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7 Comments

  1. Mary Kay
    18 March 2009 @ 6:03 pm

    Hi James,
    I am going to respectfully disagree with your post. Topamax is a wonderful drug for severe migraineurs and is not considered “powerful” but therapeutic. Side effects many times wear off after a few months of treatment and compared to severe pain, nausea and vomiting they are acceptable to most people.

    I have prescribed this drug for over 10,000 people and was told recently I am one of the top 50 prescribers for it in the US..I have also done research on it. (I have no affiliation with the company!)

    It IS the best thing to try because the response rate for migraine is so high..it is my treatment of choice with a new patient..including teens and I have used it there for years.

    You can edit this if you like, but remember how many people read your blog..strong statements about treatment are best left to headache practitioners. Many migraineurs have high anxiety and reading this will cause them to stop the drug..if they do it suddenly they run the risk of causing a seizure due to abrupt withdrawl.

    Thanks for the update from Pediatrics..

    Reply

  2. James
    18 March 2009 @ 8:43 pm

    Thanks, Mary Kay,

    Don’t worry, I’m not in the habit of “editing” my visitor’s comments!

    First of all, don’t misunderstand what I’m saying. I am not suggesting that topiramate is an unwise choice for everyone. It has helped many people – I’ve said that before, and I’ll say it again. Every drug has its pros and cons – topiramate is the same.

    We may differ on what we mean by the “best” thing to try. Is it the “best” thing to try for everyone? Certainly not. Other practitioners would agree with that (for example, Dr. Carolyn Berstein in her book The Migraine Brain suggests that it be tried on patients that have tried other medications without success).

    There are many patients who have had a great deal of success without drugs, for example. Would topiramate be the best treatment to try, or the best drug? Either way, there are clearly experienced practitioners who would disagree with you (or with me!).

    The side effects of topiramate are well known. For example, Drs Silberstein and Young in their book Migraine and Other Headaches write about several of the side effects of topiramate, then point out that these side effects usually go away after the patient stops taking the drug. Usually?

    Clearly, being one of the top prescribers of topiramate in the US, you’re convinced of your opinion. That’s not a bad thing. I appreciate that you’ve done your research, and that you’re speaking out of experience, and the desire to help your patients.

    But to say it’s the best thing to try is a very debatable statement. Even if it’s true, it is not true for everyone.

    My point was that we need to consider very carefully before we say something is the best thing to try. Consider lifestyle changes, supplements, non-drug treatments, and other drugs (that may give you fewer side effects). Consider the medical history of the patient, what other drugs and treatments are being taken, and what symptoms are predominant.

    My concern is that many people are not considering the pros and cons, and are not being properly informed by their practitioners.

    Of course, I’m sure that’s not you, and I’m not suggesting that. But people need to be informed and make decisions based on the facts.

    Finally, regarding leaving “strong statements about treatment” to headache practitioners. I believe my statements have been balanced here and in the past. I have said that topiramate has helped many, and I’ve also said that there are concerns about it. These are concerns coming from doctors, researchers, and patients, not just from me.

    Every one of us has a part in fighting migraine and other headaches. We should be very careful about excluding people from the conversation.

    I am very glad to have your comments – and the comments of anyone who disagrees. This is a conversation, and none of us have the whole story. We should be careful about what we say, but we need to call it as we see it.

    As you disagreed with my statement that it shouldn’t be the first thing your doctor recommends, I disagree with your statement that it’s the best thing to try.

    That being said, I want to agree with and re-emphasize your point that someone already taking topiramate should not suddenly go off it. As I have said over and over, any changes in medication need to be discussed with your doctor.

    The question of this post is not whether you should stop it suddenly, but what those involved in the treatment of adolescents and children need to consider.

    Thanks again for your viewpoint, and for reminding everyone of that last point.

    Reply

  3. Kara
    30 October 2011 @ 10:36 pm

    Um, I’m taking Topamax, it’s made me suicidal and completely depressed, made my anxiety so much worse that it’s hard for me to go to school, I can’t remember homework assignments, or focus, I have trouble talking, I can’t think of words, and in the middle of speaking to people I forget what I’m saying, I shake, I randomly have spasms in my arms or legs now, I get cold sweats, I’m always running a fever, everyone tells me I act like I’m not even here anymore, I just plain don’t feel like myself, but it has helped my migraines so I don’t know what to do, if I get put on something else I’m afraid it won’t work, because before this NOTHING has helped, but the side effects I am having are awful

    Reply

    • Sarah Kohn
      7 April 2012 @ 11:11 pm

      My friends son had the same problem, he went through with it and ended his life just a few weeks ago. The last thing he said was I just don’t feel like myself and then ended his life.
      I would like to know if there is more people like this out there.

      Reply

  4. Paula
    18 February 2013 @ 1:35 pm

    I am on Topamax after trying every migraine drug out there and suffering for migraines terribly for years. At first, it was a miracle drug and although I suffered many of the side effects the fact that I wasn’t suffering 3-4 (or more) migraines a month made it worth it for me. As time has gone on I have had to up my dose considerably, and am now up to 200mg a day, and am back to suffering 3 migraines or so a week. My Dr. is relucant to up my dose but I am praying for a miracle. I find my thoughts are always ‘fuzzy’ and it’s hard to carry on a conversation. I lose my train of thought part way through and names escape me on a regualr basis. My daughter alos suffers from migraines and also didn’t respond to any of the typical migraine treatments. Her experience on Topmax was a terrilbe one. She became terribly depressed down. My happy go lucky child found no enjoyment in anything anymore. Luckily I was well aware of the possible side effects and took her off of the drug immediately. It can be a miracle for some but needs to be approached with much caution and awareness.

    Reply

  5. Annie
    1 March 2013 @ 9:01 pm

    After battling migraines for twenty years, I finally agreed to try Topamax as a preventative. This drug was so horrible, memory loss, delayed speech, intense skin breakouts and mental fog/numbness. I found it did not decrease my migraines much, in fact it made the attacks much longer. After eight months, my doctor took me off of it. Topamax was terrible for me! Please be careful if anyone is considering this drug.

    Reply

  6. Deb
    17 May 2013 @ 9:48 am

    My now 17-yr old daughter was prescribed Topamax last year. She had similar experience as Paula’s daughter. Our beautiful daughter became a child we did not know, lost interest in things teens should be interested in and lost 15 pounds. When she told me the topamax was causing her to hallucinate, I made the Dr. wean her off it. We can’t find any preventative or abortive drug to work effectively and she has a migraine every 7 to 10 days and feels crappy in between attacks. We took her to a physical therapist for alternative treatments and we are seeking diagnosis for a connective tissue disorder – the migraines are a by-product of this disorder. I realize this article was posted a while ago, but migraine suffers should look for a systemic cause for their migraines. I have seen my daughter suffer from migraines for 8 years. The last two years have been the worse. This should be the best time of her life and every day is either a Good Day or a Bad Day….most are Bad Days.

    Reply

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