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There's setting up appointments, going to yet another test etc

But there's also many other tasks that come with that.

Supplements I heard can help so I need to buy/try.

New meds.

Herbs.

Special diet.

Special exercise.

Stuff like taking a shower take lots of time and energy.

Obviously getting better is my main goal, and doing everything I can to slow progress etc but it's so overwhelming (while working, being a parent etc).

Definitely not enough spoons

How do you deal?

Has anyone seen Dr. Nathan Keiser in Michigan. I heard he is good at helping people with their pots and I want to know if anyone has any reviews ?

I had a tilt-table test a few years ago, and I have always wondered about this. Why, when being upright on the tilt-table, was I basically "normal", but in everyday life I am highly symptomatic whenever I stand up - so much so that I can't stand for more than 2 minutes without flushing, vomiting, being breathless, etc. This has been observed in the hospital and doctor's office.

(I have been diagnosed with autonomic neuropathy, btw, and have orthostatic hypertension)

Is there something about bearing your weight that triggers symptoms but when you're off your feet it somehow doesn't? I am asking because I wonder if trying to do water aerobics would be a good exercise because you're not bearing weight due to the buoyancy of the water.

How are these things connected...or are they? Anyone know?

Hello all, after being diagnoaes with dysautonomia. Only thing left to do in my own control was convert to as close to a natural diet as I could get and Ive been on a whole food plant based diet and eliminated many procesed items. I was wondering of anyone else has done this and if it has benefited them in any tangible way?

Has anyone here had an experience with the Cleveland Clinic for their POTS or related conditions? If so, any input? tips?

I’m not sure if it’s dysautonomia related but I always get nauseous when I eat hot foods like soup? Any relation?

Okay I'm not asking for medical advice at all. I see my cardiologist this coming week and was thinking about asking him if we can try nitroglycerin for the angina and palpitations episodes I get where it feels like my heart is cramping.

Before I do this though I just wanted to check, is there like some really obvious reason we don't use it for our chest pain? I don't want to look like a complete idoit to my doctor.

I'll bullet point this to attempt to make a long story short:

• my partner has very severe ME, has been 100% bedbound since December unable to do ANY activity (literally just lie with eyes shut, some talking, and can roll over, needs to be fed liquid meals through straw and help using bedpan)

• didn't experience dysautonomia apart from some OI until a bad reaction to a new medicine in February

• since then constantly in a state of switching between sympathetic and parasympathetic excess

• their ME seems to have been improving massively underneath the dysautonomia, no PEM anymore, and in the maybe ten minutes a day they get minimal dysautonomia symptoms, they feel almost like they could be well enough to stand

• but attempting pacing or gradually increasing activity has been impossible as the dysautonomia seems to react so randomly that there's no way to tell what will crash them

• they have an appointment with a specialist in a month that may be able to provide treatment, but is there nothing they can do until then? Do they have to just keep lying there and wait for a medicine that may not even help?

• also would love to hear from anyone who has experienced similar, dysautonomia that doesn't seem related to ME severity, that came on separately- did it get better on its own or only with treatment? How did it affect pacing?

To anyone that uses nicotine, have you found that quitting generally exacerbates POTS symptoms? I was playing around with some nicotine mints and flared myself up when trying 6 mg at once (~10 days ago). A few days later, I have quit cold turkey, and I’m still in a flare up. I feel like withdrawal symptoms are what are contributing to this. For those that have experienced this, approximately how long does the nicotine withdrawl exacerbate POTS symptoms? 1 week? 2 weeks? I am a new user and would like to enjoy it perhaps once a week if possible.

Sometimes when I feel mildly lightheaded, particularly if I'm stressed, self-sabotaged by drinking coffee, or exercised a little too hard, I have slight tremors when I try to pick something up like a cup. Does this happen to anyone else, and if so, do you have any underlying issues that are causing your dysautonomia, like MS?

Having weird spasm in my neck , I do have disc problems in my c5 and c6 but this just started out of no where it’s like I’m having a nerve misfire not at the same time as my heart beat but it looks like a vein? Even having them I’m left side of my head..

I will be looking a back posts, but joining the group. Unwillingly, but fate forced us together.

A guy I’m trying to date asked me to drive 45 minutes to see him and then go on a double date. My dysautonomia is pretty debilitating and I need a lot of help with things. I don’t like going too far from home and I get overstimulated easily. I struggle to do normal things. It just really sucks I can’t do it. I’m not well enough and I really like this guy. I wish he would consider my disability more though before asking me to do things like that… just makes me feel so… disabled.

Does anyone experience this? It comes and goes for me and sometimes chokes me up with how sudden it can come. When it happens it hurts to even drink water and cough drops kind of help but not really. Am I not hydrating enough??? If any of you experience this is there anyway to mitigate it? It’s so annoying😭

Hey as it’s getting super hot this summer and I’m struggling to go outside. I don’t have a car to go to a gym so I was wondering if anyone had any indoor treadmills that are small/affordable or maybe just don’t take up a ton of space? I really want to keep up with a bit of exercise 😅 but it’s already too hot in Florida

I 27f have just been diagnosed with inappropriate sinus tachycardia, as in yesterday recently. It has come as such a relief to finally know whats going on for moving forward, but i wanted to share what its been like trying to reach this point. i have for at least the past 11 years been struggling with palpitations, racing heart, fatigue and more recently brain fog, shaky muscles, nausea, light-headedness, shortness of breath etc

for some background context, I am a professional ballerina and have trained since I was 7 so my resting bpm for most of my life has been in the 50s. this comes into play later on, as every time i have had my heart rate checked and its been high for me they have always disregarded it as not being a concern despite it being 40-50 above my average. my ballet dancer status also tends to get me put into stereotypical boxes and it has been something i have struggled against for years. I think I have always had some form of palpitations, and my heart rate would occasionally elevate as a child but i never paid much mind to it. In high school i began to notice that I could sometimes see my heart visibly beating against my chest to the point where you didnt even have to be close to me to see it. I was in hospital once at 16 (unrelated reasons) and i was laying in my mums lap when i realised my parents were whispering about my heart. we didnt really do anything about it as i sort of had bigger fish to fry at the time. this is the clearest memory i have if an instance in high school, i think because someone else had noticed it. i did however get tested because of chest pains and the drs decided i had asthma (i dont)

in 2015 I moved cities to further my career and i started to have more frequent issues, my bpm would skyrocket whilst dancing, to the point of physical pain in my heart. I went to get tests done and wore a 24hr holter monitor, supposedly nothing showed up. i was given different ventalin and told nothing was wrong. my flares were not overly frequent during this time and for me so long as i was told i didnt have VT i was happy to listen to drs. it gradually increased in frequency during this time but i mostly only noticed whilst exercising and would simply think i wasnt fit enough, which considering i was dancing on average 50 hrs a week was a silly thought

in 2019 I had moved to a professional company, i got tested again early in the year due to chest pains and a very elevated bpm. I also went to A&E a couple of times and got multiple ECGs done, however my readings were coming back in the 90s so I continually got sent home, despite the discomfort and the fact that that is not my normal resting rate. i got bloodwork done as well as another 24hr holter, and was referred to a specialist. my bloods came back as being low in iron storage and my holter showed nothing of concern. the specialist diagnosed me with POTS, gave me no information about it and simply told me he sees it a lot in dancers because of dehydration and he felt my low iron was a trigger but that i would grow out of it. I had an iron transfusion and it did seem to settle so i was happy to accept that and frankly forgot about it. at this point i thought i was done, i had a diagnosis even if i knew nothing about it, that was it. because i was only experiencing mild symptoms at the time i never thought it important to mention that it would happen at rest as well. I moved on, even though i continued to experience discomfort.

with covid i spent a lot of time in my home town with family (rural countryside) and it settled right down during this period

flash forward to end of 2022/2023 when i took on a new role at my work and the symptoms are increasing in frequency and side effects. by march i was battling fatigue and shaky hands. i assumed my iron was low and got tested, nada, my bloods were perfect but my resting bpm was now sitting in the high 70s, when i'd query it i would be told it wasnt an issue even though it was not my normal, even though i could feel my heart beating out of my chest. eventually my dr shrugged and said we'd have to wait 6 months before diagnosing me with chronic fatigue. a few months passed, my flares so frequent and debilitating that im falling asleep constantly and struggling to wake up. So tired that my appetite was gone, id get 3 bites in and couldnt physically continue. the shaky hands progressed to muscle tremors, i was now feeling physically unwell from how hard my heart was beating. it wasnt unusual for me to have multiple episodes in a day. i would have no warning, one minute i would be standing in a bookstore the next i would have to be sitting down due to bpm in the 150s and higher. Driving, sitting at home, taking a nap, it didnt matter. I ended up in A&E again as my heart was at 160 whilst driving and would not lower, by the time they checked me 2 hrs after i arrived it had dropped down to around 100 at which they shrugged and said yeah we arent super concerned. I went to a different dr, got more bloods, still perfect. this gp wasnt satisfied and for the first time i had a dr say right well you're having symptoms so lets sort it out. she sent me for tests, echo, stress echo and another holter. this is also when i found out my test from 2015 wasnt as normal as it was proclaimed to be and was actually showing random ectopic beats. I have a family history of heart issues but she rang me at the start of 2024 with the first lot of results to tell me that everything looked normal but she was referring me to a specialist at the hospital for further investigations. I finished my other tests in the meantime while i waited for this appt, around 5 months, during this time my episodes were now lasting longer, quite often my bpm would jump into the 100s and remain there for hours, i began struggling with memory and brain fog, everything was getting harder and i was getting frustrated and quite tired of everything atp. it felt as though i was in a constant state of anxiety with my heart racing always

which brings us to yesterday, where im sitting in the waiting room, my heart having been pounding for 2 hrs straight, theres a little back and forth because my gp hadnt sent the test results and forms had to be filled out. i tell the specialist everything im experiencing and he asks some questions about work/life etc, i do an ecg and he sends me out while he waits for the test results. I get called back in and he looks at me and quite simply says i have IST. I never had POTS at all and it was always IST. He explained all about it, even discussing potential triggers such as stress and workload and then goes through my holter results which were disappointingly normal as i had had very minimal issues whilst wearing it. he explained that its very difficult to catch on a 24hr one if im wearing it on a good day so im now the owner of a heart bug monitor for 30 days. i will see the specialist again in 4 months. the good news is that my heart itself is apparently incredibly healthy and is otherwise doing all the right things. so even though i now have beta blockers instead of having them every day he has advised for now to just take when im having trouble and only half a tablet for the time being. since i went to work after and was already having flares i took a dose. when i checked my bpm this morning it was 56, for the first time in years i was back to my regular rate, i finally felt normal again.

it has since jumped back up of course but im planning on trying out a few lifestyle changes like quitting my job because of the stress/workload and reducing caffeine, sleeping more etc to see if i cant reduce the flares without having to use my medication all the time since the specialist was concerned they may slow my body down too much overall. though i still have a long way to go towards managing it the frustration of knowing something is wrong and having no one listen to me is gone. I finally have a reason. I'm looking forward to living normally again

yesterday had to visit the er ambulance again because in public my head felt like it was being pulled back so tightly, head felt heavy and dizzy.. idk what that was. it was scary and didn’t go away till we got to er. i don’t want to feel it again.

anyone know what im talking about and does florinef help with that? on no meds or salt right now..

dr prescribed florinef last monday but i’ve been hesitating since i react to beta blockers.. pls answer asap because i need to know if i can take it before it gets worse hahahahaha

this only happened once before (before i started salt pills.. stopped them a week ago because i thought they made me more dizzy ) where i had this feeling in my head and we had to call 911 cause i felt like passin out. is it from low salt?

(Question is in bold because I gave a lot of context.)

So I started propranolol/beta blockers(10mg that I take 3x a day, he originally said to start with 2 but to go up if I feel I need it. I'm prescribed the 3x daily already, though- and on the first day when I tried two, I felt my heart rate spike again after the second dose hit its' half life, so I moved to 3.)

Just started these on Wednesday, after seeing a cardiologist & being diagnosed with "Disorder of the Autonomic Nervous System- Unspecified". (I will hopefully be getting a TTT soon to narrow it down, but one of the receptionists said that I had to wait to be called about that one... I suspect it's HyperPOTS, personally. But rn it's just unspecified dysautonomia.)

I also have ADHD, and have been taking stims(ritalin) for that for over a year now, that is also 10mg that I take 3x a day.

((The stim does not significantly affect my heart rate, though. I've struggled with the high heart rate & blood pressure since I was 7 or 8 years old, 15-16 years ago, I just kept getting dismissed because of things like "You're young, you're just out of shape. Exercise." or "Do breathing exercises." or any other invalidating excuses they could find not to treat me, that were near impossible DUE to the condition I had remaining untreated.))

So; I've been staggering when I take them, because I feel like taking both at once might impair how they work? I've been taking my ritalin first, and then an hour later I'll take the propranolol.

My questions are -- Do I need to be doing this at all? Should I do it in the other order? Should I be putting more/less time in between them?

I'm nervous to call, because not only is my cardio out of the office for a couple weeks- But also last time I had a question, the receptionist was really rude & tried hanging up on me. (The next receptionist was kind and when I mentioned this experience, she apologized and said she thinks she knows who it was- But now I'm still nervous that I'm gonna get that rude lady again... I did have someone suggest to call the pharmacist and ask, I might end up doing that.)

These aren't the only meds I'm taking- I also take Buspirone 15mg 3x Daily, Lamictal Xr 50mg 1x Daily, and Mirtazapine 22mg (1.5 15mg Pills) 1x Daily. Along with a few supplements, Vitamin B Complex, Vitamin D, and Calcium.

I also have a genetic resistance to SSRIs. I tried several in my teen & young adult(younger adult? I still count as a young adult I guess. I'm 23 now.) years. I know those are first option for mental health & also an option for dysautonomia- But they are not an option for me at all due to genetics.

I know the buspar & mirtazapine are also supposed to lower heart rate, and ritalin spikes it in some people- But I'd guess that I'd probably be doing pretty bad by now if they were interacting in a bad way?

But I'm not doing bad at all- This is the closest to normal my heart rate has been (highest it got going up stairs yesterday was 120! Usually it's 150-160. I also didn't get an adrenaline dump when I responded to an online comment, which is a first for me), and this is the ABSOLUTE BEST that my mental health has EVER been!

I just want to make sure I'm getting the full positive affect I possibly can from my medications, and that I'm doing my best to avoid any potential complications.

Anyone out there going through or already went through perimenopause/menopause hot flashes without the ability to sweat? It's a nightmare. One minute I'm fine and the next I'm about to pass out because I produce very little sweat and can't cool myself. I keep ice packs at work to put around my neck and A/C on when it's above 60 degrees out while my employees are shivering and putting on layers. I only wore a coat 3 days this winter. I'm absolutely dreading the summer, especially since I have to go to New Mexico in June.

I’m relatively new to the dysautonomia scene. I’ve been dealing with unknown symptoms since 2019 but they turned severe about 11 months ago. Ever since then I’ve been looking for answers. I’m just now suspecting POTS.

I was just approved for IVIG for autoimmune/immunodeficiency at 1g/kg. I start infusions the first week of June. I’m hoping this will help my root cause.

I don’t have a POTS diagnosis and I only connected the dots today. I went out and bought a blood pressure machine and did the poor man’s TTT. These are my results:

Prone BP 120/71 HR 69 bpm

Standing 5 minutes BP 127/86 HR 92 bpm

Standing 10 minutes BP 101/71 HR 102 bpm

Some of the symptoms I experience are: Blurry vision Lightheaded Dizziness Mental confusion Nausea Muscle twitches Almost passing out Memory issues

My question is, do these results look like POTS? Does it look like orthostatic hypotension? I’m going to buy thigh high compression stockings 30mmhg and start supplementing electrolytes. Does this sound like a good start for treatment of symptoms? What else can be done safely to manage symptoms while I wait to see my neurologist?

Thanks in advance for any help!

For those of you who have had a tilt table test(TTT) I’d like to hear your experiences with the test.

I just learned yesterday my doctor gave me the go ahead to get one and I was really excited (woah possible diagnosis?!) until I started looking into the procedure a little bit.

I have really awful anxiety and ptsd and I’m worried I’ll have a panic attack during the test.

From what little I’ve gathered from my internet poking you get strapped down Something with an IV Nitroglycerin?!

I would really love to have some better insight about EVERYTHING that happens during a TTT

TLDR: I’d like details about everything involved with a tilt table test. Looking for more information and some clarity to hopefully calm anxieties.

Anyone have experience with this medication? Cardiologist just prescribed to take with my 3 doses of midodrine a day as a last resort step while he confirms my diagnosis from University of UT Health and if the pace maker will aid in helping my orthostatic hypotension/hyperadrenergic state.... ugh I hate it here

TW: suicide and self harm

know in some cases dysautonomia can be completely idiopathic, but I feel like there has to be some connection between the darkest period of my life and my development of dysautonomia. I’ve always been a pretty healthy person and growing up I never really had any health issues. I first had symptoms last June, although I remember having heart palpitations issues since 2021. I haven’t had any major viral illnesses in the past couple of years, but I did receive 16 stitches for a major laceration from a suicide attempt in 2021. I’ve heard large periods of stress can cause dysautonomia, could that really have been a traumatic enough event to cause major issues like this?

Thinking of having lip filler done. I need to boost my self esteem somehow.

IDK if it's my period making symptoms worse or not enough fluids or I ate something wrong or overworked myself but I feel so terrible. Extremely nauseous, feels like my stomach is upside down churning I'm so tired but i can't sleep cause I'm nauseous and so uncomfortable so now I'm just sitting in the bathroom typing this trying to distract myself For some reason my hr is in the 70s which is so rare since it's usually high especially when I'm nauseous. I want to check my bp but Idk if i should spend the energy to get up walk over and come back, potentially feeling worse from it. Idk any thoughts or anything try to distract me until then zofran works its magic Thanks

Do you guys legs and arms get super mottled? Like go red then purple! I have physical therapy eval today. But ,,,, I had neuro and a spinal neuro specialty guy last week. I pretty much can only lay down! Something I wished I could do thirty years ago.
I have the orthostatic and weakness, heart palpitations bp up and down on treatment… all the things I see on here except mottling and I normal pain and coldness Thanks. I ll be asking therapist. And report back

*Last 2 paragraphs contains the question. The rest is just background info.

I swear I am on a merry go round with doctors. My health journey started with going to the gastro after ignoring 15 years of gastric problems. Ever since then my general wellbeing has gone downhill.

I had gastritis, esophagitis, and large hiatal hernia (>8cm). Got PPIs prescribed and was never able to cure the esophagitis, so I’m on PPIs for life.

Ever since then my normal POTS symptoms got worse than the usual. I checked with a rheumatologist for inflammation and everything came out negative. It was picture perfect health.

Then I got flagged for hyperthyroid, but came out 100% clear once more. The cardiologist followed and finally got diagnosed with POTS, but again outside of that everything cardio came out clear.

I’m currently waiting on the neurologist, since I have pretty bad migraines that aren’t improving. I’m also working with an allergist that’s very familiar with POTS, but still nothing.

Since I’m trying to drop out medicines (was on 11-12, down to 6), my gastric problems are being lovely and making my life miserable. Now I’m back at the gastroenterologist.

While waiting on an appointment, I started to research more on the hiatal hernia. I remembered my cardiologist asking about how my heartburn felt and he wrote my exact phrase as a finding “feels like my stomach is twisting”. Apparently what I felt, is literally what could have been happening. My gastro doesn’t know that since I thought they would think I’m crazy.

We don’t know how severe my hernia could be, since we never did additional testing on it. But a severe hiatal hernia could mean that part of your stomach is in the chest cavity. That can trigger arrhythmias among other symptoms. Which is why I wonder if the POTS could be fixed with surgical correction of the hernia.

I’m not sure what’s going on entirely from what’s happening. All I know is that these symptoms are pretty awful. Where I live in Canada I have to wait a year to see a cardiologist. I see an allergist in a month.

What did everyone do when they were waiting for a specialist? The ER can’t run the appropriate tests.

Even when I don’t eat anything, I seem to get adrenaline dumps. Not every day, but every few days and it happens mid afternoon and then it’s over in a few hours (sometimes 2 hours and sometimes 6). I can still sleep but when I start moving around in the morning sometimes the adrenaline feeling is still there. During these adrenaline dumps I feel like I can’t stay still, nauseous, and have to use the bathroom repeatedly. I sweat and I’m in fight or flight mode. Stomach pain. Chest pain. My anxiety gets worse. I have very few symptoms of MCAS, like burning at the entryways to the body. But they mostly seem GI related. I can take Reactine and it somewhat helps. I have low iron and react strongly to any kind of supplements so I can’t take them. I was okay for 2 weeks after my first “flare” and now I’m in another one.

Thanks for reading.

Hi all! Recently diagnosed with small fiber neuropathy/dys and looking for things to try beyond meds that’s have worked for you! Currently taking GAB and wearing compression socks. Looking for any and all suggestions! I’ve heard linen sheets for night sweats, towel warmer for temperature regulation, acupuncture for pain… I’m looking for anything and everything! TIA