"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?

I think they are very much the same as my survival skills for the rest of the year:

Shady lady (me) waiting for bus in BA, so s l o w I'm stopped.

-try to get regular sleep,
-eat healthy and regularly (easier in the summer with all the fresh veggies, berries and such),
-drink lots of water,
-exercise when and as much as possible,
-try not to stress or get too emotional over stuff,
-try not to get too much sun, always sunglasses,
-don’t overexert or overextend myself,
-try not to take too much medication,
-don’t enjoy any yummy summer cocktails or wine
-try to relax anyway
-deny migraine,
-accept migraine,
-get depressed,
-get encouraged,
-make up my mind to go with the flow,
-and cope in whatever way possible –

Hmmm… doesn’t this kind of sound like, ” Try not to live too much”?

Seriously, in the summer and particularly in extremely hot and humid weather I just slow down.

Literally. In every way.

Really.

I     Slow     down.

Walk…      S l o w e r.

Never       Run.

Breathe…       S l o w e r.

Talk…      S l o w e r.

Think…

S l o w e r…

E v e r y t h i n g    in      S  l  o  w      M  o  t  i  o  n.

Breathe…

More…

A n d        S l o w e r…

Everything…        quieter…

s l o w e r …         s h h h…        s   l   o   w   e   r .  .  .

This post is part of the July 2011 edition of the Headache and Migraine Disease Blog Carnival at Somebody Heal Me for which the theme is “Summertime Survival Skills for Migraineurs.” Thanks, Diana!

I’m not at all sure I can choose one most frustrating aspect of migraine.

Around and around and around I go - Carousel at Buenos Aires Zoo ©2011

Is it all the time I have lost from life, family, and friends over the years? I guess I would say no — that is the saddest part.

Is it all the things I could/might have done without migraines? Well, that part is mostly infuriating.

Is it the fact that migraine has been so misunderstood, under-researched and under-treated? Or that migraineurs have been misunderstood and mistreated? Hmm… that would rank right up there — with most sad and infuriating!

Is it the pain and sickness? I don’t think so, although the bodily symptoms are surely the most excruciating, debilitating and physically draining.

No, what frustrates me most about living with migraine has to be not what I feel, know, or can measure and learn about it, but rather that which is unknown. All the stuff we don’t know.

What has brought this to me? What are the actual, provable causes/triggers for my attacks? Nothing appears to match up consistently regarding food, hormones, environmental factors, stress or weather! It’s not only frustrating, it’s humiliating, it’s disgusting, it’s exhausting…

For years off and on, I have kept diaries of hormonal activity, diet (suspected foods), exercise, weather, stress factors, and so forth, and have never been able to pinpoint consistent factors or causes of attacks. (This is not to say that keeping a diary is not helpful – I believe it is definitely worthwhile, especially when you begin to learn your patterns and triggers.)

Many times I knew attacks were hormone-related because they occurred horribly and regularly around my period or ovulation, or I could tell it was wine, alcohol, or too much of a certain food, or I was certain an emotionally stressful event triggered an attack.

During my two pregnancies and breastfeeding months, I was blissfully migraine-free. So now that I am in menopause, I expect that hormones will somehow “level off” and I will be migraine-free again. Well, I am still having attacks and still trying to figure out what triggers them.

I learn about foods and the elimination diet, and then a study comes out saying foods may actually have little to do with migraine. I’ve tried many medications and supplements and learned about the stacking factor — that one trigger might not get you, but add a few more and the fifth one on the list might. I lose count. I read about new potentially effective medications, new studies on various neuronal or cellular activities and their impact on our nervous systems and become hopeful.

And then I ask: so after all these years, why don’t we know? That is frustrating. And even while it’s encouraging that there are many new theories and studies and potential treatments, it’s also more frustrating. Oh boy, now which of these applies to or might help me?

At some point along the way, I took some advice I heard and stopped thinking about the possible causes/triggers, just accepted that I have migraine, period, tried to look at any bright side of it — like making wonderful connections and friends around the world or the fact that I was the sensitive one, the one who would wake up at sounds in the night and be able to warn others of danger. I hoped that acceptance would help me relax and perhaps that would improve my situation. Maybe I relaxed a little about them, but I still had/have migraines.

Menopause has helped some. My migraines are a little less intense and no vomiting, but they are still painful, disruptive, sometimes debilitating, and always limiting in some way.

And trying to answer the why of it all and to identify triggers for my attacks — that still frustrates me the most about my life with migraine.

This post is part of the April 2011 Headache & Migraine Disease Blog Carnival, hosted this month at Somebody Heal Me.

Once again I am laughing at myself and my life. You might say I’ve done some major tweaking lately.

I haven’t intentionally changed anything over the last year and a half to deal with my migraines, but my life has taken dramatic turns on some crazy roads. And it’s amazing the way the migraines have hung right in here, taunting me mile after mile.

Street Scene in La Boca, Buenos Aires ©2011

At this time, I am in Buenos Aires(!) in the middle of a living experience – an extended visit to work, explore, study Spanish, and generally see what living life is in Buenos Aires. Coming here has been on my husband’s adventure list for a long time, we can both work remotely via the Internet, so here we are.

My migraines are here, too.

They have followed me from leaving our home in California in December 2009 to living with family in Florida and Michigan, to house/pet sitting in western North Carolina for two months, back to Michigan to help care for my mother-in-law who died with pancreatic cancer in December 2010, and now here to Argentina. No matter where I am or what I am doing, my migraine disease stays with me. It is an ominous, ever-present shadow, even when it hasn’t completely overpowered me.

I haven’t worked in a traditional job since early 2007, and I’m always seeking more freelance editing work. I continue to try to exercise (mostly walking these days), eat healthier (hard to avoid all the sugar in Buenos Aires!) and keep a positive attitude. These tweaks, though, I started a few years ago.

Amidst all the recent events in my life, what pleasantly surprises me and gives me hope for my future, however, is the fact that my migraines have not gotten worse in the midst of all these location and life changes, stress, and emotions.

Then I stop and think — not gotten worse? Hmmm… I’d better continue to tweak.

It’s got to be better than Not Gotten Worse.

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.

I consider myself to be a spiritual person although I’m not a member of any established religion. It’s sad that in these times that statement alone might be cause for a “religious” person to think less of me.

We are living in extremely difficult and sad times. My feeling is that most of the hate and divisiveness in the world today is really about something else entirely — FEAR. Also some stems from people desperate to protect their material wealth.

We fear what we don’t know or understand. We hear stories and rumors about bad things done by people of ethnic, racial or religious groups other than our own, and sadly sometimes the stories are facts. But if we stop and think things through, how many “bad” people do we actually know, or even ever encounter? How many kind and loving people do we know? I would guess we all know many more of the latter than of the former.

Who said, “Love thy neighbor”? Who said, “Love thine enemies”? Who tried to teach others to be tolerant, understanding and forgiving? Everyone knows there are people of every color, ethnic and religious persuasion who do bad things.

Perhaps the next time we each meet or encounter someone different from ourselves, we could just stop and think about who that person really is; look past any obvious physical, sexual or religious differences and into his or her eyes and then further into his or her soul; see them as another human being with the same feelings, strengths, weaknesses, fears and capacity for love that we each have.

My biggest fear is that if we don’t all start learning to do this, humanity — the group of which we are all members — has no hope of survival.

I choose Peace and Love over fear and hate — anytime.

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.

Still Standing (c)2010

During my migraine years, debilitating attacks have often not only prevented me from pursuing or enjoying hobbies but also from simply engaging in everyday, normal activities!

I most wanted to spend any time not  in migraine hell with my family, enjoying my children, or needed to spend that time and energy at work, on chores, and doing regular life stuff.

Many of the activities I enjoy — reading, writing, music, art, hiking, tennis, travel, photography — are severely and negatively impacted by migraine pain and illness. Once I crocheted snowflakes for Christmas gifts and remember bawling while trying to concentrate on the stitches through the pain. I recall taking college courses and struggling to memorize material for exams through blinding migraine pain.

Not wanting to be entirely negative, though, I have to say that having hobbies we love are generally helpful to all of us. So during healthy times, enjoying those activities most likely has a positive influence on our life outlook and might on some level improve our disorder symptoms.

Bottom line is that we need to relax and enjoy what we can when we can, and I feel it’s important to not feel pressured — internally or externally — to engage in hobbies or extra activities and then feel guilty or inadequate when we just aren’t able to participate. And reversely, rejoice and take pleasure when we can!

This is posted for the October 2010 Headache Blog Carnival at Somebody Heal Me with the topic, “How do your hobbies help you cope with your headache disorder?”

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