Topiramate - hair loss

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HI, am looking for some advice. My 15 year old daughter has been taking topiramate for about five weeks after four years of funny turns which have finally been diagnosed as migraine by a neurologist.  Yesterday she cam downstairs in tears after feeling a bald spot at the back of her head. She has incredibly thick long hair and when I looked she has a large patch of scalp showing and e hair around it very thinned.  I have told her to stop taking the topiramate, she was only taking 25mg at night. Has anyone else had experience of this. I have a very distraught teenager at home now.

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  • Posted

    Topiramate can cause alopecia or hair thinning/loss, there's no question about that. If your doctor was acting properly and professionally, they should have told you about the potential side effects, but often don't. The doctor really shouldn't have let a teenager hang out to dry like that. It must be really distressing for her, especially if she had no inkling or knowledge of what she was letting herself in for.

    They don't actually advise stopping Topiramate immediately once you've started taking it, but as her dosage is presently low, I guess that she doesn't want to look any worse.

    You could try complaining to the hospital (they never take any notice and seem to treat patient complaints like a hazard of the job) and the G.M.C., which is the doctors' own professional body. They equally don't seem to like finding against their own, but you've got to officially register your dissatisfaction somehow.

    The bottom line is that if the prescribing doctor was acting professionally, he/she would have explained all the most obvious/relevant side effects to you/your daughter when he/she suggested this drug. You can't legally obtain Patient Consent without explaining all the side effects. If the GMC say that they don't see this as a Fitness to Practice issue, say that you want it referred to the next tier up their complaints system (can't remember what it's called) for an opinion. Don't let it go.

    Finally, demand to be transferred to another specialist. You have that right.

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  • Posted

    Hi tracymc, topiramate is a horrible dengerous drug and I wouldn't go near it again, it nearly killed me a few months ago and I am not exagerating, please check out my post entitled "Please be careful & watch your symptoms".  I had the same problem with incompitent doctors, 3 to be exact. 

    I agee with what STD says, but the trouble is they all close ranks and we ordinary plebs don't stand a chance.

    I hope your daughter soon recovers and finds another drug to help her problem.  They put me on it for migraines and the ironic thing is after trying 4 different drugs it was the only one that was actually working, but I had to go cold turkey on a higher dose than your daughter, which also has its risks.

    Good luck smile

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    • Posted

      How did it almost kill you? I have been on it for 8 months and have had bad side effects with hair loss and stomach issues to the point where Im worried so I figured I would inquired on your experience and see what happen if you dont mind sharing.
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    • Posted

      I have pasted a link to the post I made a year ago when I was still having tests post topiramate.  Please read it and it will tell you exactly what happened, thankfully the tests were OK and I am now fine, but it could have very different.  If you google the condition "stevens-Johnson Syndrome" you can read more about the condition aswell.  If you want my opinion, get off them now.

      Good Luck

      https://patient.info/forums/discuss/please-be-careful-watch-your-symptoms--299752

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    • Posted

      Stevens Johnson Syndrome is a horrible skin condition. I had no idea it started with a sore throat! My brother had it once from iv morphine. He is allergic to sulfa. It's added to morphine. It was as if he was burned all over his entire body!! A few years later he had another surgery on his feet and told them he couldn't have iv morphine. They thought he was just trying to get better drugs and didn't believe hjm!!! He got it again! He begged the nurse, but she was helpless. She watched him closely and cane into the room and saw his skin getting red so she ripped the iv out immediately! She didn't even do it properly, she just wanted it out asap!

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  • Posted

    1. Get your daughter off this dreadful drug! I never had hair loss but I had a whole list of frightening side-effects which ruined my life for 3 years before I realised what it was.

    2. Do try and reassure your girl that her hair WILL grow back. It's worrying for her but it will grow back and she'll soon forget her distress.

    3. Investigate Menstrual migraine - count the days between symptoms - if it's about 28 then you can assume it is connected with her cycle which can be dealt with simply by your GP.

    4. If it isn't menstrual then look at using a triptan - zomig, naramyg, etc. They are effective but, learn from one who took too many painkillers for over 50 years - don't let her get hooked on painkillers!

    GOOD LUCK   Lynn T.

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  • Posted

    I can only imagine how I would have felt when I was a teen if the back of my head had a bald spot. That has to be devastating for her! How about hair extensions? I'm not really sure how they work but I'm sure a hair stylist could put them in so that they would blend in with the rest of her hair. I guess you need to also be sure they won't prevent her natural hair from growing back! I feel so bad for her! My hair is so much thinner due to the Topamax and it really makes me self conscious and I'm much older than your daughter. :'(
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    • Posted

      Hello Kellzboyz, I hope you are this. Your post was so long ago. I was wondering how you are doing on the Topiramate? I'm taking the Trokendi XR slow release tablet for nerve pain and fibromyalgia symptoms. I have been losing weight and my hair is thinning. I've been taking it for 9 months. Are you still taking it and is it working for you? I'm really concerned about my hair loss. The weight loss has been fine, although, I only want to loose a few more pounds. Anyway, a few of these posts have me worried. I was hoping to see how you were doing?

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  • Posted

    Hi, I'm just wondering how your daughter is doing? I remember reading your post when this first happened. Has her hair started growing back? I hope she's doing well and her hair is coming back in! I've been off of it for two months and I'm still losing a handful of hair everyday, I have about half the hair I had before I started Topamax, wondering if it ever stops!
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    • Posted

      Hi

      My daughter is doing very well and is currently unmedicated and doing fine. Her hair started to grown back fairly quickly after she stopped taking topiromate, and now a year later the growth is there, obviously with much shorter patches, but she hadn't taken the drug dor very long at all and was on a very low dose, so maybe if you were on it for a longer time it will take a little while to settle down.

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    • Posted

      hi, i started taking topiramate 25mg just 2 week ago. i took 25 mg for 7 days then upped to 50mg for another 2 days. so in just 8 days id lost 50 percent of my hair. i stopped taking it after the 8th day. even though i havent taken it for the past 4 days my hair is still falling out. did this happen for a short while with your daughter or did it stop coming out as soon as she stopped taking it? my doctor finds it hard to believe that topiramate as caused this as i was only on it 8 days. this might sound dramatic but im devestated.
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    • Posted

      Did you find any treatment for her hair loss? I'm going to try castor oil for my bald spots. I'm wearing wigs for now. Some insurance in the US pays for hair replacement caused by medical issues. I'm thinking about trying that too.

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    • Posted

      Haven't been on patient.info in quite some time but I clearly remember your post about your daught error, so traumatic for a young girl! I'm so glad to hear things are looking up for her! I stopped taking Topomax back in May, I believe and my hair just stopped falling out in handfuls a few weeks ago! I'm very happy for her!!!

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  • Posted

    I have been off for 3 weeks after 8 months of taking it. For months I was on only 50mgs, but ended up taking 200mgs. It's turned me into a monster, so I was told. It also caused me to lose a ton of weight, which I was grateful. Now I have little hair, and some permanent brain damage. Also I was taking Adderall for a TD which is a stimulant. I was having some really weird mouth ticks from the Adderall. I was taking lots of magnesium to stop those tics but if I would forget it would come right back. Now that I've been off the Topamax for about 3 weeks The tics of gone away even when I don't take the magnesium. It's terrible and many of us are perscribed it off label! I have Ankylosing Spondylitis and was perscribed for neck pain and numbness in my hands. It actually CAUSED terrible neuropathy in my feet and lower legs! It felt like I always had on heavy ankle socks! I'm American, so if some of my wording is confusing lol you'll know why. I used my sister's mail code to register. I also didn't know that this devil drug has a black box warning!

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