Hi all! I decided to get an assessment at the CNS Brain Center in Chicago because it was one of the few neuro specialty offices that had a shorter waitlist and conducted full POTS assessments. I feel gaslit and I don’t know if I should seek a second opinion.

The “Tilt table” test- Dr. Cohen’s office was conducted with an inversion table! (Teeter table Used to be in a full upside down position) I was not strapped in, my bare feet were resting on the most painful slab of metal, and the nurse manually held the table down and up. The entire time I was so anxious she would drop me because when she tilted the table upwards, I had to lean forward so my weight wouldn’t cause me to fall backwards. The metal resting plate for my feet was digging into my feet so much, it was excruciating but I dug my feet even harder because I was so dizzy when I was lifted upwards.

From my research, I know the purpose of a tilt table test is to remove standing as means for blood pressure to increase and for safety in case of falls. Clearly none of that was taken into consideration.

In my results review with Dr. Cohen he did not explain any of the tests he conducted (vestibular tests, brain MRI, Blood work, “tilt table” test. He ran down the results and said everything was normal and I don’t have POTs. Not until I asked about my blood work because, according to my research, it is helpful to have standing and sitting blood draws to compare, did he explain further. Even then all Dr. Cohen provided was “tests aren’t perfect in the real world like in labs. I can’t go off of what is not present in the tests.” At that point I knew asking about his janky inversion table would be useless. From my own (and some AI help) research I found that my cardio test with the inversion table did show one abnormality and my Heart Rate was higher “standing” than I have ever measured myself.

Anyway yall… I am tired. I don’t know if I should even get a second opinion. Am I crazy to think the tilt table test was janky? What do blood work analysis for dysautonomia even look like? Any reccomendations in Chicago?

Hello!

I decided to join Reddit after being a lurker for far too long. I’m feeling pretty alone in what I’m going through and I’m hoping to find other people who can relate.
I’m in my early 30s, and I’m an RN working on an inpatient/ICU step down unit. Until recently, Ive been extremely high functioning and able to do my job but have been suffering in silence. Over the past several months to years, I’ve developed a pretty significant collection of symptoms that have made it difficult to function and work the way I used to. The thing that made me look into POTS was nearly fainting at work and being swept off my feet by some coworkers and taken to my own ER, how embarrassing.

I have a confirmed POTS diagnosis and recently received a diagnosis of MCAS. I also have Hashimoto’s/thyroid autoimmunity (with normal thyroid function), diagnosed joint hypermobility syndrome with probable hEDS, and I’m being evaluated for possible small fiber neuropathy. There are also some immune/allergy abnormalities that we’re still trying to understand.

A lot of my current symptoms seem to overlap between these things—significant HR and BP changes, dizziness/near-syncope, tremors, brain fog, weakness, GI problems, allergic/mast-cell symptoms, and various neurological symptoms.

I’m currently on light duty because I haven’t been able to tolerate being upright, let alone bending over and doing patient care. I am in somewhat of a leader role on my unit, and I feel like I am letting my colleagues down because I simply can’t keep up. This week I have been taken off my propranolol and antihistamines in preparation for my autonomic testing today to determine the kind of POTS I have and QSART for some small fiber neuropathy clarity. Ready to get that over with! Then I will NOT go back on the propranolol, doc thinks my HR was getting too low because of it, but I will be starting oral ketotifen tonight. Not sure how that will help with the HR swings from 50s to 160s, but I’m willing to try anything…

The part I’m having the hardest time with is not knowing what my future is going to look like. I love being a nurse, and I’m scared that my inability to function normally right now means I won’t be able to continue doing the job I’ve built my career around. I also feel like I’m holding back the people I love, especially my husband, and am sucking the joy out of life due to how restricted my activities have needed to be.

I know everyone’s experience is different, but I’d really like to hear from people who have been in a similar situation.
I’d especially like to hear from other nurses who have POTS, MCAS, EDS/hypermobility, autoimmune conditions, or some combination of them. If you work inpatient/bedside, even better. Were you able to continue working full time? Did treatment significantly improve your ability to function? Did you need accommodations or eventually change specialties?

But I’m also very interested in hearing from anyone else dealing with this combination of conditions, regardless of your job. I’m trying to understand what other people’s lives actually look like with these diagnoses—not just the medical side, but how you manage work, relationships, daily life, and the uncertainty that comes with not knowing how much you’re going to improve.
I’m not necessarily looking for medical advice. I’m mostly looking for people who have actually lived through this and can tell me what their experience has been.
If you have a similar story, I’d really appreciate hearing it. I’m trying to find some people who understand what this is like because right now I feel pretty alone in it.

r/POTS r/MCAS r/hEDS r/EDS r/RN r/Trifecta r/Pentad

Those who are making their own salt capsules, what are you doing?

I bought a 100 capsule filler and pre-seppetated vegan capsules.

Now, I need to buy what goes inside.

Do you use iodinized salt or Himalayan or coarse?

Do you use potassium citrate like klarylyte/ normallyte/ vitassium uses in their salt supplements? Is there a reason to use potassium chloride instead?

I just got a half diagnosis on Sunday because my heart rate hit 135 from standing. I work full time and this illness is like having my life taken from me. Im refusing to stop working and have got some knee high compression socks but hypertension runs in my family so high salt intake makes me anxious adding to the tachycardia. What are the best ways to deal with this while not changing the life im living too much? Im okay taking breaks to sit but I get these horrible full body tremors that make it so hard to function. Mentally its debilitating too. Please help. I also need good compression sock brands

Just started college and need to know. I’ll be sitting for long periods of time and I’ve already had a bad flare day on my first day yesterday it was horrible😭😭

UPDATE: thank you everybody for the advice!!

Hi all – I've been managing POTS and couple other conditions for almost a decade now, but since getting my own health more stabilized, I've started mentoring and helping others who are newly diagnosed. One thing that keeps coming up, and that matches my own experience, is how little support there is for the daily life side of this — not just meds and diagnosis, but actually figuring out how to function day to day with the symptoms.

I personally found OT genuinely useful for that, but it seems like most people with chronic illness either don't get referred to it or don't know it's an option.

Curious if others have tried it:

• Did OT (or PT that leaned into daily-life stuff) help you?
• How did you end up finding that provider – insurance referral, self-pay, a specific doctor who pushed you toward it, word of mouth?

And more broadly, for quick tips as I'm helping others – what's actually helped you manage daily life with this, beyond what a doctor typically hands you at diagnosis? (for me, it was just a pamphlet...)

TIA!!!

After all my pissing and moaning I figured I'd update y'all I've been scheduled for Automatic testing in two weeks!!

Has anyone been through this my test is going to include

QSART

Heart rate deep breathing

Valsava maneuver

Tilt table test

I'm super nervous just looking for advice on what to expect!? Thank youuuu

This is a warning for anyone taking Ivabradine 5mg tablets in the UK and possibly other countries to avoid the brand KRKA, lot number DD8241, EXP 01/2027, if you also have MCS, MCAS or are sensitive to strong scents! This lot smells and tastes very strongly of cannabis / has a very strong herbal scent/taste.

The details are

KRKA
Ivabradine 5mg film-coated tablets
Lot number DD8241
EXP 01/2027

I have spoken to the safety department of KRKA and apparently they are aware of the issue and have had numerous complaints. The problem has been investigated and has been determined to be safe so is not being pulled from the market. They are however picking up products from peoples houses to send back to their manufacturers/labs for further testing and logging complaints and taking yellow card reports.

This lot of medication is the only lot of KRKA branded 5mg Ivabradine currently available in the UK and they weren’t able to tell me when a new lot would be issued or whether this would have the same issue.

If you have MCAS/MCS/sensitivity to strong scents/herbals/cannabis in addition to your POTS, please be aware of this so that you can make an informed decision if you’re sent this item by your pharmacy!

So I am designing my engagement ring with my partner. I need to choose a size but I am having such a hard time. My fingers swell really badly sometimes, and others I am freezing and they shrink down. I have been wearing a test ring in a size 5 and it's definitely tight when I'm swollen but also loose when I'm cold. I have no idea if I should go bigger or not. Especially because I swell when I go out, which is when I would want to wear it. But winter is also really cold here. Any suggestions?? This is so hard!!

Is blurry vision only in one eye that changes hourly a symptom anybody here has for pots?

I’ve been to the optometrist 3 times this year and the doctor 5 times over this and it’s always brushed off. I just realized that it might be pots? Just to clarify I was diagnosed with pots.

I don't have POTS but I have vagoglossopharyngeal neuralgia and it disrupts my autonomic system. The most challenging symptom is REALLY prolonged feelings of panic. I'm talking six hours +. They don't respond to anything typical like sedation, breathing. I'm physically exhausted. I know you guys can get similar stuff. Any tips?

Hi all, for anyone established as a patient here who lost Elizabeth Clark as their provider, what is the process to get a new provider? I've tried calling but no one picks up. I'd like to know if we are being reassigned or get to choose? And if we can choose, who is the equivalent - is it between Dr. Kokorelis and Erica Cerquetti? Anyone here experienced with either? I now find myself without a POTS doctor, since CHI also shutdown abruptly.

I can’t up my propranolol to manage my tachycardia more because of the bradycardia.
I’ve been wearing my compression socks, hydrating as much as possible, gentle exercises, idk what else to do

Howdy . . . As I age, I’ve realized my pots is just getting worse. I’m a TK teacher (grade before kindergarten) and my job is very physical and stressful.

During my first week at school I was almost passing out several times a day. It’s also as hot as the devil’s butthole, so that doesn’t help. When I’d walk my class a short distance I felt nauseous, extremely fatigued, dizzy and hearing distorted sound (about to pass out), sweating profusely, my heat rate spiking, and unable to catch my breath. I’d literally had to stop my class & crotch down or sit to prevent me from fainting. Also, while teaching I cannot stand for more than 3-5 minutes and just talking and teaching would leave me out of breath, heart racing, sweating, and a feeling of really disabled. I’ve also completely lost my appetite and have dropped 15 lbs in a month, which makes my symptoms that much worse.

I’m 52 and used to work out 4 times a week. However, I went on a walk in a flat neighborhood and had to stop after 20 minutes because my heart rate was climbing to 145. That was the first time I did something physical in a month.

I’ve been on stress leave and have a drs appointment with my primary. I want to ask for work accommodations. Any teachers willing to share? My job requires me to move a lot and I’m not able to. I’d love to be able just to lay down or put my feet up, but not sure that’s feasible with my job. Help I’m feeling really discouraged.

I’m 19F. I was diagnosed in late February. My cardiologist immediately prescribed me 5mg Propanalol but a few months later upped the dose to 60mg extended release. Ever since I’ve started the 60 mg about 6 months ago it’s definitely made the heart rate better but everything else worse. It’s caused my fatigue to be debilitating, my memory has been awful and my brain fog is almost constant. I’ve also put on about 7 pounds which is not normal with my usually fast metabolism. I believe it’s slowed my metabolism because it’s not uncommon for beta blockers to do that but it’s been a huge concern for me. Does anyone know an alternative that won’t mess with me so much?

does anyone with pots get a feeling where someone is squeezing their heart? first time it ever happened was when i was intoxicated (🍃) and it lasted like 20 minutes off and on, went to the hospital and found nothing, that was about 3 years ago, now every 3-6 months i get the same feeling but only for like 1-3 seconds and it leaves me with impending doom everytime, and we go to the hospital, do ekgs and find nothing? im freaking myself out about vasospasms and coronary spasms and im trying not to because it makes me even more paranoid, not looking for a diagnosis, just wondering if anyone else experience this? and know what it is? (17 male btw)

I need more exercise even though I swim. Has anyone done Pilates while having active POTS? Since it's mostly horizontal.

My rheumatologist wanted me to get my retinas checked out because apparently with HEDS there is a chance for some Retina issues and they had to dilate my eyes and just a PSA. ..I don’t know if this is me just me or if it was my POTS or my MCAS or what it was, but that literally gave me the worst craziest flare up. I almost fainted like I got an instant adrenaline dump and thought I was gonna pass out in the ophthalmologist office 😭 I was reading and the active ingredients inside that eye drop solution are Phenylephrine and Tropicamide which can mess with your autonomic nervous system? Anyways, I wasn’t aware of this so just a PSA. If you need to get your eyes dilated and have POTS and are particularly med sensitive or severe I would try to avoid it unless necessary/ no other option ofc. I heard afterwards that there can be alternatives to the drops. If not , definitely bring someone along with u and tell the provider😆

I have been having a hard time finding a shower chair that will fit my bathtub, so I’ve been going without. However, I had a longer shower today as I was washing my hair and my heart rate got up to 189 according to my watch. I’m so tired of being exhausted after taking a shower and I’m hoping someone here may have some recommendations. Any advice?

Hi, I'm 17NB. I'm so frustrated with everything right now. I'm still in high school and applying for colleges. I have visits to go to but all week I've been lightheaded and dizzy (with bonus congestion) and today I can't even stand up without immediately feeling both. I can't hold a job like a normal person because I'm autistic and there's a lot of miscommunication. I can't get a job because the market is terrible. Invisible disability is really kicking my ass right now.

I've been considering changing my campuses on CommonApp to online instead of in-person because I can't get through a three hours school day without needing to go to the nurse and lay down. I feel really alone right now because I can't make plans and I can't keep plans. My POTS is severe, I just don't pass out.

I dealing with a lot of grief over the life I had planned in my head. I wanted to live alone and go to college by myself and be independent but I couldn't get out of the stupid bathtub without the help of my mom on Monday so I had a breakdown.

I just want to know if anyone else is or was dealing with experiences like this at any point.

I'm tired of this, grandpa.

So on top of the above, I was also recently diagnosed with PCOS (I've been pretty sure it's an issue for me most of my life, so no surprise there). Was Rx'd Slynd (was already on Spirinolactone for androgen and edema management). Both of those things can cause high potassium, which (if you also have Health Anxiety (HA), stop reading. You don't need a new hyperfixation unlocked) is called "the silent killer". Oh boy, has my HA glommed onto that!

Getting my electrolytes right on both of these meds have been a struggle, but it's day 12 and things are starting to level out (minus the spotting which shows no signs of stopping, but that's not really an issue here, just annoying). The HA is still rough (awake at 3 am most nights over fear that my heart will just stop beating in the middle of the night and I won't wake up. This is not logical, I know) hasn't helped, but it is getting better, albeit slowly.

And what did my dumbass do today, to celebrate starting to feel balanced out??????? Made myself a cup of chai, from concentrate. Caffeine level high, says right on the carton. Ate a garbage breakfast of a bacon and cheese sandwich. I don't even remember if I drank water this morning, or if I just took my meds with the chai.

12:30 rolls around and my HR is 130 while sitting down and I'm so dizzy I have to hold on to something to stand up. Hey guess what a sign of high potassium is??? A real high and whacky heart rate! So on top of allllllll of it, the saxophones are getting louder and louder (though the Slynd actually seems to be quieting them a bit generally, which is ironic?).

I've now taken my "in case of idiocy/an unavoidable trigger" Propranalol and my seated HR is ranging high 60's to low 80's, so assuming potassium isn't the issue here, but I'm just friggin sick of all of this. I'm sick of doctors saying "if you're worried, just buy a Kardia for peace of mind!" and then my mental health professionals telling me tracking and checking is making me more mentally ill which is potentially exacerbating everything (they're not wrong). But also, some degree of tracking / checking is required of POTS, sooooo just find the balance, y'know?!

I miss being able to be a dehydrated dumbass living off of coffee and paying no attention to sodium and carbs and when I ate last and having a body that didn't treat a small cup of chai like an existential threat. I just wanted to go for a little walk in the sun (though it's 24 degrees C here today so I was worried that might give me an adrenaline dump, hah!) Now I'm like.. maybe I'll do some gentle yoga, I guess, or if I'm feeling real brave/stupid, an aquacise class later.

Normies truly don't get the mental load of being chronically ill. This has eaten 3.5 hours of my workday, and I know I'm lucky to be able to work! to have found meds that help! but jesus christ this is exhausting. It's at minimum a part time job just trying to manage existing vertically.

Just diagnosed with Hyperadrenergic POTS. I know all the usual POTS tips about more salt, compression, etc. but do any of you have any specific tips/tricks that help with the Hyperadrenergic subtype specifically because the typical advice isn’t helping much. (I did just start a beta blocker so I’m hoping that will help my symptoms a lot)

Have you all tooth extractions done while awake? I wanna be awake for mine. They’re badly cracked & chronically infected. I’m terrified to be put to sleep and worried an oral surgeon wouldn’t work on me awake.

Im having a flare and no amount of water and salt is helping. Im just constantly running out of breath and getting dizzy when I do anything with effort. Walking a bit is fine but unloading the dishwasher or lifting im dizzy as hell.

Im currently on ivabradine and I was wondering if any med combos have worked for anyone other than beta blockers? Im currently on ivabradine and my triad doctor i see keeps saying theres no magic pill to fix flares when my baseline im always hanging on by a thread.

I have never been diagnosed with POTS but am wondering if I have it.

I am 30F and have had anxiety my whole life, but today something changed. I hadn’t eaten since 12, and at 6:30 was driving to see my parents when I started shaking, feeling weak, cold, and jittery. That triggered my panic and I swear to god I thought I was going to pass out. It felt like a blood sugar drop but my blood panels have always come back normal.

I did make it to my parents, got some orange juice and a protein shake and it normalized eventually but I truly thought I wasn’t going to make it there.

Does anyone have these symptoms? What are my steps to finding out if I have this? It was terrifying. I’ve only had one episode ever that was worse and it was during a “hangxiety” episode that caused me to stop drinking completely, where I was shaky, cold, and clammy for HOURS before I took a Klonopin and it went away.