I'm another of the adults with CVS. I've been having difficulties since I was 34, for 14 years to date. In the early years, my attacks came perhaps once every two years. However, for the past six years, they have been more frequent, coming as often as five times a year. My latest attack was a few weeks ago, when I was on vacation in England/France. Now I'm baffling doctors in more than one country and having intriguing sociological experiences as I compare medical systems internationally.
Each attack is characterized by increasing abdominal pain and vomiting. Each time, my white blood count skyrockets and my electolytes, particularly potassium, get totally messed up. I have to be hospitalized for both pain medication (demerol) and fluids to restore the electrolyte balance. I'm usually in the hospital for three days - day one is awful until the pain medication kicks in and I can sleep (about 22 hours after the attack begins), day two I am much better and can begin taking fluids by mouth, day three I usually get released. The pattern is pretty consistent. However, there is no pattern as to when the attacks occur.
I've had every test in the world, both here in the DC area and at Johns Hopkins. I was diagnosed at Washington U. School of Medicine last year. I've
tried several drugs - levsin, periactin, amitriptyline, prozac, zofran - to hold off or abort attacks, but nothing as worked this far. We're going to try
imitrex injections next time I have an attack to see if that will cut it short.
In between attacks, I feel completely normal. I exercise regularly, am at apppropriate weight for my height, sleep without problems. I don't know if the increasing frequency in attacks is due to hormonal changes (I'm premenopausal), nor do my doctors (or anyone else as far as I can tell). To cope with all of this, I just try to forget how awful the attacks when I'm in-between episodes and grit my teeth through the pain when they happen. There really is nothing else to do except cope.
I don't know if any of this helps. But I have found it's really good to know that I am not the only person suffering with this kind of problem.
Barbara
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