Very Bad OI Episode
I was a bit more light-headed than usual all of yesterday, but was able to sit up for a couple hours before laying down. Then after making dinner (10 minutes standing up + attempted adrenaline rush...
View ArticleAnyone tried Octreotide for POTS
One of my worst symptoms is the POTS, I don't even remember a day where my pulse was normal the entire day without going up to 120-30. l. I feel like my heart never rests. I was looking through med...
View ArticlePOTS and neck problem
So my Orthogonal Intolerance is getting worse. It started 2 months ago and now I am flat or nearly flat for 22 hours a day or more. I do this to try to lower the malaise, and not to crash, and I have...
View ArticleCan magnesium improve the symptoms of POTS?
A week ago I started taking a medicine that is in Spain called CN Base and has many components of vitamins and minerals. A few days later I noticed an improvement in the post-exertion fatigue (it was...
View ArticlePoll: Has raising the head of your bed helped your OI/POTS/NHM?
The lifestyle advice for orthostatic intolerance includes raising the head of your bed so that the whole bed is on a tilt. The idea is to both recondition your body and keep fluid in your blood rather...
View ArticleMestinon side effects?
Just started taking Mestinon or pyridostigmine, having stomach discomfort, did your body adjust to this after taking it for awhile?
View ArticleFlorinef stopped working?
Hey, Has anyone been on Florinef for so long and it stopped working? I've been on it 3-4 years and it's gradually got down to the point where my symptoms are back to how they used to be. My sodium was...
View ArticleIs there such a thing as "intermittent" POTS???
I have some degree of OI although I've never passed out. I get lightheaded and positional vertigo sometimes. I have general brain fog/grogginess/vertigo most of the time. I've had the "poor mans" test...
View ArticleFor ME - Potsies : tipps & tricks when out of house
For those of us who can't stand for long/ have to lie down qickly WHAT are the things you take ALWAYS with you when leaving the house (for appointments or shopping or whatever) also Tricks and Tipps...
View ArticleThought I had POTS: turns out it was SA node dysfunction!
I was diagnosed with OI in 2006 (the neurally mediated hypotension type), and in the last few years I thought that I had also developed POTS...but, I was wrong. Rather, the heart's SA node was...
View ArticleOpinions on Florinef?
Hi there, I'd be interested in hearing people's experiences with Florinef for POTS. I have read the other threads as well, just trying to gain as much knowledge as I can before I decode whether to take...
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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 ArticlePOTS—A Chronic Illness Upended My Life (Washington Post)
I’ve spent the past year battling a slew of weird symptoms and health problems. Finally, in March, I received a diagnosis. It’s been a terrifying experience that has tested me physically and mentally...
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 ArticleSevere Mitral Valve Regurgitation? OI? Read this....
I have had mild mitral valve regurgitation for many years--I was probably born with it. Mild regurgitation is common--and particularly in the Ehlers-Danlos sub-set of patients as valves involve...
View ArticleMy Search For Tinnitus Relief Led to Discovery Of A Unique Vagus Nerve...
This post is somewhat of a chronicle of how I discovered a new way to stimulate my vagus nerve. It's a massage technique I'd never read about before, but one which I've come to believe is modestly...
View ArticleClinical Trial for Symptomatic Neurogenic Orthostatic Hypotension
Hi, Phoenix Risers! I was on the UT Southwest Medical Center (Dallas, TX) website today, and I came across a clinical trial that I thought may be of interest to some of you. I'll try to post a link...
View ArticleOrthostatic Hypertension
Hello All, I am wondering if anyone out there has Orthostatic Hypertension. I have many many issues, but specifically I just saw Dr Barboi at NORTHSHORE Neurological Institute in Chicago, and he...
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