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Do this mean I have POTS? (heart rate +35 stand test)
I did a test this morning w my Polar HR monitor and Elite HRV app. Can anyone w POTS please help me interpret? Looks like a +35 avg heart rate, and +34 max heart rate. Laying Down (recording after...
View ArticleDangers of no exercise?
I’ve been having a significant crash, lasting about 8 days now (in bed). I can feel myself getting weaker by the day. I’ve been very careful about pacing, and have not exercised at all. Shouldn’t I at...
View ArticleHelp about experience pls
Please please. I had to go to hospital for.a severe situation. A combo of cfsme and pots making me pretty much unable to move without consequences. They gave me saline drip and everything went away....
View ArticleGSK-126 inhibit EZH2 activity - first potential POTS cure
GSK-126 inhibit EZH2 activity - first potential POTS cure Targeting Treatment Refractory NET by EZH2 Inhibition in Postural Tachycardia Syndrome...
View ArticleNimodipine and Propranolol
I would like to ask what your experience with these two compounds is? Nimodipine and Propranolol I have Beta-2-AR Autoantibodies and OI/POTS symptomatic with autonomic dysfunction. Propranolol is...
View ArticlePOTS HPA Stuff
So, I have been dealing with a bad case of POTS for a few years now. Have tried many things. Drs are unwilling to help in most ways despite seeing some of the best cardiologists in my area. My hormones...
View ArticleMoxonidine
Came across this interesting clinical Trail with Moxonidine. has anyone here tested Moxonidine for their POTS? Autonomic Determinants of POTS - Pilot 2 https://clinicaltrials.gov/ct2/show/NCT04140721...
View ArticleJohns Hopkins POTS program
Just wondering if anyone has any experience with this program/practice. I would be grateful to hear from anyone who has. Thanks!
View ArticleIvabradine = Heart Pain + Sleep Adrenaline
Hey, I've been taking Ivabradine at various doses for 3 weeks. Depending on the dosage I go a few days feeling better then I start to get short stabby pains in my heart and left arm and leg veins. At...
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Mestinon Trial of 1
A bit late, but I promised to report about Mestinon Trial (@echobravo) My new GP takes M.E. seriously. Not only that, he allows me to trial Mestinon without going through a specialist which would be...
View ArticleHow do you deal eith both POTS and low ADH
I havent figured out how to manage these two together. For POTS you need tons of salt, but for diabetes insipidus you need way more water. I can't drink straight water, it will crash me bad so it...
View ArticleShould I keep HR low or push it high while exercising with POTS?
Although I've been sick for years, in the past few months POTS symptoms have become much more difficult and disabling, so I'm new to POTS management. I know that exercise if often prescribed for POTS,...
View ArticleHelp me figure out sudden sodium/electrolyte intolerance?
Hey folks, I’d be happy for any pearls of wisdom you can toss my way. About a month ago I suddenly developed extreme symptoms that seem sort of like an electrolyte imbalance - crampy/tense muscles, big...
View ArticleFor folks in New Mexico...tilt-table testing is now available in-state.
I've been corresponding with a Long Covid patient in New Mexico. It's been interesting to see how services are being developed here that were not available in the recent past. I know many people in New...
View ArticlePost-Covid POTS and alpha-1 adrenergic AABs (G-Protein receptors)
A couple of weeks after I contracted Covid, I developed symptoms that resemble Hyperadrenergic POTS, which have persisted for the past ~10.5 months. I went for a POTS panel, and ended having elevated...
View ArticleSalt tabs: Favorite brands? Dosage?
It turns out that, after a lifetime of trying to minimize salt, it's really hard to take in enough sodium just through my diet! It's too bad that I find V8 rather nauseating. My doctor suggested salt...
View ArticleAbdominal compression tips?
Hi folks, I’m looking for any tips you have about using abdominal compression gear to help with POTS. I recently purchased an elastic abdominal support with velcro closure, and while I love the effects...
View ArticleWhy don't we use subcutaneous saline therapy?
So we know saline therapy offers significant benefits to POTS pts. Many Potsies, especially in America are on daily/weekly/monthly saline infusions. Most do so via peripheral access, a PICC line or a...
View ArticleGlobaffin for POTS
Hi everyone, I have found this treatment: https://www.therapeutic-apheresis.com/en/products/globaffin/ A friend from Germany told me that there are doctors there who use it with great success. Anybody...
View ArticleDo these Florinef side effects go away?
Hello. I am a caregiver for my adult daughter, who is wondering (1) if it's common to have side effects such as a "drugged and drowsy" feeling - or depression - as your Florinef dosage increases? (2)...
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