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September 2006

You call that "news?"

Do your friends and family call and tell you or email you whenever they come across "news" about headaches and Migraines? If they're anything like mine, they do, and they do so quite often. I'd really rather see a story several times than miss one, but there are times when at least a dozen people will send me the same so-called news story, and it turns out to be absolutely nothing new.

That's obviously not the fault of the well intentioned people who sent it to me, but there are days when it makes we want to scream. I want to scream at the media and ask them to define "news" because I don't think some of them know the meaning of the word. Here are a couple of examples:

  • Not too long ago, I read an article that referred to Topamax (topiramate) as a new medication. Give me a break! Topamax went on the market in the U.S. ten years ago. That's hardly news.
  • On August 9, the New York Times ran an article by Jane Brody entitled, "Scientists Cast Misery of Migraine in a New Light." The only thing in the entire article that was new was a link to another New York Times article about Migraine with aura and cardiovascular disease. The statistics in the article, in fact, were sorely outdated. Sigh. Again, not news.

Is there anything we can do about this? Yes and no. Certainly, when we see something that's supposed to be news but isn't or something that's erroneous, we can write to the reporter or the editor. It's nice to thank them for their interest in educating the public, but point out if they've called something "news" when it isn't as well as inaccuracies in their reporting. We may not be able to change this trend over night, but every person we educate is one more person who can help both people who suffer with headaches and Migraines and the general public understand. There's another reason to write too. It's easier than screaming.


What's in the patient's best interests?

People in and around Pittsburgh will have an opportunity tomorrow to attend the Health for Life Expo. Part of the Expo is a Virtual Reality Migraine Simulation, which follows a day in the life of a woman having a Migraine attack, and a talk by Dr. Robert Fetchero.

According to the Pittsburgh post-gazette.com, Dr. Fetchero will focus his talk on Topamax, "which he said reduces the frequency and severity of attacks, and also causes a majority of patients to lose weight."

Hmmmmmm. Let me preface what I'm going to say by noting that Topamax (topiramate) is an excellent preventive medication for many Migraineurs. However, I have to wonder if it's really in the best interest of the people attending the expo for Dr. Fetchero to focus on any one preventive medication. None of them work for all Migraineurs.

In addition, I find his comment that Topamax "causes a majority of patients to lose weight" to be both a bit disturbing and perhaps not quite accurate...


Was that comment meant to appeal to people who want to lose weight? I find it disturbing because weight loss is a potential side effect and saying that it occurs in a majority of patients is inconsistent with the statistics for that side effect as published in the FDA approved prescribing information for Topamax. There are statistics for several trials in the prescribing information, and the percentage of patients who lost weight ranged from 11% to 36%, hardly the majority of patients.

It's interesting to note that the Virtual Reality Migraine Simulation is used by Ortho-McNeil Neurologics, Inc., the manufacturer of Topamax, in a their Mind Over Migraine program. The Mind Over Migraine Web site does indicate a program in Pittsburgh tomorrow. Does that have anything to do with Dr. Fetchero speaking only about Topamax? It could be that the event is sponsored by Ortho-McNeil, and there's nothing wrong with that, provided that there is disclosure of their sponsorship. It's also entirely possible that, if this is the case, full disclosure will be made at the event, although it was not reported in the Pittsburgh post-gazette.com article. Don't get me wrong. There's nothing wrong with Ortho-McNeill providing the Migraine Simulator or even inviting Dr. Fetchero to speak. Without pharmaceutical company support, such events would be few and far between. My point is that if this is the reason only one preventive medication is being discussed, it should be mentioned.

The bottom line? If you're in the Pittsburgh area, this could be an interesting event. Just realize that you won't be learning about Migraine prevention in general, but about Topamax for Migraine prevention.

For more information on Topamax and Migraine prevention, see:

  • Medications for Headache and Migraine Prevention
    For those of us with frequent headaches or Migraine attacks, preventive medications, dietary supplements, and even medical devices are often a good option. There are over 100 medications that can be used and nearly endless combinations of them. The list is ever-evolving, and will this one will be updated regularly.
  • Topamax for Prevention: Proper Dosage and Taper
    Topamax (topiramate), a medication originally developed for seizure control, has been prescribed for several years now for prevention of cluster headaches and Migraine attacks. Here's important information about how to best use this medication.
  • Topamax (topiramate) Approved for Migraine Prevention
    Doctors have been prescribing Topamax (topiramate) off-label for Migraine prevention for several years. Now, following clinical trials, the FDA has approved Topamax for this use. Topamax is a neuronal stabilizing agent, also known as an antiseizure medication.
  • Topamax Profile
    Profile of Topamax and links to other information including warnings issued about potential adverse reactions.

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Resources:

Templeton, David. "Simulator designed to help teach public about headaches." Pittsburgh post-gazette.com. August, 2006.


Back To School With Headaches and Migraines

It's that time of year again. That time when it's still summer, but time for school to start is sneaking up on us. Parents know that time all too well. There are school clothes and supplies to be purchased, class and bus schedules to review, and seemingly countless other details to deal with.

When your child has a chronic illness, whether it's headaches, Migraines, or a different illness entirely, we really can't afford to put off getting our children ready for school. There are extra steps that need to be taken; extra preparations that need to be made. Let's take a look... Feature Article.