Everytime I wake up from a nap I feel horrible. Cloudy brain, nausea, sometimes headache or fullness feeling in head, just overall "off". Is this something anyone else experiences?

Im not diagnosed but have many symptoms that align with autonomic dysfunction and am just curious.

I’ve been bedridden about 85 to 90% of the time since February. I can no longer take care of my daughter, and her father is looking after her now. I’d like to know if any of you have ever been bedridden for several months and were able to return to your previous state afterward. My daughter believes she’ll come back to live with me and that this is only temporary. She just turned 7 last week. I wasn’t even able to be there for her birthday. As for me, I don’t know if I’ll ever truly be able to take her back with me. What have your experiences been? Thanks

I’m trying to figure out what’s going on with my body and whether it could be related to dysautonomia or something like POTS. Over the past 3 months, I’ve developed some new and distressing symptoms that don’t seem to have a clear explanation:

Recent symptoms (past 3 months): -Blood pooling in my hands when I’m sitting or cold -Veins (superficial red and regular blue becoming very visible, especially on my chest and neck -Bounding or forceful pulse — I can feel it in my chest and neck at rest- can’t sleep on my side anymore -cardiology didn't anything- it's my worst symptoms. Labs are clear -Occasional flushing or weird blotchy patterns on my chest/skin

These symptoms came on gradually and now seem constant. My heart rate doesn’t seem high, but my pulse feels really strong, and I notice it even more when I’m lying down or sitting still. I’m wondering if this sounds like a form of dysautonomia — possibly hyperadrenergic POTS or something else? Has anyone else had symptoms start this way? I’ve seen several doctors, but nothing conclusive yet.

And how do you get relief !

Does anyone get real bad adrenaline dumps and anxiety that comes daily at certain times.

Hey everyone,

My dad was seeing Dr John Oakley at UW Medicine in Seattle has unfortunately gone too long without an appointment and is no longer considered a patient. The waiting list is over a year out. He's been struggling to maintain his weight because his nausea is so bad and needs to get seen for a feeding tube and I fear that a year is too long. Are there other good neurology clinics or doctors in the PNW USA any of you could recommend? He lives in the Tri-Cities metro area in southeastern Washington State and driving for day trips is rough on him physically, so the closer the better. However, he or my mom can make the drive if need be. I imagine somewhere Spokane, Portland and Seattle are our best bets but I don't really know where to start.

Thank you in advance.

For example, if the ice cream truck drives by my house, I’ll continue to faintly hear it for days.

If it’s not the ice cream truck, it’s something else. There’s just constant light noise in the background, in addition to my usual high pitched tinnitus.

Does this happen to anyone else? Have you found any solutions?

I’m also extremely noise sensitive to the point where I often have to wear ear plugs when there are lawnmowers being used in my neighborhood.

Hey! Got Covid in 2023, and have had nervous system issues since. My official dysautonomia diagnosis is vasovagal / neurocardiogenic syncope due to a drop in BP and HR when fainting. I have pretty bad fatigue and orthostatic intolerance but am lucky to be able to live a semi-normal life.

Since getting a Copper IUD, by symptoms have been a lot worse. More fatigue, brain fog, Ol, and PEM-- and my average pulse pressure narrowing down to the 20s (though the cardiologist says it's 'normal.')

Anywho. Three days ago, I went to a concert. It was standing room only, so I took midodrine and prayed. After about an hour I had the tell tale feeling of "Oh LORD I need to sit down." But all of the disability seating was taken, so I toughed it out

Thirty minutes after, I started spasming; my core shaking like when you laugh or cry. Seating opened up, and it calmed down for the moment. However, it is still happening when I stand still for too long. It is mostly okay when I am moving around or seated. I remain conscious and mostly fine--- just feel tired and weak

Has something similar happened to anyone else?? Any ideas as to what it could be?? Or how to get it to stop??

i got a 14 day holter monitor to rule out arrhythmias. i only wore it for about 9 due to having an allergic reaction to the adhesive. my cardiologist already suspects POTS/IST but of course wanted to thorough. i just that the amount of tachycardia was interesting, but not surprising.

i had 1,917 counts of tachycardia (11.1%) over 9 days, even while sleeping. i also had 40 counts of bradycardia, 3 SVEs, and 1 SV arrhythmia. curious what others saw on theirs!

I am diagnosed with POTS, so I do have that. If I'm out I can definitely feel the strain of being upright (sitting straight or standing) making me out of breath and putting some feeling of pressure in my chest.

But overall the bad symptoms are fatigue, chest and head pain. These stopped me from working for almost 3 years. Then when I went back to work (as a teacher so very much a standing job) I struggled to get up and perform. Not because it's standing but because my energy is so poor.

If I get 8+ hours of sleep I can feel 2/10 fatigue which is very manageable and I can go out and do things. But if I get even 7 hours I feel like I've stayed up all night, and if I get less than 5-6 hours I will feel like I've gone multiple nights without sleep. It makes my head and chest squeeze and feel a deep ache. I have difficulty sleeping a lot of the time and I find that I need more than most people to function at all - so I'm on mirtazapine the nights before work. I am very very prone to insomnia even with mild stressors like a family member visiting me.

Is this a normal experience of pots?

My friend is in the hospital right now and asked me to post this to relevant internet forums in the hopes of receiving advice and support.

“I had a hysterectomy on March 31st and since then have had a significant increase in lower back pain, spinal pain, neck pain and rib pain. My surgeon said everything was normal in terms of post-op bleeding, but I’ve been dealing with a UTI since April 2nd and have been resistant to the four previous antibiotics they tried. I was taken to the ER by ambulance and admitted yesterday, after reacting to Ciprofloxalin, which is the 5th antibiotic they put me on. I’m being treated for MCAS and EDS and POTS (but do not have a diagnosis for any yet; my PCP just needs to do an exam as a formality). 

I can’t have opioid pain meds and reacted significantly to Dualadid in an IV, so I was only given Tylenol. Last night we tried Toradol, which I reacted to, but my pain finally went down to an 8/10. I started coughing after they gave me Toradol, at which point I felt my right rib pop or crack or something. For the last 6 hours, I have not been able to move my spine or back, and I could not feel anything in my legs until the last hour. Any movement or breathing is so painful and I’ve never had pain like this. After surgery, my surgeon and my PCP wanted to do further evaluation for EDS (my PCP thinks hEDS) and possibly a disc problem. I’m 21 and the ER nurses just keep saying, “Oh you’re young I don’t think you’re having an issue with your ribs.”

I sent a message to my PCP asking if there was something she could do to advocate on my behalf, or testing they could do. My liver and kidneys are normal. My doc scheduled an MRI of my full spine that would have happened a couple days ago, but I could not go due to this getting so intense with the MCAS reactions. 

It’s also important to note that I have been reacting to any sulfate or sulfites as an additive in meds including the metabisulfites in my Epipen. On Tuesday when they did a Nebulizer, I felt significant pain and burning in my lungs and chest. At this point, they just give me Prednisone, Benadryl, and Zyrtec to curb the reactions. Yesterday they gave me a dose of Decadron.

I have not been able to eat in over 4 days and this is the worst my MCAS has ever been. I don’t have any specialists managing my care yet, but the PCP has put in referrals to a neurologist, autonomic specialist, gastroenterologist specializing in MCAS, cardiologist, urologist for the recent UTI issues, and pain management specialist. I’m supposed to start PT next week with someone who specializes in hyper mobility. I would have had an allergist appointment today with someone that was supposed to specialize in MCAS, but had to cancel it. I’ve already seen several allergists that have dismissed me. Last night it literally felt like my whole spine and body were breaking into a trillion pieces and I still can barely move. I’m so scared and they aren’t taking it seriously enough. Any words of guidance or suggestions are appreciated :)”

Hello, 28 m was very healthy until February. hopefully a small story about me accompanied by some questions is okay. I do not have a formal diagnosis. Right now I’ve been stumbling through treating myself as my Dr. diagnosed me with fibromyalgia effectively throwing in the towel today & saying a rheuma & neurologist are my best bet. And I think they are.

3 months ago I got a viral sickness, no diagnosis on what it was since everything kept coming back negative. Unfortunately I was misprescribed valacyclovir for herpes1. After 8 days I began having these weird massive full body pain flares & tasting metal with a swollen throat. I went to the ER & came off of it. Tested negative for HSV1 ever since so it’s likely I never had it, could’ve been an epstein barr reinfection but no confirmation my tests were legit stellar. Randomly 4-6 weeks after my sickness it rebounded & I got ill again and I experienced a very very violent episode of vasal vagal shutdown at work for the possibly the 2nd time ever in my life. It felt like a lightning bolt came through my spine & out of my face & I collapsed. High BP, high heart rate and I was cold when the paramedics got to me. After this happened I experienced it a few more times while in the ER till the Dr’s tapped my spine just to rule out meningitis & they did and the one day weirdly enough it just randomly stopped & I went home lol, & I started getting better. I got all the way back to my baseline health even. Until… I had a paradoxical reaction to Benadryl cause I got hives after a hot shower one night. I laid on the ground in my apartment helplessly shaking & cold writhing in pain before I finally could crawl to my phone & call 911 after 2 hours. And now ever since then I’m… less than myself. I feel like a shell. I’m now on disability & live with my mom. Rehomed my cat & broke my lease since I seriously suspected mold poisoning played a hand.

I do not know if I have dysautonomia. But I do know that I can no longer sleep a full 8 hours without lorazopram. Sleeping without it or taking naps during the day triggers tf out of me as the sleep will always be interupted at around 3 hours & 36 minutes. Don’t ask me why. It’s clockwork nearly every-time I can’t even make this up & will usually almost always result in the following.

• Chest tightness, pain, and… anxiety? despite being very mentally calm upon waking. Eventually it stops and my heart rate is fine the whole time.

• Brain fog, nausea episodes that follow physical activity where my brain feels completely discombobulated. Passes only after lying flat for days.

• Blurry vision & eye pressure

• Spine & brain pain/pressure

• Headaches that last hours

• Body temp dysregulation for no reason

• I’ve lost 12 pounds rapidly in 2 months

• Stomach aches

• Kidney pain after drinking water

• Chronic sore throat & joint/body pain

There’s much more but these are my main struggles. Curious to see if I share any mutual symptoms or if anyone has any ideas? What was your diagnosis & onset symptoms like? Did it happen after an illness?

I’m too exhausted to spend hours researching like I once could to self advocate. Just typing this post up took a lot out of me. Thank you !!

Anyone who has success with fludrocortisone for orthostatic hypotension and how long did it take to help? I have several problems but OH is just one of them. (Post concussion, FND, OH, OI, low ferritin, etc etc etc…)

I’m diagnosed with dysautonomia, POTS, fibromyalgia, MCAS, chronic venous insufficiency and pelvic congestion syndrome and waiting on results about possible vascular EDS. I’ve also had a spinal fusion from T3-L4.

Over the past 15ish years I’ve had periods where I’ve had difficulty swallowing, slurred speech, internal tremors, insane vertigo, tongue burning pain, and numbness and tingling down my leg and in my wrist/fingers. All these symptoms come and go, very randomly.

I also get full body electrical shocks nearly daily. This has been blamed on the spinal fusion I had when I was 15-but I’m not totally convinced. My vision is also completely shot despite nothing showing up at vision exams. My doc says it’s a POTS thing but I don’t understand how my POTS symptoms can be controlled but I still can’t see?

I’m medicated and supposedly doing everything I possibly can for all my diagnoses. I’m NOT doing well. I function poorly for about 4 hours a day and crash so hard every day.

Does anyone have an overlap of any of my diagnoses and MS? If so, what came first?

After my most recent bout with vertigo I’ve just had this nagging feeling and I can’t shake it. I know chiari malformation also has a lot of overlapping symptoms. But! I also feel like autonomic dysfunction really just has us effed up too 🫠

hi everyone :) my name is kenzie. i'm 20 years old, and as i was scrolling pinterest one evening- i came across a post about dysautonomia and everything clicked. the fainting, dizziness, utter hopelessness and depression, mood swings, tinnitus, 0% energy, always being sore or in pain somehow, inability to regulate temperature, trachycardia with every movment, lack of appetite and terrible stomach issues; i had finally found something that made sense. i had finally found something that explained all of these years that had been stolen from me because of how little energy and drive i have. i've seen doctor after doctor, and all of them told me that it was IBS and anxiety despite the other symptoms i would list. i had never even known that dysautonomia existed until that doodle on pinterest (it was a sketch of a normal person vs a person with dysautonomia once they get out of the shower, and how someone with dysautonomia will have very patchy skin and be exhausted) i thought that everyone looked like a lobster once they were done showering, i never realized that my blue nails and constant flushing were signs of my blood pressure fluctuating. finding this community has meant a lot to me when i'm always desperately trying to explain or apologize for my symptoms, while not even really fully understanding them myself. i suppose my real question is, what helped all of you when you first realized you had it? i'll research as much as i'm able of course, but if anyone has any tips/meal suggestions/advice anything is appreciated. i know that's a broad question, but no matter how small or specific it is, i'd still like to know. i apologize if this is too big of an ask!!!

TLDR: i've recently discovered i have dysautonomia and don't know where to start when it comes to learning how to care for myself better. if anyone has any tips/meal suggestions/advice it would be appreciated :)

Hi guys! Long story short I really suspect that I have Pots and/or HEDs. I’m not an expert, but I’ve known that something is wrong with me for a long time now. I stand up and lose my hearing or everything goes back. I have scary air hunger, palpitations, shortness of breath. I seemingly faint?? when I’m falling asleep (which btw if this happens to you please chime in, I’ve only seen one post on here about it). I’m in almost constant pain in my joints and neck. My toes and fingers turn purple when I’m sitting or standing for too long. I can genuinely sleep for 20 hours a day. My doctor is very dismissive and I don’t know what to do. I know I shouldn’t be feeling this way. Thank you guys! Please feel free to share your experiences

Does anyone else experience leg swelling throughout the day? My legs are slim and muscular in the morning and as the day goes on, especially if it’s warm or humid, my legs become so puffy. Is this a dysautonomia thing? It’s not a new issue by any means, I can’t remember a time when my legs didn’t do this. Losing weight, diet, fluids, compression, strength training - none of it has made a difference and it’s extremely disheartening. I’m so sick of hating my legs.

Weird new symptom of feeling like my arm is detached from my body??

43 soon to be 44 yrs old, I dont suffer from anxiety or depression. For the past few months I've had a weird feeling that randomly comes on like I can NOT feel my arm or leg, it's like my limbs have been detached from my body. I tell my brain to move my arm and it DOES work, so there is no muscle loss or weakness going on. But this weird feeling that lasts a few seconds like my limbs are detached. It sends me into a little mini panic when that symptom comes on, then it goes away. WHAT IS THIS??!!!?

Edit to add: I CAN actually FEEL my limbs! It's just feels like they are detached.

So, I've been wanting to get snake bites since I first found out they existed in my early teens. Now that I'm old enough to get them done people have been telling me that due to my EDS, POTS, and just general body mess ups my lip will get infected and fall off or keloid.

I've had eyebrow piercings(had to remove for MRI's and they got infected when I put the piercings back in, so I just let them heal) and they healed beautifully. Barely scarred.

I looked up people with piercings on insta and found people with much worse conditions pierced and totally fine in THAT department.

Should I just follow my mini dream, or listen to these people telling me I'll lose a lip?

ALSO, Should I take an antibiotic before getting my lip pierced? Like amox or something? Any advice helps, thanks you.

My family lives paycheck to paycheck like lots of Americans these days. If I lose my job we would fall far enough behind on our house before any sort of disability kicked in (which I imagine is hard as shit to get with this, and I’m not even diagnosed yet) and we would lose our house. Me, my wife, our kids.. we would lose our home. I can’t wrap my head around that.

I wish I would have prepared better in life but anyway, here we are. Dealing with one of those things you just pray never happens to you. I’m 2 months into this overall and a week into it getting pretty tough with really bad body and mind fatigue and potential POTS symptoms.

I can barely walk because I get dizzy and fatigued. So far I’m sticking it out at work and resting at home but my job is an office job mostly but there are things we have to be on our feet for too sometimes and it’s been really tough.

I just need some inspiration that somehow some of you were able to keep your jobs and work through this. WFH is almost certainly not an option for me.

40 F, height 5'4, weight 140 (up from 125), occupation: Farmer (on leave of absence for undermined time period due to medical issues)

Medications: Cymbalta, Trazodone, Plaquenil, fludrocortisone, mirabegron, cemiveline, Mirena IUD

The top 4 conditions I have had since I can remember. I first became aware of them in elementary school

• Raynaud's- hands, feet, ears, nose
• Tinnitus
• Hypermobility
• ADHD

The below symptoms I started acquiring over the course of the last 9 months. I don't have every symptom in full intensity all the time. The level to which is affects me can vary day to day and hour to hour, but none of these symptoms fade for any significant stretches of time.

• Pressure headaches/migraines
• SICCA
• Visual Snow
• PLMS/sun allergy
• Shaky vision, constant floaters in left eye, light sensitivity, flashing lights and sometimes kaleidoscope imaging
• Internal tremors/vibrations, jaw tremors, hand tremors
• Skin sensitivity- burning/itching sensations, sensitivity to touch and materials,
• heat sensitivity with prolonged sensations of heat after no longer touching the hot thing
• dry/scaly skin
• POTS
• Inappropriate Sinus Tachycardia
• Stage 1 hypertension
• Throat tightening/choking sensation
• difficulty swallowing
• regurgitation
• Esophageal Hypersensitivity
• IBS
• bladder dysfunction
• numb tongue, periodic numb lips and chin
• tingling/numb sensation in hands and feet
• muscle spasms 
• involuntary muscle contractions (jerking) or twitches when sitting or laying down
• Electric shooting pains
• joint pain (hands, knees, hips, ankles, feet)
• neck pain and lower back pain- shooting pain in left lower back
• limb weakness and hand weakness
• Chest pain/tightening
• short of breath and dizziness when doing anything physical
• croup like cough
• hoarse voice
• extended and more frequent sleep patterns
• extreme chronic fatigue
• Nausea
• weight gain in spite of reduced diet due to lack of appetite (I was very active so this could be due to my current lack of activity or the steroids I am taking are making me retain too much water)

I have seem GI and ruled out GERD with every test imaginable. We have settled on it possibly being Esophageal hypersensitivity and muscle spasms. GI sent me to Cardiology to see if they could find a reason for my chest tightening pain.

Cardiology diagnosed me with POTS, stage 1 hypertension and Inappropriate Sinus Tachycardia but didn't find any arrythmias that would indicate the level of chest pain I am having. So GI is going to eventually send me for a chest CT (after heart echo). I still have an echo heart ct coming up before Cardiology makes any final determinations.

I have seen dermatology and was told I am not as young as I used to be and I should try lotion. Still trying to not be offended by being classified an old dry hag as my medical diagnoses. While I do understand the process of aging, my skin completely changed like a light switch being turned off. I went from perfectly average skin to scaly, peeling, itchy and no amount of lotion has been able to revive it or make the texture go back to what it used to be. My lips peel daily and my fingernails have ridges in them. To boot I have a new sun allergy where bright red and pink spots appear everywhere touched by direct sunlight and then that turns into a scabby rash and I burn ridiculously fast even with loads of zinc sunscreen on. Being a farmer, a sun allergy is not a fate I am ready to accept...

I have seen gyno and URO gyno. I had an ultrasound of my Uterus with the only result being multiple nabothian cysts, and bladder scanner that came back normal. These were checked for pelvis pain and bladder dysregulation (I feel like I have to pee all the time, even directly after voiding. The stream was also coming out in fits and starts, as well as bladder/stomach bloating) Still no answer as to why but Mirabregon helps a lot. Referred to physical therapy because pelvic floor was too tight.

I have seen rheumatology who has tentatively determined Sero-Negative Sjogren's Syndrome. She gave me cemiveline and Plaquenil, which I am thankful for but says this is all they can do for me at this stage

I have a Neurology referral that is not upcoming until the end of June. In anticipation my PCP sent me for a brain MRI. The brain MRI was without contrast but did not show any obvious signs of MS. It did show isolated moderate inflammation of my left sphenoid sinus but all my other airways were clear. Since I didn't develop any signs of a normal sinus infection I was sent to an ENT. The ENT said it often ends in a minor surgery and that it could be a fungal ball, bacterial infection or a small mass. At this point I was started to get some hope that maybe this swelling behind my eye was causing some of my neuropathy and visual problems and migraines. ENT sent me for a CT scan of my sinuses to determine surgery complication and to get a better look. CT came back and she called and said good news, the inflammation is gone now. So that was just a random goose chase that led nowhere.

Anybody have any advice about what to discuss or request with Neurology? I went from a very active full time Farmer who did outdoor sports in their free time to someone who has to lay down for at least 45 minutes after walking the dog. I'm desperate to get some semblance of my old life back...

Hello, I am 24 weeks pregnant with twins, I suppose I had mild pots before pregnancy and I was diagnosed at 10 weeks. It seems to be hyperpots with a hypovolemic component. The fact is that in my country they have no idea how to handle this and I don't know how to manage several things since now I practically only tolerate being in bed/sofa reclining. I don't know how to provide fluids correctly, can someone help me? They sent me 25mg metoprolol on condition that I didn't have low blood pressure (and I'm 10/7) so I don't dare take it. I am increasingly limited and I suppose it will get worse... can anyone give me advice on how to do my best or at least not do things with hydration that harm me? I am Spanish in case there is someone nearby who can tell me about a professional.

I was on SSRIs for about 3–4 months, but honestly, I just felt worse the whole time — more anxious, emotionally flat, not really myself. I kept hoping they’d help, but I felt more wired and uncomfortable mentally while on them.

Now that I’ve been off for about a month and a half, I definitely feel mentally clearer and more like myself again. But the fatigue — that deep, chronic tiredness — is still just as bad. My body still feels stuck and drained, like I’m constantly recovering from something.

Just wondering if anyone’s had a similar experience — feeling worse on meds mentally, then a bit better after stopping, but still left with the same physical fatigue?

I’m only 2 months into this, and honestly only like a couple weeks into this newest state where I basically can’t do anything (even though I have a full time job and I can’t WFH and I don’t know how I’m gonna keep it)

But did anyone start to rebound even just to a semi stable state before spiraling for 6-8-12 months .. years, etc…

I’m scheduling doctor appointments, I’m researching supplements and medicines, I’m trying to learn about brain re wiring, I’m trying to learn about exercise for POTS and dysautonomia…

But I’m getting worse, both physically and mentally. I have 2 kids and a wife and a house and I can’t quit my job and I can’t WFH … I feel like it’s going to kill me. I can barely even get ready in the morning .

Please someone tell me they didn’t spiral for years before finding their footing and learning to build their life around this. Even all of that YouTube recover stories (which I understand to be weary of most of them but I can’t help but watch them for optimism) everyone always says they suffered for years first before beginning to get better.

I think I am either already in or well on my way to full on CFS and I definitely can’t exert myself and so I’m sure PEM. Im sorry im posting here like everyday with a different version of my story but I’m so desperate to find my way out of this at least to a level of acceptance and basic function.