TODAY   |  June 27, 2013

Cindy McCain: Migraine pain is ‘indescribable’

Approximately 36 million Americans suffer from debilitating migraine headaches, but only one drug class has been designed and approved to treat them. One woman shares her story, and Cindy McCain, wife of Sen. John McCain and a migraine sufferer for 20 years, talks about bringing more awareness to the painful condition.

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This content comes from Closed Captioning that was broadcast along with this program.

>>> if you are one of the 36 million americans suffering from migraines you know how painful they can be. in a moment we'll talk to cindy mccain about her struggles with them, but first what it's like to live with the painful condition. joan 's journey with migraine pain began 30 years ago in college. eventually her migraine headaches got worse.

>> i would wake up with a crow bar in the back of my head, excruciating pains.

>> reporter: over the years joan tried 20 different medications, prescription and over the counter , and consulted eight doctors. the president of the american migraine foundation and professor of neurology at the mayo clinic in phoenix is now joan 's physician.

>> it's impossible to function when you're racked with that amount of pain.

>> reporter: according to the american migraine foundation and the american headache society , approximately 36 million americans , roughly 12% of the population, suffer from migraine. annually, 6% of women and 18% of women get them. more than 15 genetic mutations have been identified that render people susceptible to migraine, but only one drug class has ever been specifically designed and approved to treat migraines.

>> if we can unlock more genes that are responsible then that will start to open up new targets for very highly selective and specific treatmen treatments.

>> reporter: after years of searching for answers joan has finally found relief through botox injections approved by the fda in 2010 for the treatment of chronic migraine. it made all the difference just like a veil of pain you just live with and you don't realize you have it was gone.

>> cindy mccain the wife of senator john mccain has suffered from migraines for more than 20 years and is now one of the leading voices for migraine research. mrs. mccain, it is good to see you. thank you for being here.

>> thank you for having me.

>> you know what this pain is. i know you want to give a voice to it. can you even put it into words?

>> well, i think her talking about it like a crow bar in the back of your head, to me it was always like a vise or a nail in my forehead. it is indescribable to those who have never suffered.

>> do you think there is a stigma with migraines where people still don't want to acknowledge okay i suffer from this or people who don't have migraines suspect you're making it up, it can't be that bad?

>> right. that is part of the whole campaign we're starting is a large part of this is the stigma. people are afraid to talk about it. if they do, they're misdiagnosed. their co-workers think they're faking it. their family thinks they're faking it or they're just, you know, whatever. it's terrible. it's awful.

>> you've talked about your own family and when your kids were little and you weren't able to do things with them sometimes it was hard for them to understand, hard for your understand to understand sometimes.

>> absolutely. i think it's hardest on family members because they want so much for you to feel well and they don't understand it. so that's a large part of why i'm here and i'm really, really excited about this.

>> i have to ask you about the campaign. i cannot imagine a set of factors more upsetting for a migraine sufferer. you've got the lights, the loud noises, the stress going from rally to rally. were there moments during the 2008 campaign where you were really feeling that pain?

>> oh, yeah. in the clips from back when i had sunglasses on that is when it was happening big time .

>> that was the tell tale sign.

>> that was the sign.

>> let's talk about this campaign. you call it the 36 million. speaking of the 36 million americans who suffer from migraines what are you hoping to accomplish?

>> well, number one, raise awareness. number two, we are the -- of all of the diseases and factors in all of this we're the lowest in funding, federal funding for research, which is most important in this. we -- $16 million for something that affects 12% of the population. it affects our economy. it affects daily life. it affects our school children. everything is involved in this.

>> are you excited by what you're seeing in the research? i was very amused to see that botox is better. it's not just for wrinkles. it helps some people with migraines.

>> that is the problem with migraine meds. they were developed for something else. we're kind of the child that gets the left overseas in migraines. what we want to do is not only focus the research on new meds for this but find a cure. we're very close to that right now but we certainly need federal funding .

>> well, cindy mccain , we know you to be an advocate and most recently a new title, mother of the groom.

>> i know.

>> congratulations. how is the wedding? your son jack got married.

>> it was fun. we had a great time. he was married in san francisco . he is a navy pilot and deploys on sunday again.

>> wow.

>> for a third time.

>> our best wishes to him. thank you for being here. we appreciate it.