Sunday is often a day when I try to plan my week and what I'm going to write about Migraines and related issues. Maybe it's the holiday season or realizing that 2011 is nearly over, but today, I find myself also thinking about people who have Migraine disease, the treatments available, what we do and don't understand about Migraine... the big picture and the smaller picture of the individual Migraineur.
I spent most of yesterday online and on the phone trying to help and encourage other Migraineurs who are especially frustrated right now. They're really hurting, and many of them are also frustrated that their doctors don't know what to do next. Some are frustrated that we don't have better treatments. Some are in that terrible place in their minds where many of us have been, that place where we feel like giving up on doctors and treatments and trying to "just live with it." My heart goes out to every one of these dear people. Heaven knows I've been there too.
It's a bit ironic that the two qualities my mother always said would be my downfall have probably been the very qualities that have kept me from giving up when it comes to my Migraines - stubbornness and temper. I'm just too stubborn to give up, and getting angry was the push I needed about 10 years ago when I first sought care from a Migraine specialist. I was angry with the Migraines, and I was angry with the doctors who offered me platitudes instead of help.
Being stubborn and getting angry keep me going until I met Dr. William Young at the Jefferson Headache Center. Within six months of my first appointment, we were making progress controlling my Migraines. They were still a big problem, but still, it was progress. Neither of us gave up, and we eventually got to the point where I usually had at least a month between Migraines, sometimes longer. Now, I'm not saying that anger is necessarily a good thing. What I am saying is that we shouldn't give up or give in.
An extremely difficult issue I see Migraineurs facing is their families and friends not understanding Migraine. They feel isolated. They feel guilty. Just yesterday, someone wrote to me:
"I wish I could learn to have your attitude...unfortunately I don't feel the people around me really understand migraines and I still carry the guilt of having them. People just don't seem to want to really understand what they're all about."
Wow. I've been there, haven't you? Here's where I am with that - I've learned what friendship really is, and if people are our friends, they'll make the effort to learn a bit about Migraines, understand, and support us. If they won't do that, you know what? They're really NOT our friends. Oh, it's not easy to get to the point of looking at things that way, but let me tell you something. In the end, the person I absolutely have to live with, the person who absolutely needs to be my friend is me. That means I'd darned well better like and love myself, and doing that means recognizing if other people are true friends or not. I'd rather have one good friend that lots of so-called friends who are only there when I'm feeling well and can do things with them and be a lot of fun. Real friends stick with you no matter what.
Another issue I came across yesterday was someone who commented about "Big Pharma" not developing new treatments for Migraine. I can understand that way of thinking and have had some issues with pharma myself. Still, I have to say that I can't blame pharma for the lack of new Migraine treatments. Pharmaceutical companies are for-profit companies that have shareholders and boards of directors to answer to. They're not nonprofit charitable organizations. To develop new Migraine treatments that go beyond what we have now, researchers need a clearer understanding of the pathophysiology of the disease, how it works and what goes on in our bodies during a Migraine. That kind of seminal research isn't the kind of research that pharma companies can undertake. It's the kind of research that's funded by the government, mostly through the National Institutes of Health (NIH). We're not going to see new and effective Migraine treatments until more of that basic research is conducted. That's why the Alliance for Headache Disorders Advocacy (AHDA) has been lobbying for increased research funding for Migraine and other headache disorders and is currently lobbying for Congressional hearings about the impact of Migraine.
Explaining the issues with new treatments and research funding started me thinking about Migraineurs and what we can do to help ourselves. Of course, we need to learn about Migraine and work with our doctors as informed treatment partners to develop the best possible treatment regimen. But until there's more research funding, it's going to continue to be more difficult than it needs to be. For example, did you know that there are no medications on the market that were originally developed for Migraine and headache prevention? Nope. Not a single one.
So, here's where I run into an issue that has me thinking for hours at a time without coming up with any answers...
On November 22, the AHDA set up a petition to Congress urging them to hold the first ever Congressional hearing devoted to MIgraine and headache disorders. That was 19 days ago, yet fewer than 2,000 people have signed this online petition. We've emailed over 25,000 people with information about the petition. It's also been Tweeted about and posted all over Facebook. It takes literally less than two minutes to sign it online. All a person has to do is go to the petition and enter their name, email address, and zip code.
I truly just don't understand this. Posted all over the Internet and over 25,000 people emailed about it, and fewer than 2,000 online signatures. I understand that people with Migraine aren't well, but if they're well enough to read email and visit Facebook, they're well enough to sign the petition. If we won't take two minutes to sign that petition, how can we expect other people to care enough to try to help us? That petition will be sent to members of Congress, and we'll be taking copies with us when we visit members of Congress during the AHDA's Headache on the Hill event in March. But I have to tell you -- unless people start signing it, Congress isn't going to pay any attention to the petition or our request. Why should they? We can stand there and tell them that more than 37 million Americans have Migraine, but how can we stand there and tell them that those Americans need and deserve better treatment when we can't get them to sign a petition? They'll laugh us right off Capitol Hill.
Can you help me understand this? If you've seen information about the petition but haven't signed it, why not? Leave me a comment telling me why you haven't signed it to help me understand, please?
If you haven't signed the petition, please sign it now? Just follow this link to sign the petition. After you sign it, a page will come up that helps you share the link via Facebook, Twitter, and email. Please share it with as many people as possible. If you're talking to others and want to share the petition link, here's one that's pretty easy to remember, www.MigraineAdvocacy.org/petition.
There are still other thoughts spinning through my head, but I think I've written enough for one post. Thank you for reading all of this.
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© Teri Robert, 2011
Last updated December 11, 2011