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@...> wrote:
Sherry <hot.rod.wife@...> wrote:
Thanks Rachel. I guess for some people the seizures can be embarrassing.
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!
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
Hello my Name is Heidi, im 26, I was born with Epilepsy, I have myoclonic tonic nocturnal juvinelle epilepsy. I am trying to find info on 2 things... #1 trying...
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Hi, Is anyone interested in coming to this conference? It is free of charge, and travel assistance is available for those with limited resources. Please ...
Hi Sue, Thank you for the welcome. =) I honestly dont remember if the two came at the same time, mine were very spiratic, just like you described nothing for a...
Thanks Heidi! Sorry it's taken so long to respond, but I've been a bit under the weather myself. Take care, Sue In a message dated 10/30/2006 8:33:34 A.M....
Howdy, I was just approved to join the group and thought I'd introduce myself. I don't have epilepsy, but my 36 year old step-son does. He's had uncontrolled...
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...
Thanks Rachel. I guess for some people the seizures can be embarrassing. Lars is allergic to so many of the seizure meds - dilantin, tegretol, lamictal. He...
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...
Yeah, Lars is considered DD because his disability started before he was 18. He's in "the system" which really helped for him to get the housing assistance he...
Welcome Sherry! I hope you find the support your looking for h ere. I started this group as a way for us to hook up between meetings, but it seems we're all...
Wow, if Lars had only 1 or 2 seizures every month, he'd consider himself seizure free! A couple weeks ago, we were at DisneyWorld in Orlando. He had over 40...
Rachel & Sherry, Today is the first day I've heard of Lyrica. Is it a new drug? We'll be looking at some different options for Chelsi. You've both also...
Sue, Lyrica's been around for awhile. Lars has been on it for over a year now. It can cause some weight gain, but not as much as Depakote. Lars does have a...
Thanks so much for the info. I've never seen a helmet like that. Someone needs to design something that doesn't look like a diaper! Hearing your story does...
ROFL! I never thought of it as looking like a diaper <g> If the white edging wasn't there, it'd look a lot better! Maybe we should write to them and suggest...
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...
There was a time that my daughter did have 3 grand mals in one week. The school wanted me to consider a helmet. At that time she was so short, she didn't...
I've been taking medications for siezures since 1983, and you'd think that after this amount of time I would have overcome every obsticle. But unfortunately,...
Tom: That is one of my husband's fears, as well. He was siezure free for many years and simply didn't disclose it. I'm pretty sure that your previous...
I feel for you. My step-son is on three different meds and has a VNS and his seizures still aren't controlled! He pretty much has to tell a potential...
In the past, before my spells were as well controlled as they are now, I've lost jobs due to my siezures. One job involved a 100 mile daily commute, so once I...