I think somehow, there needs to be more doctors and experts talking about migraines to the world. There's not much on the TV concerning Migraine disease. It's not even looked at as a disease that I see. I beleive people need to know, so they understand it's "not just a headache." I do have the article, "For those who don't get it." But, I think for families and everyone............it needs to be addressed more.
I mean I for one was treated like crap because I couldn't work with them. I had to quit, but I was also ridiculed for having migraines. That's not right. I don't think it's fair for anyone to go through that. Even with FMLA, there are still co-workers and bosses that "just don't get it", and treat migraineurs, like it's nothing. They advertise diabetes and and breast cancer, and depression medication, but they really need to have more information about "what" migraine disease means.
Denise,
I agree that it would be wonderful to have more awareness, but how would you propose this happen?
There are big advertising campaigns and stuff for breast cancer because it kills people and because some very famous people have had it and gotten involved.
We see more ads for diabetes testing supplies and drugs and depression drugs partly because the NIH funds a lot more basic research in those fields, which in turns, gives the drug companies the basics they need to develop more drugs.
But here we are, with NOT ONE SINGLE DRUG ON THE MARKET THAT WAS ACTUALLY DEVELOPED FOR MIGRAINE PREVENTION. NOT ONE. And the four that are FDA approved for Migraine prevention (which were originally developed for something else) are all now available in generic, so the brand name companies don't advertise them any longer.
Hopefully, groups like the AHDA will be successful in getting more research funding.
As for information about what Migraine disease is like, there's more of it on this site than anywhere else on the Internet. Teri, Nancy, and now Megan write and write and write. I think the rest of us can help by getting people here to read it.
Other than that, what would you suggest? I've seen you talk about this more than once, but haven't seen you make any suggestions about how to address the problem.
Namasté,
Abi
Actually, I remember emailing Teri about it, but I don't remember her getting back to me. It's really a big question I guess. I think someone like her who is over this forum, and maybe the doctors involved in this new book she talks about, should be the ones to go on a talk show, or TV show.Or, DR. Krusz.
If my memory is correct, There were more people that died from a stroke last year, "that was brought on by migraine" than the number of people killed by hand guns. Now, I read that somewhere on this forum. So, if that's the case, than this "invisiable" disease should be looked at more seriously. For one thing, even though you can't prove you have migraines, shouldn't your medical history with doctors, and neurologist be enough? I mean why would we want to go to the Urgent care, ER's and neurologist, and specialist for the heck of it. We are desperate for help. So many people want to give up and die. I've read and heard that some people take their own lives because of migraine disease. It's a disease, and it should be put out there someway for Obama and all the world to see. He needs to speak on that one.
My suggestion is get enough people to sponser the story, in a book, or televised, and get some people who have suffered with it many years like me, and tell the story. Something's got to give. I've been put on depression drugs for migrianes, and now after 15 years at least, I have to take the depression medicine, or begin getting depressed and not really about to be myself. I cry, and it's terrible. With the antiseizure drugs, they have a lot of side effects but that's all that is available to us. And triptans are wonderful for people who can take them,.........but I can't. I couldn't breath hardly, I was dizzy sick, and my throat and chest was so tight. So I finally went off them. I tried them all. NO luck. So, I'm still trying......not giving up for sure. I know I'll beat it one day. Just wished this world knew more aobut this. I'm going to express myself this week on Webanswers.com and Yahooanswers. And give them the website for "The Ones Who just Don't Get It". That may help.
I just want more and more people to say "Hey, I know about migraine disease, that's something serious. Because it is. It effects your life, well-being, your family's life, and spouse's life. It makes you fatigue and left tired and drained, and then doctors tell you to exercise, and that will help yor migraines. Well, excuse me, I would do a jumping-jack if my head wasn't comletely pounding and ready to explode!
Teri has always gotten back to me when I've emailed her, but I can see how one could slip through the cracks. I mean, think about who she is and how much email she must get.
You're preaching to the choir here, my friend. I don't think anyone here would disagree with you that more awareness is needed. There are people who have been trying to raise awareness for years. They've been saying the things you're saying for years.
But the question that always remains is -- How do we get the word out?
Namasté
Abi