Spotlight: Debbie Fister

Spotlight: Debbie Blog: Down the Rabbit Hole: A Journey of a Migraineur Blogging since: March 2007 Migraines: since childhood. Diagnosed with sinus headache in my late twenties. Diagnosed with migraine in my mid thirties. Work: I have an editing business, Precision Writing Service, and edit papers, dissertations, and theses for students. Volunteer: At my church, I work on committees and head up a Secret Sisters ministry in which women are paired and we pray for each other.

What made you start your blog?

I thought I could share my story with others. I love to research, to find underlying causes or truths. When it comes to migraine disease, the research is woefully underfunded and there’s a lot of inaccurate information.

What topics are you working on?

The biggest media spin is around the new drug Treximet. It’s a combination of naproxen sodium (500 mg) and sumatriptan (85 mg). This is not a truly new drug. Many migraineurs already take a triptan and an NSAID at the onset of the attack. Treximet gives migraineurs the convenience of having both in one pill. But what if you’re sensitive to NSAIDS? Taking the two drugs separately lets you adjust the dosage of the NSAID.

Also, there’s inaccurate information about compact fluorescent lights (CFLs), and the Energy Independence and Security Act of 2007. Many have said that incandescent blubs will be banned after 2012. But the truth is that incandescent and fluorescent bulbs will have to reach a particular level of energy efficiency by that date. Here's a post I wrote about the subject. Right now, I’m researching migraines and pregnancy.

Why do you say migraine research is underfunded?

Migraine research is currently funded by private grants from the Migraine Research Foundation (MRF) and public grants from the National Institutes of Health.

An editorial in Cephalalgia called “The Long Drought: The Dearth of Public Funding for Headache Research” says NIH funds for migraine research is underfunded. By researching the federally funded biomedical research grants in the Computer Retrieval of Information on Scientific Projects (CRISP), the authors found that only $13 million annually goes to migraine research - less than .05 percent of the NIH budget. Compare that to the $276 million of NIH funds that go to asthma research.

What can we do?

We should support the MRF by organizing a national walk for migraine research. We should also pressure Congress to allow the NIH to earmark more funds for migraine research.

Has the purpose of your blog changed?

I used it originally to chronicle my experience with migraines. But after researching the disease, I found that educating others is a larger purpose.

Many people in my life misunderstand migraine disease and I’m hoping that others will benefit from what I write.

Whom do you admire in the migraine community?

Drs. Stephen Silberstein and William Young have improved many people’s lives as the directors of the Thomas Jefferson Headache Center. Dr. Young was my attending doctor there. I first heard of allodynia from Dr. Young. That explained why my “hair hurt” when I got a bad migraine or why my head hurt when I washed my hair.

What do you wish you had known at the start of this journey?

That I had migraines and not sinus headaches. When I lived in Nashville, I’d get these awful one-sided headaches when the weather changed. My doctor said they were sinus headaches, so I treated them with Excedrin and antihistamine. When I moved to Rochester, my primary care doctor tried ergot and that aborted the migraine. That worked a little while, but then came Imitrex, my savior. I had no qualms about giving myself a shot. When my migraines increased in frequency and severity, we tried preventatives: beta-blockers, anti-convulsants, and others. The beta-blocker worked well, but I had to discontinue it because I have a severe allergy to bees.

To steer clear of a misdiagnosis, I urge people to get a second opinion. If your doctor ever says a one-sided headache with photophobia, phonophobia, nausea, or vomiting is a sinus headache, go elsewhere. Many doctors say that sinus headaches are all migraines.

What do you want people who don’t get migraines to better understand?

That there’s a person struggling behind the disease. I have friends who ask about my head and are relieved when I say I don’t have a headache. I wish they’d ask more probing questions like, how are you coping? Or, what are you learning? How about, how can I pray for you? God is teaching me wonderful lessons through all this, but no one asks about that.

How are you coping?

Thanks for asking. I’m holding my own. I haven’t had an ER migraine in two months. But I have one nearly every day and it’s wearing. I also have chronic back pain from an auto accident. I’m tired of all this and want my life back.

I know, of course, that I have to adjust to a new normal life by grieving my losses and looking forward. But there are some things I just can’t do anymore, like work. I was in a career with migraines from 1999-to 2001; I taught a class, recruited employers, helped students, went to meetings, and planned job fairs. Now I work at home as a freelance editor and do the best I can depending on how I feel. Today is a good day.

What are you learning from this?

That life is difficult. I don’t get everything I want. I can’t control everything. There are people who have endured more pain and loss than I. Be grateful; appreciate the good days. Pain can be a wake-up call for me to change something.

Have your professional skills helped you manage your migraines?

My counseling skills have helped, but sometimes it’s difficult to apply these skills to myself. However, when I blog, I can see what I write and really listen to it. It’s as if I’m the client when I write, and the counselor when I read it.

My writing and research skills help me find the truth. I want my blog to be accurate and not just a reaction to a news story or announcement that will negatively affect migraineurs. Take the Energy Independence Act. Many bloggers, online media, even the government, were claiming that this Act bans or phases out the use of incandescent lighting. But once I read the Act, I found that’s not the case.





Learn more about Debbie.

Who inspires you? Let us know who we should feature in our next Spotlight Interview. Write us at community@wegohealth.com