thanks - really interesting - don't know if my drs would go for it though - they are the conservative of the conservatives (after taking me off baclofen and benzhexol because they weren't working my consultant put me straight back on them when I was admitted to hospital?!? go figure..but I actually see him on the 16th of this month!! (I know!!!!) So will discuss it with him and see what he says.. It's really annoying as the dystonia is now affecting my face and tongue. It's always worse at night. I haven't really been majorly worked up for things because in the UK they just don't bother.... just shove oxygen on you... say you probaly need oxygen at home and then because mum discharges me without permission of the drs it means they just don't bother with it. What a suprise!
I'm glad your chest spasms (whatever is causing them) are being kept under control
much love, as ever
Rosie xxxxx
Quote:
Originally Posted by fmichael
Dear Rosie -
Yes, I get chest spasms as well. I've been worked up for them in a number of ways, including multiple agiograms and an endoscopy. Even though both were normal, the best guess of the gastrointerologist is that I'm having a form of esophogeal spasms that dosdn't show up on the endoscopy, only because I wasn't having them at the time. Alternatively, they could be arterial spasm in the heart that didn't show up on the angiogram for the same reason.
In any event, they are well controlled - under either hypothesis - by nitroglycerin tablets, which act to dilate just about anything. It's certainly worth a try. In your case, where your lips are going blue, I would suspect either arterial or perhaps broncheal spasms, but that's just a guess. Have you by any chance been seen up by either a cadiologist or a pulmonologist?
BTW speaking of nitrates, there is at least one recently reported study showing that nitrates designed to combate erectile dysfunction by dilating blood flow "down there" may actually have a beneficial effect on CRPS. See, http://neurotalk.psychcentral.com/thread60772.html
much love as always,
Mike |