keppra or not

[minnbikergirl]

i dont do well on the computer, so I hope I find the responses.i have been having seizures since 1971, and just the last 8 years I have been seizure free. I have been on dilantin, phenobarb., mysoline and tegrel.. I gained alot of weight, over 80 lbs. on tegretol. since I was seizure free, I went off the pills, and lost all the weight. when i started taking it again, i started to gain the weight back. I dont know what to do.

My doctor is suggesting keppra. i read some things about it. My health is important, but I am 54, and i felt terrific after I lost the weight. since i gained the weight back, I feel depressed too. I dont know if I am making a big deal about it. I have to take something, and I know it depends on a persons own body.

I just want to get some feed back. Since the tegretol is back in my system, I dont have any energy, and Im feeling depressed, lazy and just different. Am I just making all this up in my head? I dont have any seizures, but I think there are side effects from tegretol

[skillefer]

Hi Minnie! I remember well the weight I gained when I was taking depakote. It wasn't fun. And I too lost most of the weight when I was taken off of depakote. Weight is an issue that I wish doctors took more seriously....after all, the more we weigh, the higher our drug levels need to be. And personally, I'd want my doctor to want to keep drugs at a minimum. I think its a matter of finding which meds work for you....and which side effects you're willing to deal with.

[brain]

Biker Girl!

Welcome to CWE. Some anti-epileptic drug will cause
tiredness, depression, weight gain and
some of the things you are posting.

You need to pick up the phone and do
schedule an appointment with your Doc
to go over the medications you are on.

It may be as simple as cutting back the
dosage, or you might be experiencing
the side effects. However you did not
state how long you had been on the
Tegretol / Keppra.

As with all anti-epileptic drug - they take time for the
body to get adjusted and get used to it.
Sometimes one has to tolerate the side
effect(s) that comes with it for seizure
control. But if it's bad side effect(s) or
allergic reaction - the Doc will then will
try you on something else.

That's the only recommendation is TALK
to your Doc and let him/her know what
is happening, how you are feeling, what
you are experiencing. Write it all down
so that you won't forget.

Feel free to browse around here in CWE!

[minnbikergirl]

thank-you all for responding. I am a newcomer to this site, and the let me tell you, I have learned so much. I think the age that I began taking the dilantin and phenobarbitol affected my memory and alot more. Also the dosage was very high. I had grand mals, petit mals,and alot more types of seizures. the grand mals were the most. memory was on the top of my list. also I wasnt able to comprehend a whole lot of things. I wanted to be like my peers, but it wasnt going to happen. I think the timing of the start of my seizures had alot to do with it. Phenobarbitol and dilantin together was terrible!!! My teeth are bad because of it!! At 50 years old I still am learning to accept that I am a good person no matter what hapeened to me.

[Bernard]

Hi minnbikergirl, welcome to the forum.

Why did you start taking the pills again if you were seizure free? FYI - Stopping drugs when seizures have been controlled for years

[minnbikergirl]

I stopped on my own.... Of course that ws stupid...I didnt have any seizures, but as far as car insurance, I needed my doctors ok to drive, and because I wasnt on any medication, the doctor said it would be my fault if I wasnt on any meds. And bwecause of my past, my seizures are probably dormant, like a volcano, one could go off any minute,,you never know when, and I was very lucky...but I am finally on a low dose...That helps....

[BuckeyeFan]

Welcome to our house. Take a stroll around and I am sure you will find many kind people and hopefully some answers to your questions.

I take phenytek (dilantin) and keppra. I have found that many people find the keppra quite effective and at low dosages, the side effects are usually minimal (though everyone is different). Find a med that is effective and learn all you can about the side effects. Knowing what to expect can help make their impact easier to handle.

Once you are under control, feel free to explore the many alternatives suggested here. You may want to give one of them a try in conjunction with your doctor. If he sees that one of them works for you, he may back off the medication requirement for driving. I think including him in the decision would be the key.

Welcome again!

[Birdbomb]

Welcome minnbikergirl

I stopped my meds on my own too, after being seizure free for like 18 months. Still seizure free and no meds. I hated the way most of them made me feel/act/think.
I gained weight and had depression on most of them. Now I'm off all anti-epileptic drugs but take chemo for RA! Rx to suppress my immune system. They have the same side effects, weight gain/depression/attitiude problems. It's always something

[Meetz1064]

you've found a wonderful home here.

PLEASE make sure that your doctor understands your concerns about your meds, at all times. They DO WORK FOR US. However, WE have to inform THEM of how things are working, or aren't.

And if the doc isn't willing to listen, find one that will. It's important that they do, and that you are heard. You're NOT being silly because you don't like the side effects. We all react differently, that much is true. But the docs are there to help us through that....

Take care,

Meetz

[Elaine Howell]

Hi There
Re Keppra, I'm on it too, having tried every single other anti-convulsant on the market. I have been reading some real horror stories about Keppra, I try to saty open mided when reading about these drugs, as we are all so very different, and of course side effects will be different for everyone. The one common thing with Keppra is the depression, I have been feeling so very down and miserable lately, (probably this horrible English weather doesn't help!) I know also, that some people have suicidal tendancies, I haven't been that bad yet! I lost my darling mum just before Xmas, and I lost another job because of my epilepsy, for about the eighth time! I'm also waiting for a secong lot of brain surgery, so things could be a bit better, I'm lucky to have a good partner, I don't know what I'd do without him! I've just cut my Keppra down form 1500mg am and 1500mg pm to 1000mg twice a day, I was just feeling so low.
I have to laugh looking back, I was on a drug called Epanutin, and the doc said to me, "You may get acne, and facial hair" I just looked at him, and ever the joker I said "No worries Doc, you won't see my spots 'cause I'll have a beard!" He did laugh.
I 'm a bit of an optimist, I try so hard to not to let epilepsy rule my life, the first surgery worked for five wonderful years! I wish it hadn't come back again, but if I hadn't had epilepsy, I'd never have met my partner, so I think everything happens for a reason.
It would be great to hear back form you. I'm 44, I live in Northamptonshire, UK, I'm writing a book about my experiences with epilepsy, specifically with employment, it's time someone took a tongue in cheek look at life through the eyes of someone with temporal lobe epilepsy, there are some funny bits in it, but I can't finish it until I have my second op in the next few months.
Hope to hear back from you.

Cheers
Elaine

[Mainer]

I'm new here, too.

For my 15yo daughter, the Keppra caused major depression. She's only been off it three days now (I took her off cold-turkey - I know, I know) and she's bounced back to being her old self in that short time. Amazing. I also have a friend who's 2yo had a very hard time on it. Has anyone had GOOD experiences with Keppra?

[BuckeyeFan]

Keppra can be very effective for many people, though like most anti-epileptic drugs, it is loaded with side effects. I have been taking it for 4+ years and have had to deal with the mood swings nicknamed KepRAGE. As a 46 year old, I have been able to deal with it 'fairly' well. However, this may be just too much for a teen.

Watch her VERY closely with the sudden withdrawal. The withdrawal can cause a seizure.