after 2 decades of the same AED I want a change

[April]

Hi all. After 2 decades of basically the same AED, I have just not thought to join a forum and do a little research of my own. My seizures have been controlled successfully (first Tegretol tablet, then I learned hat Carbatrol worked a little perfectly due to being an xr capsule - no breakthru seizures when I failed to take meds at the EXACT same time daily).

But I think I have finally realized that some of my personality might not be "me" but actually the meds. I've been on the stuff so long (since adolescence, riiiiight when all the hormones start kicking!) that I realize now I may have no idea what "normal" really feels like.

I have mental fogginess, ZERO sex drive, irritability/moodiness, no follow through and just about no motivation to do the things that actually sound really fun to me. Anyone else experience this?

At my request, my Neuro started me on a mild antidepressant and we decided to try Keppra - to help with the mental clarity, low motivation, lethargy.. & I'm up to 4000mg a day now and weaning off Carbatrol, which is allowing breakthrough seizures. Just started Keppra XR 3 days ago to see if it would help before trying something else since extended release seems to work well for me. But the highest dose of that I can take is 3000mg. I'm having super weird dreams and I keep reading about Keppra rage... which I do not want to experience!

I welcome any wisdom and shared experiences... appreciate the listening ear!

 

[RanMan]

April,
I have 34 yrs of Ep experience.
Sorry if I sound negative but if your previous AEDs were working perfectly as you said then why would you want to change and risk more seizures (more severe and more frequent)

Randy

 

[pita300]

Hi all. After 2 decades of basically the same AED, I have just not thought to join a forum and do a little research of my own. My seizures have been controlled successfully (first Tegretol tablet, then I learned hat Carbatrol worked a little perfectly due to being an xr capsule - no breakthru seizures when I failed to take meds at the EXACT same time daily).

But I think I have finally realized that some of my personality might not be "me" but actually the meds. I've been on the stuff so long (since adolescence, riiiiight when all the hormones start kicking!) that I realize now I may have no idea what "normal" really feels like.

I have mental fogginess, ZERO sex drive, irritability/moodiness, no follow through and just about no motivation to do the things that actually sound really fun to me. Anyone else experience this?

At my request, my Neuro started me on a mild antidepressant and we decided to try Keppra - to help with the mental clarity, low motivation, lethargy.. & I'm up to 4000mg a day now and weaning off Carbatrol, which is allowing breakthrough seizures. Just started Keppra XR 3 days ago to see if it would help before trying something else since extended release seems to work well for me. But the highest dose of that I can take is 3000mg. I'm having super weird dreams and I keep reading about Keppra rage... which I do not want to experience!

I welcome any wisdom and shared experiences... appreciate the listening ear!

April,
I've been on tegretol since I was 18 Im now in my upper 40s. I have been on Tegretol XR since it came out. It controls my tonic clonic seizures. I'm on Keppra now also at 4000 mg a day. It just proves that side effects are different from 1 per to another. I had no real issues with the Tegretol but Keppra I absolutely hate It makes me mean, ugly, tired I sleep constantly and also on an anti depressant for the depression that I've been fighting for years. I really believe the Keppra is making my depression worse. I just know I didn't feel like this before I started the Keppra. I see the epileptolgist in late May at which time I will talk to him about switching to something else. Especially since the Keppra isn't helping with the seizure I have now.
Just my 2 cents:twocents:

 

[April]

April,
I have 34 yrs of Ep experience.
Sorry if I sound negative but if your previous AEDs were working perfectly as you said then why would you want to change and risk more seizures (more severe and more frequent)

Randy

When I say working "perfectly" I mean in controlling the seizures... however I am NOT happy with the side effects. I have terrible memory loss, awful short term memory.. forget what I'm doing where I'm going, can't remember the words to use when I need them, I'm irritable, emotional and feel moody. So that's why I want a change. I want to be person who thinks more clearly and is nicer to live with. By the way, I'm just 35. Way too young for this.

 

[April]

I have read similar reviews about the Keppra. Not sure if it just doesn't bother me any more than usual (re: anger) or if it's b/c I started an antidepressant at the same time, for the first time in my life. I think I have dealt with mild depressive issues for a long time now and just never realized it could be attributed to the meds (Carbatrol) I was taking for years and years. Thanks for your reply and good luck to you.

 

[D-mo]

Sounds like your epilepsy is "controlled". I can only offer personal experience, because well .. thats all I can offer.
When i was controlled, I found that i was just a little foggie at times. Memory loss, is a given with this condition, as the siezures have raved your brain. However, if you find that emotionally you are not yourself, im thinking that this could be an issue with the meds.
For me, and only for me, I did a slow reduction of the meds that were controlling my epilepsy, with the blessing of my neurologist. It took a long time, but the meds that are controlling your siezures .. are doing there job .. so thats where i went ... to help increase my quaility of life.
Nothing is worse than a breakthrough siezure, caused by undermedication. But steady monitoring of your situation with your doctor, when you are controlled ... should prove to beneficial for your situation ..

d-mo