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Hi,
This is the first time I have posted on a POTS/dysautonomia forum but I have read many. I have been ill for 2 and a half years – my symptoms started at 5pm on 4th August 2014 after I tried very forcefully to blow up what I thought was a balloon but was actually a water bomb ie very foreceful valsalva. I almost passed out, and have been on the verge of syncope ever since particularly when upright and only able to stand for a few minutes. I was completely well prior.
Before I started treating myself with fluids, salt, licorice root and compression socks, I was positive on poor man’s tilt several times HR over 30bpm increase with no or small drop in bp on standing.
I later did a tilt test which was reported as normal, however I saw my BP go up to over 170/100 when tilted upright and heart felt like pounding out of chest but I couldn’t see the heart rate readings.
I live in the UK and have had no medical help being dismissed as anxiety after this supposedly normal tilt test, probably interpreted by someone who has never heard of POTS.
I have had no brain imaging but feel sure I damaged something that day, maybe slipping of the brainstem or induced chiari.
I do not know if I have EDS – certainly no joint dislocations or hypermobility, but do generally have poor collagen – thin fragile skin easy bruising wide scars, thin walled dilated colon (separate issue many yrs ago), thin walled segment of uterus and my dad has lax skin and bad varicose veins, so it is possible I have some form.
I have tried a number of treatments myself- fludrocortisone – (made headache and hyperadrenergic symptoms much worse and didn’t help orthostatic intolerance), midodrine, despmopressin and pyridostigmine – all ineffective.
I have now ordered some Diamox to try as this theory makes sense if something is stopping CSF drainage from my head, compressing the brainstem, but am worried the diuretic effect will worsen my already low blood volume (like coffee does).
How have others dealt with this and has it helped? Also I am very interested in visiting POTScare Dr Diana’s clinic for a full evaluation but cannot find a way of contacting them online. Does anyone know if they do brain MRI there as this is what I feel I need to look for chiari, pituitary damage etc.
Also if anyone has been there I’d love to hear their experiences.
Best wishes,
B xxx
Hi B, I hate to hear how sick you are, and like most of us your treatments are revolving around symptoms, not locating the underlying cause. I will say that if you have high intracranial pressure, the benefits of treatment SO outweigh the risks of the diuretic effect. Please know that Diamox is short-acting, so effects wear off in a few hours, limiting your risks. I hope you have The Driscoll Theory? There is a chapter about Diamox that includes the importance of watching your CO2 levels to keep it working. That may be critical — please keep us posted! Not everyone has high intracranial pressure, but more than half of the patients we see at POTS Care do. By the way, if you could call the office (1-866-349-9905), the staff will call you back, no matter where you live! Hang in, my friend.
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