When is the next one?

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4hockey

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I am VERY new to this I have had seizures since I was 10...But this is my issue sorry it is long but I need an answer or some thing...

2001 i was put on Topamax alone with luck i was FINALLY seizure free, or so i thought. In 2004, I had a break through seizure and had a neurologist put me on tegretol with it. That made my seiures worse. I got a new neurologist who took me off because they were contradicting each other and put me on Lamictal. In April '05, they did the 5 day no meds in the hospital 24 hour EKG thing. THAT is when i found out i had Juvenile Myoclonic Epilepsy, they told me i was loosing about 7 seconds of every minute and didnt even know it. Wonderful...right? So....in '06 i have a child that almost kills both of us because during my 7th month, in which he is born and i begin a spree of seizures that will continue at two a week for about 3 months and then lessen and stop by Dec. They stay under control I am able to drive again and no seizures.

September '09, i forgot to take my meds...dumb @#$ i had a seizure. November, i had a seizure and blacked my own eye, who knows why, December, I had a seizure gave myself a concussion, who knows why. End of Jan, first of Feb...had another broke my jaw in three places, was put on the "so called" miracle drug Vimpat at the same time with my Lamictal and Topamax.

Two weeks ago...On Monday night, i had a seizure, Tuesday morning, i had a seizure. Went to my neurologist on Wed who took me off the Vampit and told me guess it didnt work for you, and raised my Topamax. My hearing as of late seems to be going, i suffer major memory loss, and yet my fear is when am i going to have the next one. i have been very lucky to not be alone. Having to file for FMLA now for myself and my husband. I dont care about having my disorder but i want to stop having the seizures and living in fear.
 
Unfortunately, the medication merry-go-round is all-too-common with epilepsy. It can take awhile to find the magic med or combo of meds that does the trick. For some people, changing nutrition is what makes the difference, so you might want to take a look at some of the nutritional approaches folks have had success with. It's exhausting I know, but keep pushing to find something that works. And do what you can to cut out stressors that may be triggers.

This link might be useful:

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
 
thanks. question....i have been on 13 different meds, in my 27 (showing my age now) years with epilepsy. the "merry-go-round" has me afraid of falling off and not ever getting up again. I will be 38 in Oct and i want to see my kids grow up. in all my years of epilepsy this is the first time i have ever been afraid
 
I know what you mean 4hockey about not knowing when the next one will be. I worry about it too-
I just had a neuro visit just to find out that I'm "medication resistant" even though I'm on three meds right now. Keppra xr, Tegretol xr and Lamictal. I will be getting off of Tegretol xr at my own request. I don't want to deal with three meds at this point- now that I'm refractory/med resistant. Don't see that point. I've been trying to get off of Tegretol XR for years now- I complain about it a lot but get the same phrase "You will have seizures if we take you off of it."
So patience I was.. and we are now taking me off of it. YAY
I will be taking my last dose on April 14th on my birthday! YAY :)

My neuro and I discussed possible surgery and video EEG. I told him no to surgery since I've had 9 operations in my lifetime and Im only 26. Its what I call a "controlled death" since they are helping you stay alive during the surgery etc.

Anyway- we all have to think about "when will the next seizure be?" And those of us that have an aura do find it scary but helpful to know a seizure is starting up. But it doesn't give me enough time to do much beside sit down or ask for help..
Its a warning but it only means one thing- a seizure.

Please take care,
Crystal
 
Hello and welcome to the forum. I can definitely relate to your fear. I've had a recent increase in seizure activity myself and it has me scared too. They keep increasing the dosage of one of my meds after each seizure, one I thought they were going to take me off of...that hasn't happened in the past and I keep wondering why. I have been lucky so far, my husband caught me enough during one siezure in Dec. so that all I ended up with was a massive goose egg on my head...but more often than not I am alone...and I do wonder "what if". My seizures are changing as well and that REALLY freaks me out.

You aren't alone. Every person here can relate to what you are going through in one way or another. SOme are newly diagnosed, some have dealt with the affliction for years, some of us are folks who don't have E but have a spouse, brother/sister, mother/father, etc. who do. All of us support each other to the best of our abilities on any given day. Bernard has truly made a wonderful, caring and unique place for us here and I'm sure you will enjoy it :)
 
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