Hi folks....

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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jmalters

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Hi everyone....my name is John and new here. I started seizuring back when I was 19 (am 55 now) and have been very functionable all my life. Closest they could link my prob to was a car accident when I was in my teens....not so sure that was the cause. Anyway have had some troubles here the last 18 months or so and to make a story for a later time short, my doc wants to switch me to Keppra from Carbamazepine. Not sure I like that idea cause I have read a lot of unfavorable things about Keppra...but think she will hear me out. Also hoping to come here and get some good info on Keppra and hopefully meet some new friends. thanx all....
 
Hi John, welcome to CWE!

This is a great place to find general information, support and empathy. I hope you feel free to explore all the different forums.

You'll find a lot of info here about Keppra (you can start by using the search tab at the top). As with all the AEDs, Keppra works for some and not for others. It has a reputation for causing moodiness and anger -- if this happens for you, a BVitamin supplement containing B6 may help.

Best,
Nakamova
 
Hi Nakamova
Thank you and nice to meet you too. I'll take you're advice and do some searching around. Been awhile since I've been in any forums but used to hang out in the "Delphi forums" for years so I know these are great places to meet new friends from all over the world. But already off to a good start for advice....I hadnt read that about the vitamin B. Guess we all need that anyway :)
 
Welcome jmalters - Good luck if you do choose to make the switch.
 
Hi John, just wanted to welcome you to the forum...you couldn't have found a better bunch of people :) Folks here are quite supportive and the atmosphere is pretty relaxing and encourages people to stick around. you'll find a fair number of folks taking keppra to help with their seizures so will probably receive some good input :) Hope you enjoy your stay!
 
Welcome John, I hope your are able to make an informed decision. There are a lot of knowledgeable people here. What ever med you add or switch to I hope it gives positive control over your current issues.

Again welcome and God Bless
 
Thanx everyone for the very nice "welcome mat". Im sure I'll get better info here than have heard anywhere....

john
 
Hi John,
I am actually just starting Keppra (2500 mg/day now) and still on the Carbamezapine (400 mg/day). What I find most with Keppra is the incredible tired feeling I have, especially after changing to the 2500 a day. Initially it was 1000 and now up to 2500. I'll let you know if there are any other unusual side effects. What kinds of "unfavorable" things have you heard? I'm curious now.
Neil
 
Hi John and welcome,

I've had epilepsy for over 30 years now and have tried numerous meds. Currently I am taking 3000 mgs. of Keppra along with 200 mgs of Topomax. The Keppra does make me tired and for some, it can make them depressed, even suicidal, so beware of that side effect.
 
Hi John,
I got diagnosed two years ago and have been on Keppra since. Keppra does a good job in controlling seizures. I did have a hard time with being sleepy when I first got put on Keppra and when my level has been adjusted. Some people suffer from Kepprage...it's can really play havoc with your emotions. I have found it is not terrible for me and when I discussed with my neuro, I didn't like the other drug options and felt their side effects would be worse.
Like E, the seizure meds can effect everyone differently.
Best of luck, glad you found our group!
jenn
 
Neil...you sound almost like me. Only difference is that I am now (as of june 09) on 600 mg/day of carbamazepine. Was on 400 for probably 20 years. Only time I even had an issue was when like a dope, I would forget to take the medician or think I could wait too long to take it. To make a long story short...Ive read a lot about it making episodes worse; that people are sooo drugged up people not being aware of what was going on around them; suicide thoughts (but you get that with any seiz med); trouble concentrating..etc etc. That is wh y I did a forum search and found this place. Best thing is go to the source of who takes it......thatts why Im here. Im open to listen to anything.....got to....carbam calms you down LOL. The joke at home is the wife calls me "calm John" :D

john

John
 
Hi Jenn...thanx for the welcome. Well thats why im here to talk to the real people that take it or taken in the past and why they had to stop. Only one's Ive ever been on was at the very first was Phenobarbitol and Dilantin and they dropped the pheno after about 3 months. Went onward with dilantin for about 20 years and it totally distroyed my gums and finally didnt control the problem. Boosted the dose and was drugged like a zombie. Doc finally put me on Tegretol and wow the world came alive again.....for about the next 20 till now.

I am a fanatic and just wanna know what it going into my body and what it will do and how it will effect me.....AND the people I love around me.

thx
John
 
Hi, John, and WELCOME!

I was on Keppra for awhile. Due to adverse reactions I had to be taken off of it. (mood swings, rash, severe memory problems) It's been great for alot of people on here, though. Mood swings seems to be the biggest problem for most people, with anger being #1. There are usually ways to handle it, though. Hang in there. Your doc will find the right med for you.
 
Hi John,

And I thought I was the only person in the world like me :lol:Even though people talk about Kepprage I haven't experienced it yet (and hopefully won't). Glad to have ya hear!

Neil
 
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