Many, Many Migraines and Finally...Hope

For sufferers of chronic migraines, it is strange how we have to accept that migraines are part of our lives, stealing hours from us, robbing us of time and missed family events, celebrations, and special moments. Being a migraine sufferer has become part of the definition of who I am. Anyone who knows me, loves me, is a friend to me, or a coworker might describe me in several ways, but would probably add…”she has these terrible migraines.”

I have them so often, sometimes 4-5 times a week. I was diagnosed with cluster migraines about six years ago after going to doctor after doctor, then neurologists, and finally to a specialty headache clinic in Washington, DC. I had every test run imaginable, MRIs, CT Scans, allergy tests, nutritional evaluations, eye tests, dental tests…it seemed to take forever. And then the results came back and there was nothing determined as the cause of my migraines, other than heredity—as my grandmother and mother both suffered with them, though in different degrees.

I have had them since middle school, but back in the beginning, I might have one or two a year, and they were serious headaches, but nothing close to what I have now. As the years passed, the frequency increased, and by the time I was in college, I was having several a month, and was usually in the ER on a fairly regular basis.

Year after year, things grew worse, and then miraculously I would get a reprieve and have only one a week, and the pain became more manageable. Also, the drugs used to treat migraines began advancing, and it felt like a miracle when I could take one pill (that wasn’t a narcotic) and feel my headache float away.

Back when I began having them, so little was known about migraines, and over the years, countless people have marveled over the suffering just a “headache” could cause. Unless someone had direct experience with migraines, or had a loved one with them, it was hard to imagine a headache being that bad.

I have been on every identified preventative medication for migraines, have tried any dietary restrictions rumored to have work, have scoured the health food stores for magic vitamins or supplements. I have read as many books on migraines and possible “cures” trying anything and everything with no success. About three years ago I just settled into the fact that this was my life, I had tried everything, and I was just going to have to manage.

And I have- to an extent. As I write this, I am on day 14 of a migraine. It has subsided after I took pain medication, then come back again and again. I have found ways to manage to work through pain and while taking whatever medication I have to. As I said before, it has just become part of my daily routine, and a part of who I am.

I had read and heard about Botox being used as a treatment for migraines. I started really looking into it last year, and the more I heard the more hopeful I became. When we moved and I found a new neurologist, he was amazed at the range of medications that I had tried and failed to have results with. He believed Botox was the answer. I was happy to have something new to try; something that had proven results with even the worst migraine suffers. For the first time in awhile, I felt hope.

And then, my insurance denied the treatment.

Botox was approved as a treatment for migraines by the FDA in January of this year. This isn’t some crazy experiment; people’s lives have been changed by this. I spent weeks arguing with my insurance company and being given one excuse after another, with firm and final answers that they wouldn’t pay for the treatment.

To say I was devastated is an understatement. I was so angry that something that could possibly help, that was a proven and approved treatment, was being denied to me. I inquired about paying out of pocket, and the cost ran about $2000. It wasn’t in our price range, especially since it is a repeated treatment that you need to do about every three months.

I had an appointment this week with my neurologist to try and figure out what to do next. The nurse came in ahead of him and said I needed to fill out some paperwork. Then she smiled and said, “We have some news. Dr. M can pick three patients to treat with Botox for FREE…and you are one of them!” I was in tears. I squealed, a little loudly. I felt as if I had won the lottery.

Basically, Botox is working with patients that have been denied by their insurance companies for treatment for migraines. They do the first round free, and then submit all the records during and after treatment to the insurance companies to prove the treatment is working. Once a successful personal treatment plan is issued to my insurance company, there is a higher likelihood that they will approve ongoing treatment after that.

I can honestly say that I think of my grandmother every single time I have a migraine. My mother has told me stories of how my grandmother would get what she called “sick headaches” and lay in bed for 5-6 days in agonizing pain. No one seemed to know what to do, and in the tiny, rural place she lived, there just wasn’t access to great medical care. She basically just had to suffer through them until they had run their course. I cannot imagine. The pain I have had at times in the ER, just waiting a few hours until they give me painkillers has seemed unbearable. To go for days and days like that…I don’t know how she did it.

So, in about 10 hours, I am headed to my neurologist’s office for the injections. There are 31 of them—most in my head, some in my neck and shoulders. I am a big baby about needles, but this is so different. I am almost too excited to sleep. For the first time since the early 1980’s there is a good chance I could go three months without a migraine, or at least with a significant decrease in the number of them. I am so hopeful, and feel so fortunate that my doctor made this happen for me.

I know so many migraine sufferers, and several of my friends are waiting to see the outcome and hoping for good results so they can consider this treatment. I will post the continued results here. And if you have good insurance and are a chronic migraine sufferer, look into Botox for migraines.

For information on the FDA's approval of Botox treatment for migraines, click here.
Artwork by Eric Reber.