10/30/2015 05:15 PM EDT
Related MedlinePlus Page: Migraine
Photo: Daniel Vermillion
For more than 20 years, she has also been one of the over 1 in 10 Americans who face the often-debilitating intense pain of migraine headaches. The wife of U.S. Senator John McCain, she has dealt with the problems of migraines while very much in the public eye. Now she is working to raise public awareness and understanding of migraines and increase support for research. Recently, Cindy McCain spoke with NIH MedlinePlus magazine to discuss migraines.
"I've described it publicly before as, for me, like an axe in my forehead."
When did you first start getting migraines, and how long did it take you to get a diagnosis of migraine?
I realized something was way wrong by the time I turned 40, and the intensity and the number of headaches increased. I had had headaches before that, but it took until I was probably 45 before I got a real diagnosis that I was having migraines.
I encountered, as many women do, doctors who said, "Yeah, go home and have a drink," or "You're just stressed out," or any number of things. I heard many things coming out of physicians' mouths, and it took me a while to get a real solid diagnosis.
Can you describe how it feels when you get a migraine?
Yes, I've described it publicly before as, for me, like an axe in my forehead. Obviously, it's a very intense pain, and I get an optical portion, too. I sometimes have an optical migraine that causes me to go temporarily blind in one eye. Not all the time though. Sometimes the optical form of the migraine is like looking through the wrong end of a telescope, where things are getting smaller and smaller.
I don't have a sound issue. I do have light intensity problem, but sound doesn't bother me that much.
Are there specific triggers that cause your migraines?
There are certain triggers. If I even breathe a vapor from a red wine, I get a migraine. But the older I get, that's not quite as much of a trigger. Chocolate can sometimes set one off, although fortunately not very often. Perfume is what will really send me over the edge with a migraine.
How do you manage your migraines?
Like everybody, I have a certain way I do it now. All migraines are very individual, and what works for me may not work for somebody else. I have a fairly good management system. If I get a particularly nasty migraine, I can pretty well manage it at home.
The older I get, the migraines seem to be taming down. I still get them but not with the frequency I did. With migraines, you learn that some days you're not going to be able to do anything.
What is the message you'd like to send to others who have migraines?
What I tell people who ask about migraines is I have great faith in what's going on at the National Institutes of Health and other research.
As migraine sufferers, we have been offered many, many kinds of drugs, but there were not drugs specifically designed for migraines. They are something developed for other conditions, but happen to help with migraines.
I, like millions of others, am looking for a cure that is not something developed for a different problem—something designed specifically for migraines. Something that addresses how we suffer and the variations in the way we suffer.
I know you've spoken about the stigma attached to migraines. What are your thoughts on that and suggestions on how to combat it?
Oh, the stigma is the worst. It begins with the physician who tells you you're just a stressed woman. Also, for me, my life is very public, and all of a sudden I can't make a public appearance because of a migraine. People are very fast to think, "Well, it's something else" or "She's just weak." Of course, none of that's true. Many others have encountered the same thing. There is a stigma to it, because there's a lack of understanding about what a migraine is.
People have said to me, "Well, it's just a headache." I say "Oh, no." It's much more than that. They have the idea that you can plow through this, and you can't do it.
Migraines are the leading cause of lost work time and performance around the world. And there's no cure for it. There's really nothing for it yet.
I do tell people who contact me that if you don't like what you heard from one doctor, just press on and find a doctor who will listen to you. And actually understand what's going on.
I think the best thing to combat the stigma is articles like this one. And talking about it. There are many people out there who suffer and are afraid to talk about it because, for instance, they're afraid they'll lose their job. The more we talk about it, then the better the understanding.
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