It’s important to stay hydrated obviously, but also since I try to stay as active as possible to keep blood flowing and lose weight. I drink at least 1.5g of electrolytes as well, but it’s infuriating how much I spend my day in the bathroom 😭 it’s gotten to the point that I dread putting my lips to the bottle again.

I’ve had a challenging health year and was sent for a tilt table test in July. I still think about it somewhat often and am wondering if anyone might have insight or a similar experience

After ~15 minutes upright, I said the words, “I don’t feel well”, became unresponsive, and had seizure-like movements. My oxygen desaturated to 80 for 2-3 minutes, I was told I was unresponsive to painful stimuli, and I woke up laying flat with rapid response and anesthesiology in the room. I was admitted for 3-4 days after. MRI and CT angio were clear. Only abnormal labs were anemia.

I was wearing an EEG at the time and no seizure-like activity was detected. There were no respirations and my HR and BP did not change.

Has anyone had an experience like this before? Did you get any answers?

I usually run constipated or on the slower end, but when I do have bowel movements, I get the worst autonomic responses. I get extremely dizzy, and it will last the majority of the day. My daily meds include Iberogast, Colace 200 mg and Fodzyme, ginger and artichoke to get my motility going, but I'm finding that when I pass the stool, I get extremely dizzy. Is it just worth being constipated but not having symptoms?

Hey all,

First off, I don't have a diagnosis of dysautonomia (yet?) but have a lot of symptoms that line up with it. (High HR (70-80ish while sleeping, probably 90-100 while sitting around, and 110-160+ while walking around or lifting things or bending over etc) lightheadedness, dizziness, chest pain, shortness of breath, brain fogs, headaches, just to name some) I have been referred to, I think, an internist? Trying to get information on referalls from my doctor is like pulling teeth so I'm not entirely sure who it is (even though I've asked multiple times lol) I unfortunatly can't get a new doctor because there is a shortage where I live with multi year waitlists, I'm "lucky" to even have a family doctor. If you fire them you get put back on the list. I also did a stress test last year which came back inconclusive but I've heard nothing else since then.

I also have high blood pressure, which I am on Amlodipine (10mg) for and have been on for about 3 years. I don't have a recent reading but from what I remember my systolic ranges from 135-150 and my diastolic from 175-80. So it's still a bit high, but whenever I get it done at the doctor he doesn't seem concerned.

I have an appointment with my doctor next week to renew my Symbicort inhaler prescription, and I want to talk to him about the amlodipine. I have read that it can exacerbate heart rate, and that's a big thing right now that I'm struggling with, so I don't want to be taking a medication that is actively making it worse. Unless I'm wrong on that, please let me know if I am!

I guess I'm just wondering if anyone has any experience with amlodipine or other blood pressure medication (or just high blood pressure while also having lightheadedness and dizziness) so I can bring some good information to my doctor. He is honestly pretty dismissive and our appointments are always really rushed, so I want to come prepared.

Sorry for the long post lol there is always so much information I feel like I need to preface everything with! If you have any more questions I will try to answer them. I am also on a bunch of other medications so if it would help to list those I can edit this and do that.

Thank you!!

Not asking for any medical advice btw, just want to vent. I’ve always been more thin, but lately my appetite has been so god darn awful I’m usually only eating 1 meal a day. Because I wake up and I’m soooo nauseous, my stomach usually feels full, and I got GI problems. I have early satiety too so I can’t eat much. For some reason, I’m pretty turned off by high protein foods lately. I’ve been drinking 2 protein drinks a day because malnutrition is not a pretty thing to have.

I’m just grieving the energy levels I used to have. I used to be able to do 20k steps a day, weight lifting, etc. and now I’m so skinny with no muscle. I feel so physically awful with my debilitating pots. I get tired sooo fast. I’m not what I used to be. My heart rate spikes super crazily if I do basic exercise. There’s more to my debilitating symptoms but I don’t feel like writing too much.

I just feel kind of depressed by how miserable I feel physically.

Hiya! I have orthostatic hypotension (with massive jumps in HR - trying to get a pots diagnosis)

I've been noticing a lot of air hunger especially if my insomnia flares up or it's in the evening, does anyone have any tips?

Last few days I’ve noticed like clockwork around 8pm, my body is much more sensitive to food and eating. Like the volume of food increases symptoms to where eating 4 eggs feels like I’m digesting rocks. I went to the ER last night for it the pain was so bad, thought maybe it was my gallbladder but all labs/vitals were basically perfect. Ultrasound showed no issues anywhere. Then leaving the hospital, eating all day was a breeze UNTIL tonight again smh. I hate this condition.

Anyone else have something similar?

I was symptomatic in my stand test!!! I feel so validated after years of doctors telling me it’s “just anxiety” 🥹

After about 7 minutes of standing I started feeling super lightheaded, nauseas and almost fainted. We had to stop the test so I could lie down and recover. The nurse gave me a packet of salt and vinegar chips and electrolytes, I’m so so happy!

My dysautonomia presents as adrenaline, elevated heart rate, palpations, nausea, etc and flares always last around 5 days. I can barely get out of bed during this time.

My flares are mostly managed, except for stress induced ones. I have a diabetic cat and she needed to go to the ER twice this month, both times leaving me bed bound for 5 days afterwards. Have any of you had success ending a flare early? I usually treat with Valium, liquids, what amount of food I can tolerate, but mostly rest.

I’m pretty sure I have dysautonomia. I had a really bad reaction to LDN and this has happened before from thyroid meds. Prolonged anxiety, heart palpitations, racing heart, etc. I was in the ER the other day for chest pain as well and they didn’t find anything. It would explain a lot of other things I deal with day to day but it feels like a long road to get taken seriously by a doctor and get treatment for it.

I‘m looking for others’ experience.

How did you get diagnosed and what is the process?

Have you found any medications or functional medicine methods for improvement of symptoms?

(I’m actively going to a doctor) I’ve been having issues the past month with urinating like it’ll abruptly stop and it takes forever to get it out. It also aches too but I’m just curious if this is related and no I don’t have a UTI

Hi im so sorry if none of this makes sense but im confused and annoyed and you guys seem pretty smart.
So i was at the cardiologist because of my dizziness and fainting and they ran an ekg and a sit and stand and monitor blood pressure and heart rate tests and they told me i had orthostatic intolorance and autonomic dysregulation and i was doing some research and those are described just as symptoms and not a diagnosis so i dont really know where to go from here and im confused about what they meant and i dont know whats going on

So I had my shower tonight, dried off, put on lotion and deodorant as one does.. then I put my watch on and it says 148.. I let it go to sleep and turn it back on a few times and it’s still high, I grab the pulse ox and it’s reading what the watch is… I hadn’t noticed showers being difficult. What on earth…?
I’m hopefully seeing a cardiologist in December, I’m using a Fitbit versa 3 at the moment to keep an eye on my heart rate, upgrading soon so hopefully my device will play with apps better so I have something to show aside from screenshots I’m going to have to hunt down in my album. I’d had a notable episode in August out of nowhere, sitting in a chair cool as a cucumber then my heart started racing and the feeling of impending doom started up hospital said everything looked fine, they said it was a panic attack so I felt stupid but grateful it wasn’t something worse.

Anyone else get a spike in their heart rate when they shower? Like, I’d noticed my tracker run high post shower before but brushed it off, now I’m questioning everything.. No diagnosis as of yet, I feel like I’ve been blindfolded and handed a racket but no one will tell me what game we’re playing. I’m sorry if this is the wrong place for all of this, mods delete this if it’s not the right place please. I would just like to know I’m not alone.

I’m looking to hear your experiences using caffeine to help with blood pressure drops and vascular pooling (feeling faint/lightheaded post-meal or during exertion).

Since caffeine acts as a vasoconstrictor (blocking adenosine), I’m trying to figure out the best form for autonomic support:

-Immediate-Release (Anhydrous Pills, ~50–100 mg): Do small, fast-acting doses 15–20 mins before triggers help tighten blood vessels fast enough without causing jitters/racing heart?

-Extended-Release (Timed-release/pellets): Does a slow 6–8 hour release actually help acute blood pressure drops, or is it too slow?

-Caffeine + L-Theanine: Has adding L-theanine helped you keep the vascular support while preventing an autonomic anxiety/sympathetic surge?

Have you noticed a difference between coffee, fast-acting caffeine tablets, or extended-release forms for orthostatic/blood pressure issues?

Since my dysautonomia is GI dominant (Splanchnic Blood Pooling) Ill be taking a 50mgs tabs 15mins before a meal.

Day 1: (50mgs in the morning -slow release caffeine) noticed a bit more mental clarity nevertheless gut pooling still as severe.

I have POTS, hEDS, MCAS, and cervical scoliosis. I started PT a couple of weeks and just had my second full session of exercises. I’ve been doing a specific neck exercise every day since my first PT appointment (i have an s-shape to my neck and we are aiming to correct it). It feels like it’s already making a difference (less pain, more energy).

HOWEVER, I have been struggling with brain fog and not being able to think properly. My balance and coordination also feels weird. I went to my session yesterday and almost missed the arm bike seat while I was getting on it. So they had me do sitting exercises the whole time and drink a couple of glasses of water lol. But my brain just feels like it can’t catch up. My partner has commented on it a few times, so I’m getting a little concerned. Any thoughts on what’s happening and if I need to address this? I’m on so many meds for my conditions, so it could maybe be that something needs to be adjusted since my neck is realigning? Idk. I’m just kinda freaked out since I work in accounting and need my brain to work with me so I don’t mess anything up 🥲

I have a lot of dysautonomia symptoms that started around the same time I was diagnosed with a prolactinoma (pituitary tumor from elevated prolactin levels). I’m wondering if I’ve developed secondary dysautonomia from it. Curious to know if this resonates with anyone on this sub?

Diagnosed Pots & had it since I was a kid

I’m starting to notice a clear pattern in what keeps happening to me, and I’m wondering if anyone else has experienced anything similar or discovered they had an underlying condition that was mimicking or triggering their POTS.

Six times this year, I’ve ended up in resuscitation in A&E due to extreme dehydration.

The pattern seems to be:

- Something triggers my POTS.
-HR shoots up to 180+ bpm.
- HR medication stops working.
- BP increases & goes high
- produce HUGE amounts of urine which causes dehydration, doesn’t stop until my heart rate comes back down.
- temperature rises to 39°C plus (no cold or flu)
- become severely dehydrated and end up needing IV

Has anyone else experienced this pattern? Has anyone with POTS discovered they had another underlying condition that was triggering their symptoms or mimicking POTS?

Thank you

X

I’ve had dysautonomia, orthostatic intolerance and me/cfs for as long as I can remember but the last few years have been really rough.

I am so desperate to be able to stand up without feeling dizzy, like I can’t catch my breath, breaking into a sweat, or graying out. I wonder if it will ever happen.

Has anyone found a successful treatment? Did anyone get better?

I've been diagnosed for awhile and have passed out and gotten hurt several times as a result. It's almost like I have an aura sometimes like how some people describe seizures. I smell a faint burning smell and either get SUPER nauseous or a really urgent need to "use the bathroom". Which has resulted in me leaving my classrooms as a student and by the time I realize what's going on I'm passed out in the hallway with no one around. I'm just wondering if anyone else has felt this way because I'm constantly torn on what to do. I don't want to -thr0w-up- in class but I also don't want to pass out trying to find some relief. Lately I've just been gripping my desk and hoping I can hang on. I'm a busy student and I dont know if this is something I should tell my teachers or not. I have disability accommodations but they don't really know why I have them or how to help me.

Hello! I finally have a new patient appointment coming up after not having a pcp for over a year and I’m wondering if my symptoms make bringing up the possibility of dysautonomia up to my new provider.

My symptoms started about 2-3 years ago. I was around 19yrs old and I was suddenly getting pretty debilitating dizzy spells and shortness of breath. I could barely walk a few feet without feeling like I ran a marathon. I started measuring my orthostatic vitals and they all seemed pretty normal from what I remember (I don’t have the recordings anymore). Then one day at work I just got off from lunch and was suddenly very dizzy. From there I got very hot, shaky, and nauseous. I ran to the bathroom, emptied the contents of my stomach and after about 30 mins I clocked out early and went home.

The following day I went to urgent care but my symptoms had cleared magically. Orthostatic vitals, ekg, and xray were all normal. I went to my doctor then. Again labs and vitals were all normal. Their after visit notes says that POTs and BPPV were negative and that my dizziness was likely Vasovagal, anxiety, cardiac abnormality, or systemic illness. Get labs drawn follow up, labs are normal and I’m told it was vasovagal. I take it and I decide I must be fine.

I was fine for a few months and then my symptoms came back. This on and off happens again and again with time between episodes being longer or shorter. I also develop migraines in this time and the only thing that makes it better is sleep or pain meds right when I feel it coming on. I also start getting super itchy whenever I get too warm or exercise too much to the point where I couldn’t take hot showers and sometimes needed to jump in a cold shower just to cool down.

I go on like this and decide it’s just my life, especially after not having a doctor since I outgrew the pediatrician. I decide to record orthostatic vitals whenever I feel lightheaded or dizzy for more than a few days. Heart rate jumps from 60ish to 100ish, starts coming down pretty fast, stays around 80ish

I go to Colorado to visit my friend. I’m doing great. Pretty fatigued from the heat but I live on the coast, so to be expected I’m not accustomed. Go to the airport to head back home, I feel like a I can’t breathe. My heart rate is at 178bpm standing and 120bpm sitting down. Symptoms eventually cease and my plane ride is uneventful. Dizziness and heart rate spikes come and go once I’m home.

I’m just so lost because I feel so nauseous and dizzy and short of breath for weeks at a time before I feel completely normal for weeks or months just for my symptoms to come right back.

Probably worth noting I do take prescription testosterone injections weekly, however when I had my labs drawn and brought up my migraines and dizziness to my NP that handles my hormones I was told everything was normal with my hormones and it shouldn’t be causing any of my symptoms.

I’ve heart vasovagal can actually be reoccurring, is this something to look into? I’ve never actually passed out despite feeling like I might the one time I had a pretty bad episode a couple years ago.

Maybe also worth mentioning I’ve had stomach issues for as long as I can remember and they don’t seem to have a clear trigger.

And when brining up my dizziness to my mom she dismisses me saying that our whole family has passed out a few times and that she’s constantly dizzy.

Is this history worth brining up to my new doctor after getting settled as a new patient and is it worth brining up the possibility of dysautonomia to her? I don’t even care what’s causing all this, I just want answers and maybe a way to negate these symptoms because I hate being dizzy all the time 💔

I go from 0 to 100 so easily. Temperature starts changing, start feeling unwell, panic, heart races, poor sleep.

I think I'm emotionally burnt out. It's like my emotional body is so badly bruised, worn out, exhausted, there are no defenses whatsoever.

And the only way to resolve it is to have a solid break from emotional stress. And for me that means a complete break from my family.

I am fed up. I am a 36 year old woman. I’ve had syncope for 22 years. More recently about 4/5 years I’ve had OH/venous pooling. I was diagnosed 5 months ago.
It was extremely emotional for me to have this diagnosis because the syncope was so bad from 14 years of age I would be sent home for collapsing in School.
The OH/Venous pooling affects me daily. It causes me visual distortions, black dots, I constantly urge to sit/lay down. When I stand I need to urinate, issued with bowels, venous pooling, swelling in feet hands cheeks… the pain its nerve pain heaviness. Along with the dizziness palpitations etc etc
I was medically gaslit for years. When I was a teen I was told I had “painful periods” then I was told I had anxiety/panic attacks etc I drank too much alcohol, I was afraid of needles. I have woken up in the bath with water in my mouth. I’ve been in hospital 50 plus times.
The breaking point for me was when I had a wisdom tooth removal awake. The dentist gave me lidocaine and I had syncope then my legs were also involuntarily jolting. I begged the dentist not to give me anymore lidocaine and had the remainder of my wisdom tooth awake. The dentist laughed it off I had anxiety and I assumed I was allergic to lidocaine.
I then had a LLETZ colposcopy procedure, with lidocaine. After the procedure I went to rebook my appointment and I remember falling at the desk I woke up in a hospital bed. The nurse kept me for a few hours and noted my BP was off the reading (low).
I questioned the gynae after the appointment thinking something was wrong, and even went to my GP who wrote to a cardiologist the reply was “they didn’t know”. I searched the internet for answers and POTS came up with information to avoid lidocaine. I have been absolutely fine without adrenaline in injections.
Since my diagnosis I have been fighting with the team I am under to help with the OH/venous pooling. I’ve gone to PALS twice. All I am met with is to attend a “management course” for syncope. I have told them that I know enough about syncope, I’ve had it for 22 years and I could write them a book about it. If you keep fainting, collapsing, you will notice a pattern (alcohol, constipation, heat, lidocaine) and you will avoid it.
That’s not what I need help with. They do not want to give me medication. They are downplaying my TTT saying despite diagnosis of syncope and OH I did not provoke a faint. They are trying to put down the word initial before OH aswell. I have this well documented on my medical files. I have been through endocrinology, rheumatology, neurology, it’s well documented of me complaining for 5 years of seeing black dots fatigue, purple feet.. I’ve been misdiagnosed with fibromyalgia, Raynaulds, panic attacks, so many times. I’ve had a random doctor say they’ve suspected MS, diabetes, the works, I’ve even asked the same NHS trust for private fees on further tests and id need the consultant to authorise this.
I am now considering to go to cardiology and vascular because I am fed up with neurology. I do not want to know about a holistic approach. I’ve asked about waist level compression and midodrine and they dont answer me.
All of this affects my quality of life drastically and my mobility I am considering going to Germany or America or to see Dr Gall or professor Lobo privately. I don’t know. Any advice let me know I could just break down and cry. I have children. Taking them to school is too much.
Thank you

Hi everyone,

I’m looking for experiences for my husband, who has very severe ME/CFS. He is currently bedbound 24/7 and extremely sensitive to medications and stimulation.

His main symptoms

He seems to have significant hypersensitivity of his central and autonomic nervous systems.

- He can barely tolerate sitting upright or being out of bed.

- Even very mild stress can cause a major worsening of his symptoms.

- His heart rate can increase during these episodes, although it does not necessarily reach very high levels.

- He has severe dizziness when trying to sit upright.

- He experiences tingling and numbness in his head, as well as very unusual neurological sensations.

- He has significant neurological pain.

- He has severe cognitive and sensory hypersensitivity.

- He can barely look at a phone or screen and speaks very little.

- During episodes of dysautonomia/POTS, he also urinates very frequently.

- As a result, he is essentially bedbound all the time.

His blood pressure is generally good, and we have not noticed significant blood pooling in his legs. The main issue seems to be an extremely reactive central and autonomic nervous system.

He currently takes midodrine 2.5 mg three times a day, but it has not significantly improved his ability to tolerate being upright.

He also has persistent symptoms following a reaction to fluoroquinolones (“floxed”), including neurological symptoms and pain. We consider this separate from his ME/CFS; we do not believe the fluoroquinolones caused or worsened his ME/CFS.

Treatments he has already tried

LDA (low-dose aripiprazole)

0.10 mg, then 0.25 mg over approximately 2 weeks. We feel this may have been increased too quickly given his extreme sensitivity. We are wondering whether it could potentially be retried much more slowly under medical supervision.

LDN (low-dose naltrexone)

0.10 mL for about one week, but he tolerated it very poorly and stopped.

Midodrine

2.5 mg three times daily, with no significant improvement in his ability to tolerate being upright.

We are particularly interested in experiences with

- Guanfacine

- Mestinon / pyridostigmine

- Lamotrigine

- Rapamycin

- LDA, restarted much more slowly

- or any other treatment that has helped people in a similar situation.

For those with very severe ME/CFS, bedbound 24/7 and extremely medication-sensitive:

What has actually helped you?

- What reduced your neurological pain or symptoms?

- Did anything reduce your extreme reactivity to stress or stimulation?

- Did anything improve your ability to tolerate sitting or standing?

- Did you regain even a small amount of energy or function without causing significant PEM?

- Which treatments were particularly well or poorly tolerated?

We are mainly looking for experiences from people in a genuinely similar situation, so that we can discuss possible options with his doctors.

Thank you to anyone willing to share their experience.

Been stuck In a flare for 3 days nerve pain is bad tinnitus bad gastroparesis is worse is there anything that helps break the cycle massage? Roland's antihistamines? The adrenaline dumps are the worse and paralyze my guts even going bathroom. Just looking for something that might helps.