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Hi Rachel.
I can identify with some of what you describe your husband going through, although my epilepsy is comparatively mild, at this point. I started having seizures in my late 20s, about a year after a car accident in which I sustained a head injury. They could never locate the scar tissue, though, and more recent testing has suggested that my seizure disorder is generalized and probably genetic rather than injury-related. I spent years trying to find a medication whose side effects weren't badly debilitating. I was treated with Dilantin for a long, long time. I still had petit-mals all the time, though, and a grand-mal once every few months. And to make matters worse, like your husband, I suffered dizziness, double-vision, impaired equilibrium, and problems with memory and concentration.
After I was rediagnosed as having a generalized epilepsy, my neurologist switched me to Depakote, which has given me much better seizure control. I rarely experience even petit-mals, any more--only once in awhile, when I'm under stress or I've been awake for too long (over 18 hours). I never experience grand mals, any more. So I guess that I'm comparatively lucky, at least for now. But I do still struggle with memory and concentration problems--like your Ivan, I really can't multitask, very well, and it's affecting my working life. I hope that I'm not experiencing more serious cognitive deficits--of course, it's hard for me to judge. I haven't really come up with a solution: I really don't know what I'm going to do for a living that won't involve some multitasking.
I understand Ivan's reluctance to talk about his disorder or go to support groups. But I started doing just that, recently: talking to a lot more people about my situation, and meeting other people with seizure disorders. I can't overstate what a relief it was to finally talk to other people who know what it's like, from the inside--this has made a huge difference, for me. "Coming out" as epileptic to other people in my life has been more difficult, sometimes awkward, but it's always something of a relief to unburden oneself of a secret.
But like I said, I understand where Ivan's coming from, and that he's going to have to negotiate all of these issues in his own way. He's fortunate that he's got you to help him seek out answers, though.
-----Original Message-----
From: Rachel Murillo
Sent: May 6, 2007 3:48 PM
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
Subject: RE: [Cent_Wa_Epilepsy_Support] Re: New to the group
Sherry:
I can understand - right now my husband hasn't had a seizure in about 3 weeks. But, durring the time I call the "dark ages", he would have several each day - maybe only one big one, and several little ones. It would be really tough if he also had alergies to the medication. The neurologists believe Ivan's seizures are caused by a car accident after which the seizures started (around 1989). His seizures were under complete control for many years until about 3 years ago. They can't locat the scar tissue, though, and so surgery hasn't been an option. There was one neurologist who wanted to try the VNS - but, we moved to Seattle and his new dr doesn't think it will help.Is Lars developmentally disabled? Ivan isn't - but after the dark ages, I have noticed he's much less capable of deductive reasoning and absolutely incapable of multi-tasking on even very simple things. He is working on a masters degree - but can only take one class at a time. Even with one class, sometimes the stress of a deadline or test can cause him to have seizures.Rachel
Sherry <hot.rod.wife@gmail.com> wrote:
Sherry <hot.rod.wife@gmail.com> wrote:
Lars is allergic to so many of the seizure meds - dilantin, tegretol,
lamictal. He was on Depakote and Neurontin for years and was not doing well
with them at all. He could easily have three grand mals in one day!
We haven't seen any adverse effects from the three that he's on now. We
have noticed that he can have a hard time getting his thoughts across and
doesn't always make sense. Probably due to the mega doses of everything
he's on!
We know a lot of people in the Developmentally Delayed (DD) community who
have seizures, but not to the extent that my step-son does! Most of them
are pretty well controlled with the meds they're on. So no one really
understands what it's like to have so many of them in one day with no
warning. Lars could get what we call a "cluster" going - maybe 15-20
partials in an hour or three falls in 15 minutes, etc. We do have Ativan
that we have him take when he has more than three seizures in a short period
of time. Most of the time it helps, but it takes about 20-30 min to kick in
and he can have a bunch more before that happens. Sometimes he can
understand what we're trying to give him but other times he's so confused
and disoriented he has no idea what to do with the pill!
How long has your husband had seizures?
Sherry
-----Original Message-----
From: Cent_Wa_Epilepsy_Support@yahoogro ups.com
[mailto:Cent_Wa_Epilepsy_Support@yahoogro ] On Behalf Of Rachelups.com
Murillo
Sent: Sunday, May 06, 2007 8:21 AM
To: Cent_Wa_Epilepsy_Support@yahoogro ups.com
Subject: [Cent_Wa_Epilepsy_Support] Re: New to the group
Sherry:
Your son's epilepsy sounds very much like my husband's. My husband is
on Dilantin, Depakote, and Lyrica. Lyrica is the newest for him -
replacing Keppra because of the negative effect on his personality.
He got angry and lashed out a lot. The doctor said that is not
uncommon for Keppra.
He has recently increased the Dilantin and has not had a seizure in a
while. The downside is that he's dizzy a lot and has double vision.
He's done a lot of falling down - especially on his head - with no
warning signs. The fact that there are no warning signs is, by far,
the most difficult part for him because it creates a level of fear and
uncertainty.
My husband doesn't like to talk about his issues very much and has
avoided any kind of support group - so I go to find out as much as I
can.
Rachel
Don't pick lemons.
See all the new 2007 cars at Yahoo! Autos.
-Tony Diaz
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