Seizure medication anyone?

ElletteEllette Registered Users Posts: 3
So I'm on seizure medications. The first one I went on turned my hair from a lovely reddish colour to a fairly boring brown (not a nice rich brown, just a blah brown). It also made me gain 50 pounds in 3 months, but that is another story. :cussing: I am on two different ones right now. One of them, every time my dosage was increased, my hair amount decreased. It got bad enough for a while there that I actually chopped most of my hair off and bought a wig. It was fun in a depressing way, for the first time in my life I had straight hair. It was a dang good wig, people who have known me my whole life and see me every week asked me if I'd gotten a haircut rather than where I'd gotten my wig (people are rather dense...hair gets longer and straight and you think haircut?). It has come back in a little bit since then, but I still have thin hair. When I was little, I was nicknamed "Sara Fawcett" because I had such thick hair. You couldn't see my scalp and I never knew what getting a sunburn on your scalp was like. Now, at 37 (and actually able to pull off late 20's early 30's) I have to worry that not just my pasty white self will burn in 5 minutes...'cause it HAS happened...but my scalp will. When your scalp blisters it looks like the world's worst dandruff! :laughing9:

Anyone else had this sort of reaction to seizure medication, or any other med? I had one doctor tell me that I could try Rogaine (and she suggested using the men's just not using as much as they suggest because it is simply the same stuff as women's but twice as strong) but it probably wouldn't work, and another tell me that it could be from the fact that the meds mucked about with my hormones. Really, they told me there wasn't anything I could do except not be on seizure medication...and I can't do that.

Sara

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  • Curly_Cajun_FemmeCurly_Cajun_Femme Registered Users Posts: 342
    Ellette wrote: »
    So I'm on seizure medications. The first one I went on turned my hair from a lovely reddish colour to a fairly boring brown (not a nice rich brown, just a blah brown). It also made me gain 50 pounds in 3 months, but that is another story. :cussing: I am on two different ones right now. One of them, every time my dosage was increased, my hair amount decreased. It got bad enough for a while there that I actually chopped most of my hair off and bought a wig. It was fun in a depressing way, for the first time in my life I had straight hair. It was a dang good wig, people who have known me my whole life and see me every week asked me if I'd gotten a haircut rather than where I'd gotten my wig (people are rather dense...hair gets longer and straight and you think haircut?). It has come back in a little bit since then, but I still have thin hair. When I was little, I was nicknamed "Sara Fawcett" because I had such thick hair. You couldn't see my scalp and I never knew what getting a sunburn on your scalp was like. Now, at 37 (and actually able to pull off late 20's early 30's) I have to worry that not just my pasty white self will burn in 5 minutes...'cause it HAS happened...but my scalp will. When your scalp blisters it looks like the world's worst dandruff! :laughing9:

    Anyone else had this sort of reaction to seizure medication, or any other med? I had one doctor tell me that I could try Rogaine (and she suggested using the men's just not using as much as they suggest because it is simply the same stuff as women's but twice as strong) but it probably wouldn't work, and another tell me that it could be from the fact that the meds mucked about with my hormones. Really, they told me there wasn't anything I could do except not be on seizure medication...and I can't do that.

    Sara

    My son did the weight gain on Depakote and some thinning of his...
    Now he is on a newer anti - seizure med and his hair is really thinning out, he doesnt mind so much. He feels he can function with thin hair and no seizures than he can with a head full and grand mal seizures...

    Better living through chemistry is a double edged sword sometimes...
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  • ElletteEllette Registered Users Posts: 3
    What is he on now if you don't mind me asking? Keppra is what made me do a human impression of a balloon, and Lamictal is what has made me lose my hair. I'm on Lamictal and Zonegran right now, but while I'm not having any TC's, I'm having simple partials multiple times a month and I'm as high as I can go on the Zonegran and as high as she'd like me to go on the Lamictal and I REALLY don't want to swap meds. I tried one other one, all that did was make me sleep for 18 hours straight, and as a stay at home mom...not a good idea. Thankfully my husband was home that day because I seriously could not do anything but sleep whether I wanted to or not.

    I just got my hair cut to chin length and while I'm still about 55 pounds overweight (it is really hard to lose weight when you gain 60 pounds and then the week you go off the medication you find out you are pregnant with your first) I think it makes it look a little more full than when it is armpit length. Sure, my scalp is still more visible than I'd like, but better than it was. I'm just scared to switch medications because the unknown side effects that will always happen.

    Thanks for the reply, Sara
  • Curly_Cajun_FemmeCurly_Cajun_Femme Registered Users Posts: 342
    Lamictil has caused my sons hair loss. For him the benefits far outweigh his hair loss...
    Since he has been on Lamictil and Zonegran he has not had to be hospitailzed for uncontrollable and or break through seizure activity in over 4 years now..
    3b /3c
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  • BenneeBennee Registered Users Posts: 1
    Ellette,
    I am 37 yrs. old and I, too am taking seizure meds for epilepsy and while I am not sure that they are what is what is thinning my hair, it is very hard having thin hair. I am not sure that it's my seizure meds because I also have PCOS-- Polycystic Ovarian Syndrome. This is known to thin hair and so it could be the cause of my problem, too.

    I used to be on Lamictal, but I am currently on Topamax (which I have been on since my very first "recorded" seizure 5 years ago-- it was a Grand Mal, but it was my only Grand Mal. It turns out that for over 13 yrs. I had been having Complex Partial Seizures, but they were such short seizures and I couldn't explain them to anyone. Then as they grew longer and longer, they became the "auras" that came before my seizures.) I am now also on Oxcarbazepine (the generic of Trileptal). It is amazing because it has changed my life... it is doing what Lamictal couldn't (it's also the 3rd med I'm on and I was threatened that if I couldn't stop having seizures after 3 meds we would have to look into having surgery.) We have had to play with the dosage, but that's fine with me... I'll increase, as long as I don't have to have surgery!!! I am seeing a specialist for epilepsy.... not just a regular neuro. anymore.

    As for the hair thinning, my primary doctor put me on Aldactone-- it is a diaretic. She said that in 6-8 months we will hopefully see some hair growing in a little bit. She said it will work slowly. The other problem with PCOS is that it takes away some hair and gives you other hair-- since it is a hormone problem. So I am dealing with some slight upper lip hair. The Aldactone is also supposed to help take that away. I am on a very low dose 25mg. so she could increase it if she doesn't see anything after 8 months. I am just being patient.

    As far as the weight gain, I am "pleasingly plump" (LOL) anyway, so I can't tell if the Lamictal did anything to increase that, but I was told by my original Neuro. that Topamax was supposed to help me lose weight and it NEVER did... so I just took everything he said about positive side effects with a grain of salt.

    One thing that is AWFUL about epilepsy and epilepsy is the tiredness and heck, just pure exhaustion.... and the lack of short term memory!!! The meds are what are making me so tired, I know that and I had no idea until my epilepsy/neuro. told me that it was NOT just my seizures that had killed my memory but it was ALSO the MEDS themselves that were doing it!!! I was SO SHOCKED!!! I thought, why am I taking these if I am trying to get better and these are making me worse... but these may be killing my memory (a 5 yr. old can recall their phone number, but I forgot mine today!) but if I want to stop having seizures then I HAVE to take these darn meds (plus, if I stop taking the meds, the seizures that I start to have again will just destroy my memory anyway!

    I am sorry we are both going through this, but it is nice to find someone else out there so we aren't alone!
  • rileysmama32208rileysmama32208 Registered Users Posts: 69
    Its possible that the meds AND the PCOS (i have it too) are causing the thinning hair... have you tried taking a prenatal vitamin? (i know, thats a duh, but it sure couldnt HURT i wouldnt think!)

    i am on a very low dose of Neurontin (gabapentin) because i get severe migraines with auras. I don't have epilepsy, and its a very low dose, but i used to be on a much higher dose.
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  • geckogecko Registered Users Posts: 313
    My (male) friend has been on numerous seizure meds throughout the years and has experienced hair loss. Though hard to tell the difference between meds and male pattern baldness. One of the meds (can't remember which one) said it reduced intake of selenium and that could lead to hair loss and other problems. Selenium is easy to find as a supplement. Rogaine is worth a try. Also, seizure meds (various) can mess with salt levels, nutrient uptake, liver function, etc. It is certainly worth looking into how the meds might be affecting your body and seeing if you can do anything about it. The techy info about the individual drug can give some clues if your physician doesn't know offhand.
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  • georgiamariegeorgiamarie Registered Users Posts: 2
    I've been experiencing hair loss due to an anti seizure medication called Topamax. I don't take it for seizures, though, I take it for migraines.

    When I first started to notice the hair loss I freaked out and went to my OBGYN, who ran blood work and determined it was not my thyroid. Then I went to a dermatologist who said it was probably the Topamax. She looked at my scalp and said there was new hair growth, so I wasn't going to go bald. That was sort of comforting, but I'm still not happy about losing nearly half of my hair!

    Finally, my neurologist saw me. He ended up reducing my dosage dramatically, and he put me on 1 mg of folic acid daily, in addition to the amount in a prenatal vitamin I had already started taking. He said that sometimes the folic acid will counteract the hair loss effects of the Topomax. 1 mg is a prescription strength dose, but you could get the same from taking several OTC pills.

    My hair is still coming out, although maybe less at a time. It has become so emotional for me that it is hard to be objective about how much hair I am actually losing.

    Anyway, thought the folic acid tip might help someone else, and wanted to pass it on.

    I'm debating about switching migraine medications. On the one hand, I'd prefer for the folic acid to have some time to work so that I don't have to get on the merry go round of trying out a new migraine med. On the other, it is very upsetting to see my hair come out. :cry:

    This is my first post by the way. I just started CG yesterday. Hoping it will help my poor hair look better.
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