A question about Keppra and Lamictal

[bnvc1912]

Hey everyone.

I just joined today. I'm 18 years old and I always didn't want to talk about my condition with anyone. But, I do have a question that I can use input on.

I have had epilepsy for 8 years now. Diagnosed 10 days before I turned 11...grrr. Anyway.

When I first got treated for it, I was prescribed an orange pill, that I can't remember. Within the first year of using it, I had hair loss, ridiculous stomach aches, headaches so we got off that one quickly.

Then I was moved to Keppra. 250mg in the morning and 250mg at night. Worked wonderfully for 6 years. Except with the 2 convulsions.

2 years ago, starting 11th grade, I decided with my neurologist that it was finally time to cut down my keppra because I was doing well. So, we cut the 250mg tablet in half for the morning and yet have a full one at night. So, fast forward to September, 1st week of school, on a thursday, I can really feel a seizure coming on. not fun. I woke up in the hospital, but I think we've all been there.

Since then, my body had been torturing me. Every week practically, I felt like I was on the brink of a seizure. I went pale, blood pressure dropped, pupils dilated, too tired to talk, just totally tired in general. This lasted for like, 9 months. And I'm guessing with the stress, hair loss came about. Sure, I was told it's stress, it'll grow back within a year. I wasn't worried.

Did I mention I have like, grain of sand thin hair and not a whole lot of it?

Eventually, this hairloss became more apparent. And I've noticed that since I got diagonsed, my hair did fall out. A year went by and NOTHING grew back. My mother, of course, bought be rogaine. Ya I used it, and I've been on and off, but I don't see results. That's when I was sent to another neurologist. He gave me Lamitcal w/ my keppra. 3 25mgs in the morning w/ keppra and 3 25mgs at night w/ the keppra. working awesome. just...

hair is still falling out. since, at one point or another, we become our own worst enemy, i convinced myself that i had a certain bald spot...and my mother, didn't really help. until i look at pictures from way back when and I noticed that this stupid little 'bald spot' that i was so concerned about, has been there for LONG time. so...

i go to my neurologist and ask, can you PLEASE check is keppra or this new pill has anything to do with hair loss? by golly, yes keppra does!


i talked about the risk w/ him. should i choose to cut keppra out, the odds of me having a convulsion are still against me. and i'm going into 2nd yr college and i'm not for touching my health yet.

it's not fun having a mom constantly looking at the hairline and the whole scalp and saying, "oh, you're loosing all of it". i love my mom, she's been so good to me. granted, yes I am thinning, but the rogaine isn't doing so much. it might be holding what i still having but there haven't been really any results yet. i'm 18, and an adult in Canada to make my own decision, but...



QUESTION:
finally

should i lower my meds for the sake of my hair? i have the THINNEST hair in the family. and i hate that i can't tie my hair up w/o my mother just looking at it and shaking her head slowly.

 

[epileric]

Welcome to the site.

It's actually up to you but I personally wouldn't sacrifice my neural health for vanity.... but that's me. I wouldn't lower my meds without discussing it with my neurologist either. I've had a couple of convulsions in awkward places & I don't want to increase the possibility of that happening again.

Do Depakene, Depakote or valproic acid jog your memory of the name of the first drug you were given?

 

[bnvc1912]

It's actually up to you but I personally wouldn't sacrifice my neural health for vanity.... but that's me. I wouldn't lower my meds without discussing it with my neurologist either. I've had a couple of convulsions in awkward places & I don't want to increase the possibility of that happening again.

Do Depakene, Depakote or valproic acid jog your memory of the name of the first drug you were given?

VALPROIC ACID!!! nice. thank you!!!!!!!

i don't want to either, but...how can i stop myself or my mother, more importantly, to stop looking at it? i mean, my neurologist said it's my decision. i tried to taalk to him if there are any other options. and he said my decision. so i wanna keep the hair i have and grow more...no lose what i have. ya know?

 

[Westwind]

The hair loss is unpleasant to say the least. When I was put on Dilantin and Tegretol, I lost 2/3rds of my hair in a week. My head was so cold. Had to put a pillow on top of my head to keep it warm enough to get to sleep. *shivers at the memory*

Later I was on Topomax, and had this annoying tingling sensation all over my head. A few weeks later I noticed my hair was growing back. Too bad the other side-effects were so nasty.

Then was on Depakote/Valporic acid for 15 years. (your side effect description sounds much like mine) That kept my hair thin, and put about 50 lbs on me. Age has been doing the rest. Heh.

I actually had some hair return again when I was taken off that, and placed on Keppra. Not much, but when there's not much to start with - you notice.

Occasionally I think that I should just shave my head bald. But that just sounds like more work to keep it shaved. *chuckles*

Unfortunately with some of the AED's, hair loss is something you have to deal with. But is having more frequent and intense seizures worth keeping your hair over ? What your doctor said is correct - it is your decision, and it's good that he respects that. That's a personal choice we each have to make for ourselves. For me, I've never had complete control, but having some moderation is better than the alternative to me. So I tolerate the side effects as best as I can, and if that means I feel a constant draft on my head, so be it. But we don't all feel the effect to the same degree or in the same way. We each have different tolerance levels.

 

[Nakamova]

I had hair loss from Lamictal, so that could also be the culprit unfortunately. It's a tough question, trying to decide if side effects are worse than the seizures.

Ideally, you could lower dosages or switch meds, but if that's not an option at this point, there are a few things to try: #1 is to see if you can identify your seizure triggers and avoid them. Keeping as seizure diary will help with this. #2 is to look into changing your diet/nutrition balance -- there are a number of diets that have helped folks here to cut down on seizures. #3 is neurofeedback, where you re-train the brain to avoid the bad brainwaves. The goal is to raise the seizure threshold, and hopefully be able to lower meds.

Best,
Nakamova

 

[henhouse]

Curly

Basic white guy, age 54. Tegretol, dilantin, lamictal, keppra and depakote. Beginning at age 43. Basically in that order. Now on depakote and keppra. Not aware of any hair loss. I always had some curl/wave to my hair, but it has become ridiculous, obviously with the current meds regimen. I got it cut last week, essentially a new style for me, so it is going to be tight wash and wear curls. I used to work with a chinese friend, who would show up at the office shaking his hair dry. I thought that was pretty cool and I am enjoying it so far.

 

[Zoofemme]

What you'll probably find is that what makes one person's hair fall out causes another person's hair to grow, lol. I had hair loss with lamictal for 7 years...I still have some now but apparently the topomax (which seems to cause many to lose hair) is canceling it out to an extent...either that or its the John Frieda Root Awakening Breakage Control Shampoo/Conditioner that I use, lol.

Like other's have said, its a personal decision regarding vanity vs. neural health. Yo have to decide what is right for YOU, not for anyone else...including family and friends. There are alternatives to thinning hair like wigs and extensions too

 

[bnvc1912]

The hair loss is unpleasant to say the least. When I was put on Dilantin and Tegretol, I lost 2/3rds of my hair in a week. My head was so cold. Had to put a pillow on top of my head to keep it warm enough to get to sleep. *shivers at the memory*

Later I was on Topomax, and had this annoying tingling sensation all over my head. A few weeks later I noticed my hair was growing back. Too bad the other side-effects were so nasty.

Then was on Depakote/Valporic acid for 15 years. (your side effect description sounds much like mine) That kept my hair thin, and put about 50 lbs on me. Age has been doing the rest. Heh.

I actually had some hair return again when I was taken off that, and placed on Keppra. Not much, but when there's not much to start with - you notice.

Occasionally I think that I should just shave my head bald. But that just sounds like more work to keep it shaved. *chuckles*

Unfortunately with some of the AED's, hair loss is something you have to deal with. But is having more frequent and intense seizures worth keeping your hair over ? What your doctor said is correct - it is your decision, and it's good that he respects that. That's a personal choice we each have to make for ourselves. For me, I've never had complete control, but having some moderation is better than the alternative to me. So I tolerate the side effects as best as I can, and if that means I feel a constant draft on my head, so be it. But we don't all feel the effect to the same degree or in the same way. We each have different tolerance levels.

i was actually thinking of shaving my head too! hahaha. i was thinking of getting the wigs or extensions and what not...but...again, my mother....not that she wouldn't agree...she just wouldn't like me covering it it. i mean, my dad is balding, my brother, my sister is cause of her eating disorder(she's gotten a lot better though, its still falling out sadly) and now me? my mom is a little frustrated and i get it.

its not worth it if i've been good for 3 years...i'd rather wait it out until 10 years if i have to.

should i keep using the rogaine? onder:

and thank you all for your input. it helps

 

[dfwtexas]

I have been on Keppra a little over 2 years. I have not had hair loss on Keppra, but have met several people on here that have had the problem. My neuro switched me from Keppra to Keppra XR and after a few weeks on it, I noticed handfuls of hair whenever I washed my hair. My neuro wasn't sure it was the Keppra XR, he said that it was strange that regular Keppra didn't cause hair loss, but the XR did...so he did a ton of blood test to make sure there wasn't something else going on. Everything came back ok, he switched me back to regular Keppra and no more hair loss.
Having E is a lot to deal with....we shouldn't have to deal with our hair falling out too. Talk to your doctor and see if there are other drugs available to you.

 

[Crystal11]

I am taking Keppra XR 3000mg a day with 400mg of Lamictal. It seems to be working unless I don't eat well, don't sleep well and other things.
I have complex partial seizures and usually have a few a month, sometimes better with one or two.
Going to neuro soon.

As for your question- it would be important to tell neuro you're interested in trying a new medication that doesn't have hair loss in the list of side-effects. you might ask for a new in general that would work for GMs and not cause such frequent reactions.

Take care,
Crystal and her guide Umbro

 

[Paul66]

you're actually taking small doses of both meds. I take the same combo, but with 1000mg of keppra and 400 lamictal. when I first started taking the lamictal I became susceptible to any skin irritation on the planet. I hated the stuff. My body adjusted and the combo of the two meds works great for me.
as for the hair...that sucks. Maybe a soul patch or something unique. JK

 

[Gem2783]

Hi babe, I wouldn't purely cos I feel like that at times it runs through your head should i do this and maybe it'll get better. But then I think what its like when i have a seizure and how down I get I don't want to feel like that again its makes me so depressed. I wouldn't risk my health. Its hard saying it and then u think what about my hair i have a similar thing because my hair dye doesn't last and i hate it x I look at others and think u are so lucky x

 

[mortimer]

Hi isnt it horrid! mine is coming out like crazy I did hear shampoos and conditiners also cause hair loss. I take lamictal that causes hair loss but have been on it for ages. I had been using a type of shampoo that i have since found out causes loss I stopped using it but my hair is still falling out my lamictal isnt working very well and I think i weill have to change or have a add on, kepra has been mentioned! bye bye hair save me loads of time though.