Spotlight - MaxJerz of Rhymes with Migraine

[Sarah]

Spotlight: MaxJerz Blog: Rhymes with Migraine Blogging since: April 2008 Migraines since: Early teens Work: Intern architect. I should have my architectural license in about 18 months, migraines permitting.

What made you start Rhymes with Migraine?
I started RWM in mid-April of this year - the first true blog I've started. I'm a regular reader of a number of migraine and headache blogs, and I decided to add my voice to the conversation.

What’s the goal of your blog?
I wanted to bring more attention to a sorely misunderstood disease. I have both chronic daily headache and chronic migraines, which for me means continual pain. Many chronic migraine sufferers think they're alone - indeed, I felt this way for a long time - so I wanted to share my story.

What motivates your writing?
Blogging about migraines has been a great outlet for the frustration, confusion and hopelessness that I deal with on a daily basis. Letting it all out is amazingly therapeutic, and the support of other migraineurs helps keep me going.

What gives you hope?
My fellow migraine bloggers. Just being part of a community that lives publicly with this disease and tries to educate the public is a huge step toward better understanding and treatment.

But when I look at how far we still need to go, it's hard to keep the faith. I still manage to work full time, and many of my coworkers are woefully uninformed about migraine disease, despite my best efforts. I can't tell you how many times I've heard, "Oh, I get headaches too," or, "Can't you just take some Advil?" Yet these same people wouldn't dream of belittling a diabetic's disease. Why do migraineurs still have to live with this stigma?

How are you treating your migraines?
I’m currently trying a new preventive, Lyrica. This is the seventh preventive I’ve tried since early 2007; the other six either didn’t work or caused intolerable side effects. I also had my first Botox treatment in June, which was somewhat successful. My doc and I are hoping the second treatment, coming up in September, will do a better job, especially when combined with the Lyrica. I do take a number of abortives and anti-nausea meds to help when the pain and nausea get too awful.

I've also developed coping strategies – the most important one is doing a daily 30-minute relaxation exercise before I go to sleep. Without this relaxation, I'm an insomniac, which worsens my migraines. I've recently started tai chi as well, to get more exercise into my routine, and I’m a dedicated user of lavender and peppermint aromatherapy. Acupuncture, while great for my insomnia and vertigo, didn't do as much as I’d hoped for my migraines, so I stopped treatments after three months.

What treatment research interests you these days?
I’m most interested in the non-drug, device- type treatments. At the American Headache Society conference this year, researchers presented very promising research on transcranial magnetic stimulation (TMS) and occipital nerve stimulation (ONS). Both look at different ways to interrupt the migraine process. The hope is they’ll be more effective than current drugs with fewer side effects.

Since I often have bad side effects to medication, I would love to find a non-drug intervention. Teri Robert attended the AHS conference, and she published very readable summaries of the current research on TMS and ONS on MyMigraineConnection.

What do you wish someone had told you when you first started dealing with migraines?
What I had! I've suffered from "sinus headaches" and allergies for as long as I can remember, but I wasn't diagnosed with chronic daily headache and migraine until five years ago at age 20. Only in the past year have I learned that I have a genetic neurological disease with no cure. Once I finally accepted that migraine is a genetic neurological disease with no cure, was I willing to invest time, effort and money into my treatments.

Any horror stories?
My last headache specialist was a real turkey. One weekend, I had developed new and frightening symptoms - sudden left-sided tingling - and after a call to 911, an exam by the paramedics and a discussion with the on-call neurologist, we determined I wasn't having a stroke. I called Monday to let her know what had happened. She didn’t call back until the end of the day on Tuesday, when she let me know that my symptoms were “probably related to my headache.” I was furious. This woman was supposed to specialize in migraines, and couldn't even use the correct terminology!

Any advice for someone newly diagnosed?
There’s so much the medical community doesn’t understand about migraines. There are many treatments, and something will work for you. It's just a matter of finding it, and nurturing enough hope to get through the tough times.

What is the best feedback you’ve ever received?
I did a post in May about communicating with doctors and developing a "migraine resume" to bring appointments. I got a lot of great feedback from my forum buddies at MyMigraineConnection, and my new headache specialist was impressed and thanked me repeatedly during my appointment.

How have migraines affected your social life?
With my migraines so out of control, it’s difficult to keep social commitments. After-work cocktails, spontaneous movie outings, shopping sprees with friends – all out of the question for me. Chronic migraines force me to plan my social time very carefully. I’m more likely to invite a friend over than go out. I feel like I miss out on a lot.

What about your career goals?
I had planned to start my architecture exam this fall and finish all of the licensing requirements by the end of 2009. I’ve had to postpone that. Right now, it’s all I can do to work 40 hours a week. I don’t have the energy or mental capacity to add studying to my schedule. I’m also pushing off grad school as well, which I’d planned to start once I got my license. I’ve also recently resigned from a prestigious, but time-consuming, volunteer position with my local professional architecture organization.

This may not sound like a big deal, but it’s very upsetting. I’ve been an overachiever my entire life. But once my health gave out, I had to put my high standards aside and learn to live as an underachiever. I hate it. This is one of the parts of migraine disease that is very difficult for me to accept.

Does anything actually rhyme with migraine?
Great question! Maybe if we can find a good answer to that, we can find a cure!


Learn more about MaxJerz.

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[Ellen S]

Great spotlight, good things to think about! MJ is awesome... Don't miss her blog