"Sleep" by Nick Beery ©2007, published in Migraine Expressions

I still remember what I later recognized as my first migraine attack. I was 16 years old, spending a couple of weeks with my family at my aunt’s winter mobile home in Bradenton, Florida. Only it was summer and it was hot.

Blinding head pain – I had never felt anything like it before – and feeling sick to my stomach sent me to the little bedroom to lie down. And there I suffered in silence, which I continued to do for too many years.

I’m sure my mother asked me what was wrong and tried to help, but I don’t recall many other details of the day. I do remember being frightened but thinking it was the flu or the smothering heat and humidity.

What I recall about my early migraine years are intense but infrequent attacks that I could usually sleep away. The more severe migraine vampires that have sucked life out of me for so many years started visiting in my early 20s.

But with all that has passed, I have not forgotten the day and the event that began my monumental migraine journey…

**This post is part of The Health Activist Writer’s Month Challenge at WegoHealth
There is a prompt for every day of November, and on this, the 26th day, I finally posted!

***

Migraineroes!!!!

***

Migraine + Heroes = Migraineroes (mi-grun-e-roz)

I am one, are you?

No more MOH!

But my focus for this post is on a term used in the medical field and migraine community that I find just as irritating – “Medication Overuse Headache (MOH).” I’m sure whoever coined this label for previously termed “rebound” migraines/headaches didn’t mean to offend anyone. It’s a simple phrase describing migraines/headaches that return or rebound once a medication dose wears off and your body tells you it needs more. (Not a medical definition, just the way I think of it.) Teri Robert has an excellent article here.

This becomes a vicious cycle of chronic migraines or headaches until you manage to break the cycle of pain – medication – pain again – medication again – pain again, and so on. I went through this process of withdrawal a year and a half ago.

I believe my migraines transformed with the onset of menopause and became more frequent while a bit less intense before I started taking medication more often for them. Eventually, I was in a rebound situation. I had taken Fiorinal and sumatriptan since Imitrex arrived on the scene in 1991 and not had any rebound or dependency issues prior to menopause. My migraine pattern has usually put me at the borderline of chronic, usually right at 14 or 15 days of migraine a month with breaks between episodes.

Now to my point: the phrase “medication overuse headache” carries a subtle implication that once again, the patient or migraineur is guilty of doing something wrong — of taking too much or misusing medication. Once more we appear to be at fault. We don’t intentionally overuse medication. I didn’t use any more than what was prescribed for me, and if anything I was overly cautious, especially with Fiorinal.

When I was first prescribed Imitrex, the only limit on it was not over 300 mg per 24 hour period. I asked my doctor if it was safe to take on a long-term basis or even a few days in a row for an extended migraine attack. I was told yes, that it was a very safe and “clean” drug. Sometime later, the 24-hour acceptable dose was lowered to 200 mg, but I was never given any other recommended limitations – until the last two-three years.

So, should we call rebound migraine/headache “medication overprescribed headache” or “medication oversold headache” instead? Now that it’s become known and publicized that taking these meds more than 2-3 days a week can cause problems, it seems we can be careful not to blame the migraineur, no matter how subtly.

Stigma — in many ways we perpetuate it unintentionally ourselves and in the migraine community. So one thing I will do to take charge of my migraines in 2011 – and help lessen stigma – is to not use the term “medication overuse headache (MOH).”

Oops… make that two things, because I’ll never have rebound migraines again, either!

This post is part of the January Headache & Migraine Disease Blog Carnival hosted by Teri Robert at Putting our Heads Together, and the theme is: Taking Charge of Our Migraines in 2011.

Near Cross Creek, FL (c)2010

Absolutely and of course I am grateful for my family, my husband and children, my birth-extended family, and my husband’s family. Without all the family love and support I am so fortunate to have, I cannot begin to imagine how different my life would be. Then there are friends, those who have touched my life briefly and those who have stayed a lifetime, for which I am thankful.

My daughters took a happiness course in college, and one of the ways to feel happier is to keep a gratefulness journal, each day recording five things you are grateful for. This I did for a brief time on paper, and I still try to make mental note of at least one thing I’m grateful for every day.

But here I want to focus on targets of gratitude in my migraine life:

1) Finally after my 40-year war with migraine, we are seeing the kind of research and studies that have been so desperately needed for so long! And two different migraine-related genes have now been identified, confirming that it is a genetic disease. These are phenomenal developments for people with migraine worldwide.

2) A wonderfully helpful and supportive migraine community is flourishing online with migraine and headache organizations such as the Migraine Research Foundation, the National Headache Society and ACHE, and the National Headache Foundation. Lots of bloggers and health sites like Health Central and WEGO Health provide information and platforms for discussion and support.

3) The fact that I published Migraine Expressions, a longtime dream.

4) And that I made so many fabulous friends and connections in the migraine, headache, and epilepsy communities, mostly via my work on the book, and in the process have loved the literature, poetry, art, photography and even music that has presented itself.

5) Activist groups such as the AHDA and other organizations are beginning to have a serious impact in migraine education, awareness and with members of Congress and the NIH, which can only be beneficial for all.

All of these things I am grateful for, and I hope that progress will continue to be made relatively quickly.

Fred Freitag, D.O., once said to me that he misses in all the migraine expressions any mention of “the benefits that come from having migraine. What was it about the genes that led to migraine providing a role in the selection of mankind as we know it today? [I think an example of this is the theory that early on people with excitable brains were more alert and could warn others of danger.]  Consider the many marvelous traits associated with migraineurs, overall their positive traits far outweigh their negatives. It is matter of harnessing that ‘goodness,’ if you will, to make it work for one rather letting it work against one.”

I think of that — and my wonderful family and friends — whenever I wonder what I might have done or accomplished had I not had migraine disease, then I reflect on what I have and what I have done and enjoyed in my life.

And then I am very grateful, indeed.

Just five tips? Okay, but I could probably list a tip for most letters of the alphabet. Once you’ve seen a competent physician and been diagnosed with Migraine:

A – Always be an enthusiastic student: research migraine, read everything you get your eyes on, weed out the crap, find the facts, and try to understand the disease and your own brain-body system.

B – Be patient with yourself and others; you won’t accomplish the (A) assignments overnight, and it will take even longer for your friends and loved ones to begin to understand. Be kind to yourself when you’re not well and don’t push it or feel guilty about limitations.

C – Care for yourself and be an effective partner with your health care professionals to determine the best course of action for you. Everyone is different, there is no cure for migraine disease, and finding your best management approach takes time and more patience. But there is hope and help, and we have more research and additional methods of treatment all the time!

D – Do try to let others know when you’re having a migraine attack, how you feel, and if and or how they can help you.

E – Eat nutritiously (avoid food triggers once you determine yours), try to sleep regularly and Exercise whenever or however you are able to.

I know, this is actually more than five tips. After my 40 years of migraine disease, these are only a few of the things that have been helpful to me – lessons that have taken me years to learn. Those newly diagnosed with migraine have an advantage over me and other migraine veterans, and that is the abundance of information, resources, and treatment options now available. I hope you tap into them and take care of yourself.

This post is my September entry in the Health Activist Blog Carnival. If you’re interested in participating, you can read all about it here: http://blog.wegohealth.com/2010/09/new-health-activist-blog-carnival-back.html

Fall in Boston

A shout out to all migraine and pain bloggers, readers and activists: here are a few easy and meaningful activities this month!

Today, 9/8, is International Literacy Day; check it out, be aware of literacy status worldwide… and read to someone or help someone learn to read!

It’s Migraine Awareness Week in the UK, and Teri Robert reminds us why it matters! You can always help raise awareness.

September 10 is World Suicide Prevention Day; Nancy Harris Bonk discusses and Diana Lee displays the National Suicide Depression Hotline. What can you do?

Invisible Illness Week this year is 9/13 – 9/19 and everyone can get on board with this one! Each One can Reach One. And you can. Lots of great ideas here, and my favorite is to leave little notes wherever you can letting people know that if they are in pain, they are not alone. How cool is that?

The whole month of September is American Pain Foundation’s Virtual March on Washington for Better Pain Management. Ellen S describes the event and provides the link for you to join the effort and add your voice!

The Migraine and Research Foundation can always put donations of any size to good use, and even if you can’t donate right now, you can access great resources on the MRF site!

These are quick and easy things to do during a busy September, so pick something you can do — and DO IT!

Vicki sent a book to Tom Harkin (D-IA), Chairman of the Senate HELP Committee, and I sent a copy to each of my senators, Barbara Boxer and Dianne Feinstein. Seven books are on their way to Congress now!

AND for every book sold in this effort, we will donate $1 to the Alliance for Headache Disorders Advocacy. You can make a dual impact with your purchase.

Anyone can purchase a book for Congress to promote awareness and migraine research here: http://www.wordmetropress.com/congress.html. Simply make a note in the PayPal purchase form which Senator or Representative you would like to receive your book.

Members of the Senate Health, Education, Labor and Pensions (HELP) Committee, which oversees the National Institutes of Health are listed, and members of the Health Committees are indicated with an asterisk. So you can target a committee member or Congress person of your choice.

I’ll display recipients’ names or districts in blue as they’re chosen so we don’t duplicate efforts.

Along with your book we’ll send a letter (See Congress letter page) with your name, address and purpose or if you wish to write your own letter and e-mail it to me, I can include that.

The Momentum for Migraine is building! More articles appear in the media as more public people speak up as migraineurs. Cindy McCain has entered the fray as a migraine advocate, and as Teri Robert has mentioned, the Alliance for Headache Disorders Advocacy (AHDA) is planning another Headache on the Hill event.

It’s a great time to help Congress understand how much migraine has been neglected and how much attention and funding it needs.

Thank you so much for all you do for migraine understanding and advocacy!

30 Things About My Invisible Illness, Migraine

Anyone who has Migraine disease or another headache disorder knows what it’s like to live with an invisible illness. People can’t see our illness. There are no outward signs. Invisible illnesses are easy for “healthy” people to ignore. This adds to the burden of disease and makes lives even more difficult.

Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a “meme,” 30 Things About My Invisible Illness You May Not Know. So, here’s my meme…

1. The illness I live with is: Migraine disease
   
2. I was diagnosed with it in the year: 1984
   
3. But I had symptoms since: 1969
   
4. The biggest adjustment I’ve had to make is: losing precious hours and days of my life to being sick
   
5. Most people assume: that Migraines are “just headaches”
   
6. The hardest part about mornings is: that I wake up slowly and don’t have early energy
   
7. My favorite medical TV show is: I guess I don’t have one
   
8. A gadget I couldn’t live without is: Hmmm… literally?
   
9. The hardest part about nights is: I don’t like to give up the day (especially good ones) and go to bed
   
10. Each day I take: 12 vitamins and supplements, and some days migraine meds
    
11. Regarding alternative treatments I: practice yoga, walk, wish I could afford massage, etc.
    
12. If I had to choose between an invisible illness or visible I would choose: invisible
    
13. Regarding working and career: I’ve spent two years working from home publishing and marketing Migraine Expressions so I’ve had some time to assess and improve my migraine situation; now looking for work
    
14. People would be surprised to know: that I am not always as strong as I appear to be
    
15. The hardest thing to accept about my reality has been: learning to say no when I’m unable to take on additional tasks or responsibilities and how patient I have to be with myself
16. Something I never thought I could do with my illness that I did was: I tried to not allow migraine to limit me but I now know there are things I would have done if not for migraine
    
17. The commercials about my illness: almost non-existent; I believe I’ve only seen any for triptans
    
18. Something I really miss doing since I was diagnosed is: mostly I have missed time, physical activities and certain events with family and friends
    
19. It was really hard to have to give up: continuing with college or going to law school
20. A new hobby I have taken up since my diagnosis is: my hobbies haven’t changed because of migraine
    
21. If I could have one day of feeling normal again I would: I don’t know what ‘normal’ is without migraine in my life, but I do have good days
    
22. My illness has taught me: to be humble and at the same time realize my self-worth
    
23. Want to know a secret? One thing people say that gets under my skin is: people thinking that migraines are my fault or that I could cure them simply via diet and exercise
    
24. But I love it when people: actually ask questions and want to understand.
    
25. My favorite motto, scripture, quote that gets me through tough times is: the knowledge that there is always someone with worse circumstances/troubles than me
    
26. When someone is diagnosed I’d like to tell them: “learn all you can about this disease, then take charge of your health and your health care” -TR  Also, be kind to and patient with yourself – it takes time to determine your best management system
    
27. Something that has surprised me about living with an illness is: how many people don’t understand
    
28. The nicest thing someone did for me when I wasn’t feeling well was: when my husband would completely take over the children and household so I could go to bed with a migraine attack
    
29. I’m involved with Invisible Illness Week because: I am still learning about my illness, still needing support and encouragement, and wishing to share that with others
    
30. The fact that you read this list makes me feel: worthy of your attention
    

Please participate if you haven’t already by answering these questions on your blog to keep this going. You can find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com.

Imah Widai

I’m Mad as Hell and What I’m Doing About It…

Yes, we still need painful and frightening migraine art

…and everything else possible to help the migraine awareness effort!

Well, National Headache Awareness Week (June 7-13) is reaching its end, but our efforts to promote awareness and understanding while advocating for more research and better treatments must go on!

Dedicated migraine professionals, advocates and overcomers are leading the charge online with excellent, informative migraine and headache sites, providing support and sharing knowledge and experiences. Some can be found on this blog under Resources and more will be added here soon.

We can stay informed, help ourselves, be advocates and help others in lots of ways! For National Headache Awareness Week, here are a few ideas:

• Read about the National Headache Foundation and National Headache Awareness Week 2009, as well as participate in this year’s ‘Headache U‘ education program and Health Talk webinars still offered several times next week.

• At Health Central’s My Migraine Connection, Teri Robert, forever a fearless advocate, has assembled a tremendous list of migraine articles for National Headache Awareness Week, and you can always find solid information and invaluable support there!

• Megan Oltman at Free My Brain from Migraine Pain offers a free six-part e-course on managing migraines and a wonderful Managing Life with Migraine teleconference series with experts on the last Sunday of each month. I’ve attended one live and to two via audio recordings, and they’re great.

And for next week, and the week after, and the week after that, do whatever you can to inform yourself and others about everything migraine disease. Take time to explore all the other great Web sites and blogs out there. Read about it. Write about it. Draw and paint about it. Shout about it! See if you can help organizations like the NHF, the Migraine Research Foundation, and the Alliance for Headache Disorders Advocacy raise funds or awareness; even if in some way that seems small to you, you can make a difference.

...Which brings me back to awareness and Megan Oltman’s teleconference on April 26 with Michael John Coleman, longtime migraine advocate, fine-art photographer extraordinaire and president and executive director of MAGNUM.

The conversation was interesting and informative and so many useful topics were discussed that I was extremely dismayed by comments from Coleman during a discussion of how migraine art can help people understand: “…we’d rather focus on regular art, look at people like Van Gogh…”  not so much “heads exploding or chain saws coming out of ears.” The gist was that beautiful, symbolic migraine art is preferable and it “doesn’t always have to be frightening stuff.”

Well, I agree that expressions of migraine don’t always have to be brutally honest and painful, but until we have some basic understanding of what migraine disease is and how it impacts more than 30 million people and their families, friends and co-workers in the U.S. as well as 12-15 percent of people in most other countries, we still need the “frightening stuff.” For people who don’t get what migraine is, they aren’t going to get it from a beautiful piece of symbolic artwork, although I believe we need that, too. We need all of it; all the attention we can get.

Until people stop seeing migraine as just a bad headache and not the disease it is where often-debilitating head pain is only one symptom, we need all the straightforward, insightful, beautiful, ugly, twisted, hopeful, and awesome artwork, poems, essays, photographs, songs, letters, books – anything and everything that can possibly help others see and feel what we do.

After 40 years of migraine, I so wish we didn’t need the frightening stuff, but as long as we have comments in the media like this in the LA Times, “…Obama’s plan to give his acceptance speech in an 80,000-seater stadium is turning into a logistical migraine,” or this in the Chicago Beacon News, “Milton Bradley has been added to a lineup that was already dangerous but the bullpen looks like a migraine waiting to percolate…,” we need way more than scary art!

“The bullpen looks like a migraine waiting to percolate…”?!? What is that?! Is that like an epileptic seizure waiting to simmer, a Parkinson’s disease tremor waiting to boil over?

It’s not only because I’ve spent the last two years of my life compiling, publishing and marketing Migraine Expressions that I feel so strongly about this; there are many reasons and foremost are all the comments I’ve received from people with and without migraine disease, who through the honestly stark illustrations of migraine in the book and elsewhere, finally “get it.”

Yes, we still need the brutal, painful and frightening art and writing, and we all need to keep working together for advocacy, we need walks/runs and fundraisers, we need to shout and stomp our feet, to continue legal efforts, support research efforts, and we will need all of this until everyone “gets it” and maybe, just maybe, we will have true understanding, more research, improved treatments, and wow, maybe someday even – dare I say it? – a cure!

Okay, so here’s your challenge:  If you’ve read this far and are the first or fifth person to comment on this post with what you do for migraine awareness,  I’ll send you a free copy of Migraine Expressions to keep, give as a gift, donate to a library, U.S. Senator or Representative, or for any advocacy purpose. (If you’re in Canada or overseas, sadly you will have to pay your own postage.)

MIGRAINE, anytime, urgent: Contact your senators and urge them to sponsor S 660, the National Pain Care Policy Act of 2009,  to improve  “research, education, training, access, outreach and care” for all painful conditions, including migraine. It’s fast and easy to send an e-mail to your senators through the Alliance for Headache Disorders Advocacy.

Tuesday, April 21, watch “Frontline” on PBS (tonight, 9-11 pm.? check your local times): “Poisoned Waters.” If you miss it on television, you can watch it online later!

Wednesday, April 22, Earth Day (and my daughters’ birthdays!):  A world full of possible events and activities – the Sierra Club’s list of suggestions.

My favorite: We bought a tree via the NRDC’s Revive a Rainforest campaign in the name of each of our daughters to be planted in a Costa Rican rain forest. At $10 a tree it’s a reasonably priced and invaluable gift for all of us and our environment!

**Update on my April 17 post about Michelle Obama’s garden — did you see Stephen Colbert’s take on the story last night on The Colbert Report? Awesome.

HAPPY AND HEALTHY EARTH DAY!