This is only side effect I'm not comfortable with. I've been on Topamax since July and the hair loss has not let up. Thankfully, my hair is long (used to be soooo thick) but it's at the point where it's getting really thin now. It still looks nice, but I want to make a decision about this drug before it's too late. Would cutting my hair lighten the weight of the hair so it doesn't come out as much? Does anyone know if the hairloss eventually slows down or does it just continue to keep coming out? I'd hate to come off this drug, but I don't want to lose all of my hair either. Any suggestions as how to slow down this process? Are there vitamins to prevent this? Also wondering if it grows back if you come off this med.

:confused:

I've also noticed the hair's quality looks worse (in my case). Thinner strands, more split ends. I have long hair. I have so many hairs when I brush come out it's sad. Just one of those things we have to live with I think.

I'll say when I evaluate the medication, I go by if it is working mainly, and on a secondary am I having bad side effects, or are they ones I can live with. Depakote also had effects on hair as I recall from my past (didn't work the best for me either).

--Travis

P.S. I have *not* tried any conditioners or additives for hair treatments. Possible that products along those lines may help; no clue.

FYI, the side effects will go away once you're off the meds and the hair will grow back and not fall out like that anymore. I had been on of all of these meds and faced most of the side effects, but I was back to normal once I was off of them.

Thanks for the responses. I just can't sit back and watch it all fall out. I was hoping it lessen, but it's not, and it's starting to worry me. It's coming out from the roots and the scalp is starting to show. Since my seizures just started up again last year, this was my first med they put me on, but I really do not want to switch it, as I'm having good seizure control. It's good to know that if I do have to switch, that at least it will grow back. Thanks.

I just want to offer you some hope here as I had the same experience with Topamax BIG TIME! I thought I would go totally bald yet, I didnt want to stop taking the med. I was only taking a small amount even as I was on it for migraines and not seizures but was STILL losing my hair. It was a horrible drug. Anywho...

I did a lot of research and found a medication very, very similar to Topamax called Zonegran. It also is used for seizures and headaches and also doesnt make you gain weight. In fact like Topamax most have lost weight on it. I have been on it now for a while and have lost NO HAIR! I am very excited about that as I have very long hair and would like to keep it. One thing, it is a "sulpha" type med and since I am alergic to sulpha I was afraid to try it but my Dr. said it doesnt usually have the same allergic reaction as regular sulpha meds. I am happy to say so far I have had no allergic reaction either. Hope this helps. Try Zonegran, trust me, the Topamax? Your hair will continue to fall out. Zonegran is a life saver!

Thank you for that information. I too, have very long hair. I wish I saw this post a few hours ago, as I just saw my doctor today. The very first question I asked was about my hair loss. As far as the Zonegran goes, I am a bit concerned about it being a sulpha drug as I have systemic lupus, and was told I shouldn't take sulpha meds. I've gotten through the difficult stages of adjustment with the Topamax and I really want this medication to work out. I'm a bit leary of switching meds at this point as my seizures are under control. However, if it means losing all of my hair, I will put a call into my doctor. I can't believe how much hair I've already lost, it's really scary. Thanks again for that information. I will check and see if that med is ok for me with regards to my lupus and my particular type of seizures.

What brought you to an epilepsy board? (I'm glad you popped in, by the way) I'm dying to know... did your hair grow back?

I was switched from Z to topamax.

Zonegran caused substantial weight loss, more than Topamax does. I lost close to 20-25% of body weight it caused other meds levels to become higher than normal due to the change in weight.

YES Topamax and Z are cousin medications, they are related chemically.

--Travis

Thanks for your input Travis. Sorry it didn't work out for you. However, I'm all for more weight loss! I've already lost most of the weight I needed to lose thanks to the Topamax, but another 25 lbs. would get me to my goal weight - that would be an added bonus!

Just curious though... Which blood levels did it effect?

At the time I was also on Dilantin, and those levels jumped into the mid 20's, I usually held in the teens (16, 18). We tried, phoning the Dr of course, adjusting the Zonegran. First of all not increasing my final week of Zonegran, then dropping it one pill the following week, and lastly it was removed COLD (all at once).

I was still toxic after the removal so my Epileptologist (never can spell that right) had me come in for lab work. Thats when we found out about my weight loss and high dilantin levels. Dropping the Dilantin by the 50 I was taking at the time fixed the toxicity.

Looking back on that incident I think it was more so the weight loss that caused the toxicity than the Zonegran medication itself. Yes Zonegran caused the weight loss, however I had not been watching my weight. Had I been, that may not have happened if I caught the drop.

I think with Topamax my system has slowed the digestive process. I tried going up to 2 meals (full meals) a day and I added on weight to where my pants no longer fit. I gave up on two full meals a day if it would be adding on to my waist. I'm back to snacks for lunch and a full dinner. :/

--Travis

So if I understand correctly, the only count that messed up was the Dilantin, right? I don't need to worry about that since I hadn't been on it for many years. {{ Off topic for a sec but years ago when I was on Dilantin, my count hit 40 ! Talk about being in a walking coma! I was almost hit by a truck crossing the street and I have no memory of even stepping off of the curb.}}

Topamax definitely slows the digestive process down. I've been on it since last July and find that I'm finally eating decent meals now. I think it just takes awhile for the body to adjust to eating again. How long have you been on it?

I had to check my lab charts It's been a while. 2002 Spring was when they first added Topamax. End of 2001/January 2002 was when I had the Zonegran incident.

I couldn't imagine Dilantin levels in the 40's. I needed a CANE to be upright, not to mention the double/dancing vision problems.

--Travis