New Here/JME/Generic Keppra

[msat1981]

Hello!

I've been googling Juvenile Myoclonic Epilepsy and especially Keppra lately.
This forum board seemed like a good place to join.

I'm 28 and was recently diagnosed with JME and recently put on the generic version of keppra. I had my first actual seizure when I was 22 at the doctor office right after a blood draw. I'm a sissy as is with medical stuff so that's why I passed out. I was out 20-30 seconds having a seizure I wake up to a nurse "screaming" at me and holding that salt stuff to my face. I stayed in the same position i was in. When I put my head down on the table and "woke" up after the seizure only thing that was different was my arms were out. What kind of seizure was that??

Anyway I do the EEG which scared the crap out of me because of the strobe light they put in your face. It comes back abnormal so I get put on Tegretol and deal with those side effects for a month. I go on a trip and forgot to pack the Tegretol so I went without it for a week. I hated the side effects so much and my neurologist at the time really didn't explain much to me so I pretty much just said screw it all.

Since then I've had to deal with my mouth twitching when I talked and especially when i would get tounge tied or got nervous. I had other jerks too with my arms and hands, but they went away as I learned the importance of sleep.

Fast foward to this year i noticed the jerks increasing a lot (mainly when I talked) and my hands were starting to do it too a bit more. It stated to scare me I saw a new neurologist and she diagnosed me with JME.

I started the generic keppra two weeks ago I'm on 1000mg I take them together at night before i go to sleep.

Well the agressive/angry part lasted a week but what I have been having a hard time with is I get scared and am freaked out for a few hours every single day. I am way more sensitive to the lighting in my office. Infact I feel like all my senses are more sensitive. During the few hours of feeling odd and scared I feel like anything can happen? Why is that? It's messing me up bad!

Since the jerks were mainly with my mouth I can get through my words a lot better i mean 98% improvment there. But the left side of my mouth area where the jerks would occur feels weird.

Anyway will this pass? The feeling scared and weird and nervous and anxious garbage? help????

 

[epileric]

Welcome msat1981

I know how you feel regarding side-effects. I've been on Tegretol for decades so I've had time for the side-effects to subside.

I was also put on Keppra a year or 2 ago & had some pretty bad side-effects at first but they wore off after a while. It was when the dose was doubled that I got extreme side-effects of being forgetful to the point that I couldn't read a book without forgetting the previous sentence. The anger, paranoia & depression were also pretty bad. Also for the first time in my life were my seizures ever sensitive to flashing lights from that drug.

Something that helps a lot of people with the keppra side-effects (including the kepprage) is vitamine B6. I was going to try it but could never remember to take it 2 days in a row.

 

[msat1981]

I am definately going to try the B6. I called down one of my co workers last friday. I was mad at her for other reasons but oh gosh I picked the arguement with her. So yeah I definately want to get the "anger" part of it controlled.

And thank you if I know this will pass it will give me a reason to keep trying as they say.

Also how easily can a seizure be triggered by light?

 

[epileric]

How easily a seizure is triggered by anything is different from person to person. For that matter how easily it triggers seizures can change in each person. It might take a while but I think everyone has to learn their own personal triggers & how sensitive they are to them.

As for the side-effects, they may or may not pass. I can only give my experiences and as I said, everyone is different. However I would recommend to anyone who tries a new anti-epileptic drug that they wait to see if the side-effects subside. The curative effects might be worth it.

 

[msat1981]

wow yeah im nervous since office light hurts my eyes more now.

Thank you for the advice and i really do hope the really bad side effects
subside.

 

[epileric]

You're welcome. I'm sure more people will be by with more advice soon. There's lots of good people here with good information & experiences.

Something you may want to look into if you are very photosensitive to lights is a pair of blue or yellow polarized glasses. I do know someone with epilepsy that couldn't go into an office building, wal-mart or any place that used tube lighting but she wore yellow polarized glasses & that seemed to stop her seizures from being triggered.

 

[msat1981]

I will have to check into that as well!!! I hate office lighting as is but since taking this medicine oh my stars.

 

[dfwtexas]

Look at generic drugs links here. I am on Keppra and it does a good job, but when I got put on generic, it created all sorts of problems. Generics are not a good thing when it comes to seizure meds

 

[msat1981]

My neurologist finally got back to me and said my reactions were not normal and to stop taking it. I replied back to her that im scared of the twitching if i go off of it. So I might risk it and stop taking the medicine because oh my gosh the effects are so horrible. I had an extremely rough night last night.
I was reading some about the difference between generics and brand names. Its so scary.