Thursday, March 13, 2008

Migraine Treatments: Time to get off our behinds!

Here's a sad fact for you -- There are NO medications available that were developed for Migraine prevention. NONE. Everything we have in our arsenal was developed for other conditions. Then Migraineurs using them for those conditions noticed that they were having fewer Migraines. All the preventive medications we have are what Teri Robert calls "hand-me-down" drugs.

How about another sad fact? Two days ago, the Alliance for Headache Disorders Advocacy posted an alert to their web site asking Migraineurs and other headache disorder patients, their friends, family, coworkers, etc., to email their members of the House about increased NIH funding for Migraine and headache research. The set up they have makes it quick and simple to send that email. It takes less than five minutes. I just emailed Teri, and was shocked by how few people have responded to that alert.

I read several Migraine forums, and am always saddened by the number of people who are desperately searching for effective preventive treatment. Lives are being disrupted and destroyed by this disease.

So, here's my question for those of you who are in that position or care about someone who is -- IF YOU HAVEN'T GONE TO THE AHDA SITE AND SENT THAT EMAIL, WHY NOT?

This is something we can DO that can make things better for us. It only takes a few minutes. You don't have to look up your representative. That's done for us. Even the introduction and closing of the email are done for us. We don't have to leave our homes or even pay for a postage stamp.

Here's my take on this situation. If you don't take a few minutes to go to the AHDA site and email your representative, they you no longer have the right to complain about the lack of available treatments. We can't just sit back and count on other people doing this for us.

It's one email. It's five minutes out of our day. It's time to get off our behinds and DO something!

From a blog entry on MyMigraine Connection:
PLEASE, go to NOW. Click the "What YOU Can Do" link in the left column. You will go to our Alert Center. There is a box with our Featured Alert. Simply click the red "Take Action" button in the Featured Alert box. That will take you to a letter that's ready for you to add what you want to say about this issue, fill in your name and address, and have your email sent directly to your Representative. It is urgent that you do this NOW because the House is setting 2009 funding appropriations in just a few days.

Please go to MyMigraineConnection, read that blog entry, and take action!

To read the rest of that blog entry, please click here.


Tuesday, March 11, 2008

March Blog Carnival - Maintaining Friendships for Those WIth Migraines and Headaches

Diana Lee at Somebody Heal Me has done us all a great service by establishing a monthly headache and Migraine disease blog carnival. This month, it's being hosted by Teri Robert at MyMigraineConnection.

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and Migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us.

Take a look at the March Blog Carnival - Maintaining Friendships for Those With Migraines and Headaches.

Thursday, March 06, 2008

The NY Times Migraine Blog... What the ****?

Last month, the NY Times started a new blog in their Opinion section, "Migraine, Perspectives on a Headache."

The blogging world seems to have gone wild talking about this blog, linking to it, praising it. What the hell? Yes, it's wonderful to have more attention paid to Migraine. This blog MAY help raise awareness. Still, I have some issues with it and the response to it:

  • The subtitle, "Perspectives on a Headache," is just plain wrong. Migraines aren't headaches, people! Yes, it's that simple. They're NOT headaches. As I've seen Teri Robert say, "Migraines are a flare-up of Migraine, a genetic neurological disease. The headache, if there is one, is but on SYMPTOM of a Migraine attack. You can have a Migraine attack without having a headache."
  • In "About This Blog," they say, "More than 28 million Americans..." Well, hell! If you're going to start a new blog, why not start out with current statistics. That 28 million figure is at least seven or eight years old, maybe older. Based on WHO prevalence statistics and current US Census data, the correct figure is more than 35 million Americans.
  • Why call it "Migraine" when one of the primary writers, Paula Kamen, doesn't have Migraine disease? She has chronic daily headache. CHD is horrible, but it's not Migraine disease.
  • If this blog is supposed to really address Migraine, there are at least two people missing from the writers on this blog -- Michael John Coleman of MAGNUM and Teri Robert.
  • In all the rush to pay attention to the supposedly all-important NY Times, people are missing out on a great deal of blog entries and articles that are just as good, if not better.

Come on, people! Let's put things in perspective. The new kid on the block shouldn't eclipse all the other players. The NY Times blog is no longer new. Let's get back to business!