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From: shacup@yahoo.com
Date: 6/21/01
Time: 12:36:35 PM
Remote Name: 138.230.48.18
Thank you very much for your reply. I will post this to the page, and maybe others can either learn, or at best learn to be patient, and in the mean time save up a lot of money if they wish to pursue it.
As for the Mayo, thats one more reason why I am getting so frustrated with this. I was informed for about 2-3 weeks by my Dr. that this was the next step, it was setup blah blah blah, and then get a letter from Mayo about "Too many patients and not enough Dr." Good Luck.
I have also intertained the thought about going to our local Kansas University Medical center and see what gives. I have very good insurance, but the time it takes to get in for testing ( and then everything comes back noraml) doesn't help with job schedules ect.
I have even offered my Dr. complete release from liability to induce one of these attacks with all their gadgets hookedup, but he will not do it, and in his words "He seen enough". Its amazing how all my Dr. are in the same building and don't know anything without first having to re-read my 2-3" thick record.
Anyhow, I will keep going ( I guess ), but as odd as it sounds, I got some pleasure knowing that I am not the only one going through this. Topeka Ks is not the biggest spot on the map, so sometimes if the problem isn't in the DR BIBLE, they tend to write it off. At least I have a Cardiologist willing to research new info and keep me alive.
One question: Have you ever heard of anyone dying from this. My heart stops and with the strokes ect. I don't know if my concern should step up a notch or not. It seems the older I get the worse the spells get, as well as the lasting affects. Since I have a pacemaker, an MRI is out of the question, but everything else test fine. They claim the stroke was at the molecular level, and I loose braincells ect during my spells.......that realy makes a good conversation piece, everyone gets a kick out of it, but me.
Sincerely,
Paul Porter
"jjherr@clinicalpsychologist.com" <bonestamp 06/21/2001 01:49 PM Please respond to jjherr To: <Paul_Porter@wr.com> cc: Subject: RE: V V S
Hello Paul,
Thank you for your kind note. I think the rest of the VV forum would appreciate reading about your experiences. It would be a favor to them if you would post it on the site. So far, I would say, you have had the roughest time of it of any that I have read. Normally, I don't have time to answer the letters I get but since you have already sought thorough medical treatment and exhausted the local resources in that regard, I thought I'd give you my observations. Remember, I am not a medical doctor so the fact I can't make sense of it doesn't mean a whole lot.
I am very glad that you have sought medical treatment and have participated in it to the extent that you can ask good questions. While the pacemaker may sound drastic, so is falling off a horse! It sounds to me like you have used good judgment so far in getting help for your condition. I don't quite understand about the strokes though and at your age, that worries me.
I don't know what your insurance/financial situation is but I would think you would do well to take your medical situation to someplace like the Mayo Clinic (in Rochester, Minn or Scottsdale, Arizona) where the doctors will work as a team and keep you there and keep testing until they know what is going on with your body. Most non HMO insurance is accepted by those places. I should warn you that even though they may discover "why," that may be all they will be able to do. Still, I would think just knowing what was going on would be more comforting than how things are for you now. Strokes are serious business so I think it is worth the effort to find out what is causing them. If the Mayo Clinic isn't feasible, usually major university medical centers are eager to get a case that is out of the ordinary. Again, I am not a physician but your case sounds like it falls out of the ordinary. Even if you like your present doctors, it doesn't even mean that you will have to give them up. These regional teaching clinics will work with your local physicians to get you the best care possible. There is something refreshing about your physician who at least admits he doesn't know what is going on but given the seriousness of your symptoms, especially the strokes, I would think a very thorough second opinion from a team of doctors would be best idea at this point. I'm sure you are sick of doctors and tests. Still, I urge you to find out as much as you can.
I might add, it sounds like this has been very difficult and you have an amazingly good attitude and grasp of the situation for what you have been through. Good look in finding out what is going on. I'd appreciate hearing what happens.
Sincerely,
John J. Herr, Ph.D. 825 Pollard Road, Suite 200 Los Gatos, California 95032 Voice: 408.370.6568 FAX: 408.370.9256 jjherr@clinicalpsychologist.com <mailto:jjherr@clinicalpsychologist.com> www.clinicalpsychologist.com <http://www.clinicalpsychologist.com>
-----Original Message----- From: Paul_Porter@wr.com [mailto:Paul_Porter@wr.com] Sent: Thursday, June 21, 2001 9:47 AM To: jjherr@clinicalpsychologist.com Subject: V V S
Hello,
I am sure you just love getting all these emails about your website. But I can't thank you enough for taking the time to host it. I have found it as one of the most informable sites thus far.
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.
Thank You,
Paul Porter Topeka Ks Paul_Porter@wr.com