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Caution: Taking This Drug May Cause…(Part One)

I constantly work with my neurologist to adjust medications, hoping that one day we’ll discover the perfect cocktail to manage my Chronic Migraines. The ever-changing ingredients can lead to a range of side effects. There isn’t enough room on any prescription bottle to list all of the warning signs. I’m used to the dizziness, drowsiness and confusion that can come with mixing all the medications. But when my hair started falling out, I was stumped. I had never seen THIS on a warning label. After a few weeks I couldn’t ignore the problem. I was unclogging the drain 3-4 times during a shower. I could knit a sweater with the hair I found on the floor over a week. Concerned friends asked if it was “just stress.” My standard reply was that I wasn’t stressed until my hair started falling out!

I Googled all the new medications I was taking, and none of them listed hair loss as a potential issue. So I started with my family doctor, thinking this wasn’t related to my headaches. Blood work showed high levels of testosterone. This will either cause someone to grow facial hair or to lose hair in patterns of a middle-aged balding male. I guess I was happy that I didn’t need to shave my face, but the prospect of wearing a wig wasn’t ideal either. I was sent to an endocrinologist to find the cause of the testosterone imbalance, with no progress made. I was then bounced to my GYN to check for cysts, a common reason testosterone levels will spike.  Nothing wrong in that department either. Another check of my testosterone levels came back normal and we were back to the drawing board. I was then shuffled to a dermatologist to find ways to preserve the hair I had left. With each dead end, my research on wig shops increased. I thought for sure I was going to be bald soon.

I was very sensitive about my diminishing blond locks. The majority of my hair thinned out around my temples and ears. I became a master at arranging hair from the top of my head to cover the patchy balding spots. Pony tails made the issue very obvious so hats became my new favorite accessory. Even if other people didn’t notice, it really bothered me.  Migraines are mostly a silent disease. Except for the pained look on my face during an attack, a stranger wouldn’t guess that I deal with this debilitating disease by looking at me. Losing my hair was the first outward physical change I experienced that related to the headaches. I wish I could say I handled it with grace. I had to remind myself that there are so many people who deal with painful physical ailments or cancer treatments and I shouldn’t be so vain about this. But as a 32 year-old woman now using men’s strength Rogaine, it was hard to not feel like less of a person.

Finally my boyfriend found a study on a migraine preventative medication that I had been taking for years. An extremely small portion of users developed hair loss after years of use. When we began this journey I never thought to research this drug since I had been taking it for so long. I was so close to chopping my hair off when this discovery was made. Luckily, I already had an appointment with my neurologist. Before I even suggested the cause, she told me there was a high likelihood this drug was the root of my problem.

In order to stop the shedding, I had to transition off the medication. I soon realized how vital this preventative was in regulating my headaches. As I slowly began to reduce the dosage, the headaches became worse. However, the mounds of hair in my trash can began to decrease, a true sign that we had discovered the cause. It was a long process of tapering off the medication and finding a substitute I could tolerate. After a five month journey, I’m now beginning to grow hair again and my new medication regimen is as effective as before. I now see the baby hairs growing back and I can finally get my hair highlighted again, I’m starting to feel more normal.

Hair loss is a side effect that 99% of migraine patients will not experience. I don’t even want to name the widely used medication that causes it for fear of people running to their doctor to get off of it when it overwhelmingly helps so many patients. However, many of us will fall victim to a wide array of side effects from the medications we take to limit our pain. Each time I notice a new side effect I question whether it’s the medication or my imagination. To keep my sanity, I check in with my doctor every time a potential side effect is noticed. Together we decide if the benefits outweigh the unpleasant feelings and if a medication change is warranted.

What side effects have you experienced?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Hearing Things
    4 years ago

    It’s the Topamax. Every doctor I have talked to about the connection I suspect between my hair loss and Topamax just looks at me in a puzzled way and says that there’s no definitive evidence that the two are linked. Personal experience and anecdotal evidence suggest that they definitely are linked. Topamax is the first thing that has made me human – unfortunately it’s going to make me bald.

  • Kippieloo
    4 years ago

    I can’t believe that I actually found this, and I’m glad that I’m not just going crazy, or it’s age or stress causing my hair loss. I am angry, though because I was taking Topamax for just over a year, with good results. I could use paint and ammonia and bleach without triggering a migraine. I thought it was the answer to all my prayers, until the Doc upped the dosage and I started getting bilateral back pain (kidneys?). I didn’t notice the hair loss at first, because I have very fine but thick hair (dyed blonde, naturally while/gray).
    The back pain scared me. It was the final of a number of straws that made me discontinue the Topamax (under Dr supervision). It’s now 3 months since I stopped taking the drug – I now take Butterburr in its place – but I’ve lost more than half the hair on my head. There’s no pattern to the loss, it’s all over. And it’s still continuing. I’m now scared that it won’t come back.
    Call it vanity, but my hair has always been my crowning glory. I’ve kept my local hair salon in business with the random women who approach me and ask who does my hair.
    I’ve purchased the vitamins recommended, but I don’t want to use Romaine in any form unless it’s a last resort. I know someone who had alopecia – started as ariata and ended as universalis. He was told that the hair would grow back with the Romaine, but if he stopped the treatment, he’d lose whatever hair he had gained.
    I just have one other question. Is it possible that the Butterburr (Petadolex) could be a factor in the hair loss?
    Thanks for being here. I’ve spend decades in a wilderness without other migraineurs. I’m grateful for having found you.

  • vitamin_migraine
    5 years ago

    This is totally random, but I noticed a pattern of ‘long blonde hair’. Forget the long, are you all natural blondes?

    I have Polish ancestry and have very fair blonde hair. A few doctors have asked me if it’s natural and what my heritage was and mentioned stuff about this (severe migraines) being more common in Eastern/Northern Europeans. One asked to see my hands and then told me to take calcium supplements or I would wind up with osteoarthritis (I’m 30 and look no more than 25!).

    It never really occurred to me this would be a real ‘thing’. Then again, genetics are a huge part of migraines. So curious, does this really happen more to blondes? Are you all natural blondes?

    Also, to however is guilt tripping the author, I think your over-the-top reaction and demands are the reason why she chose not to disclose the drug. I get it, from my experience, when it comes to our medical treatment we often have to be pushy. But I’ve also learnt you *have* to remain calm and non-hysterical no matter how bad the pain is if you want to receive treatment. If not you will need to see psychiatry first which means a longer wait for a steroid treatment that doesn’t even get you high. Do you see where I’m going here? Ask calmly and he shall receive, quickly I might add. Lash out in pain and frustration at everyone around you and you just make it worse for yourself. It’s not fair, but it us what it is. I was personally shocked you would say those things to her over something as silly as hair. Seriously. Hair. I would personally lose my hair to be pain free. Losing my vocabulary, which I experienced, no. But hair? Seems a little silly, no? You shouldn’t feel ashamed per say, but…

  • AudreyB
    5 years ago

    I urge anyone experiencing any side effects to work closely with their neuro to find solutions. When I took Topamax, I lost quite a lot of hair. I added Biotin, Selenium, and Zinc to my daily vitamins. What a difference!! Not only did my hair stop falling out, but my skin stopped itching and my nails began growing. Ultimately, I had to stop the Topa for other reasons. But side effects can often be tempered with simple solutions. What about reducing the dose of the medicine?

  • Katie M. Golden moderator author
    5 years ago

    Audrey,
    So glad you found the cause. I also used biotin, zinc and selenium to help grow the hair back. Whether it’s Topamax or another drug giving you weird side effects, lowering the dose can absolutely change the way your body reacts. A lower dose may still help reduce the headaches and get rid of unwanted side effects. That’s why it’s so important to work with your doctor. The problem is that it can take time to work it out and that process is frustrating sometimes!

  • Danielle E.
    6 years ago

    Hi Katie,

    We seem one of the same. My hair started falling out a couple of years ago. I had long blonde hair that was literally coming out in huge handfuls. I thought I was going to go bald. I was bounced around from my neurologist to my PCP to an endocrinologist with a dermatologist rec to my psychiatrist back to my neurologist. At first, I tried supplements. Tyroid test, nothing. Went off several medications that may have been the cause. Tyroid test again, oh, turns out I have hypothyroidism now. Started taking Vitamin D. Finally, it stopped falling out. I honestly don’t know exactly what it was but it took over a year for it to stop falling out. Thank goodness because at one point, I almost shaved my head! I recently chopped off my long hair in a cute little bob. I had no choice but to start over!

  • Angiestl
    6 years ago

    Katie,
    Thank you for sharing this difficult journey with us. I have also had times when I’ve “caught” some weird side effect that was either the last one on the list of possibilities or so low of a chance that I had to go searching for it. Or I get hit by every one of the “most likely” side effects on the list!! What a super fun roller coaster ride!! I too had the hair loss side effect at one time, but it was within a month or two of starting the med, that didn’t help control my Migraine at all. After four or five high risk meds, my doctor finally tried me on an old school blood pressure medicine that worked WONDERS for me!! Unfortunately it only worked for a few of years, but hey, that was a few years with SOOO many less days curled up under a blanket with sunglasses on!! I’m actually going to ask my current doctor if we can through that one back in the mix, maybe it on top of the other one will make a delightful cocktail that will get daily down to every other day. And I’m always up for playing with meds that have few side effects!! 😉

  • Salli
    6 years ago

    I am also experiencing hair loss… It started after, I started taking Topamax… I haven’t been able to find any research relating Topamax to hair loss. I am so happy to read that others have had the same problem, and that I’m really not crazy….!!!!

  • AmyBabee
    6 years ago

    Hi Salli, NHB is right. Topamax can do that to you. I am also on it and right now I wear my hair very very short because that medication happens to be the only one keeping my sanity. I had to invest in a few wigs.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Salli,

    I’m sorry to hear about your hair loss. As Katie said, this is a particularly difficult potential side effect to deal with when we take any medication.
    Alopecia (hair loss) has been reported with Topamax, so no you are not crazy!!

    Nancy

  • Elle2
    6 years ago

    When I began reading this, I immediately knew what the writer was saying. I’ve been on topomax since September of 2013 and it has done wonders for my migraines, but my hair started “falling out” in November. I immediately researched causes and found out that one of the drugs I’m taking (topomax) causes you hair to fall out. I’m now (with the help of my doctor) trying to wean myself off this medication. Hopefully we can find something to replace it.

  • Becky Styer
    6 years ago

    Even on the other blogs I read, the authors won’t mention any of the medications that they are on. Yes it is kind of frustrating but it’s her blog so she can talk about what she thinks is appropriate.

  • marlenerossman
    6 years ago

    It is more than frustrating that you will not tell us the name of the preventative med that made your hair fall out. I think most of us are old enough to make qualified decisions or ask our doctors if we are taking that med, it could cause hair loss.

    It is inconsiderate and ridiculous to tell us that you cannot mention the medication. I really think you either should let us know what it is or never have written this blog piece.

    You can email me the name of the med and I promise not to tell.

    Edited by moderator to remove personal information

  • BethBlue
    6 years ago

    Finally, an answer! I began noticing hair loss about two months ago, and I freaked out. I bought some Rogaine and applied it, only to find that it ruined my highlights. In addition, my neurologist is threatening to take me off of Topomax because he believes I’ve suffered a drastic weight loss (it actually has leveled off and been unchanged for over four months) — I’ve been on 200 mg/twice daily for over two years. He made me feel like I had done something wrong! Along with Botox and preventives (Maxalt and Treximet), the migraines I’ve been experiencing for so long have finally begun to abate in severity and frequency. And just like other commenters here, I too suffer from memory loss and “tip-of-the-tongue” language problems, resulting in the inability to work as a teacher. However, I don’t want to mess with something that is working for me, and risk a new kind of drug regimen. I’m 53 years old, in otherwise great health, and I’m terrified to comb my hair or go back to my doctor!!! Can anyone offer some advice?

  • Katie M. Golden moderator author
    6 years ago

    Many readers have asked for the name of the drug that caused my hair to fall out. While I am very sensitive to your own personal struggles and want to do anything I can to help you in your journey, I also don’t want patients to unnecessarily go off a medication in fear of their hair falling out, especially when it occurs in a small population of users. I would encourage anyone experiencing this side effect to talk to their doctor about ALL medications you are on including ones you may have been taking for several years.

  • AmyBabee
    6 years ago

    I thought this site is for sharing and caring among people suffering the same disease. I hate it when people do this to others.

  • marlenerossman
    6 years ago

    Your refusal to tell us what drug caused the hair loss is beyond rude. We are all practically begging you to tell us.

    Please do not post in the future as you are torturing many of us with your attitude.

    Were it me, I would want all my suffering sisters to have an idea of this medication. You should be ashamed of yourself when we are all suffering so horribly.

  • taralane
    6 years ago

    Hi Katie –
    I am late on this post, but I wish you were more open about the drug you were taking. Many of us have been on many drug regimens, and we have to decide what works for each of us, or not, with the help of our docs. Any information that is not obviously “out there” – like hair loss from Depakote, which I have dealt with for about two years now – is a help in evaluating the pros and cons of taking that med. I understand your reluctance certainly, and your explanation of same is cautionary as it is necessary for an open format like this one.

    I do hope that in the future if you are talking about a specific drug, you will write a post about that drug, the pros and cons, and all the research you have uncovered. That may alleviate the personal issue and also allow others to benefit from your journey. That is why we are all here reading, right?

  • Teri-Robert
    6 years ago

    Katie,

    I understand what you’re saying about talking with our doctors about ALL of our medications. On the other hand, I too wonder what the medications were that cause you problems. We’re all in this together, and that kind of sharing is something we all value, and it helps some us validate our own situations in way.

    Teri

  • janenez
    6 years ago

    The hard part is when you figure out something is causing damage, and by the time you get off of it – the damage is permanent. It’s especially frustrating when what you took didn’t even help! I’m thinking of my 3 months on Topamax (was useless for me as a preventative) which gave me aphasia and my speech/thinking never returned to normal.I don’t mean to turn someone “off” of trying a drug because it is different for everyone, but I have been up and down the suggested drug lists for 30 years and refuse to “just try” a “pharm” anymore. For years I was thinking, “if only I hadn’t taken that…” But, since regret is not good for the soul, I’ve been concentrating on a healthy diet (gone gluten free), exercise (in small doses as I can), and anything else that is natural (massage, meditation, being kind to myself). I’m just too physically sensitive to anything “pharm” and tend to get all the side effects. Thankfully I’ve been able to stabilize a bit so I’m not in a hurry to try anything new. Lately, I’ve learned the hard way that generic Zomig is not as effective for me as the brand name stuff. I’m also willing to pay for the “real thing”.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi marlenerossman,

    I know we’ve “spoken” before so I guess that’s why I feel compelled to respond to your comment to Katie. I’m not sure if you were having a bad pain day when you responded, but I think it’s important to consider what we write before we hit the enter button.

    Katie along with every member of Migraine.com enjoys the freedom to disclose as much or as little information as they choose too. And if one took a moment to read ALL the comments, it would become fairly clear what class of medications were being discussed.

    Rude, hardly. Torturing us, I think not. I believe it is highly unlikely that a person with migraine disease would want to torture a fellow sufferer.

    From speaking with Katie she suffers just as much as we all do. To scold her for maintaining her privacy and not wanting to cast a bad light on a medication that has helped so many people, is just unkind.

    I hope not to offend, but felt strongly about commenting.

    Nancy

  • Amy Harkrader
    6 years ago

    Jane nez I have the same issue with generic zomig. And the longer I take it, the more I have to take too.

  • Katie M. Golden moderator author
    6 years ago

    Janenez,
    I applaud your efforts on a natural approach. Over the past year I started integrating these practices more into my daily life as well and find that it helps me to feel more in control. It’s a tough balance between medication and meditation! You gotta do what works for you!

  • Ellen Schnakenberg
    6 years ago

    Great post Katie!

    I too lost my hair. The culprits?

    First was Depakote, which had me losing my hair in a more diffuse pattern.

    Then there was the hair loss after occipital nerve blocks in which they used steroids. Use of steroids in these blocks has been found not to be helpful and is no longer suggested. This caused me to lose hair in patches over where the blocks were placed. This hair loss was complete in those areas and rather scary looking. Took years to grow in to match my long blonde hair. At least the long blonde hair I already had covered it up most of the time. 🙂

    We contemplated shaving it all and starting over after each of these. My hairdresser offered to let me come in after hours so it would be private. In the end, I chose to ride it out, as I was not nearly the kool mom who would laugh it off and choose colorful fun wigs instead of blonde hair… like I had always thought I would be.

    Live and learn I guess.

    ~Ellen

  • Katie M. Golden moderator author
    6 years ago

    Ellen,
    It’s nice to know I’m not the only one who went through this, although I wouldn’t wish it on anyone! Now that it’s growing back I’m glad I didn’t take scissors to it, but I think maybe I missed my chance at being a redhead!
    -Katie

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