Keppra hair loss

Ruth

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Have you told the doctors why you worry?

Did you know that to much stress, like worrying overmuch, can cause seizures?

It is better for your health that you do not worry so much.
 
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Thanks guys,

Hair loss is a side effect of keppra, I'm pretty sure it caused mine as it started four months after taking it, I just hope it didn't permanently mess with my metabolism such that it won't grow back again now that I'm off it. I've discussed this with all my docs and been to see dermatologists, they can't tell me what's caused it but insist it's not the keppra. They also couldn't tell me how they know that as it is a listed side effect. In my view docs just don't have enough knowledge to answer questions about side effects, they just don't have all the answers. I more or less manage my own epilepsy as there are few services in my country, and I've turned towards the naturopatic field for more healthful answers to the problem. Sorry if this seems pessamistic, I'm not really but my hair is important to me, I don't drive, don't have work, my body is all I have. Blessings
 
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tombuchaill i know how you feel on that one the doctor insisted hair loss wasnt a side affect of keppra with me to. my hair is important to me to, but i have 2 take the keppra 1000mg on a morning and 1000mg on a night, did you get itchy whilst on the keppra like your head and eyebrows? did you ever notice your eyelashes coming out and get very dry skin?
 
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tombuchaill i know how you feel on that one the doctor insisted hair loss wasnt a side affect of keppra with me to. my hair is important to me to, but i have 2 take the keppra 1000mg on a morning and 1000mg on a night, did you get itchy whilst on the keppra like your head and eyebrows? did you ever notice your eyelashes coming out and get very dry skin?
Hi crazychick, most of the time I spent on keppra I was on 2750mg daily, my scalp was incredibly itchy for a few days before it first started, I couldn't sleep and probably cut it to bits then. Since then there are times when it gets itchy and the hairloss is then heavier for a few weeks. My body wasn't itchy or my eyebrows, they just come out and come in again but there's less each time. My eyelashes were pretty much gone until about six months ago when the top ones came back, they are longer now then they were, I was on 750mg at that time, the bottom ones are slowly coming back. I didn't have any skin or nail problems, and they were even stronger when I was going through the raft of supplements for my hair, but nothing would stop the hair. The condition of my hair was pretty good, I knew it was weaker then it was but nobody else did, in the last year it has deteriorated, it's thinner and whispy and crinkled if that makes sense. I've been off it now for 3 months, I hear it can take 4-6 months before it starts coming back so I'm hoping thats the case for me, I don't really care anymore when people dismiss it as trivial, I've had seven years of that. I hope you can get yours sorted out too xx
 
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Hi tobuchaill, thank you for replying, i get itchy everywhere i have suffered with dermatitis before so i dont know if this has something to do with that. Doctors and neurologists will not believe me, i have gaps in my left eye off eyelashes, my eyebrows are quite thick but are still coming out, I sometimes dont sleep and im awake for hours on a night. I have seizures when am on meds and off, mainly partials during day when im eating well on a morning, ive noticed its when i eat cheeses, but the big ones are on a night roughly same time every month. Thanks for your help i really appreciate it.
 

JJJ

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Hello there. I had Dengue Fever in November and, whilst I was running a high fever with full body rash, I had a seizure. I was admitted to hospital for a few days and they put me on Keppra. I'm 36 and had never had a seizure prior to this (or since). The doctors said it was probably caused by the fever causing a thickening of the blood and a momentary lack of blood to the brain, but the medicine was a precaution. I've been back for a few tests since which all came back fine but the doctor gave me another four month's worth of Keppra "to be on the safe side". I haven't finished the first lot yet so I have about four and a half month's worth of Keppra to take.

Anyway, the last three weeks I started to lose hair. I have thick hair and always lose quite a bit so at first I thought I was being paranoid, but now it's coming out in handfuls. My hairdresser said she'd never seen anything like it. It's clearly the Keppra and I found this forum by Googling "Keppra hair loss", so my question is this: Is it really worth me taking such a strong drug "just in case" I have epilepsy? I have an appointment for a final EEG in a month's time, but I'm tempted to stop taking the meds before then.

Does anyone have any advice?

Thank you!
 

kirsten

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If you got hives while taking an anticonvulsant, I hope you told your neuro because he's likely to take you off your meds immediately. Sounds like a Stephen Johnsons or similar allergic reaction to me. I had it four years ago, so I can empathise with just how itchy it is. Nothing else comes close. They took me off every last med I was taking, including those not related to my epilepsy, and now they won't risk giving me anything close to what I was taking at the time of my reaction. I was on topomax and tegretol at the time. The trouble with this sort of reaction is that it's more life threatening than seizures are, so they will treat you with what ever is best, regardless of whether it has the potential to cause seizures.

I had to have two tegretol levels done every year.

Back to the hair, though. I lost quite a lot of hair on Keppra, but not so much that I developed bald patches. My hair grew back normally after I stopped, no curls to speak of, although if i remember correctly the Keppra package insert does mention that hair regrowth is often curly.
 

Ruth

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Hello there. I had Dengue Fever in November and, whilst I was running a high fever with full body rash, I had a seizure. I was admitted to hospital for a few days and they put me on Keppra. I'm 36 and had never had a seizure prior to this (or since).

Anyway, the last three weeks I started to lose hair. I have thick hair and always lose quite a bit so at first I thought I was being paranoid, but now it's coming out in handfuls. My hairdresser said she'd never seen anything like it. It's clearly the Keppra and I found this forum by Googling "Keppra hair loss", so my question is this: Is it really worth me taking such a strong drug "just in case" I have epilepsy? I have an appointment for a final EEG in a month's time, but I'm tempted to stop taking the meds before then.

Does anyone have any advice?

Thank you!
Hi JJJ, welcome to the forum. This is the best forum on the Internet. It was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I take Keppra, but I was losing hair before that.

Your hair should not be coming out by handfuls.

Never get off of any medication without it being under a doctor's supervision.
That can cause more problems. Call your doctor and tell him/her what is going on.
 

JJJ

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Thank you for your advice, Ruth. I've managed to get an appointment with him this week now so we'll see what he says.
 
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I can't comment on all of this post but I have been on keppra since may 2010 and I'm a hairdresser, I also have thick hair (like ridiculously) I do lose quite a bit in general as hair grow hair fall out etc, before you change your epilepsy meds I would speak to your neurologist about some vitamins of some sort, I took multi vits and extra vit D for a short while and it slowed the hair growth rate right down, it may be that you body is putting so much energy into using and getting used to the medication that this may happen for a short while? Iv done medication training but I am definately no doctor so speak to them :) best of luck x
 

JJJ

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Update: I met with my neurologist yesterday and he said it was fine for me to come off Keppra, as long as I was willing to take the slight risk I might have another seizure. He doesn't think it's likely and expects my EEG to come back clear in which case I will be discharged (fingers crossed!).

Some people on this thread said they had been told by their doctor that Keppra doesn't cause hair loss. On the list of side effects that he had it quite clearly stated Alopecia but it was in the 'less than 1% of people' section. I suspect a lot of doctors just look at the main symptoms or an overview. I just wanted to clarify that it DOES cause hair loss in some people, it's just not common. Obviously, the hair loss could be caused by something else, I will see if mine stops now I've come off the drug.

Thank you to Ruth and Lucy for their advice.
 

Ruth

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Hi JJJ,

Take it easy for a few days to see how it goes.
I was put on a medicine and I was told it had no side effects. My legs started swelling up. I checked on the Internet and sure enough it is a rare side effect. I printed it out and took all the list of side effects and gave them to her.

You are right, the doctors only look at the main symptoms.

Let us know how you do now that you are off of Keppra.
 

JJJ

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Hi, just thought I'd give an update. The hair loss stopped about a week and a half after I came off Keppra, so it was definitely that causing it. Thankfully my tests are clear and I don't need to carry on with any medication.

Thank you to everyone who gave me advice and support!
 

Penny

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I go to the DR. Tues. and I was thinking Keppra might might be what he puts me on in place of Topamax. I am still on it but had to go down to 200mgs a day from 400 mgs a day because I was sleeping most of 24hrs a day. I'm doing fine on trileptal and lamictal and my levels are good but I'm having seizures again.

I don't want to loose my hair though. I am on B12 shots monthly. Thyroid meds (mines removed, had cancer), and several other things I heard talked about that had to have to keep things steady, already. I just so want to want to be seizure free. Like all of us do! I just take so many meds with the bipolar, stroke and all. I am sick of it all ! OH well, I'm alive, Right! :)
 
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