topiramate and hair loss

[mjtrewhella]

Hi Im micy ,Im a very distressed mum , My daughter has had epilepsy for 14 years , generalized ,grand mal, and petit mals. She has been on topiramate and lamotragine for nearly 4 years and although the grand mals are less , frequent they still re-ocurr , She has had tremendous weight gain and now her hair is getting so thin you can see her scalp, She has nearly all the other side effects , Tired confused memory loss mood swings temper ,this was not like my daughter 4 years ago. what we need to know if we change her medication , will her sweet gentle nature retun?,will her hair grow back ?,If she stays on it will she go bald ?I dont think she can cope much more , Consultants are cagey wont give answers . and make us feel she should be greatful she not as bad as others. Help us please

[Bernard]

Hi mjtrewhella, welcome to the forum.

Hair loss and moodiness could be side effects of the meds. Switching meds is always a tough decision if the current one is controlling seizures. You never know what you are getting yourself into when you open that Pandora's box.

Is she using any of the "seizure control" diets (like the ones listed in the alternative treatments chart)?

[Birdbomb]

Welcome!

You might want to add Seliumn to her diet. I know it helps with hair loss and also have her wash her hair with Selson Blue. This is a dandriff shampo but there is selium in it too and boy did it help me!

Most side effects go away when medications are discontinued but eveyone reacts differently so it's reall;y hard to predict who returns to normal and who doesn't.

[brain]

Hi there!



I've never been on the medication, so
listen to them below! But sorry you're
having to experience the side effect!
Those are no fun!

[POSITIVEPERSON]

Hi Welcome to the boards. My first nuero when I was 11 (I am now going on 52) always made sure I had quality of life. They don't make drs like him anymore. But if your not satisfied with your childs dr shop around. Look for a epileptoligist in a epilepsy clinic.

I myself have run out of meds and dropping the last 50 mgs (I am on ) tomorrow. I am using homeopathy and diet to control my szs. The homeopathy Drs didn't believe they could get me off my meds completly because I wasn't treated at onset,I waited 39 yrs to go to the homeopathy Dr. The homeopathy did a great job till I got down to
1/2 tab of mysoline , I had trouble weaning off that, but with the GARD diet I feel more secure.

Once she is off the med and if her hair doesn't return , which happened to me on depakene :I went for acupuncture and it my hair grew right back. Like it never happened.

Welcome ot the boards
Wish your child the best of luck and a seizure free life.

Riva

[mjtrewhella]

Thanks Guys and Gals , We live in the UK and with the NHS you are made to feel a real nuisance You have to fight all the way The Doctors and Health workers are so complacent. If I had the money I would seek the very best treatment , All my savings go towards this goal. but It's a mere drop in the Ocean So I just keep battling the system
Micy

[Bernard]

Thanks Guys and Gals , We live in the UK and with the NHS you are made to feel a real nuisance You have to fight all the way The Doctors and Health workers are so complacent.

I hear similar sentiments from most of the UK folks I find on the 'net. It's months between appointments and never enough resolution when they do happen.

That's what makes the internet such a miracle. It really empowers people to learn quickly about anything. There are so many things I've learned in forums that doctors never bothered to discuss. After reading about them, though, I was able to initiate a dialog with Stacy's doctors and talk to them more on their level.

Hopefully, your next visit with the docs will be more productive.

[Elisa]

I'm so sorry this is happening to your daughter. I can't imagine going through the hair loss thing as a teen! It's hard enough for me at 40. I'm on the same two meds. your daughter is on and I just can't take it anymore, I to, can see my scalp. I do think it will grow back, at least I think mine will. If you look at my hair it tries to grow back, I have all these little bitty hairs popping up all over. I have to gel and hair spray my hair to death to make them stay down. I dread getting in the shower ever morning, it means a handful of hair to take out of the shower with me.
I have decieded to stop the meds and move back an old one, it's just getting back to the old one. This older one doesn't work as well, and really makes me feel like crap most of the time, lots of headaches, and depressed a lot of the time. But, I'm willing to deal with that for my hair back and well my cognitive skills back. Just so happens I started the switch last night. The only thing I'm worried about is I just started a new job 2 weeks ago. I haven't told them about the seizures, the change over may be a tough one.
I guess you need to decide how bad the side effects are, are they worth living with? I've lasted 4 years with my hair falling out, I'm done, it's time for a change. But, that's just me.
Maybe you could take to her about it, I remember being 14 like yesterday. My mom would put me on meds and then they would pull me off, I never undersood what they were doing and why. She would say something like " this one is making you depressed" and off we would go to the doctor. I didn't ever get to say how I was feeling, I would of liked to of been more in the loop.
Good Luck.

[montse]

I had many problems with hair loss when I was taking valproate, my hair is abundant thanks god, but once after having a hower my husband was very worried, he said "look at this!", the dermatologist adviced me a good shampoo, and also B vitamins, but it stopped when I changed to carbamazepine.
As they have advised you, if side effects are so strong you should go to the doctor, there are new drugs that perhaps culd help her more than these ones.
All mothers always want that we should go to the best doctor, and that "answer" of the docotr is very common, "look at this girl who is worse than you" "you should be happy that you are better" and bla bla bla
But this is not a solution, if you are not feeling weel with that doctor, try another. As Bernard told you, an epileptologist.