Have you told the FDA how important it is to include migraine in their new program? Tomorrow’s the final day to do so. Your participation is so crucial that I’ll beg you with lots of exclamation points and all caps: PLEASE, PLEASE SUBMIT YOUR COMMENT TODAY!!!
How? Just go to the FDA’s Prescription Drug User Fee Act Patient-Focused Drug Development Public Meeting and Request for Comments page and click the blue button that says “comment now.”
Add punch to your comment with these statistics and facts that Teri Robert compiled. In her in-person comment at an FDA meeting, she also included this startling information:
- According to a World Health Organization analysis, migraine is responsible for more lost years of healthy life in the U.S. annually than epilepsy, multiple sclerosis, ovarian cancer, and tuberculosis combined.
- Also according to that analysis, severe, continuous migraine is as debilitating as quadriplegia.
Migraine is unlikely to kill those of us who have it, but it sometimes feels like death would be a better alternative. Whether chronic or episodic, migraine wreaks havoc on our lives and our families. It deserves to be recognized and studied with the same resources as any other life-changing illness.
Help Make Migraines Visible, the theme of this year’s National Migraine Awareness Month, sponsored by the National Headache Foundation is full of opportunities for you to learn more about migraine* and a chance for you to help others understand what migraine is and what its like to live with this oft-dismissed disorder. This isn’t a sit-back-and-watch awareness event, but one that engages those most knowledgeable about life with migraine — patients! — to help spread the word. You don’t have to commit to anything major, just speak up through social media or your blog, if you have one. Patient advocates have already done a lot of the leg work to get you started!
- Call to Action! 50 Tweets for Migraine Awareness: This is soooo easy — all you have to do is copy and paste! Patient advocate Ellen Schnakenberg has created 50 different tweets of migraine facts, complete with hashtags, for you to copy and share on your preferred form(s) of social media.
- National Migraine Awareness Month Blog Challenge: 30 blog prompts for the 30 days of June, created for you by the folks at Fighting Headache Disorders, Teri Robert and the aforementioned Ellen. If you don’t have a blog, share your thoughts through Facebook. At the very least, check Fighting Headache Disorders each day for the blog prompts and which bloggers have written posts for that day. Share the most inspirational or helpful posts on your social media accounts to let friends and family learn a bit about migraine. Visit Migraine.com, where one of the site’s patient advocates, including moi, will be responding to a prompt each day.
I’ll be responding to prompts when I can, tweeting migraine awareness facts, and asking you all questions on Facebook. Follow TDHblog on Twitter and like The Daily Headache on Facebook so you don’t miss a bit!
*NHF will host four online chat sessions with experts and a free educational event in Chicago, and will be re-introducing its Migraine Masterpieces art contest.
Update 10/28/2018: Midrin and Midrin equivalents have been completely discontinued under FDA orders. (Learn more in this article: Say Goodbye to Midrin and Midrin Equivalents.) You may still be able to get what you need from a compounding pharmacy.
An equivalent to Midrin, which is made of the exact same ingredients as Midrin was, is now readily available. My pharmacist called to tell me the news and I had the pleasure of letting my headache specialist know.
Teri Robert of Migraine.com found that Macoven Pharmaceuticals makes the Midrin equivalent currently available. If your pharmacist doesn’t have it in stock, give them Macoven’s contact information and they should be able to order Isometh/Dich/Apap capsules (that stands for isometheptene mucate, dichloralphenazone, and acetaminophen, the components of Midrin). If not, a compounding pharmacy can still make it for you.
Though a Macoven employee told Teri that the company is working with the FDA to keep Midrin available, the fact stands that the drug has not been approved under the FDA’s current drug approval requirements. Unless the FDA changes the policy or a company spends the money on drug trials (which is highly unlikely), there’s no guarantee it will stay on the market.
Thanks for your sleuthing, Teri.
Teri Robert and John Claude Krusz, a neurologist and headache expert, have been hard at work on answering patients’ questions about migraine and other headache disorders. You can learn a lot by poking around in the previous answers or ask your own questions.
“Ending an affair” is one of the top search terms that direct people to the blog. I know it’s because of my impassioned goodbye to peanut butter, but it makes me laugh every time I see it. However, I get no pleasure out of seeing the other search terms that lead people here. They remind me of the pain (both physical and emotional) and confusion that so many people with headache suffer.
I, of course, hope that people find what they’re looking for when they arrive here. But the blog is primarily driven by what I’m thinking about and going through. It’s not always the best place to find answers to specific questions.
If that’s what you’re looking for, check out Ask the Clinician on About.com’s headache section. In almost four years of answering questions, Teri Robert and Dr. John Claude Krusz have compiled more than 1,200 responses to readers’ questions.
Recently, Teri created a list of the top 50 questions they have received. Topics include closure of a hole in the heart to treat migraine, children and migraine, managing diabetes during a migraine, exertional headaches, and if there’s a relation between blood pressure and headache.
That’s only a small sample. I suggest starting with the top 50 and, if you don’t find your answers there, visiting the archives for more information.
And if there’s a topic that I don’t cover on the blog that you’d like to hear about — whether it’s coping, news, treatment or anything else! — send me an e-mail. I’ll research and post about it.