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From: Paul Porter (shacup@yahoo.com)
Date: 6/22/01
Time: 8:02:01 AM
Remote Name: 138.230.48.18
JJHERR, suggested I post this, I would appreciate any feed back or just to coverse about our problem. my email is shacup@yahoo.com
I stumbled accross it one day trying to find out some new info on my condition, which to my surprise, is encountered by so many others, but apparently have no TRUE medical solution to the problem.
Short History:
I am 36, diag w/VVS at 21 yrs old, always had problems passing out mainly due to heat, excursion,& differnent foods would make me sick for no reason, and not all the time. Of course back in the 80's this stuff probably wasn't even talked about.
Anyhow, I started pursuing this medically about 1985 after falling off a house during one of my spells as I call them.
I am sure you hear all the details, but baiscally I have what I call very severe cases of chest pains, numbness on my left side, but so much pain throughout, that I can't tell what doesn't hurt, I also loose control of my bowels, and sometime bladder, I can't speak during these, even though I want to, and in the end I drop, my BB and Heart during the TT test started normal (130/80), and went to something like 40 over 25 and then quit.
I noticed while I am having these that my BB is fine, than goes to has high thus far like 155/105, profuse sweating, and then starts drop fast, and again in the end I just drop dead.
I have been told of twiching after I am out, but I have no clue of my surrondings, no noises ect. I am just totaly dead weight. I will be out for about 3-6 minutes, and then it takes another 10-30 mins. before I can even standup, afterwards it takes about 1-3 days depending on the severity of the attack before I even feel normal.
I also suffer from Short term memory after these, and at times I loose track of time, its like I have no clue of what I am doing, why I am doing it, or where did my thoughts start and go. This is very frustrating as you know.
I had a TT test, which really finally blew my Dr. mind, I have had specialist tell me "Theres no way all this is happening", thus thats the treatment you get, they are more than willing to take your money if you want, but don't expect much in return.
As for my Heart Dr. he confirmed that during my spells my heart just turns off, and begins to swell. It completely throws off the rythm once I start to come through on my left ventricles, so he put a pacemaker in ( 99 ) which helped out a lot for 2 years, well now the spells have begun to get worse. I suffered 2 stokes in less than 3 months, lost my left side but its returning, I lost memory of things that I have done for over 18 yrs at work, couldn't talk or think straight, Although this has gotten 99% better since Jan 01, I dred that this problem is one of these days going to END IT for me.
My Dr. is making statements of "I don't think this can kill you", but your heart is paying the price during these spells. I appear to be showing a dependency on the pacemaker, no meds have worked thus far, current : Tropol, Medrodine, Amitriptolyne, Paxil, Ambian, and I have taken several over the years.
Ok, now that I have possibly bored you with all this, I am currious of what you think, or could your offer some suggestions as to who I could contact, or where to look for articles on this V V S stuff. I gather from my Dr. that it hasn't been around too long, and they are not sure what causes it.
And in your opinion or knowledge, has anyone ever died from this stuff ? I feel at this point, and after reading so much info on it, that if theres no cure, than there no reason for the pacemaker. I have spent thousands and thousands of dollars on this mess, and 15 years later begining to feel like I am just throwing my money away.
I can say that in someways, the pacemaker while it has helped, also makes it where you have to endure the pain longer. So not quite a fair trade off.