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Hair Loss and AEDs!

I am trying to find a different seizure medication with fewer side effects. I can't take Dilantin or Keppra, for some reason my body won't  tolerate them. I am on Topamax 100mg daily (50/50). I have lost lots of hair.  ...Enough to make 2 wigs. I am lucky that I had extremely thick hair a year ago. 

But enough is enough...is ANYONE out there familiar with a medication that DOESN'T cause hair loss?

Thanks!

-Sue

Comments

Re: Hair Loss and AEDs!

Submitted by seattlecarol on Sat, 2009-09-12 - 22:31

I lost a lot of hair on Topomax too. I also had other side effects that after a year I wasn't going to get used to them. On the flipside it did work well for me.

I've since quit the Topomax and now take Lamictal. It is also successful in controlling my complex-partial seziures. 

I lost a lot of hair on Topomax too. I also had other side effects that after a year I wasn't going to get used to them. On the flipside it did work well for me.

I've since quit the Topomax and now take Lamictal. It is also successful in controlling my complex-partial seziures. 

Re: Hair Loss and AEDs!

Submitted by suebee27 on Sun, 2009-09-13 - 10:03

Thanks for your response!

After you stopped the Topomax and started to take Lamictal, did your hair start to come back?  Were the other side effects gone too? (I am a complete air-head...I can't finish sentences...ugh...) 

-Sue

Thanks for your response!

After you stopped the Topomax and started to take Lamictal, did your hair start to come back?  Were the other side effects gone too? (I am a complete air-head...I can't finish sentences...ugh...) 

-Sue

Re: Hair Loss and AEDs!

Submitted by Seruzies on Wed, 2009-09-16 - 01:34
Don't plan on hair loss to stop with Lamictal, my hair has been falling out on Lamictal ever since I started taking it. Hair loss is one of the listed side effects of Lamictal, search around for Lamictal side effects, I'm sure you'll find out more. I want to stop taking it, and that is one of the main reasons. Another main reason is that my seizures are not as controlled as they were when was taking Dilantin. My family likes to take control of my life because I have un-controlled seizures, but my seizures are not as controlled on Lamictal as they were on Dilantin. The next time I see a Neuro, there's going to be a fight about meds. My Father usually goes into the office with me when I have an appointment because my memory is so bad on Lamictal, but the next one is going to be mine, I'm going to take control of the appointment and tell the Dr of the side effects of Lamictal and why I want to get off of it and back on Dilantin. I'm sorry if I didn't answer your question about Topomax, but I think I needed to explain myself to myself about the reasons why I want to stop taking Lamictal.      

Re: Hair Loss and AEDs!

Submitted by suebee27 on Wed, 2009-09-16 - 13:17

I loved Dilantin,  but I did still have seizures.

My problem with Dilantin started when I was on the generic and the pharmacist was giving me different brands. I had no idea that there was a difference, but evidently our bodies do! 

If you are switched to  Dilantin, be sure that you are off the other. it will still be in your bloodstream for a couple of days. You DONT want to take both at the same time unless you are in the hospital. The reason why I say this: as per the warning from Lamictal

-------------------------------DRUG INTERACTIONS------------------------
• Valproate increases lamotrigine concentrations more than 2-fold. (7, 12.3)
• Carbamazepine, phenytoin, phenobarbital, and primidone decrease lamotrigine concentrations by approximately 40%. (7, 12.3)

Good luck to you!

I think I am sticking with Topamax.  These stories are scaring me! At least I can deal with being a bit flighty...and Im not completely bald, yet...

I loved Dilantin,  but I did still have seizures.

My problem with Dilantin started when I was on the generic and the pharmacist was giving me different brands. I had no idea that there was a difference, but evidently our bodies do! 

If you are switched to  Dilantin, be sure that you are off the other. it will still be in your bloodstream for a couple of days. You DONT want to take both at the same time unless you are in the hospital. The reason why I say this: as per the warning from Lamictal

-------------------------------DRUG INTERACTIONS------------------------
• Valproate increases lamotrigine concentrations more than 2-fold. (7, 12.3)
• Carbamazepine, phenytoin, phenobarbital, and primidone decrease lamotrigine concentrations by approximately 40%. (7, 12.3)

Good luck to you!

I think I am sticking with Topamax.  These stories are scaring me! At least I can deal with being a bit flighty...and Im not completely bald, yet...

Re: Hair Loss and AEDs!

Submitted by catinpas on Fri, 2010-01-15 - 18:02

I am on Topamax, Lamictal, and Phenobarbital.  When I increased my Topamax dose I started having hair loss.  When I talked to my neuro she told me to make sure I was taking my supplements EVERYDAY, because they will help...and they did!  I still have a little hair loss, but it is not like before.  I don't know which of my supplements helped me, but I can tell you which ones I am on:  multivitamin, Ca/Mg/Zn, Folic Acid, vitamin D, fish oil. 

 Good Luck!

I am on Topamax, Lamictal, and Phenobarbital.  When I increased my Topamax dose I started having hair loss.  When I talked to my neuro she told me to make sure I was taking my supplements EVERYDAY, because they will help...and they did!  I still have a little hair loss, but it is not like before.  I don't know which of my supplements helped me, but I can tell you which ones I am on:  multivitamin, Ca/Mg/Zn, Folic Acid, vitamin D, fish oil. 

 Good Luck!

Re: Hair Loss and AEDs!

Submitted by lyneeeh on Tue, 2010-01-19 - 22:15
My ponytail becomes thiner and thiner every day :( Every morning I look and the drain and see my once beautiful blond locks washing away. Luckily it was pretty thick to begin with so there isn't a certain spot I can find that's bald. (YET) I've started taking some multi Vitamins. I already take Magnesium. Here's hoping it works. E has taken My Independence (Drivers Licence) my money (Medication, Dr's bills, Income) But come on not my hair! Sorry to sound Vain Topomax is the one I blame 200mg twice a day. I also take Frisium But I don't think thats it. I think it's time to start saving it all to make a wig LOL :) Or is it time to join the likes of Demi Moore,Sigourney Weaver or Natalie Portman she still looked pretty good bald.

Re: Hair Loss and AEDs!

Submitted by catinpas on Wed, 2010-01-20 - 01:04

After thinking about it, I remember my neuro telling me to remember to take my Ca/Mg/Zn, multivitamin, and folic acid everyday after I told her about my hair loss.  

Good Luck!

Cathy

After thinking about it, I remember my neuro telling me to remember to take my Ca/Mg/Zn, multivitamin, and folic acid everyday after I told her about my hair loss.  

Good Luck!

Cathy

Re: Hair Loss and AEDs!

Submitted by suebee27 on Thu, 2010-01-21 - 08:41
Again thank you all for the great comments!! this board is great!
-- Sue
Again thank you all for the great comments!! this board is great!
-- Sue

Re: Hair Loss and AEDs!

Submitted by Lughnasagh on Sat, 2010-07-31 - 12:12

Hi I'm new here, I'm from Ireland, I'm 37 now and have had epilepsy since I was 15 after brain surgery for and AVM.  I take 600mg Tegretol slow release twice daily and 1500 Keppra in the morning and 1250 in the evening.  I was put on Keppra in march 2006 after I became immune to the neurontin I was on.  A few months later my hair started falling out like rain and it hasen't stopped since.  A few months ago my body hair also started to fall out and now my eyelashes and eyebrows are nearly gone.  I was lucky that I had very thick hair to begin with but now it all looks so thin that I feel like I look ill when I look in the mirror.  Has anyone else lost body hair with their meds?

 I went to my doctor and neurologist about this and when it first started happening four years ago and was told the Keppra wasn't the problem even though my bloods came back normal and the dermatologist said it wasn't a skin problem.  I've gone back to the doctor about this a few weeks ago, had another battery of blood tests which all came back normal and have another appointment with a dermatologist, I won't see him til January though because the wating list is so long on public health.  I am still waiting on an appointment to see my neurologist even though it was June when it was asked for.  Generally I see him once a year as it is just how stretched the health system is here, I don't know what its like in the U.S. 

I noticed a small goiter developed around the time my body hair started falling out and asked my doctor if these were related and she said no.  My TSH is 1.69 and the normal range is 0.27-4.2 so I suppose its a bit low but would it be enough to cause this, I don't know and I've lost faith in my doctors as it seems they tell me what they want to tell me.  I'm sure everyone here knows their own body and when its trying to tell them something.  It's very frustrating not to be listened to and I'm not a shrinking violet.  I keep questioning my doctors and have on more then one occasion been shown the door!  I managed to persuade my general doctor to look at the medication if the dermatology results are clear - after four years trying.

I have tiredness and weight loss and tingling on my skin with Keppra also but it does control the attacks relatively well, I'm on them for complex partial seizures.  I'm not fully controlled and have never had a licence but I did notice with the keppra improvement in cognitive abilities which was a great relief.  If it wasn't for the hair I would stay on it because there seems to be risks with all of them. Maybe I sound vain but I'm devestated at this point and have become withdrawn which isn't good. I've stopped doing a lot of things over the years because of epilepsy, I was an active outdoor person but in recent years excersice can bring on attacks so I have to be careful.

This has turned into a bit of a rant but I suppose I've nowhere else to go with it, its great to hear all the knowledge and courage people on this site have!  Thanks, Bronagh

Hi I'm new here, I'm from Ireland, I'm 37 now and have had epilepsy since I was 15 after brain surgery for and AVM.  I take 600mg Tegretol slow release twice daily and 1500 Keppra in the morning and 1250 in the evening.  I was put on Keppra in march 2006 after I became immune to the neurontin I was on.  A few months later my hair started falling out like rain and it hasen't stopped since.  A few months ago my body hair also started to fall out and now my eyelashes and eyebrows are nearly gone.  I was lucky that I had very thick hair to begin with but now it all looks so thin that I feel like I look ill when I look in the mirror.  Has anyone else lost body hair with their meds?

 I went to my doctor and neurologist about this and when it first started happening four years ago and was told the Keppra wasn't the problem even though my bloods came back normal and the dermatologist said it wasn't a skin problem.  I've gone back to the doctor about this a few weeks ago, had another battery of blood tests which all came back normal and have another appointment with a dermatologist, I won't see him til January though because the wating list is so long on public health.  I am still waiting on an appointment to see my neurologist even though it was June when it was asked for.  Generally I see him once a year as it is just how stretched the health system is here, I don't know what its like in the U.S. 

I noticed a small goiter developed around the time my body hair started falling out and asked my doctor if these were related and she said no.  My TSH is 1.69 and the normal range is 0.27-4.2 so I suppose its a bit low but would it be enough to cause this, I don't know and I've lost faith in my doctors as it seems they tell me what they want to tell me.  I'm sure everyone here knows their own body and when its trying to tell them something.  It's very frustrating not to be listened to and I'm not a shrinking violet.  I keep questioning my doctors and have on more then one occasion been shown the door!  I managed to persuade my general doctor to look at the medication if the dermatology results are clear - after four years trying.

I have tiredness and weight loss and tingling on my skin with Keppra also but it does control the attacks relatively well, I'm on them for complex partial seizures.  I'm not fully controlled and have never had a licence but I did notice with the keppra improvement in cognitive abilities which was a great relief.  If it wasn't for the hair I would stay on it because there seems to be risks with all of them. Maybe I sound vain but I'm devestated at this point and have become withdrawn which isn't good. I've stopped doing a lot of things over the years because of epilepsy, I was an active outdoor person but in recent years excersice can bring on attacks so I have to be careful.

This has turned into a bit of a rant but I suppose I've nowhere else to go with it, its great to hear all the knowledge and courage people on this site have!  Thanks, Bronagh

Re: Hair Loss and AEDs!

Submitted by suebee27 on Mon, 2010-08-02 - 11:49
wow... that was a rant, but I am sure it felt great!!! :) Keppra caused me to swell up so badly. I remained on it for one year. I am convinced that seizure meds can mess with your body and mimic problems with your Endocrine System. Every time I have to change to a new medication it is the same story: Swelling, rashes, seizures, etc. Sometimes these are serious adjustments and I end up in the hospital because I was allergic to the med. I can't wait till menopause. I am hoping that perhaps I can cut out some of this medication. -SueB

Re: Hair Loss and AEDs!

Submitted by George R on Mon, 2010-08-02 - 12:21

Shame, isn't it, that more neurologists do not tell us of possible side effects of drugs that they're sure "will be just the one!" Right? But then, just as the same fine food will settle perfectly with one eater, it might make his or her neighbor violently sick! I adore Keppra, but it did take me a couple of years to adjust to it--physically and emotionally. It makes me ultra-bitchy at times. Gave me headaches in the beginning. Caused me to "zzzzzzz" (sleep) all day. But now--10 years later--I am grateful that Keppra was invented. I take 2000mg of it daily, along with 1000mg of Depakote (both in generic, affordable forms). And my once-dramatic, three-in-a-row seizures are far less intense, and I'll get only one per month. During it, I'm a bit wobbly, but if seated, find it's over in under one minute. No, I'm sticking to Keppra (or "Keppy Kutie" as I call it). And what you say about menopause just seems to have worked for this man. And yes, men do have their versions of this stage of the human life. My seizures are less, just like my sex life! Now go have a day full of smiles. Remember, there are 50-million folks in this world with "E".

Shame, isn't it, that more neurologists do not tell us of possible side effects of drugs that they're sure "will be just the one!" Right? But then, just as the same fine food will settle perfectly with one eater, it might make his or her neighbor violently sick! I adore Keppra, but it did take me a couple of years to adjust to it--physically and emotionally. It makes me ultra-bitchy at times. Gave me headaches in the beginning. Caused me to "zzzzzzz" (sleep) all day. But now--10 years later--I am grateful that Keppra was invented. I take 2000mg of it daily, along with 1000mg of Depakote (both in generic, affordable forms). And my once-dramatic, three-in-a-row seizures are far less intense, and I'll get only one per month. During it, I'm a bit wobbly, but if seated, find it's over in under one minute. No, I'm sticking to Keppra (or "Keppy Kutie" as I call it). And what you say about menopause just seems to have worked for this man. And yes, men do have their versions of this stage of the human life. My seizures are less, just like my sex life! Now go have a day full of smiles. Remember, there are 50-million folks in this world with "E".

Re: Hair Loss and AEDs!

Submitted by darthvader on Fri, 2011-10-07 - 02:59

 Hi Sue,

 I'm new to this website I just like you I'm searching for the light, I was put on Topamax about 4 years ago (400mg) daily with Dilantin ( 200mg) daily Lexapro (20mg) I am going through the same problem as you, before Topamax came along live was good. I think there are some very bad medications for treating epilepsy out there on the market and in need of review very badly, unfortunately I can't decrease my dosage of Topamax, It's not easy tortured in your mind.

 Hi Sue,

 I'm new to this website I just like you I'm searching for the light, I was put on Topamax about 4 years ago (400mg) daily with Dilantin ( 200mg) daily Lexapro (20mg) I am going through the same problem as you, before Topamax came along live was good. I think there are some very bad medications for treating epilepsy out there on the market and in need of review very badly, unfortunately I can't decrease my dosage of Topamax, It's not easy tortured in your mind.

Re: Hair Loss and AEDs!

Submitted by suebee27 on Thu, 2010-01-21 - 08:35

Hello everyone!

I had to up my Topomax to 150 for a few days. I got really dizzy so my doctor decided it was time to just change my seizure meds.

I am now back to 100mg Topomax and I started to take 50mg Lamictal. Next week it will be taking Lamictal 75-100mg, (with Topomax) then increasing until I get to whatever I am supposed to reach...? (not sure of that yet...)

The great news is, my hair stopped falling out two 1/2 weeks ago and I have ton of short hair of different lengths, probably from all the vitamins and supplements that I've been taking! .....And I have been drinking 6-8 oz of chocolate soy milk each day! lol

Boitin 2500-5000,  GNC Prenatal vitamins,   MSM 1000 

Thank you all so much for the replies!

-Sue

Hello everyone!

I had to up my Topomax to 150 for a few days. I got really dizzy so my doctor decided it was time to just change my seizure meds.

I am now back to 100mg Topomax and I started to take 50mg Lamictal. Next week it will be taking Lamictal 75-100mg, (with Topomax) then increasing until I get to whatever I am supposed to reach...? (not sure of that yet...)

The great news is, my hair stopped falling out two 1/2 weeks ago and I have ton of short hair of different lengths, probably from all the vitamins and supplements that I've been taking! .....And I have been drinking 6-8 oz of chocolate soy milk each day! lol

Boitin 2500-5000,  GNC Prenatal vitamins,   MSM 1000 

Thank you all so much for the replies!

-Sue

Re: Hair Loss and AEDs!

Submitted by zepled on Wed, 2009-09-16 - 09:36

Hi Sue,

 

  The airhead thing? I know all about that. I lose my train of thought in mid-sentence, I get stuck on a word I'm searching for, but of course, it is nowhere to be found. And then I can't even come up with something, ANYTHING, to go along with what I was saying to try and make my point more clear. As far as the hair loss? I buzz mine once a week, so I didn't notice anything like that. My memory was much better on Dilantin, but Dilantin doesn't do much of anything for me anymore. I'm on keppra and tegretol. What the Dilantin wasn't good for, was my auras, as well, after time, my seizures. If this doesn't help or means absolutely nothing to you, now you can see why I consider myself an airhead.

Hi Sue,

 

  The airhead thing? I know all about that. I lose my train of thought in mid-sentence, I get stuck on a word I'm searching for, but of course, it is nowhere to be found. And then I can't even come up with something, ANYTHING, to go along with what I was saying to try and make my point more clear. As far as the hair loss? I buzz mine once a week, so I didn't notice anything like that. My memory was much better on Dilantin, but Dilantin doesn't do much of anything for me anymore. I'm on keppra and tegretol. What the Dilantin wasn't good for, was my auras, as well, after time, my seizures. If this doesn't help or means absolutely nothing to you, now you can see why I consider myself an airhead.

Re: Hair Loss and AEDs!

Submitted by suebee27 on Wed, 2010-01-20 - 18:32

Hello everyone!

I had to up my Topomax to 150 for a few days. I got really dizzy so my doctor decided it was time to just change my seizure meds.

I am now back to 100mg Topomax and I started to take 50mg Lamictal. Next week it will be taking Lamictal 75-100mg, (with Topomax) then increasing until I get to whatever I am supposed to reach...? (not sure of that yet...)

The great news is, my hair stopped falling out two 1/2 weeks ago and I have ton of short hair of different lengths, probably from all the vitamins and supplements that I've been taking! .....And I have been drinking 6-8 oz of chocolate soy milk each day! lol

Boitin 2500-5000,  GNC Prenatal vitamins,   MSM 1000 

Thank you all so much for the replies!

-Sue

Hello everyone!

I had to up my Topomax to 150 for a few days. I got really dizzy so my doctor decided it was time to just change my seizure meds.

I am now back to 100mg Topomax and I started to take 50mg Lamictal. Next week it will be taking Lamictal 75-100mg, (with Topomax) then increasing until I get to whatever I am supposed to reach...? (not sure of that yet...)

The great news is, my hair stopped falling out two 1/2 weeks ago and I have ton of short hair of different lengths, probably from all the vitamins and supplements that I've been taking! .....And I have been drinking 6-8 oz of chocolate soy milk each day! lol

Boitin 2500-5000,  GNC Prenatal vitamins,   MSM 1000 

Thank you all so much for the replies!

-Sue

Re: Hair Loss and AEDs!

Submitted by Seruzies on Sun, 2009-09-13 - 02:33
I'm taking Lamictal and losing my hair, I have taken Dilantin, Depakote, and Zonegran and never had hairloss problems with those. I want to get off of Lamictal as my seizures are not well controlled on it. Besides that, I'M LOSING MY HAIR!!!

Re: Hair Loss and AEDs!

Submitted by Allyson L on Fri, 2010-01-15 - 19:29

 

Have your doctor take you off- and try depakote. My hair not only became fuller, it also started to curl! I'm 54 and have always had pretty straight hair! It took a year for me to get used to the curls!! Allyson

 

Have your doctor take you off- and try depakote. My hair not only became fuller, it also started to curl! I'm 54 and have always had pretty straight hair! It took a year for me to get used to the curls!! Allyson

Re: Hair Loss and AEDs!

Submitted by tara michelucci on Wed, 2010-03-24 - 11:48
It doesn't matter which one you take - they all have soemthing in em that makes your hair come out by the brushfull every morning. Depakote was for me the worst. On Zonegran now, which isn't that bad compared to the others. It just depends on your hair type and which drug I think. I can tell you this ladies, we all know that post-partem all that lush hair you grew will fall out - it's like twenty times worse with the AEDs too. I thought it would never end! Maybe taking a birth control like Depo Provera (progesterone-only) would inhibit seizures for a lot of us gals, AND help with the hair loss the way that pregnancy does?

Re: Hair Loss and AEDs!

Submitted by catinpas on Sat, 2010-07-03 - 20:36
I went on depo provera.  It didn't work for me, but I am only one person.  Do your research before starting it.  I hope it works for you. 

Re: Hair Loss and AEDs!

Submitted by George R on Fri, 2010-01-15 - 22:38

VERY COMMON

Yes, if you'll speak with others (men and women) who use anti-seizure drugs, you'll find that one of the biggest side effects is the loss of hair. I've had epilepsy for 40 years, and while I should accept going bald at middle age, mine started far earlier than that. I thought Tegretol and Dilantin were rough ones, but then on came Keppra. And while I find that medicine the best of all the 12 I've tried, I am now virtually without hair. Fortunately the short-cut look is very big right now for we men. I just keep the remaining strands ultra-short, and have learned to live with this look. But so far a getting off your current pills and going onto others? Don't waste your time! All have some negative factor.

VERY COMMON

Yes, if you'll speak with others (men and women) who use anti-seizure drugs, you'll find that one of the biggest side effects is the loss of hair. I've had epilepsy for 40 years, and while I should accept going bald at middle age, mine started far earlier than that. I thought Tegretol and Dilantin were rough ones, but then on came Keppra. And while I find that medicine the best of all the 12 I've tried, I am now virtually without hair. Fortunately the short-cut look is very big right now for we men. I just keep the remaining strands ultra-short, and have learned to live with this look. But so far a getting off your current pills and going onto others? Don't waste your time! All have some negative factor.

Re: Hair Loss and AEDs!

Submitted by tonialpha on Sat, 2010-01-16 - 10:01

Hi

Just like George and the others it is very common.  I have been on all the medications.  The doctors would give different suggestions.  The other problem was my nails were peeling away too.  A prescription of Folic Acid was given.  I periodically cut my hair but my nails still need a little help so my Internist told me to add Biotin 5000 mcg once a day.  That is good for skin, hair and nails!  

I take Vimpat 500 mg., Keppra 1500 mg, Zonegran 200 mg.

Hi

Just like George and the others it is very common.  I have been on all the medications.  The doctors would give different suggestions.  The other problem was my nails were peeling away too.  A prescription of Folic Acid was given.  I periodically cut my hair but my nails still need a little help so my Internist told me to add Biotin 5000 mcg once a day.  That is good for skin, hair and nails!  

I take Vimpat 500 mg., Keppra 1500 mg, Zonegran 200 mg.

Re: Hair Loss and AEDs!

Submitted by akewbc on Sat, 2010-03-20 - 15:40

wow you are one "drug-loaded" lady. :)  I've been on Keppra and Zonegran and Lamictal and blah blah- (all individually) went up to 800 Lamictal- started developing Stephen Johnson syndrome--have been backing down to where I am currently 50 mg daily--and increased the vimpat to 350 a day.  Vimpat- definitely causing vision issues, balance and talk about hyper-wow-

I'm headed to Mayo next week to determine if I am candidate for surgery-- which I hope I am--my biggest issue is no driving--no independence and where I live no access to public transportation. And I will do whatever I can to go through six months without a seizure to get my license back-which right now looks like surgery

 But this issue of hair loss-- what can I say--geez--Until today I never ever put this side-effect of AED's and hair loss together--and I have  definitely been through it--mostly with increased doses of lamictal but--I had super hair loss- and also curly curly--which was on top of already naturally curly hair-- I looked like a lot of folks do when they have lost it all and it started growing back in- 

But now I know why I never put it together-- cause I am a 1 and 1/2 year breast cancer survivor. After radiation taking femara-estrogen replacement- and zometa infusions--which I thought were causing the hair loss- not the AED's and my oncologist  said- hey you shouldn't be losing hair-- well duh--

and shock of all shocks-- my neurologist never said a thing about it being a side-effect- I didn't see it on the side effect list of the lamictal prescrip either

so basically, now, because I have heard of so many others haivng  hair loss -- I will include it as a side effect (along with so many others) of these dam AED's. I would have never thought of.

It is just one more reminder that this is one of the many awesome reasons and advantages of this forum--  

wow you are one "drug-loaded" lady. :)  I've been on Keppra and Zonegran and Lamictal and blah blah- (all individually) went up to 800 Lamictal- started developing Stephen Johnson syndrome--have been backing down to where I am currently 50 mg daily--and increased the vimpat to 350 a day.  Vimpat- definitely causing vision issues, balance and talk about hyper-wow-

I'm headed to Mayo next week to determine if I am candidate for surgery-- which I hope I am--my biggest issue is no driving--no independence and where I live no access to public transportation. And I will do whatever I can to go through six months without a seizure to get my license back-which right now looks like surgery

 But this issue of hair loss-- what can I say--geez--Until today I never ever put this side-effect of AED's and hair loss together--and I have  definitely been through it--mostly with increased doses of lamictal but--I had super hair loss- and also curly curly--which was on top of already naturally curly hair-- I looked like a lot of folks do when they have lost it all and it started growing back in- 

But now I know why I never put it together-- cause I am a 1 and 1/2 year breast cancer survivor. After radiation taking femara-estrogen replacement- and zometa infusions--which I thought were causing the hair loss- not the AED's and my oncologist  said- hey you shouldn't be losing hair-- well duh--

and shock of all shocks-- my neurologist never said a thing about it being a side-effect- I didn't see it on the side effect list of the lamictal prescrip either

so basically, now, because I have heard of so many others haivng  hair loss -- I will include it as a side effect (along with so many others) of these dam AED's. I would have never thought of.

It is just one more reminder that this is one of the many awesome reasons and advantages of this forum--  

Re: Hair Loss and AEDs!

Submitted by George R on Sat, 2010-03-20 - 17:22

TAKES GETTING USED TO

The loss of hair, as well as all of the "never-thought-that-would-happen" aspects of taking anti-seizure pills. Although still not complaining that loudly, I have lost most of my hair, have gained a few pounds, and find myself much more short-tempered than I was years ago. But then, that could be middle age, right? Don't think that doctors do not know of the "might happen" aspects of medicines they prescribe. Their biggest fear is that the patient will take himself off his pills without thinking. I did this once, and almost lost my life. But look around you and you'll notice that shorter hair (for men and women) is kind of coming in once again! Oh, good luck at Mayo Clinic. I had my own left temporal lobe surgery done many years ago, and while it wasn't at that hospital, I'm glad I said "yes." The epilepsy's still there, but far less intense. Think positively. I'm sure you'll hear about procedures they have now that can help you tremendously.

 

TAKES GETTING USED TO

The loss of hair, as well as all of the "never-thought-that-would-happen" aspects of taking anti-seizure pills. Although still not complaining that loudly, I have lost most of my hair, have gained a few pounds, and find myself much more short-tempered than I was years ago. But then, that could be middle age, right? Don't think that doctors do not know of the "might happen" aspects of medicines they prescribe. Their biggest fear is that the patient will take himself off his pills without thinking. I did this once, and almost lost my life. But look around you and you'll notice that shorter hair (for men and women) is kind of coming in once again! Oh, good luck at Mayo Clinic. I had my own left temporal lobe surgery done many years ago, and while it wasn't at that hospital, I'm glad I said "yes." The epilepsy's still there, but far less intense. Think positively. I'm sure you'll hear about procedures they have now that can help you tremendously.

 

surgery

Submitted by Audra_59c712ad737ab on Sat, 2017-09-23 - 22:25
I hope the Drs. say that you're a candidate for surgery! Mayo is the BEST I hear. I had a temporal surgery to remove excessive scar tissue from a brain aneurysm surgery almost gone wrong back in '89. I still have absence seizures, but the surgery allowed me cut my med. dosage 50%. Before the surgery, my seizures couldn't be controlled on any dose. Good luck, and hang in there!

Re: Hair Loss and AEDs!

Submitted by missjulianne on Tue, 2010-01-19 - 19:23
I have lost 50% of my hair and apparently look like I am dying....

Re: Hair Loss and AEDs!

Submitted by rbeck on Wed, 2010-01-20 - 20:04
I completely understand... I keep thinking to myself that I'm only in my 30s, too young to be losing hair. Anyhow, I asked one of my doctors. She recommended taking Selenium supplements. *But beware, I did some research, watch your intake of this vitamin, a side effect of taking too much is... "hair loss". Truly. lol    I wish you the best.

Re: Hair Loss and AEDs!

Submitted by rbeck on Wed, 2010-01-20 - 20:21
P.S. Sue, please be careful what meds are suggested...  Certainly we all respond differently.    Months ago, my docs switched me from Depakote Er to Keppra. I had an absolute personality change along with other significant problems. --Very different reactions that most people.  I'm now back on Depakote, but a lower dose of all things... And I am still losing so much hair!       I'm going to give the Selenium a try (in proper amounts) and possibly Biotin suggested by tonialpha too.  Good luck.

Re: Hair Loss and AEDs!

Submitted by missjulianne on Fri, 2010-01-22 - 11:05
My dermatologist told me to take biotin 3000 mg a day, i take it in capsules. My hair loss is less then before, but it doesnt seem to be growing, which doesnt help!

Re: Hair Loss and AEDs!

Submitted by StaciDV on Thu, 2012-03-22 - 17:14

There is a over-the-counter shampoo you can get from your local drugstore named: Mane n' Tail which helps with growing your hair. It's approximately 9.99 but well worth the price.

Also, there are treatments for hair loss like DO GRO etc... they can be found at places like Winners &  Marshalls. As long as the product is vitamin based and has pro-vitamin B5 and other such B vitamins.

There is a over-the-counter shampoo you can get from your local drugstore named: Mane n' Tail which helps with growing your hair. It's approximately 9.99 but well worth the price.

Also, there are treatments for hair loss like DO GRO etc... they can be found at places like Winners &  Marshalls. As long as the product is vitamin based and has pro-vitamin B5 and other such B vitamins.

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Re: Hair Loss and AEDs!

Submitted by scarletlettera on Thu, 2010-04-01 - 23:50
I take topamax (300mg daily) and recently added lamictal (200 mg daily) and I have had hair loss for a long time.  I started the topamax 3 years ago and that is when the fun started =) I used to have shiny, thick hair and now it is thin and dull.  My nails started peeling about two months ago---I saw someone else posted something about that.  Interesting that it isn't yet listed on side effects as it seems so many people have issues.  Also, I got acne with topamax too, I am going to guess it toyed with my hormones somehow. 

I know the side effects are a bummer, but I am looking forward to having better control over my life.  It also helps knowing that we aren't alone =) these forums are a great system of support for me!

Re: Hair Loss and AEDs!

Submitted by catinpas on Sat, 2010-07-03 - 20:22

Regarding hair loss, I started having hair loss for first time after increasing my Topamax dose from 250mg up to 300mg.  Before the increase I didn't have any.  Since my seizures did not get any better, I decreased my dose back to 250mg and my hair loss went away...whew!

 

Regarding acne, I definately started having BAD acne after starting Topamax.  How I manage it:  Before I go to bed, I wash my face, then put on Duac cream.  This has been the only thing that workd for me.  PS Duac can be expensive.  Don't dispair, Duac is just made of 5% benzoly peroxide GEL (the Rugby brand has worked for me) and 1% clindamycin phosphate gel.  You can buy these components for cheap and mix them your self in a one to one proportion.  Note, the gel form of benzoyl perozixe is a lot easier to mix.  I mix them in a small spray bottle and add some water so the cream can be squirted out.

Good luck,

Cathy

Regarding hair loss, I started having hair loss for first time after increasing my Topamax dose from 250mg up to 300mg.  Before the increase I didn't have any.  Since my seizures did not get any better, I decreased my dose back to 250mg and my hair loss went away...whew!

 

Regarding acne, I definately started having BAD acne after starting Topamax.  How I manage it:  Before I go to bed, I wash my face, then put on Duac cream.  This has been the only thing that workd for me.  PS Duac can be expensive.  Don't dispair, Duac is just made of 5% benzoly peroxide GEL (the Rugby brand has worked for me) and 1% clindamycin phosphate gel.  You can buy these components for cheap and mix them your self in a one to one proportion.  Note, the gel form of benzoyl perozixe is a lot easier to mix.  I mix them in a small spray bottle and add some water so the cream can be squirted out.

Good luck,

Cathy

Re: Hair Loss and AEDs!

Submitted by Caroloski on Wed, 2011-07-06 - 13:34

Well guys, sounds like you all have been thru what I went thru in 1999.  yes, hair loss with all of them.  and now I am on zone (something) along with my Mebaral.  But the FDA is going to STOP the Mebaral, it is a barbituate.  And god forbid that after 41 years I would become addicted to it. 

It is the BEST DRUG FOR SEIZURES OUR THERE, HONEST.  Talked to a man who had grand malls from the age of 16.  His dr. put him on Mebaral.  He hasn't had one and he is 50 now.  This drug allows you to live life normally, and, of course the government doesn't want that, so they take it away.

 Mebaral is a combination of Dilantin and Phenobarbital.  In the right combination.  It is produced by Lunbeck who will stop making it the end of this year.  I am trying to find another drug for my problem. and I am so over dosed my family and I are at ends with each other.  If you know what I mean, I am not the same person now as I was, and my country has done this. 

 Oh God, I pray, take me soon to see your face, I pray.  Caroloski

Well guys, sounds like you all have been thru what I went thru in 1999.  yes, hair loss with all of them.  and now I am on zone (something) along with my Mebaral.  But the FDA is going to STOP the Mebaral, it is a barbituate.  And god forbid that after 41 years I would become addicted to it. 

It is the BEST DRUG FOR SEIZURES OUR THERE, HONEST.  Talked to a man who had grand malls from the age of 16.  His dr. put him on Mebaral.  He hasn't had one and he is 50 now.  This drug allows you to live life normally, and, of course the government doesn't want that, so they take it away.

 Mebaral is a combination of Dilantin and Phenobarbital.  In the right combination.  It is produced by Lunbeck who will stop making it the end of this year.  I am trying to find another drug for my problem. and I am so over dosed my family and I are at ends with each other.  If you know what I mean, I am not the same person now as I was, and my country has done this. 

 Oh God, I pray, take me soon to see your face, I pray.  Caroloski

Re: Hair Loss and AEDs!

Submitted by dbrown44 on Sat, 2012-03-17 - 11:11
I lost a lot of hair after the births of my children. It took forever (almost 2 years). I was taking AED meds. I found out later that the hair loss is a symptom of vitamin deficiency. A lot of these meds involve amino acid and sodium based parts. This can completely alter which vitamins and how they are absorbed.  I am not an expert on anything (obviously) but it may be worth it to check and see if adding higher doses of vitamins can counter the hair loss. I wish I had tried this much earlier.

I just started Vimpat 300 a

Submitted by Audra_59c712ad737ab on Sat, 2017-09-23 - 22:13
I just started Vimpat 300 a day, been on it only 2 months, 1 month ago I began to notice more hair in the sink and brush than normal.    I've been on Keppra 2000 for 7 years.  Has anyone experienced a lot of hair loss from the Vimpat?   I'm hoping the hair loss will dissipate after a few months once my body adjusts to it.  Thanks for the idea of taking prenatal vitamins, I'm going to try it!

Hi, this is my 1st post...the

Submitted by mmac92108 on Thu, 2019-03-21 - 21:59
Hi, this is my 1st post...the hair loss thing is unbelievable. I have been on trileptal since 2004. NO ISSUES...out of nowhere, my liver enzymes more than doubled, sodium/chloride deficiencies that landed me in the E.R.  & hair loss that would make me cry if I didn't cling to JESUS. Uugh!  Has anyone tried Rogaine 4 women? I started using it and my bangs are starting to fill in...get it in the foam and it works like the best mousse you've ever used! Your hair looks twice as thick while you're waiting...they say it doesn't work for approx. 20% of people but it's worth a try.  It takes a couple of months and you need to do it every day. Also, I noticed the loss got really bad when I quit my B12 injections so I started back up. Your Dr. can prescribe. Get it at the pharmacy and insurance should cover, if you aren't squeamish (I was @ first) you can give them to yourself....I'm thinking they work because Biotin is a B vitamin?? This website was really interesting as to why our hair falls out...the "natural" ways to stop a seizure actually made me laugh ("literally telling the seizure 'no'"  ha!) but the vitamins to take and avoid was helpful. https://www.healthline.com/health/natural-treatments-epilepsy#selfcontrol-and-biofeedbackThank you all for the suggestions and support...I have been a voyeur of this site for awhile and finally joined. Thanks again.

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