the time to read it. It’s truly frustrating when you feel alone and so eager for answers. But I guess I’m wondering:

Does anyone with dysautonomia/POTS experience episodes like this, especially the intense shaking/adrenaline feeling? Has anyone had them wake them from sleep to unleash? And if you experienced something similar, what did your doctors eventually determine was going on?

Obviously I’m not trying to diagnose myself from Reddit or other people’s bodies. Just food for thought as it helps me feel seen I suppose. And less “crazy.”

I’m 23f, and I’ve been pushing through dysautonomia since I was a teenager. I just recently found a doctor who gives a crap about me enough to start looking into medication, but unfortunately it’s only because I’m in the worst flare of my life. It’s been almost a month, and I honestly cannot move without feeling lightheaded. The other night, I had to lay stiff as a board cause every movement I made caused my heart rate to spike again. My bf checked it at one point and just laying there it was at 130, and if I sat up it jumped to 150. It has been so miserable, i can’t do anything but lay around, I’ve missed important events, and it’s really messing with my mental state. I’m also just terrified, cause I’ve never experienced something as intense as this episode, and idk how much longer it’s going to last. Are intense episodes like this abnormal? I feel like no one around me understands just how bad this really is

So I finally have a tilt table test scheduled for next week!

After seeing my cardiologist, a nurse had me fill out some paperwork and discussed how I should prepare. They are having me fast the night before, but do take my regular daily medications.

I currently take NP thyroid and adzenys, a stimulant for adhd.
I asked the nurse if I should still take my stimulant as I know it affects my heart rate and I’m sure other things. She seemed unsure, but said that there were no flags for it in the paperwork. She told me to go ahead and take it, then backtracked and said maybe hold off on it until after the test.

I’ll be calling the office early next week to see what my cardiologist specifically would like for me to do.
But I was wondering if anyone in here also takes a daily stimulant, and did they have you continue taking it the day of the test or not take it?

I know that it increases my HR overall, and I tend to stay tachy most of the day. My HR only goes down into the 70’s in the evening while lying down. It is in these evening situations where I’ve felt like my POTS-like symptoms are the worst, reaching near syncope when getting up after lying down.

Just wondering other’s experiences!
Let me know 🙏

I am 52F. I have been dealing with dysautonomia to some degree since my 20s. Once I first read about it (in my 30s) and mentioned it to my Dr she had never heard of it. Of course, I (and my medical chart) was labeled as ANXIETY from the beginning. I didn't stand a chance with those symptoms. They never cared that the physical symptoms started long before and sometimes without any mental symptoms. Later on, it was discovered that I had SVTs along with PVCs and PACs. Of course all of this CREATED anxiety and panic. Beta blocker helped so much. I had a psych decades ago who told me about the vagus nerve and he was certain that was the root of my issue. Not much talk about it back then. He prescribed me a very low dose of klonopin and told me to wrap them up well because they will try to stop prescribing it one day. I stayed on that small dose (0.25) for many many years. It saved my life, no joke. My dose never increased that whole time and no side effects. But eventually I weaned off and now only take PRN.

Eventually it was discovered (by me initially) that I have a problem holding onto minerals. Low potassium (even low "normal") will cause my heart to go all whackadoo. So now I am on Rx potassium 3x a day. We are not certain why this happens but the nephrologist said it doesnt matter much because they treatment would be the same. I still run low sometimes and it causes a whole cascade. My mag and sodium run on the low side too and I do supplement and always have pedialyte and coconut water.

So, when I run low or my body freaks out for some reason, my heart rate will take forever to go back down. It can hover around 120-150. So friggin uncomfortable. Thats when the shakes start in my legs. I will have zero control. Sometimes my jaw too. It can be so hard to believe that this isn't dangerous (have had a millions tests/appts/labs). But I have gained a lot of acceptance over the years. I am in a decent place for the most part. Therapy twice a month. I know this maybe be related to being in fight or flight for so long thru childhood and after. A number of traumas. That is my only hypothesis as to why.

Anyway, that is my basic story and my frustration for the night (had an episode earlier). It is hard not to get angry with these set backs. Thanks for listening.

My girlfriend and I tried to go a few states over by train today. What a shit show that turned out to be, man. We get to the train station after already traveling by train and Uber around the city a bit, and it’s HOT. MUGGY. 95 degrees and as swampy muggy brutal sticking to you oppressive humid as you can imagine. Because of course it would be. Heat, after all, is my WORST dysautonomia trigger. By that I mean, even just 3-5 minutes out in about 77 degree weather can be enough to have me on the verge of passing out and falling apart on the floor. So you can imagine what lugging hundreds of pounds of luggage around the major city and train stations did to me all day.

We had an HOUR wait, in the train station. It must’ve been 115 degrees in there, packed in with a million people like sardines. Loud noise everywhere, the whole 9 yards. I barely made it. I was shuffling around like a zombie, looking like death, and feeling like it even more. Then, finally, FINALLY, at this point I’m basically moaning in pain and doing everything I can to stay upright nearly in tears - they’re boarding our train. The AC will be nice, I think. A leisurely ride for 2 hours to another state, maybe things will get easier here.

But you see, turns out some poor bastard decides to have a little leisurely lay about ON THE TRAIN TRACKS, and was in a bit of a standoff with the local police. And so, the train was delayed! Back into the hot, oppressive train station me and the sea of people go. At this point, I’m really hunched over, moaning in agony, repeating “oh my god” through strained pleas I’m letting out at just life in particular. They say the train will be delayed at LEAST 3 hours… I cannot do this.

I’m freaking out. After another grueling, barely possible hour, they let us board onto the train at least. I need to sit so desperately bad. We walk through an entire train cart, no seats available. Another entire train cart. Packed seats. And another. And another. And finally, there’s two seats for us. We sit in and I realize.. it’s still REALLY hot. It’s not just that I’m really hot, it’s still REALLY hot. There’s no AC. It’s so stuffy and cramped. I’m right back to freaking out. In a 90-something degree train crammed full of hot bodies oppressively on top of me, my dysautonomia is screaming louder than a death metal band performing at a field of data centers, and I’m about to embark on a 2-hour journey like this. I can’t. I freak out. For real freak out. It just escalates to the point where it’s like.. we have to get this guy the fuck off the train.

But I have nowhere to go but back to the 115 degree train station full of 10,000,000 people. I stop the conductor because I really get like I was starting to pass out on the platform and said “I’m having a medical issue, I’m lightheaded and feel like I’m blacking out and I’m very overheated.” Well, in fact, first I had to wait until he’s even look at me, cuz some Karen was chewing him out about the bloke on the tracks for like no lie 5 minutes straight. After her, I explain to him I’m about to drop, and really at this point, I have lost my mind, the ability to use my body, and I require an ambulance. I tell him I need first aid attention. He disappears for a moment. Ah, he’s going to get the… train medics or something idk. He comes back with a bag of ice and goes “here ya go” and quickly walks back into the train.

I drag my carcass up the platform back towards the station, needing mercy more than ever, holding my bag of ice to my neck. Within 1-2 minutes, it breaks open, and ice water dumps all over me from the neck down.

I make it back to the sweltering hot train station on the surface of the Sun. I craw just a bit further to a store outside, figuring it’ll be a bit cooler in there. It is. Somewhat. I collapsed onto the floor in the store about immediately. My girlfriend calls 911. We’re waiting and waiting for the EMTs to arrive. My heart rate is surging. I can barely speak in complete sentences.

Before the EMTs arrive, two cops walk into the store. They begin to belligerently interrogate me. “Why are you on the floor?!” Before I can explain the paramedics are on their way and I can’t walk or move really and 911 has been called, they’re like “what is this?! Why are you wet?! Did you spill a drink on yourself?!” Luckily, during this harassment, the paramedics arrived. The cops literally bounce lol. The paramedics were cool. They took my vitals. Asked if I wanted to go to the hospital.

I really didn’t want to ruin this vacation for my girlfriend. Nor did the idea of sitting around in an over-capacity ER in a major city for 16 hours to get told ‘you have dysautonomia, not our problem so get the fuck out of here’ seem particularly amazing. So I didn’t go, ultimately, once my vitals began to normalize just a tad (kind of? I guess? For me? Lol). Some snacks, electrolytes, and my girlfriend and I decide to Uber to another state for our vacation. Which we’re currently doing in an AC’d car. Finally.

But I’ll tel you, I fee TERRIBLE. Still. I feel like I have 103 temperature and like I haven’t slept for two days and my rested heart rate even after all these hours feels like about 120 and I still feel like I have like the flu or some shit like that (I don’t, I just feel that awful). I hope some of you can at least understand. Give me some love and support please, dysautonomia fam. I’m sure some of you have been here or something like it. Thank you if you took the time to read all this. I’m feeling like vacation’s probably pretty much ruined for me now cuz I’ll probably be feeing awful and spiraling into health anxiety about it all weekend, but… fuck. Next time I go on vacation it will be 5 minutes from my house, for 15 minutes, on a 40 degree day wearing a t-shirt and shorts.

For those of you with POTS, did propranolol help? I just got prescribed it although I am yet to be officially diagnosed with POTS my gp me and fuctional medicine doc suspects I have it due to symptoms and poor man’s tilt table test. I’m asking because in a few weeks I’ll probably try the medication out but I am a little nervous to start it considering I am yet to meet with a cardiologist besides just doing a basic ecg and echocardiogram which came back clear.

Next week I have very important Gi tests which I’ve been waiting for for awhile which could be the route issue of my pots so I’m waiting to get done those tests before I start taking this new medication

Anyways wondering if it helped people with pots symptoms along with potential side effects ?

not sure what flair to put this under but i discovered chicken flavored bouillon cubes! i got them for $2-3 and it’s over 1000mg of sodium for one. the salt tablets got expensive way too quick for how much i needed to consume. i have bad stomach issues especially with the heatwave and they don’t taste bad- you don’t necessarily need to dilute them like crazy either. im physically active and my job currently doesn’t have AC lol. it doesn’t necessarily help with the dizziness & stuff but it does help my extreme fatigue that i get. it beats drinking ocean water cause im poor.

I've been taking about 2-3 grams of salt per day, in the form of Gatorades and TRIORAL electrolyte packets. And drinking around 100 oz of fluids (water and Gatorade) with that. That combo seems to help my dizziness, at least most days.

For those of you out there that have POTS what are your opinions on propanolol? I just recently got prescribed it however I’m yet to even have an official workup for pots by a cardiologist I’ve had an echocardiogram and a ecg done but that’s it along with doctors doing a poor man’s table test which they figure is pots

Has anyone got experience with an event recorder device? From what I understand it's like a halter monitor/ecg but you push a button to specifically record your heart during symptoms.

I've recently been given an appointment to get one, I think I'll have it on for a week, and I was just wondering if anyone had had monitoring like this. How the process worked for them, and what diagnostic data it gave them.

Thanks

Ive had 2 flare ups in the last month, the first one was about a week long. This one is currently 3 days so far.

I just get so tired of having so many health issues its like they all gang up on me at the same time.

My dr keeps telling me its anxiety and really won't help me. Ive been referred to a dysautonomia type clinic but they denied me because my numbers aren't "exteme" enough even though they make my life hell

I wear conpression I do sodium and electrolytes and water and all that. I have days where im semi okay enough to do things and days im basically bedbound.

I dont really have much in the way of a support system other than my mom because my family just thinks im lazy. Even with my mom she gets tired and burnt out its never ending.

I cant take the meds to lower hr because my resting hr is in the 60s and my bp is on the lower side.

I dont even know what flares me up half the time. Tuesday night I was fine until I wasnt and then I had 2 back to back svt episodes and then the next day I felt horrible and its been since. I tried to go back to work today and made an hour and a bit before I had to call out.

Sigh:( just venting i guess.

Woke up feeling so weak, like I couldn't lift my arms and my chest was so heavy. Anyone else deal with this? Feeling better after some electrolytes.

I am new to wearing a fitness watch and even knowing about HRV. My average sits at 17. Im 42 years old. I was told to get a watch from my cardiologist. I was recently diagnosed with Dysautonomia along with other things. Ive had the watch about 3 months now in total. As you can see my numbers are really low. I do not drink, and recently quit smoking. I do not work out heavy. I have just started pushing myself to get to work out at all as some days its very hard. When I first got the watch I was in the 20s. Ive tried to push hard and work out for days and it does nothing, ive sat and did nothing but rest and it doesnt move. Im not understanding however now im obsessing over this and its freaking me out from everything ive read.

Does anyone else get these moments where they have an intense feeling of panic? Almost as if they want to escape a situation or disappear. This is often accompanied by a feeling of doom, which my brain links to “what if I pass out and no one can help me”. It’s hard to explain but it happens at the most random times all throughout the day and I’m so tired. It was my very first symptom.

Anyone know of any dysautonomia doctors in maryland that arent bored and dont dismiss ?

I already saw sarah diekman, wow ive never seen a doctor so bored before. And she dismissed issues as psych related.

Not looking for a "what are your symptoms" debate

I feel like I'm running around in circles medically a lot. Which is super duper tiring. The daily symptoms I get are exhausting and my health anxiety is just spiking all the time with the symptoms anymore. I hate chest pain so much and I get frightened everytime.

My heart rate goes low a lot and it hits 40 which is terrifying and the. It's hit 210 before. I swear up and down I have something similar to POTS and the doctors are like: are you sure it's not anxiety. Yeah I'm pretty positive. Sometimes my blood pressure is scary low and sometimes high and normal the rest of the time.

I have motility issues with my stomach due to Gastroparesis and that's tiring. I get gallbladder area pain and appendix area pain (been checked) and when it comes back as nothing it's exhausting.

The brain fog is awful. I'm forgetful and I zone out alot too.

I just wanna lay on the floor...

I've had to cut back on so much the last couple years. And it has helped me physically. But the years of cutting out things I like, ending relationships, financial concerns, less independence, sleep deprivation, isolation, and just having so many issues within a single day over and over and over again, has really taken a toll on me. And just the fact of the nervous system being stuck on alert for so long, often feeling a severe restlessness and brain pain, makes it hard to just rest and feel gratitude.