“…an interesting research finding published recently titled ‘Unveiled: First gene link to common migraine.’ In short, this genetic variant allows a messenger chemical called glutamate to accumulate between brain cells, and this unleashes the migraine.”

After years of watching, reading and waiting, here then, finally researchers have located a gene, yes, a real player in our DNA and a genetic risk factor for common migraine. Here’s the stuff for brain/bio geeks: The variant is called rs1835740 and lies on Chromosome 8 between two genes, PGCP and MTDH/AEG-1. It has something to with a protein that clears glutamate from synapses in the brain.

If you’re like me, the numbers and letters don’t mean much. But finding the little devil gene does. We’ve been hearing about glutamate for a few years (I took Namenda [memantine for Alzheimer's] for a while last year; it is somehow associated with glutamate, too), and at least a couple of pharmaceuticals have worked at developing drugs related to it. Now maybe here is hope that continued research will result in effective help for more migraineurs.

And of course, this is powerful for letting the rest of the world know what we already do — that migraine is a genetic disease, not a headache! Stay tuned — I’m sure there is much more to come…

P.S. A fascinating article in The Independent discusses the genome scanning technique used in the migraine study and many others.

I am 56, and I have migraine disease. My first migraine attack came out of the blue when I was 16. What follows is my history and how over the 40 years I have ‘coped’ (or NOT) with migraine disease.

My attacks were sporadic in the early years and I took tons of aspirin and tried to figure out what was wrong with me – why I was violently ill in bed with head pain and vomiting for two to three days at a time. Doctors I discussed it with told me they were tension headaches and I needed to relax. Hmmm…

“Sonata of Pressure” by Fred Camargo, ©2006, from Migraine Expressions

In my 20s and 30s, I began to lose about half my life to migraine attacks. I finally found a doctor who diagnosed my episodes as migraines. He was sympathetic and gave me Fiorinol. That would ease the pain a bit, but if I took it too late, I just threw it up and suffered through the episode as usual.

When I was nearly 40, I found a doctor who was knowledgeable about migraine, and when Imitrex (sumatriptan) injections came out, he tried that for me. It worked with a couple hours of sleep, although I hated the injections and would use them only in desperation.

Pregnancy and breastfeeding also worked – I did not have migraine attacks during my two pregnancies or while breastfeeding. This at least confirmed that hormones were primary triggers for my attacks. Too bad I couldn’t have been a surrogate for 30 years!

My 40s were the experimental years; I tried a wide variety of preventive meds, including but not limited to anti-depressant, anti-seizure, blood pressure, antihypertensive combinations, SSRI’s, SNRI’s and Alzheimer’s meds, plus various and lots of supplements. I should have kept a list because there are too many to remember. I never found the right combination of meds and usually couldn’t tolerate the side effects. The few that seemed to work at first eventually brought crushing disappointment when the migraines broke through again.

In addition to hormones, my attacks were triggered by other factors as well, and gradually – after losing many days of my (and my family’s) life to migraine attacks – I learned what to avoid and how to improve my lifestyle to minimize attacks.

I still struggle to cope, but I am one of the lucky ones in that menopause has seemingly brought me some relief. Although I still have attacks, they come less often and are less intense – sumatriptan, ibuprofen, an icepack and sleep still work. I almost always find that resting/sleeping with an icepack in a semi-upright position works best.

“Sleep” by Nick Beery, ©2007, from Migraine Expressions

The things I try To Do, sometimes without success, are: breathe deeply, sleep well and regularly, exercise (this has always been a weakness for me – I don’t enjoy sweating and sometimes exertion causes a migraine), eat better (this is extremely challenging since I am a true junk food junkie who doesn’t like many vegetables; luckily I have a husband and two daughters who are nutritional geniuses and great cooks!), and all other things in moderation.

On my try to Never-Do list are: drinking wine, eating MSG, getting overly stressed or worried (yes, this is difficult), overeating any foods that might be triggers since I’ve not been able to determine mine, panicking when I do have an attack, taking Fiorinol, or using any abortive migraine med more than three times a week. (A couple of years ago, I went through a painful period of withdrawals to stop having rebound attacks and don’t wish to do that again!)

And speaking of stress and triggers, I continue to learn about my migraines as life and circumstances change. Last December my husband and I, with no other choice, walked away from our home in California with its underwater mortgage and became members of the new homeless class in America. Since then we have lived with relatives in Florida and Michigan, gone to Berlin for our son’s graduation (a goal we set two years ago and were determined to reach even with our last dime), and are now house sitting in North Carolina – and completely starting over.

Through all of this, my migraines have miraculously not been too much worse! But I have discovered that at each new place we’ve been or visited, I have had a rough three- or four-day period of migraines and general malaise. This makes me think seriously about environmental issues and adjustments, whether climate, humidity, air quality, chemicals or whatever else, and my generally oversensitive body/brain/neuro system.

"Ballet" by Katie Sapp, ©2007, from Migraine Expressions

In conclusion, one of the ways I have coped – and still do – with migraine is to constantly be a student of the disease and my own brain and body. I’ve always read everything I can and tried to be an educated consumer and patient. I also try to be optimistic.

I wish for all migraineurs everywhere that better research and treatments are right around the corner, and I’m encouraged by the studies and progress albeit too slow in the last 10 years or so. There are more migraine specialists and more knowledgeable non-specialists, and I think at least some of the stigma of migraine is beginning to dissipate. My deep desire is that no one else, anywhere, has to wait 40 years or more for relief.

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.

Yes, it would.

I was raised as a good little Midwestern girl, to be seen and not heard, to have a superwoman’s work ethic, an obligation to help others and to be responsible and accountable for my actions. Not that any of these things are bad, just that for 15 years or so, this is why I listened to doctors who said my horrible ‘headache’ attacks were just a part of menstruation, that I needed to relax and ‘stroke my chin’ so I wouldn’t develop ulcers to go with that ‘headache.’

All those years of hearing in some way or another that migraine was my doing – you need more exercise, more sleep, better food, more relaxation, change your personality – blah, blah, blah… while I stoically suffered through too many two-to-three-day sick episodes per month with pain, nausea, diarrhea, and life between two sheets in a dark room with my friends, the ice packs and vomit buckets.

At some point during the late 1980s I described one of my migraine attacks to a friend, a man, who said he had experienced a headache attack like that once, went to the emergency room, got meds that put him out for two days, headache lifted, and fortunately he’d never had one since. Wow. Why didn’t I think of that? I could go to the emergency room? Someone would help me? How stupid and naïve I was…

Of course since then there have been plenty of horror stories about people’s experiences with ER trips for migraine, and there again the invisibility of migraine becomes a haunting disadvantage. What if thorny, ugly, disgusting, red-hot maggots came crawling out of your eyes and ears and navel – would that suffice to convince someone else of your state of physical suffering?

This is not to take away from the physicians and researchers who have recognized that migraine was not just a headache, researched and tried to find causes and answers. There have always been devoted physicians and medical professionals interested in and dedicated to migraine and helping people with it, but somehow they weren’t heard loudly enough, either. Migraine still is invisible in many ways, but at least it seems to be garnering more serious attention in the media, the medical field, and circles of migraineurs’ family and friends.

Along with the good press, however, comes the bad – the sensational and the quack cures. People who don’t have migraine who fake it to miss work or use it as an excuse to try and obtain medications cannot know the damage they do to people with migraine disease.

People who think they know something about migraine and try to give simple answers and cures also don’t realize the impact of their words.

People who use migraine as a metaphor for minor irritations or everyday challenges have no idea how they trivialize the suffering of others.

But most important is when people like me with migraine suffer silently, don’t assert ourselves, fear being (or can’t be) honest because we risk losing jobs or friends, fail to find our voices, or otherwise don’t help to remove the insidious cloak of invisibility from migraine disease.

Yes, we can help ourselves: learn everything we can about our disease, practice healthy lifestyle habits including appropriate diet, sleep and exercise, work with competent medical professionals, and try to find traditional and nontraditional treatments that may help us manage our symptoms. And we can keep trying to help others understand.

But please, no more good girls.

As one of five girls – yes, I have four sisters and no brothers (my poor father!) – and one of the three of us who have migraine disease, naturally I’ve wondered (and lamented) over the years, “Why me/us – what’s the reason or connection?”

Now that we’ve emerged from the Migraine Cave Days, as I call the time before the recent Migraine Enlightenment, and I know that migraine is hereditary, of course it all makes some sense. But we still haven’t determined who in the generation before gave us this lovely gift. And what about the two sisters who don’t have migraine? Are there personality similarities and differences in and between the three migraine sisters and the two non-migraine sisters? Did the three ‘lucky ones’ inherit some personality traits as well as the migraine gene or gene flaw from the same undetermined source?

Our mother says that the three of us share common dispositions and personality traits that the other two don’t, and that they have some personality similarities with each other that we don’t share.

Yes, I am treading carefully here and avoiding specific comparisons and sibling rivalry – who’s smarter, more assertive, energetic, timid, easy-going, serious, perfectionist… because that’s not the point. The question or debate is: do we inherit the same or similar personality traits along with the migraine gene? Or is it coincidence that three of us have migraine as well as similarities in our personalities?

I know the  “migraine personality” concept has been all but debunked over the years, the stereotypical Type-A, highly creative, intelligent, sensitive creature (or whatever you’ve heard it to be) but I still can’t help wondering how do our genes, personality traits, family background, and physical environmental factors all contribute and play a role in this migraine drama?

I keep looking for some simple reason, like birth order (no, we are 1st, middle and 4^th) astrology (nope, not in the stars), being dropped on our heads (nope, not that), or being exposed to some environmental evil (nope, we were all in the same house, same neighborhood, same foods), but I guess I’ll have to settle for simple heredity. I can consider it a crap shoot and just go by the proven numbers and percentages, but that’s no fun.

Does anyone know the answer to my family migraine heredity, gene and personality riddle?

At times I feel that in some respects we are still in the Migraine Cave Days, but it makes me happy that my three children do not have migraine, or at least so far. Our son is 27 and may have had a couple of episodes in high school but no more, and our daughters are 24 without incident… did we simply roll the dice for winning numbers for them? If they never have migraines, I’ll be thrilled with that answer, and as for me and my sisters, perhaps we’ll just be a forever mystery!

“VOICE OF THE LIBERTY BELL”
by Gloriana Casey for 7 /4/ 2009

In Philadelphia, I live,
a grand and giant bell.
And long my life, and journeys made.
the stories I can tell.

On Market Street I sit in rest,
between streets 5th and 6th.
At times to travel cross the land,
from East to West, miles ticked.

My birth in London’s Whitechapel,
in 1751.
To honor Penn’s State charter,
set in 1701.

Charter of Privileges was the name,
for Penn was fair and wise.
Religion free and people too,
my purpose, from his eyes.

When first I rang, Myself I cracked,
two men named Pass and Stow,
Were hired then to remold me
My rebirth, it was slow.

They thought perhaps more copper was
the best way to repair.
With tin and lead and arsenic too,
the mix was almost there.

Then silver, gold, and zinc came next,
but just a little bit.
My new self tolled, but people frowned
at just the sound of it!

Another bell was ordered then,
and London sent the next.
But this tone too was just not good,
with people highly vexed.

This new bell went to State House roof,
with clock to sound the hour.
But I remained in my same place,
and kept the ringer’s power.

I tolled for Franklin’s England trip,
to plead the peoples’ fears
And rang when King George gained the throne,
I tolled for many years.

For Sugar and the Stamp Acts too,
rang loud to tell the crowd
To speak of king’s unfairness then,
in voices clear and loud.

My bell self once a fugitive,
the British came to town.
I hid in Allentown’s old church,
and wouldn’t be melt down.

I rang in 1776,
from Independence Hall,
To hear the Constitution read
out loud to raise the call.

Abolitionists, they gave my name
as “Liberty, ” it’s fact
A symbol against slavery,
inhuman, heinous act.

In 1846 I made,
My final bell voice chime,
And never more you heard from me,
perhaps now is the time,

To tell you now why I, cannot speak,
my message fine and clear.
I represent what’s best in life,
and all that you hold dear.

I am a bell and that is much,
my medium to teach.
But sadly now, I see lost hope,
with furies let unleashed.

Remember this to change your life,
though mute remains my tongue,
Do not sit back and curse your life,
Democracy’s not done.

So join and write, petition, act
toward Washington D.C.
For only you can raise the HOPE,
and keep the “Land of Free.”

Where once the Common Good, it reigned,
I see a land in need,
Speak up and make your ideas heard,
to change our course with speed.

Involvement, not complaining will
then right our country’s fate.
Citizenhood, is needed now,
before it is too late.

“These are the times that try (our) souls,
so true did Tom Paine say
Our forefathers, they had the grit,
those truths you know today.

You think of me but do forget,
that while my voice gave ring
It’s only from the PEOPLES’ voice
Democracy can sing.

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 Expressions has placed as a Finalist in the Anthologies-Nonfiction category of the 2009 National Indie Excellence Awards! I am honored to thank and congratulate all who contributed to and supported the project.

P.S. Migraine Expressions is a great gift for anyone whose life is impacted by migraine!