Getting Off Topamax Due to Hair Loss - Angry and Need Advice

Edited , 13 users are following.

In April, I finally saw a Dr about my weight. I had been watching what I eat, exercising and drinking half my weight in water every single day and still not losing any weight. At the time, I weighed 237 lbs. I should have been losing weight with diet and exercise, so I figured maybe I should get some tests done to make sure my health was okay.

My blood tests came back great! I'm in good health as far as my blood work shows, but I obviously need to lose weight. So, my Dr suggested a weightloss pill with the speed of lightning. I, being all about a helping hand, said "OF COURSE!" However, I did ask her these questions:

"Will it cause anxiety?"

I asked this, because I was put on Adderal as a young girl and it made me anxious to the point of attacks. It was awful. I always ask this of medication now because I don't ever want to go through that again. In response, she said "Well, not Topamax. It's actually used as a mood stabilizer, so it'll be good for your anxiety."

Amazing! Losing weight, helps with anxiety... What more could I ask for. Then I asked:

"What should I avoid? What should I expect?

She said I didn't have to avoid anything. She said I didn't need to expect anything, just weightloss.

Well, great! SIGN ME UP SISTER!! God, I wish I had never, ever everrrr accepted this drug. The next few weeks weren't hell, but they were just confusing. I didn't have anxiety because I was cloaked with confusion. The brain fog was real, the tingling in my hands and feet was real, but that stuff didn't really bother me because I was slowly losing weight. Just slowly, though. Nothing drastic. I could handle those side effects. The pill actually helped me sleep. I didn't mind it, until... I started losing my hair. The one thing I loved about myself, the one thing that, vainly, kept me going, clearly started to thin drastically. It started with my eyebrows. Then I could see my scalp more and more. Now it's to the point where I don't want to brush it because it just falls out on its own, why brush it out even more? So, I'm stalled at 224 lbs, my once beautiful long hair looks like it is hanging on by a thread and I am self weaning myself off of this awful medicine.

The withdrawals have been intense. Anxiety, depression, stomach aches, even more confussion... I only took this medicine for a month!!! Like, how!? I have weaned properly with the advice of my Dr. I have an appointment on Monday, but I want to tell her how angry I am. She laughed at me when I told her about the hair loss and basically made it seem like I wasn't giving the pill a chance. She also said hair loss isn't a side effect of Topamax, but I have read differently. I want to trust MY DOCTOR, but she has been so rude (so has her staff) and I'm just lost at this point. Who do I go to? Another Dr? Do I go to a weightloss clinic? What about my hair? Will it grow back? Is it permanent? I honestly have never been more depressed in my entire life.

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13 Replies

  • Posted

    I have used Topomax for for migraines for 10 years. I’ve had all the side effects including tingling, slurred speech, weight loss. Things got better. Three years ago I started losing hair. I have a thyroid problem so they thought it was that. But after seeing 6 doctors we found that it wasn’t. I have just spent 8 week’s weaning off Topomax. I’ve been 2 Days wo any. I have dry mouth, am exhausted tired and have horrible nightmares. Plus migraines. I am hopeful all of this goes away soon. And that my hair returns. 
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  • Posted

    Has your hair come back at all?
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  • Posted

    I just took my last 12.5 mg of topamax after spending the last 11 months slowly weaning off. Started losing my hair 8 months after starting it. Had severe side effects when I started it that mostly went away. The last couple weeks though on a super low dose and none for the last two days have sucked. Horrible stomach pain, diarrhea, twitching, a pretty severe resurgence of anxiety, hyperventilating, dizziness, heart palpitations, severe irritability, crying spells. I just hope I start feeling better soon. I'm on a bunch of other meds too though. Zoloft, wellbutrin, gabapentin, and levothyroxine

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  • Posted

    I was on Topamax for migraines and lost a lot of hair, it was awful. It did grow back so I had to change how I styled my hair until then, I tried Saxenda but my liver didn’t like it so ended up with a gastric sleeve. Good luck. 
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    • Posted

      Try sodium valproate as I had horrible hair loss and other side effects while on topermax and now I'm on the sodium valproate I get zero migraine and zero side effects and my hair is finally coming back after about 8 months of no regrowth. Hope this helps you. Anthony 👍

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  • Posted

    Oh Shannon, what a double whammy of pain... firstly the distress of losing your hair but even worse the attitude of your doctor. .. I'm so sorry.

    Personally I haven't taken these pills but I did have weight loss surgery, and many many many people experience hair loss following weight loss surgery.

    It was nearly a deal breaker for me.  I was very luck an only experienced a thinning of my hair.

    Did you lose a lot of weight at the beginning?  I think it's a shock to your system.  It appears that in that instance hair usually grows back, so take heart.

    Take multi vitamins .... good ones... Centrum is best... making sure that you are getting all of your nutrients.  Try not to use chemicals on your hair, dyes, mousse etc. 

    The spring is coming, my hair always grows better in the brighter days.

    I really hope that your body's balance sorts itself out and your hair grows back 

    Kay

    X

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    • Posted

      Hi Kate I lost a huge amount of weight on the topermax for migraine about 40lbs very quickly but it's not a nice drug at all far too many side effects and I didn't need to loose the weight at all so I've come off them due to the horrific hair loss. I think most people who have gastric surgery must take lots of multi vitamins for life because it changes the way your body metabolises everything differently and it stops you getting any benefits from food you put in your body it literally zaps anything good from the food you have ate as it dosent give your body chance to take the nutrition from the food and obviously the other side effects. I know quite a lot as I've been involved with weight management patients during my time in endocrinology. I wish you well in your weight loss and I know lots of patients who get hair loss due to the surgery do regrow their hair once your body settles down and recovers from the initial shock of very little nutrients getting in to your system. Try saw palmetto it's very good at hair regrowth especially with females and it's very good for the body in general and very inexpensive. Good luck Anthony 👍

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  • Edited

    WOW! So I guess it's NOT my thyroid then. It's the Topamax I've been on the last 4 years. I take 300 mg per day to help with my pain. My hair has RESLLY been falling out horribly lately. I need to get off of this stuff!

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  • Edited

    My neurologist put me on Topimax in February of 2019. I thought it was the best thing ever. I lost that last 10 pounds I had been holding on to since my pregnancies and my migraines went away! Unfortunately, with that came complete fog brain (I am an attorney and I literally couldn't think clearly to do my job), depression and THEN the hair loss started about 5 months later. I had no idea it could be because of the Topimax so I kept taking the drug. It wasn’t until I did some research on my own that I realized the hair loss could be because of the Topamax! I've lost about half of my beautiful hair. It was so upsetting. I emailed my doctor and told her I wanted to go out the Topamax. She did not initially believe me that it may be because of the drug. As soon as I went off the Topamax the hair loss slow down. About two months later it completely stopped. I’m so happy now every time I shower I don’t have to cry as I watch my hair run down the drain. It is slowly starting to grow back. It’s only been a few months. I am hopeful it will come back. Get off of this truck! It is horrific!

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  • Posted

    I do not know if hair will grow back, i ask myself that very same question. I lost my hair but it has gone with age, i havent heard of any stories of people losing their hair and getting it back again, without surgery.

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    • Posted

      This is not androgenic hair loss josh it down to the medication attaching to the hair follicles and stopping any growth phase where as male androgenic alopecia is caused by dyhdrotestosterone a part of testosterone that makes males genital growth within the featus during pregnancy but unfortunately men are very sensitive to this part of testosterone and it causes us to go bald. You can take a 5 alpha reductase inhibitor which stops the hormone from attatching to your hair follicles and you get very good hair regrowth in fact I've seen people start taking this drug (dutasteride) and (finasteride) grow more hair than they had before they realised they had hair loss but it's a long term thing it will not work overnight and really as soon as you stop the effects of the bad part of testosterone will return 🤮🤒🤮

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  • Edited

    Hi I can understand your concern with this issue and 100 % it's the medication that's causing the hairloss. I started using the drug for hemiplegic migraines and I noticed within a week that I was waking up with lots of dark brown hair all over my pillow and on the bed sheets and we are talking at least 100 per day which apparently is OK 🤔 no chance!!! I would shower and wash my hair and my wife would comment on the amount of hair all over the bathroom and when I dried my hair there was hair everywhere in the bedroom and on my shoulders and stuck to my back. I started to notice how thin my hair was and I contacted my doctor who said he had heard about this problem with both male and females who were taking topermax even at very small amounts so I decided to swap to sodium valproate and the hair loss stabilised soon after stopping the medication. The problem now is getting the hair that I lost back! I'm 45 and I'm certainly not going to shave my head so I've had to start on finasteride (males only unfortunately) and minoxidil to promote growth and also derma rolling my full scalp which in my head is a lot of extra work on a morning and night for the sake of a bloody tablet for migraine. You mentioned about the weight loss and yes I lost 30pbs in no time at all but I had felt like I was plugged into the mains and I couldn't feel my arms and hands for the terrible tingling I got so no thank you its not something I want to ever take again even if I lost 5 stone. If I were you I would stop them and change them for something else because I can appreciate your worries with your scalp and it kicking so much hair off because it's not worth loosing all your hair for loosing a few pounds it's very bad for your mental health seeing your lovely locks dissappear before your eyes? Regarding your weight have you had your cortisol levels checked? It's one massive problem with people not being able to loose weight despite excersise and diet it's a absolute nightmare but doctors will not test your cortisol levels unless you ask them to and the majority of people who think it's a thyroid problem it's actually the adrenal gland at fault. The way your body gets rid of full fat cells is simply burn more calories than the amount you put in to your body but with high cortisol levels even slightly raised levels the cortisol won't allow the body to metabolise properly if at all it stops weight loss dead in its tracks. If I couldn't get a different medication and it meant living with migraine which are like a full blown stroke I would rather have the migraine and the days in bed than take that ever again so please talk to your doctor and mention a cortisol blood test and that could answer a lot of questions for you 👍 I hope you can get the problem sorted out and the hair loss will stop and you will regow your lost hair it just takes time but you can speed the process of growth up with simple different vitamins and root stimulating shampoo and head massaging with your fingers just to increase blood flow to your scalp. Good luck and don't hesitate to ask me about any further information. Stay well. Anthony.

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