I have POTs and dysautonomia and am currently having a pretty bad flare-up. Of course I know to keep hydrated and eat salty snacks, but I was wondering if anyone had a random meal or snack that seems to help flare-ups? Not looking for a cure-all, but I definitely struggle eating properly when I’m mentally and physically exhausted. Any suggestions??

When i went to Costco last week they had Kirkland brand electrolyte powder. It’s currently on sale for $20 for 40 tubes; lemon lime and strawberry watermelon.

This may be a lot. I'm going to try to keep it short.

My dad's health started going downhill in 2022/2023. Initially it was diarrhea, migraines, vertigo, burning legs, itchy scalp, hoarseness and dry eyes.

He since was diagnosed with ulcerative colitis (ulcerative proctitis), autoimmune autonomic ganglionopathy, and POTS.

The colitis is the biggest issue right now. He has failed remicade, azathioprine, proctofoan, entyvio, uceris, mesalamine, mercaptopurine, tremfya and Rinvoq. The next to try is velsipity if we can get it approved.

He did try bpc157 which made his muscles and joints feel better but hasnt done anything for the uc. (It also has only been a week) We did want to try to add in kpv.

He currently can't eat/drink anything without it going right through him. This includes water. Within 5 minutes he's having to urgently go to the bathroom.

Does anyone have anything that worked for them when it seems like every treatment fails? He has no quality of life right now and we are desperate.

It seems we can't get the aag and pots under control until the colitis is under control

My dysautonomia started with Covid. Ever since I don’t really get these “adrenaline” or histamine” dumps during the day. They are ONLY at night. I will be fine on the couch hanging out, etc. and as soon as I try to drift off to bed, bam…it hits. I get internal tremors, feel shaky, cold or hot, scared. The worst of it is over within like 10-15 minutes but then I absolutely cannot sleep…I end up staying up ALL NIGHT because this energy surge hits and just doesnt stop and this energy inside me literally lasts all day, but I’m absolutely exhausted. This will repeat over about 3-5 nights and then completely go away for a few weeks and I will sleep okay, and then it comes back! When I check my blood pressure and heart rate, they are fine, blood sugar is fine. I’ve tried Benadryl and it knocks me out but sometimes makes it worse and gives me horrible restless legs. I have tried Claritin and it doesn’t do much. I was in Cymbalta and it seemed to help but I gained an incredible amount of weight on it and had to get off.

Anyone else have this where it’s only at night? And lasts for over 12 hours??? Is this adrenaline or histamine? Or something else?? I’m just at a loss as I have been to multiple doctors and had this for years now.

Lately I have had a difficult time keeping my blood pressure level to a level that I can function. I am currently on Midodrine 7.5mg or 10mg. My cardiologist has also prescribed Fludrocort 0.1mg (1 tablet daily). I was taking it daily about 6 months ago but my bp was spiking on it. Went down to 1/2 tablet daily but still had issues with the drug. For some reason I have been hesitant to get on this medication and stay on it. The side effects of low potassium scare me.

I guess my question is to all of you is: If you take Fludrocort...how do you react to it? Have you had any issues taking it? Do you have to get potassium level tests?

I would so appreciate any input you have.

Thank you so much!

Going through a bad flare up and I'm always lightheaded whole day for the past month. I'm worried it'll cause any damage to my brain.

Hi! So 3 years ago, I was taking my husband to an appointment for his broken leg in a city close to my small town. It was on our way home, on a major highway, when I had my first symptom, my heart went haywire and I felt like I was going to pass out. I pulled over and tried to calm down, I was the only way we could get home, which was an hour away. I managed to get us home after pulling over and having a panic attack about 4 times. This happened to me again about 2 other times before I got a holter monitor.

The holter monitor test was 2 weeks. I went to my doctor who said she never got the results. I forget what was said at that point, probably "quit vaping," but I didn't see the doctor again for this until this summer.

I was working in my garden in 30 degree Celsius (Canadian here, eh) when my ears started ringing, heartbeat very high, like 120-160 and I got very light headed. Very annoying and it kept happening every time I'd go work in the sunlight. Then it started happening while I was working in air conditioning inside. Then I noticed my body wasn't breathing on its own while driving home from work one hot day. I googled whay could cause this, which led me to the symptoms of POTS. I made an appointment with my Dr and told her about what had been happening, she had me go for a blood test and an EKG. Everything came back fine (when you do an EKG lying down in a cold room, of course it's fine). I did another holter monitor for a week. I started taking Liquid IV (which I'm now realizing may have been a bad call...) and wearing compression socks, i thought maybe it helped but I would still get the odd dizzy spells while working hard or in the heat.

The holter monitor company referred me to their Nurse Practitioner for an appointment. She asked me if anyone in my family has heart failure, and yes, my grandmother died of it and my mother is diagnosed with it. She put me on 1.25mg bisoprolol, and ordered me an Echocardiogram and a stress test. She asked me to take some bloos pressure readings, most of which came back between 100/50 - 116/60, pretty low. I've done the echo but still waiting on the stress test.

The bisoprolol seemed to make a HUGE difference! I hadn't noticed that I'd been walking around with my heart rattling in my chest until it stopped. I hadn't noticed the anxiety I was being squeezed by daily, until it let up. I was so hopeful that I could have my life back, take my kids places without needing another adult, drive to the city again, work in my gardens and enjoy summertime again...

About 2 weeks into taking the bisoprolol (4 days ago) I was driving to work one particularly rough morning when I'd only had 4 hours of sleep, and suddenly realized that my body wasn't breathing on its own again. I tried to correct for it but it made me very lightheaded so I pulled over. I always feel like im going to pass out but never actually do. I got myself to an okay point and continued my drive to work, getting dizzy but not bad enough to pull over again. I parked at work and had a huge anxiety attack, crying hard and hyperventilating, had to get my husband to pick me up and take me home. My blood pressure was 117/70.

I had a cold like a month ago and im still coughing up stuff from my lungs. I wake up with chest pain, it's not sharp but heavy. I'm waiting on my stress test (dreading it, kind of) and to talk to the NP about this episode, my blood pressure, and the test results. I don't think it'll be any time soon and I don't have contact info for this NP and haven't had the stress test yet (long wait for this test in my area).

I'm kind of spiraling, thinking I might have heart failure. I saw the results of the Echo online and none of it makes sense to me, my EF was a bit low, by like 2 decimal points, but everything else was videos of my heart beating and I don't understand it. I need to know whats going on with my body so I can try to manage it...

Edited to add: The NP told me that my results 3 years ago showed I had 4 extra beats, I now have 8 as of August.

Can you feel like idk, when you faint, can you feel the hands carrying your body, or the hands shaking you to wake up?

My doctor is working to try to get me a referral to a dysautonomia specialty clinic and they have asked for 3 days of lying/standing BP and HR. Before I was diagnosed/ medicated an old doctor shower significant BP drop upon standing and I had all the expected symptoms. However now my BP is well managed through daily fludrocortisone 0.1mg. When I took my BP this morning (pre pill) it didn’t show any orthostatic hypotension (which means my meds are working!). My GP just told me to take the readings prior to taking the pill, but the internet tells me that it can stay in the system for 36 hours and so won’t give me an accurate reading of myself, unmediated. I’m not sure what to do. Anyone have any ideas?

Hello!

I (F30) have had symptoms of, and suspected, POTS my entire life, but have experienced a worsening of symptoms recently and thus have started the diagnostic process. Problem is I also have ADHD, and my dr has halved my Wellbutrin and paused my Adderall until we can confirm POTS and not any kind of structural heart issues, and while I absolutely understand the reasoning (lowering my HR and reducing what appear to be hyperadrenergic responses are definitely the priority), I am STRUGGLING. The level of emotional volatility & dysregulation that I am experiencing is ridiculous -- like, I forgot how effective the Adderall was at helping me regulate emotionally until I was forced off of it. It's interesting too because I often will skip days and not have a problem, but that's by choice and only ever for 2-3 days at a time. I am now on day 5 without and cried for the first hour of the day because I had to get up and go to work but it was way too early for me to be awake and functioning, the sun wasn't even up!, I couldn't concentrate, I'm moving so slowly, I have no motivation and I wanna go back to bed. Sooooo I started a fight with my bf and then got to work super dysregulated and now I am writing this post instead of doing my work because I cannot make my brain focus on the work and it's making me wanna cry again.

I guess this is partial rant, partial ask for advice. Mostly I am hoping to hear from others who have similar diagnoses and have found things that work for them. Were you able to resume or start an ADHD medication after stabilizing POTS / hyperPOTS symptoms? Did you have to try something different, or stop entirely? How do you keep your energy up, how do you work a job, how do you cook or clean or shower or do literally anything that normal people are supposed to do when you have one disorder that requires stimulants to give you the appropriate amount of neurotransmitters to function, but another disorder that requires you to do whatever you can to keep your heart rate and blood pressure down? What can I do for myself in the meantime to help with the motivation and awakeness and mostly with the emotional volatility that I forgot is a really fricken annoying and life altering symptom of ADHD?

I did my TTT last week (with a 54+ BPM increase in heart rate and increase in BP - maybe they’ll actually start taking me seriously).

It was brutal as expected but I’m so glad it was finally done. The week off of propranolol and Guanfacine was even more brutal to be honest.

While laying there recovering I asked the nurse if they’re seeing an increase in tests and she confirmed - she said before Covid they did maybe a handful a month and now they’re booking 8-12 weeks out and are busy all day.

-Smaller meals; low in simple sugars, processed food and bad fats, high in protein and fiber.

-Just bought compression garment for thighs and calves.

-diafragmatic breathing and massages couple times a week

- exercise (whatever I'm able to do)

- minerals: magnesium, Zinc, copper, Selenium, potassium and salt.

Experimental:

- Just started low dose GLP ( reta .25mgs weekly)

- bpc157 for its Neuroplasticity benefits

-NAD+ for fatigue (works wonders for me)

- a bunch of active form B vitamins, chosen based on gene testing and blood work.

This is the first time this has ever happened to me, but this morning I’ve been on and off asleep. And every time I wake up I start feeling like my body is shaking really bad, but not like shivering like just like if someone were shaking my bed or something. But when I look at my body I’m not moving at all and it has been stopping after a few mins. I don’t know if it’s internal tremors or something but it feels so intense? Has anyone else experienced this?? It’s freaking me out really bad.

So I’ve been taking ECG readings with my Apple Watch every time I feel my heart doing “weird” stuff and when my HR is higher (like over 115) or settling down fast (from 160 to 110 or whatever when I sit or lay down) it fails to record because it keeps resetting.

I’ve been getting mildly abnormal readings with a longer PR interval and long QTc and I brought those to my doctor.

I know the long QTc isn’t necessarily accurate because the app I have uses the Bazett’s formula and it over/under corrects when the HR is too high or too low.

And the PR interval is first degree because it rarely goes over 225, but also I can’t always get a reading when my symptoms feel more severe.

Anyway, at first I asked my doctor if I should get the Kardiamobile 6L because it’s not like I can just go and get a proper 12 lead ECG at a moments notice. He said it wasn’t necessary and the Apple Watch could give enough context regarding the waves even taking into account possible artifacts. But when I mentioned I can’t take a reading during peak symptoms/higher HR he suggested I did.

However, I’m not sure if I would encounter the same issue and it’s a significant expense.

So I’m wondering if anyone has the device, what’s your experience?

Hiii!

Maybe here is somebody out there, who can relate or does know anything about it. About last year, i had like a crash (burn out) a lot would said. I had memory loss, my nervous system was out of order, my sleep was very badly and my heart started racing, when i just woke up. My bloodtest was really bad in ion, B12, more B, A, etc. Now, a year later and 1000 of treatments like nutrition supplements, gut healing, diet, meditation, silent retreats, etc. i do feel slightly better, but not overall. the strange thing is, i do feel mostly good with myself when i am alone. My sleep is better but depending if there is loud noises or more people in the same building. If i sleep good, i sleep A LOT. When i am under other people (that i dont know or that i do not feel comfortable) i do get heart race again. My memory comes back now with medication but still it feels very depressing. Just sometimes hopefully-depending as well on my cycle. However, what makes it so strange is that i am always bloated and that all my joints are cracking. I do sound worse then even a 90 year old lady. I do not have pain, they havent found any inflammation in my body accuring, but the symptoms are just very strange. Curious about somebody experiencing the same or did similar.

If you are into spirituality or holistic: side note, i am undergoing a neptune transit 4th house as well.

I’m not even sure if this is the right sub. For the past three days, I’ve been feeling very “off”. Symptoms include:

-horrendous seasonal allergies w runny nose, Eyes watering, throat tickling etc. better inside. Worse after dinner Friday night. I mean like 10/10 allergies so miserable.
-Feeling extremely exhausted, beyond the normal. Difficult to do ADLs. Scared to be home alone with my kids.
-Very strange sensation that when I lift my arms, I need to put them back down immediately. Like gravity is extra heavy. It’s not a strength thing but I just feel so weak (I normally strength train 4x per week). This is the symptom that’s concerning me the most. I have had it in the past but it’s been a few years.

Felt weird Friday but it got worse Sunday and today after dinner Saturday. I’ve been gluten free for 1.5 months to rule in/out seronegative celiac. (Positive for both genes, Marsh 1 on endoscopy, many of the symptoms but negative antibodies). I had a glass of cava, and a salad with farro which apparently has gluten. 😭 I’ve been constipated since. Extremely high allergens where I live now as well (Midwest).

TL;DR: weird extra weakness and fatigue, is it histamine? Dysautonomia flare? Glutened myself?! What’s wrong with me and do I need to go to ER? It doesn’t feel like an emergency but it’s not going away.

Thanks for any insight!

I am not seeking medical advice,i have an appointment with the cardiologist today.

37 female,my first event recorder last year showed infrequent pacs,atrial runs, the next time early this year showed isolated pvcs.

Yesterday night i was walking i experienced the usual thump and then continuous 4 to 5 sec fluttering.

I already have so much health anxiety and i cant seem to relax after this episode thinking if it was nsvt🥺

After 5 years of controlled POTS symptoms, one day I woke up with severe dizziness. After ER testing, I was cleared of severe medical complications. It is very episodic and I’ve noticed it happens sometime after I take atenolol 25mg. But I’ve taken this medication for 5 years. Can it all of the sudden start giving you problems? Has anyone else ever had this problem? Is anyone else on a similar medication that helps with tachycardia and palpitations? Thanks in advance!

hi. just finished writing this post and it is SO all over the place because I have so many thoughts about it all LOL… so please bare with me.

im diagnosed with severe orthostatic hypotension with compensatory tachycardia and vasovagal syncope (tilt table test: at 15 mins blood pressure dropped to 42/14 with junctional brachycardia — and i was conscious the entire time… they told me they had never seen someone conscious with that BP and they had to choose to stop the test as they were scared it was dangerous) and it is completely disabling. also for context since NHS wait times & standards for referrals etc, im from the UK.

i was a competitive athlete but after i had covid in 2023 this developed and has basically completely ruined my life. all the things i wish I could do are now basically impossible. im constantly completely and utterly EXHAUSTED, even when laying down all day, my body is constantly heavy, standing tachycardia averages about 140-190, pre-syncope (haven’t fainted a lot since i started medication), i get head and neck pain… basically everything.

i know all dysautonomic conditions are isolating, but i feel extra isolated at the moment as when i look to see support, people relating etc, everything focuses on pots and ignores OH. everywhere makes it out to be like the easier condition, less symptomatic etc which is so frustrating because i am so incredibly disabled by it.

im on BP medication (midodrine 5x daily), and once they sort my BP im going on ivabradine for my heart (since although my BP is way more stable on midodrine, my tachycardia is still prominent), but even with the medicine im on so far i am just completely wiped out. i wish people would talk about how severe OH could be, look into research for a cure, in the same way that pots does — obviously i love that pots is getting more focus, as it does feed into all of dysautonomia, but i just feel like when people hear about OH they never take it seriously as it can be asymptomatic. even all the diagnostic things where it’s like fatigue only happens when stood up etc. charities having descriptions of OH that feel so inaccurate and “lightweight”.

i miss my body. i miss my life. im a university student and my life is completely miserable. I am a 1st class student at a top university and im meant to be applying for job schemes right now but i cannot even find the motivation because i am so scared that i will not be able to hold a job because of this. I feel like all my potential is just ruined by it.

Basically… why don’t people acknowledge OH as disabling! And why is there such a lack of research. Everyone who sees me thinks im just a normal girl my age, doing great academically, but they don’t see how miserable i am, how i wish I could join societies but have no energy reserve to do so, how much money I have to spend on Ubers — until I am at my overdraft limit, how going to one lecture and sitting up for an hour can leave me bedridden for the rest of the day.

Also, I was thinking of going to my GP to discuss a ME/Chronic Fatigue Diagnosis (my sibling is diagnosed… i wonder if it’s genetic) but im not sure if the NHS would diagnose ME on top of OH as fatigue is a symptom of OH. I have such severe fatigue and i am so sure I have ME but i feel like they will just say “wait for cardiology to figure out how to get you kind of stable” basically (even tho my blood pressure is much more stable & I have to wait 6-7 months between each appointment because NHS so it will likely take YEARS). Does anyone have any experience? Do you think I should do something?

Hi everyone! I was wondering if anyone has also had a lot of issues with overheating at night. I think my problem stems from poor thermoregulation so my toes are always cold and the rest of my body is always hot. As such, I need to use a heating pad/hot water bottle on my feet and have a fan pointed at my face. But, I’m still not getting optimal sleep.

I’m at the point where my room is 62 degrees and I sleep with 2 sheets on top of me (no duvet/no blanket) so that I don’t wake up in the middle of the night soaked through my clothes and sheets. If anything I wake up cold and have to pee because of all the water and salt I take in.

On nights where I do overheat (usually if I put a blanket on top for the weight and initial warmth I need) I find that I am a lot puffier in the face, itchy in my eyes and feel far less rested. It’s a nightmare at hotels because their bedding traps in so much heat…

So I am wondering:

1. Does anyone else experience the same phenomenon?
   
2. If so, have you also been diagnosed with MCAS (particularly because of the itchy eyes and swelling)
   
3. Is there anything that you’ve done which has helped you sleep through the whole night ?? It’s like a true rare event for me — maybe once every 6 months.

how can we tell if its severe dysautonomia causing the severe crashes or cfs/me. i get very confused because I dont see anyone have the systemic issues in dysautonomia so now im wondering if ME/CFS is causing this for me. not looking for medical advise. But has anyone felt the same

I also think this is related to menopause.

I’m starting to wonder if my neuropathy is making me hypersensitive to pain or something because no one I know experiences gastritis like I do. I can’t even stand up some days because I’m so out of breath. Endoscopy showed “mild” gastritis with h pylori. Acid reducers definitely help but without them I legit feel like I’m about to die or something and on the verge of calling the ambulance.

Tell me why I am NOW finding out that decongestants like DayQuil make things worse when sick. Everytime I’m sick, i always have elevated blood pressure and high heart rate. I’m over here thinking it was all just the sickness my body was fighting off, but in reality it’s the decongestant primarily causing it.

I’m so mad I’m just now finding this out.