Neurologist recommends I switch from Trileptal and Keppra: Experiences?

[riahc3]

Ive been doing

Trileptal 500mg and Keppra 1000mg in the morning
and
Trileptal 500mg and Keppra 1500mg at night

My last neurologist visit I was told that I should change my treatment as Ive been on this for about 4-5 years or so.

The main reason Im scared to change is because minimum to work I have to drive 90 km (56 miles) daily combined to/from work. Obviously driving 160 kmph (100 mph) changing medications scares me.

The reason she recommended to change is because I do suffer a lot of side effects. Most I have grown acostume to:

Suicide thoughts
Fatigue*
Tiredness*
Headaches*
Migraines*
Lack of motivation to do anything*
Mood swings
Dizziness*
Drowsiness*
Concentration problems!
Mental sluggishness!

"*" are problems I encounter nowadays and "!" are critical to my work as I am a programmer.

I want to know if anyone has switched from these medication to another with more or less success. Its obvious that EVERYONE is different but I was wondering about some experiences. She, of course, says that I will be OK but my Trileptal/Keppra combination dosage was risen a few times before my epilepsy was completely controlled without having attacks.

Thank you all

 

[George__]

I am doing well on Keppra and it has been the best drug for me.

Are you even allowed to drive if you change medication?

 

[SlimBlue]

A lot of those side effects are listed for other AEDs as well, but you're right about everyone being different with side effects and what keeps them controlled.

Usually changing meds produces adjustment side effects and possibly increases in seizure frequency/strength- or in your case possible breakthrough seizures untill you stabilise on them.

I'd be very wary of changing from meds on which I was controlled, to playing the whole (possibly long-term) game of wack-a-mole again.

I've been on the same combo of meds for over 15 years, and whilst I'm not controlled, I really wouldn't want to start playing that game again.

I don't see how she can be 100% sure you won't have any problems. In fact I'd call it BS. Ask her if she'd be willing to take the same risk in your position, or for her child.

You probably wouldn't be able to drive with any certain safety while you were adjusting to new meds, and there's no guarantee they'd work as well at controlling your seizures anyway.

 

[riahc3]

Thank you for your posts.


Here, if I suffer a seizure I am not allowed to drive until 1 year passes. Obviously that is impossible as I have no public transport what so ever to my workplace.

I don't mind dying on the road from a car crash to be honest but I don't want to hurt anyone else on the road. That's what frightens me!

 

[Dignan]

Honestly, keppra could be to blame for that list of side effects. If you are taking both its hard to say which is giving you problems.

I've been on Keppra for almost 3 years, and I have never been the same since leaving Dilantin. Is dilantin to blame or keppra? No one can tell me.

It really is up to you in the end. If you want to try it, you'll have to do so and see how it affects you individually. That is the only way to know for sure.

I just wish in my case i hadnt switched because my quality of life has taken a major hit.

 

[valeriedl]

I'm on keppra plus a few other meds and the only problem that I don't deal with are suicide thoughts.

One of my major problems with keppra 'kepprage'. It doesn't take too much to get me mad over things. I've been out in public and started yelling at people for almost no reason at all. I was at the grocery store recently and actually started screaming because there were no lines open. I know there were other people who probably wanted to do the same thing and were happy I was doing it though!

 

[cawhitern]

Wow. I recently switched to Keppra XR from Dilantin because it was supposed to be so much better for me. No seizures for 4 yrs and now I'm having trouble. WTH???
As far as the side effects go I think it's about the same for all the AEDs. We're all different and some of us are more sensitive than others. I sometimes wonder if I didn't know about the side effects would I experience them since many of them are so subjective? I mean a rash is one thing but anxiety.....is that just me or is it the med?

 

[Dignan]

I was in the same boat as you with moving from Dilantin, although my seizure frequency hasn't gotten worse. I really wonder about the logic behind moving someone off of something that is working just because it is older drug and the newer drug is "safer." I have a feeling in 20 years that Keppra will have just as long a side effect list as dilantin does now..

 

[cawhitern]

I hear ya Dignan, I don't think there's any "winners" in the AEDs. Wouldn't it be lovely if one of these days they came up with an AED that worked on all seizure types and the side effects were clear skin, luxuriant hair, weight loss, restful sleep night after night, and a sense of calm and serenity? Oh, and straight teeth and healthy gums!!

 

[lindsayschu2]

I'm on 2,500 mg of keppra also, and I have noticed that B6 supplementation (50 mg a day) plus a B-complex (to also get B12 and niacin) has really helped with the side effects. If you try that route, you would want your dr to add a B6 level when you have blood drawn to make sure that level never gets too high, as that is one vitamin you can get too much of--but 50-100 mgs a day is generally considered safe. I've gone on, and then off B6 and notice my moods and energy have tracked with whether or not I'm taking it, so I just started it again.