Epilepsy Foundation

 

I'm sure this has been discussed before but first I'd like to introduce myself, pardon the lack of clarity...

During my elementary years I moved from the San Francisco area to a much gloomier area (the population and I have never connected) and I became suicidal- the docs tried numerous SSRIs and antipsychotics, and in the process I began to struggle with my weight and had my first tonic-clonic seizure at 10. Most seizures were precluded by myoclonic jerks and photosensitive auras- helpful in that they could usually be stopped by getting into a quiet, dark place. Carbamazepine was given as treatment until age 14 when I was diagnosed with JME.

On one hand, I can drive, and my seizures are under control (before Keppra, myoclonic episodes were an issue in the mornings, with earbuds, or CRT monitors) 

On the other, side effects are more of an issue than epilepsy itself. At 13, I was 270 lbs, a year later, 160. This past year I gained 100 lbs. Then there's the sexual side effects, most embarrassing for a guy going on 21, and partially why I'm most recently prescribed Topamax. But the cognitive impairment is most serious. I won't preach to the choir about how far back I've fallen in terms of intelligence but I'll just say nowadays it's costing me in college.

 

So yea. Currently I'm with a new neurologist who's transitioning me from Depakote to Topamax because of the weight gain issue but my thinking is getting worse. Of all the JME meds, Lamictal was the only one that did not impair my thinking or create the aforementioned side effects. I seemed to develop a tolerance to it (my reason to switch to Zonisamide) and I had awful morning myoclonic jerks. But this was before I was introduced to Keppra :) I'm seriously considering this combo- thoughts or experience?

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 I was on that combination for a few years, and hated the Keppra because of  "Keppr Rage", and went off of that med .  Lamictal has not been much of a problem for me.

Iagree with Jean. I went from Keppra with Zonisamide to Lamictal with Zonisamide (now currently on Lamictal with Vimpat). I had horrible issues with "Kepprage" as well, and will certainly NEVER go back on it. Did you lose that weight initially when you were on Zonisamide? When I had a neuro-psychological test done once, the doctor told me Topamax was one of the worst at affecting memory and concentration. I was on it very briefly several years back.

 

Supposedly we all develop a tolerance to most medicines, it just takes some longer than others. That is why you steadily increase a medicine as seizures worsen/increase, until you cannot increase any more for many reasons, including unbearable side effects.

 

You are thinking about Keppra and Zonisamide? Well, it is hard to tell, I finally couldn't handle the Keppra anymore, and that is why I had to switch that out with Lamictal. The biggest side effect I noticed with Zonisamide by itself was weight loss. Although, within a couple of weeks of starting the full dose combined with another med, I dropped 15 lbs, years later I was on it by itself (not a good idea) and lost much more weight to an unhealthy level. When I was on Zonisamide by itself, which was quite short lived, all of my tonic-clonic seizures came back on an almost daily basis. I believe it is only FDA approved as adjunct therapy currently (must be combined with another AED).

Perhaps I should elaborate on this and that.
Concerning Keppra, I've been on 500mg XR for a few years and satisfied. I'm aware of the issues- we tried 1000mg for a week...

I took Lamictal before Zonisamide. Both physically trimmed me substantially, but the Zonisamide left me feeling too "foggy". I was actually forwarded to an epilepsy monitoring unit during my transition from Zonisamide to Depakote. But I am thinking about Keppra and Lamictal, not Zonisamide.

I have been on Lamictal and Keppra for about 4 years now.  Aside from the irritablility here and there, I think I've been okay.  Unfortunately I haven't seen any great weight loss, I stay about the same 200-210.  I think clearly and keep aware of my triggers for getting upset, like too much noise.  I started with Dilanten and did not like that one.  I am able to keep doing well on my executive job, so I keep on these meds.

 

Later,

 

Ray

That's great, Ray, that you are doing so well! When I was on  Zonisamide was when I ended up losing weight. I haven't had that happen on any other AED...although sometimes it would be nice to offset the weight gain from others.

Raymond MaGee said:

I have been on Lamictal and Keppra for about 4 years now.  Aside from the irritablility here and there, I think I've been okay.  Unfortunately I haven't seen any great weight loss, I stay about the same 200-210.  I think clearly and keep aware of my triggers for getting upset, like too much noise.  I started with Dilanten and did not like that one.  I am able to keep doing well on my executive job, so I keep on these meds.

 

Later,

 

Ray

I'm glad you posted this up! I have some news of my own that pertains to this topic.

I have tried both Keppra and Lamictal and both of them caused me to lose a lot of weight as well. I am already little (normal weighing 115-120) but brought me down to 82. I have been drinking Ensure weight gain (yum yum) but it has helped. Alot!
'
I'm on Lamictal still. Up to 90 lbs. Still having seizures. But one of the worst side effect I just discovered a few days ago when I went to the dentist. Last years check up was ok, but over the last year my teeth and gums started to hurt, but I figured it was because I grind my teeth. The dentist looked at my xrays and told me that most of my teeth in the back have rotted away I have a bottom front tooth thats going to fall out. I asked him what I could do to save it, and he basically said that it's demise is inevitable. We couldn't figure out what happened, I brush and floss, so why are my teeth falling out! I left crying. Yesterday my mom said the dentist called her and said that he was looking through my file trying to see if something was going on and realized I'm on Lamictal. He told my mom that Lamictal causes tooth decay because it causes a decrease in saliva. It's pretty depressing when you are under 30 and being told your teeth are falling out.

sorry I took over your post. I just thought people need to know about this! Oh and he said it's anti-convulsants in general!

Wow you turned on my dim lightbulb.

I got my first cavity shortly after I started Lamictal. After getting drilled 5-6 times and losing a tooth or two I was all "seriously, wtf man?"... I noticed the dry mouth but never made the connection to Lamictal. I happen to be blessed with awesome teeth, however, that are floss-proof. What I've done to keep them is use mouthwash, cut down on sugar, drink twice as much *water*, and swish, always after eating. I haven't lost anything since.

I'm sorry to hear about your predicament Carrie, hopefully your teeth will stay in! Thanks for sharing.

I stopped Lamictal and switched to Dilantin which was added to my dose of Keppra, no matter what I take with it, Keppra always seems to be the voodoo child. I want to switch meds to something different all together. I'm still having seizures, I don't eat right, and, I'm having nightmares. A nightmare just woke me up, that's why I'm typing this. I am losing a lot of weight also, I NEVER feel like eating. I should start drinking something to gain weight and take better care of my teeth, I know Dilantin is bad for your teeth. I hate Epilepsy, I've dealt with some pretty rough things in my life but Epilepsy has been the worst.
Thats how feel...appetite suppressed. I was surprised at how good I felt after drinking a Ensure. But it's expensive so I only can afford to drink it every once in awhile. It's interesting to know that others are expierencing this same reaction. My neuro said he has never had any patient have this happen to them so after several tests and gastologist checking for tumors, ulsers and tapeworms (seriosly) they all finally believed me when I said I thought it was my meds. That was Keppra. Im on MMJ but it only helps me not feel sick to my stomach when I do eat.

Supposedly the leading cause of dry mouth is from medications like Lamictal. My dentist gave me a sample of Biotene toothpaste and mouthwash. Otherwise, if your teeth might be sensitive to pain, etc he recommended using Tom's of Maine brand products since the ingredients are all natural. He emphasized not to use mouthwash with alcohol in it as well.
I thought Dilantin and some of the other second generation AEDs were known to thin out bones to the point of your teeth actually falling out.
Carrie said:

I'm glad you posted this up! I have some news of my own that pertains to this topic.

I have tried both Keppra and Lamictal and both of them caused me to lose a lot of weight as well. I am already little (normal weighing 115-120) but brought me down to 82. I have been drinking Ensure weight gain (yum yum) but it has helped. Alot!
'
I'm on Lamictal still. Up to 90 lbs. Still having seizures. But one of the worst side effect I just discovered a few days ago when I went to the dentist. Last years check up was ok, but over the last year my teeth and gums started to hurt, but I figured it was because I grind my teeth. The dentist looked at my xrays and told me that most of my teeth in the back have rotted away I have a bottom front tooth thats going to fall out. I asked him what I could do to save it, and he basically said that it's demise is inevitable. We couldn't figure out what happened, I brush and floss, so why are my teeth falling out! I left crying. Yesterday my mom said the dentist called her and said that he was looking through my file trying to see if something was going on and realized I'm on Lamictal. He told my mom that Lamictal causes tooth decay because it causes a decrease in saliva. It's pretty depressing when you are under 30 and being told your teeth are falling out.

sorry I took over your post. I just thought people need to know about this! Oh and he said it's anti-convulsants in general!
I just got off 3000 mgs of keppra and am starting Lamictal..coming off keppra has been amazing for me no more rages for no reason or crying for no reason..still taking Dilantin but so far the Lamictal is working well for me

I am taking Keppra and Lamictal 250mg and 400mg daily. Even with the low dose of Keppra i still get keppra rage and i had assumed taking a large dose would make that happen.

 

The combination works well all things being equal though i have no noticed a weight loss.  If anything i eat more so have to be careful.  Weigh about 13.5 stone so average for my height.

Over the years i have tried different meds and all have some hideous side effects.   as Keppra/Topamax are currently the late generation of meds, is there anything else i could try?   Will speak to the doc but need to go along and suggest the meds i want to trial.

 

Thanks

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