Hi there,
I've been on Topomax/Topiramate for around 8 weeks now and it's been like magic for me, 2 headaches in all that time that were quickly scuppered by a sumatriptan tablet.  I feel energised and like the old me.  I've had a few side effects such as pins and needles in my fingers and toes, slight forgrtfulness, forgetting words, that kind of thing but nothing tooo bad.  However my daughter found  a bald spot on the side of my head yesterday and I'm freaking out!!!  I have read up frantically and know Topomax can cause this but I can only find people saying they're hair has gone really thin and is falling out in their brush, none are saying they have bald patches.  I have been under stress lately with starting a new job, an ectopic pregnancy and splitting with my partner all within the last 3 months so it could be stress related, but it could also be the Topomax and I'm too scared to put it down to stress and continue with the tablets if it is the tablets.  Obviously I won't stop taking the tablets without say so from my doc, who I have an appointment with Friday, but I'm reallly paranoid and upset and feel I can't actually take more stress, even thoughtI know I'm being vain.  My hair is very short so I can't hide it.  but also this tablet is the only thing that has helped so far and I've had CH since about 14 yrs old and I'm 35 now, what if I have to stop it?  What if I don't and stop it because i decide the headaches come first and I'll have to be bald?  
has anyone here had any kind of hair loss on these tablets?  It would be very much appreciated if you could share your experiences so I could visit the doc Friday prepared.  thanks in advance x

Hi,

As I understand it, those who experience hair loss with the anticonvulsants are taking it for that purpose - anti-seizure purposes at around 400mg and up per day.   The stress might be a Large part of what's going on there in my opinion???
I have been taking it for the last ~3 years or so for chronic migraines at around 100mg and I have never experienced hair loss - haven't had anything more than the tingling fingers, dry mouth, and lack of taste of carbonation of drinks (went away in first year), and cognitive side effects (forgetfulness, loss of many words, which are still there every day.)
Topiramate never touched my CH, they actually started while I was on it - if it worked for me hell I'd go Bald!!  Not to downplay your situation, just how I feel right now.  Looks like I'm goin chronic according to all the docs.   :-/  Meds aren't preventing so much any more.  

Good luck talking to the doc -  ;)

Val

Hi Val,
I'm chronic and was having 3 upwards a day so am in a real dilemma as this med is really working for me.  I'm on 100 mg a day.
I'm sawying more toward alopecia from stress as it's a proper bald patch and most pieces I've read say extreme thinning but some say it comes out in clumps and patches.  And Topomax leaflet says hair loss and hair change as its contra indication, although rare, it has to happen to some people eh?!
x

YEah - the topamax information PDF stated that over 1% of the 1367 migraine clinical trial guinea pigs described alopecia as a side effect.  Wasn't common, but who knows how much over that 1%???  

Tough decision - yes a real dilemma as you state it.  Some of the stuff I read stated your doc might be able to give you something to counteract the hair loss if it is indeed the topiramate - if you are willing to hang in there to find out if it was stress or not.?  Only other option is trying something else.  All the other anticonvulsants are likely to do the same - Depakote is another favorite for headaches with similar chances of hair side effects.

Val

I believe depakote is called epilim over here in the UK and I was on that before the topomax.  It didn't help much.  i've also tried verapamil.  I think I might ask the doc to wean off the topomax and see if it grows back then go back on and if it starts again Ill have my answer.  But I'm hoping that by then some more of the people on here will have posted their experiences  on here.  As I said most people on the forums complain of thinning although the side effects can be hair loss and hair change, I just can't find any.  It's just so damn confusing.  I'm trying not to be vain and thinking to muyself that I can handle being bald if it means no CH, but in reality....................
x

I tried 200mg of topamax first and had hair loss.  Lots of hair fell out when brushing etc but no bald spots.  I also latter tried 600mg of topamax at the advice of a ha clinic specialist same hair problem.  It did nothing for my ch.  What dose of verapamil did you try.  Many take around 960mg or higher.  It gave me an irregular heart beat and shallow breathing and low blood pressure at that high dose so couldn't give it a chance to work on my ch.  Good luck.

I've been on the Topiramate 50mg daily, for about 6 weeks; and i  dont think i'm losing any hair.  Stuff seems to be working too, or I just could be out of my cluster cycle. Also have quit caffeine.  Keeping my fingers crossed.  Best of luck to you.

Quick update.  Been on the same levels of this drug for a good few months and lost quite a lot of hair now...right side of head is almost bald and yesterday i found a small bald spot right in the centre at the front of my head.  The stress in my life has calmed down , but not sure if it's the topomax or because the alopecia has started from stress and that's that.  I saw a different docotr and she says that alopecia is definatley a side effect but an extermely rare one.  I'm also rapidly losing weight.  i have no appetite whatsoever...lost 3 stine already!!!  I have one month to either put on weight or stabilise.  So am setting my alarm and eating every 2 hours, as I don't want to stop the meds as they're the only things that have stopped the ha.  I'm coming to terms with the hair loss slowly and have a building collection of hair bands and have contacted a great place that helps with the cost of wigs because I don't have 50% of hair loss the nhs won't help yet, and as a single mum of 3 my wages won't stretch that far with Christmas coming up.  I guess I've put my ha's over my hair.  Without the meds I would struggle to hold down a job and have the quality of life i have now, I can't imagine going back to how I was living before taking the topomax.  If I'm bald I can wear a wig and still lead a good life.  Without the meds, I have hair but can't work, my kids have to take care of themselves while I'm in my room in pain, and we're struggling for money and I just can't bring myself to go there.  I'm not 100% happy with it but I'm learning to live with it.  I'm pretty convinced the topomax has caused it although I have no proof...it's been almost 6 months and there's no regrowth, with stress related alopecia I would've seen regrowth of some kind by now.
Well there we have it, thanks for your messages prior to this.