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Tuesday, June 19, 2012

Migraine Awareness Month - Post #19: "The Match Game"
"Describe your perfect doctor to treat your Migraines."
  • The perfect migraine doctor is a neurologist whose practice primarily treats head pain disorders.  
  • He or she is kind, compassionate and knowledgeable about the latest research, or participates in research studies about head pain disorders.
  • The doctor empowers the patient by facilitating shared decision-making in the patient's care.  
  • The doctor and patient treat each other with respect. 
  • The practice is staffed by competent and efficient personnel. 
  • There is a nurse available to answer questions during office hours, and there is an emergency contact number where someone can be reached for problems that crop up during evenings, weekends and holidays. 
  • General questions are answered within one business day
  • There is a prompt response when the patient has an urgent or emergent need.  
  • They honor most insurance plans and are willing to set up a reasonable payment plan for those with no insurance, or for the items not covered by insurance. 
  • The doctor listens when you say that you don't want drugs that will further impair your cognitive abilities or that you are a light-weight when it comes to certain classifications of drugs. 
I am pretty lucky in that my internist referred me to a migraine specialist right at the onset of my battle with chronic migraine.  He listened to my suggestions and the suggestions of other health care professionals, incorporating those ideas into my care plan. He did not advocate the use of narcotics, which I appreciated. 

My current neurologist (who looks a lot like the guy in my photo) spent an hour with me at my intake appointment and did not seem hurried, distracted or worried about getting behind schedule. I felt as if his entire focus was devoted  to solving my problems.  He asked me at the end of our visit if I had any other questions.  I appreciated that.

I have heard horror stories from many other migrianeurs about their physicians, and feel very fortunate to have found competent physicians in my geographical area.   Despite the fact that I have a chronic incurable disease, when it comes to my medical care, I feel  blessed.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Monday, June 18, 2012

Migraine Awareness Month - Post #18: "The Price Is Right"

Today's blogging prompt is "The Price is Right."
 "What one thing would you do for the Migraine community if money were no issue?"

This is a tall order indeed, as the "migraine community" is such a large demographic.  It is estimated that about 10% of the general population are diagnosed with migraine, but many people suffer from migraine without even knowing. They think it's a tension or sinus headache.  Here are a few facts about migraine, and areas that need more research:
  • Migraine is a syndrome that affects many other bodily systems besides the head.  It is difficult to treat because the preventive medicine that works for person A may not work for person B or C. Because migraine has a constellation of different presentations, it is a tricky disease to treat.   It's taken me 5 years, 5 doctors and about 50 different medicines to begin to believe that I am on the right track.  
"Researchers are still unsure about the root cause of migraine disease.  Migraine remains poorly understood and frequently mistreated. Researchers still do not understand many things about the causes of migraine, the role of genetics, the nature of pain, and the reasons why medications work only on some people and in some situations. As a result, sufferers often endure a lengthy process of trial and error to discover an effective treatment. Once a treatment is determined, it may not alleviate every attack, and it may prove ineffective over time." (
  • Migraine is among the 20 most disabling medical conditions, yet very little federal funding is targeted toward migraine research and development of medications and other treatments. In fact, most of the meds we use to treat migraine (with the exception of those in the triptan family) were developed for other purposes, primarily seizure and bipolar disorder. 
  • About 10% of children also suffer from the disease. These young people are often ignored or misdiagnosed.  Development of medication for pediatric patients is very difficult because it is hard to find children whose parents will allow them to participate in drug trials.Virtually NONE of the medications used to treat migraine in adults have been approved for pediatric use.
  • This is a disease that affects three times women as it does men, and includes menstrual migraine.  
  • About 2% of the US population suffers from chronic migraine. This means that we are out of commission with migraine for 15 days a month or more.  Try having a normal life with that kind of disability.  It's nearly impossible.   
  • We try everything and anything to get our lives back, including alternative or complementary treatments such as meditation, massage, reflexology, chiropractic or osteopathic medicine and acupuncture. There is very little research on the efficacy of these complementary treatments. Nearly all of this is an out-of-pocket expenditure. Couple that with the fact that few of us with chronic migraine can work full time, and you've got a very financially stressful situation. 
How can I possibly choose "one thing" to tackle first?  Here is my wish list:
  1. More money toward research on the root causes of migraine, which may lead to more migraine-specific treatments.  
  2. More training for physicians about migraine disease to facilitate early diagnosis so people can have effective treatment from the outset.
  3. More migraine specialists. Neurologists are fine, but migraine specialists are trained to deal with the myriad of migraine presentations and complications. 
  4. More education of the general public so they understand what a truly disabling condition this is.  It's not a hang over or a bad headache. It's nausea, vomiting, diarrhea, dizziness,  cognitive processing difficulties, difficulty speaking, reading or writing, extreme sensitivity of the senses (vision, light, sound, taste, smell and even touch). 
  5. More research on the efficacy of traditional western medicines and of complementary therapies.  
  6. Insurance coverage for evidence-based traditional and complementary therapies proven to work. 

"There is no condition of such magnitude - yet so shrouded in myth, misinformation, and mistreatment - as migraine."
Joel R. Saper, MD, Chair, MRF Medical Advisory Board

Sunday, June 17, 2012

Migraine Awareness Month Post #17: Father Knows Best

Here is today's mission: 
"Some understand Migraines, some don't. Write a letter to your father or the man closest to you, and talk about your Migraines."  

Dear Sweetheart:
Happy  Father's Day!
I want to tell you how much I appreciate you and the love, kindness and compassion you've shown me throughout our battle chronic migraine.
I say OUR battle, because you are right along beside me in the front lines. You can usually tell when the prodrome of the migraine is coming on before I can, just by looking at me.  You blow off the rude comments when my prodrome symptom is irritability.  You don't complain that we planned for me to be working more than 30 hours a month to help support ourselves, or the financial drain that goes along with it. When we have to cancel plans or leave early,  you always let me know it's okay. When I am in the throes of the migraine, you always seem to know just what to do. I know that you are suffering right along with me.

When I am feeling low and knock myself down by saying things like, "I am sorry that I am not the woman you married," or "you didn't get what you'd bargained for," you always say something that makes me feel secure and less angry at myself.  You are my best friend, and the one person who truly "gets" me.  You've always got my back.  And if you're lucky, my front.

I love you more than words can say.

Your devoted wife, Jill

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Saturday, June 16, 2012

Migraine Awareness Month #16: "Lead, follow, or get out of the way."

Today's topic:  "Lead, follow, or get out of the way."
"Which role fits you and why?"
In a sentence?  Get outta my flippin' way.

I am a gal who is a fierce advocate for myself and others. I have been a nurse since 1975;  I ran an internal medicine practice for over 12 years. I don't suffer fools gladly. Doctors don't intimidate me, and I know how "the system" works.  I have left practices because they were poorly run. I've written letters to doctors to tell them how they or their staff could improve their practice.  I told my last neurologist that if he couldn't do anything more for me to refer me to another practice.  I told my current neurologist about 3 major mistakes his nurse made on a phone call to me; he was appreciative. Seriously, how else is he going to find out his nurse is incompetent? As an office manager, I always appreciated it when people were candid and let me know if something went wrong. Only then can we make it right. RIGHT?

I am both a nurse AND a teacher. Not only am I bossy, but I am a bossy know-it-all.  I am a pathological "helper." My favorite thing to do is to be the person that others go to for help and advice.  I consider myself a "maven,"  a term which Malcolm Gladwell (in his book the "Tipping Point") used for people who like to gather information and answer questions.   I like to find out how things work.   

 As a patient, I am a dream. I write everything down, keep all my medical records, and am adherent to my medicines and other routines to help me get better.  But if I have a side effect,  I am going to let the doctor know about it.  Pronto.

 Don't get me wrong. I am not a pain.  At least not ALL the time. Just mostly. Now, if you'll excuse me, get outta my way.

National Migraine Awareness Month is initiated by the National Headache Foundation
The Blogger's Challenge is initiated by

Migraine Awareness Month - Post # 15: Sisters of the Heart

Today's blog is up to the writer.  I decided to write about -
My Heart Sisters. 
There are some people who have come into my life that are always there for me, and I am always there for them.  I am very fortunate to have many close friends who check in on me, are willing to take me to the ER, drive me to doctors' appointments, to listen to me vent, and forgive me when I cancel plans at the last minute. This blog is a homage to my girlfriends. 

It's a long list, so I will begin in the order in which I have known them.  I consider these women my "heart sisters."  Together, we laugh, cry, dance, sing, and share stories from our hearts.

My list begins with my best friend Kathy, whom I have known since age 4.  We grew up together, went to nursing school together, and stood up for each other at our weddings.  Even though we don't live nearby, we simply call each other on the phone anytime and pick up where we left off.  We have a sense of each other's history that no other friend can match. She always has my back, and I, hers. The importance of our friendship is immeasurable.  I wish everyone could have a friendship like ours.

I have a select group of friends I've stayed in contact with since high school. Susan and I were in high school choir together. We sat next to each other in the soprano section, and became close friends. I've always been able to rely on her for advice and love throughout the years. We both suffer from migraines, and have compared and shared our experiences. When we are in the same state, we always try to get together for a visit.   Willde, Debra, Ellen and I met in the 5th grade. We have always been "Christmas card friends,"  but because of Facebook, have recently re-connected.  We all have our own trials and tribulations, and get together once or twice a year to share stories, hold hands, hug, and occasionally, cry.  I love these women!

Sometimes friends come along because of our spouses. It is rare that wives of spousal friends will become girlfriends, and have as much fun as our husbands and their boyfriends.  I have acquired several heart sisters this way.

I have known Anna since I was about 22.  Her (ex)husband and my husband have been best friends since 2nd grade. I often tell people that Anna and I could have fun anywhere - even stuck in traffic!  This notion was tested just last month as we were tied up in a traffic jam while on our way to her daughter's college graduation. We were literally stuck in traffic for 90 minutes. Most of it was fun until we started to worry that we would miss the ceremony.  But we made it and all ended well. Anna's two daughters and I are very close. They call me their "Fairy Godmother,"  I title I adore. Because of my friendship with Anna, I met Jill, whom I also count as a dear friend. We travel well together.

Carol and I met when our husbands played on a summer softball league. I was about 25 at the time. We were casual friends because of softball, and partied together when the team won - which was often. Carol and I became heart sisters when I had Chronic Erythema Multiforme in 1988.  She heard I wasn't feeling well, called to ask if I needed anything at the store, and dropped it by my house. Then she saw what a mess I was.  She joined me on the sofa where we just cried and sobbed and hugged for the longest time. And the cement was set. We both love to dance and sing.  We call it "Musical Tourrette's." We will be taking a walk together, chatting away, and one of us inadvertently says a few lyrics from a popular song, and the next thing you know, we are arm in arm, walking and singing like Dorothy and the Lion down the Yellow Brick Road (BTW - I am the lion). She will always be my heart sister.

Wendy's husband was the pitcher on the same softball team.  She and I became friends right around the time her first son was born, about 24 years ago.  We met because we were both at the same professional conference as wives of the attendees, and needed some companionship while they were in their meetings.   Since then, the four of us have traveled extensively together.  My best vacation EVER as couples was a sailing trip to Bora Bora. Pure Bliss.  We all like to dive, so many of our vacations have been highlighted with a diving excursion.  We both love golden retrievers.  About a month after I began having daily head pain, I decided I needed another dog to replace one that had died 3 years earlier.  Wendy's dog had just been diagnosed with bone cancer, so going puppy shopping was probably a very difficult thing to do.  But on we went, driving hours and miles to find a puppy that would melt my wounded heart.  And we succeeded;  I found the perfect puppy.  Wendy has also suffered from migraines, so she knows what I'm going through.  She is a die-hard, loyal friend to me, offering help without being asked.  I know I could call on her day or night. 

Gayle, Judy, Deb and I became a foursome shortly after I was Gayle's student teacher in 1996.  She called me her "wife," because I got to do all her mundane dirty work.  We knew we could be friends when we discovered our propensity for color-coding things as an organizational tool. Gayle brought fun into an otherwise grueling semester.  Gayle,  Judy and Deb were a three-some because their kids were friends.  They allowed me to come into the fold.  We get together often for dinner, golf, and always have a little Christmas party with our spouses. It's the most fun ever, even though I don't drink anymore.  As I mentioned in a previous post, I am everyone's favorite designated driver. I could ask anyone of these women for the shirt off their backs and they would willingly comply (mostly because they are exhibitionists at heart).  Gayle has driven me to many appointments, and has seen me post-op, under the effects of anesthesia (or as I like to say, "truth serum"). You don't let just anybody see you in that state.

Chris came into my life in 1998 as the neighbor across the street.  She and I became walking buddies and close friends, where we shared stories we couldn't even tell our husbands.  She helped me edit many papers (starting with my masters thesis).  Shortly after I began having chronic migraine, she was diagnosed with megaloblastic leukemia, likely from her time as an Army nurse in Vietnam. She was exposed to Agent Orange and lots of radiation when she accompanied soldiers into X-ray (not enough lead aprons).  The kindest soul I've ever met.  When she got cancer, I set up a "Caring Bridge" site for her. She said something to me that sticks with me today: There is a support website for cancer, but there is not one for migraine. This is a battle I fight without a Caring Bridge. Thank God for girlfriends and my FaceBook support groups.  Sadly, Chris lost her battle with cancer, and died within 6 months of her diagnosis. I miss her every day.

Last, but certainly not least, are two people I rely upon to make me look good: My hairdresser, Pam; and my reflexologist/nail tech, Denise.  You learn a lot about a person whilst sitting in their chair for a couple of hours. Pam has been cutting my hair for over 10 years.  She's seen me go from a vibrant graduate student into my chronic migraine disease.  She has seen all the horrid side effect the medications have had on me.  She can tell at a glance if I am in a migraine when I have an appointment.  We've commiserated about our kids, our parents, our lives.  I consider her a true friend.  I found Denise on a recommendation from my friend Gayle.  She helped me through the death of my dad in 2010, but Denise and I have a special relationship because of something that happened during one of my recent reflexology sessions.  I was already in the prodrome when I came for my appointment.  Well, I went into the headache phase right there in her chair.  Tears were streaming down my face as I tried to get to my "happy place," and she was trying hard not to lose it. She switched reflexology modes from healing to calming, and the migraine started to break. Good thing, because I was ready to ask her to take me to Urgent Care.  We both made it through the migraine, and once I became well enough to make the five minute drive home,  I left her care. I found out later that after that appointment, she visited a fellow reflexologist and sobbed and cried. Sharing that much emotion is a very intimate experience, especially when it is your life's work to make people feel better. 

When I am in severe pain, I like to hole up in my bedroom, put my eye mask on, earplugs in, and try to will  the dragon away.  Not many people have seen me go through the entire migraine from prodrome to headache phase.  Most of these heart sisters have.  It is a very intimate experience for me because I really don't want people see me when I am so debilitated.  My eyes go from bright and twinkly to having the shades pulled down. This can happen in a minute or take all day.  I love these women like sisters because they understand. They are compassionate beyond words, and I wanted to tell the world how much they mean to me.

National Migraine Awareness Month is initiated by the National Headache Foundation
The Blogger's Challenge is initiated by

Thursday, June 14, 2012

Migraine Awareness Month - Post #14: "Live Long and Prosper"

The prompt for today's blog submission is "Live Long and Prosper"
"Come up with a short, simple phrase or sentence that could be used when saying 'Hello' or 'Good-bye' to express your wishes for fellow Migraineurs."
My first thought was to use the Italian word, "salute'," meaning "God bless you"  or "to your health."

But I love the Hawaiian language.  Many simple words have several meanings.  For example, the word "mana'olana" means:
Hope, confidence, faith, expectation; to hope; thoughts that rise or float, like expectation and hope.
If any word could convey my wishes for a fellow migraineur (or a fellow human being, for that matter), it would be mana'olana.  

Mana'olana, my friends.  May you be blessed with hope, confidence, and faith that something good will happen. 

 (Pronounced: mah-nah-o-lah-nah.)

art work: Mana-olana:

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Wednesday, June 13, 2012

Migraine Awareness Month - Post # 13: "You are Beautiful".

Today's prompt for Migraine Awareness Month is: "You Are Beautiful"
"Write yourself a love letter. Tell yourself how wonderful you are. Remind yourself of the things you have accomplished despite Migraines. There are times when we need to be reminded of the good things about ourselves that others see that we may have missed."
The women who developed these blog prompts are also migraineurs.  They know that when you have a chronic illness, it is much easier to beat yourself up than to build yourself up.  

Before migraines came into my life, I used to think of myself as powerful, smart, extremely lucky, and able to do just about any durned thing I put my mind to.  I was fit, strong, healthy.

Now?  Well, I'm older - over 50 - and besides having an invisible disease, sometimes feel invisible, too. There are times when I feel I have little self-confidence, self-esteem, or self-worth.  I feel like my IQ dropped about 30 points from the migraines and the meds I've taken to combat them. I spent over 10 years in graduate school so I could become a college professor. Can't do that now. 

And Yet: I am kind, compassionate, and (when I feel okay) have a pretty good sense of humor.  I am queen of the double entendre, bad puns, and smarty-pants comments.  I am capable of doing work and activities that give me a sense of purpose.  I am on a golf league, and my golfing friends are very understanding.  I have terrific friends, an unbelievably compassionate husband, and loving, caring sisters and mom. My kids are wonderfully supportive.  I have two adoring granddaughters who don't care if Yaya has a headache or not.  They love me just the same. Everyone has my back.  They prop me up when I don't feel good, and cheer me on when I do.

I guess I still am extremely lucky. 

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Tuesday, June 12, 2012

Migraine Awareness Month - Post # 12: "Let's Do the Monster Mash!"

The topic for day 12 of the Migraine Awareness  Blogging Challenge is:
 "Choose a movie monster that reminds you of your Migraines and tell us why."

Dragon Age: Dawn of the Seeker (2012)

This was one of those movies released directly from the editing room to DVD. I chose it because I use a  dragon metaphor to describe my migraines.   The heroine in this movie is a female character who slays the dragon.  She is a warrior, just like me.

Ever since the "Putting our Heads Together"  Poetry Challenge, I've been noodling around with a poem.  Poetry is not my long suit, so please bear with me as I describe how I perceive my battle with the dragon who lives inside my head. 

The Dragon Inside

I do all I can to keep the monster at bay. 
He conceals himself under the surface, 
emerging when I least expect it. 
He is violent, intolerant, unpredictable.
Sometimes,  his evil green eyes appear through the fog of my aura.
The smoke from his nose clouds my vision.
I see the sparks from his breath,
And smell an acrid, pungent odor that only I can detect.

Then the attack begins.
The dragon breathes down my neck.
His tail smashes against my brain again and again and again.
Pounding. Pulsating.
Hot spiny scales poke, stab, and impale my skull from the inside.
I yield to the monster, and am pulled into my private dungeon,
isolated from the world as the dragon tries to destroy
my plans, my relationships, my work, my life.
I remember that I, too, am powerful,
and shield myself from his fury.
I lay still, waiting for the invisible monster to quiet,
so I can escape this torment.

I am a dragon slayer.
Hopeful, blessed, strong, courageous.
I vanquish the dragon, emerging bruised and battered, staggering.
Weakened but not destroyed. 

And ready to do battle another day.

Monday, June 11, 2012

Migraine Awareness Month - Post # 11: "Say WHAT??"

Today's blog prompt for Migraine Awareness Month is:
"What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances? "

Right out of the gates, I'd like to thank my friends and family who call me when there is a news article or a TV episode (for example, on "The Doctors" or "Dr. Oz") about migraine.  It shows that you are thinking of me.  I really appreciate that, and even though most of these programs re-hash the stuff I already know, there may be a chance that I will learn something that will improve my life.  Thank you.  I am blessed to have such wonderful friends and family. I love you all.

However:  Most of the time, when I see people I haven't seen since my affliction with chronic migraine, they ask, "how have you been,"  or "how are you."  I know this is just a social grace, and the answer is supposed to be "great" or "fine."  Except there are some days when I don't feel great OR fine. So I tell them. "I've had chronic migraine since November 2006 and have pain in my head every day." Because my comments are outside the norm, I am met with stares, confusion, and  sometimes, ridiculous comments.  Again, I must say that usually, people are sympathetic, and if they are not, I just brush their comments aside and forget about it.

Usually, these comments range from, "Have you tried Excedrin for Migraine?" (like I haven't already tried that and about 50 other drugs) to  "You really have a headache every day?" (like I would make that up), "Have you found a cause?" (genetics, darlin'), "You can't drink? Not even a little?  Have you tried [vodka, rum, gin, etc]" (Yes, I've tried them all and they still trigger a migraine).  and "Gosh, but you look so good!" Therein lies the rub.  I have an invisible disease.  Thank goodness I don't look sick.  But sometimes, I think that if I DID look sick, maybe people would take this illness more seriously.

For example, my husband and I went to a dinner party Friday night.  I was in Day One of a visit from the Dragon;  AND I'd suffered a concussion the day before (a story for another blog post;  I hit my head and blacked out). I really wanted to go to this party because it was being given by a good friend who had recently remodeled/redecorated a condo after her home was lost in a fire.  I wanted to support my friend and see all the fabulous things she did with her new home.  I could not drive that day because I was too dizzy. I wasn't sure at that point if it was the prodrome of a migraine or the concussion.

My husband and I made it to the open house. My friend gave me the grand tour of her home, and I was wobbly going up the steps.  She asked me what was going on, so I told her.  She was concerned and sympathetic because she knows my history and has seen me when I am in pretty rough shape.  After her tour, I got some dinner and sat in the living room to chat with the other guests. I sat near an acquaintance I hadn't seen in years. She's a nice lady.  Maybe it's the blogging this month, or my effort to learn to speak up to erase the stigma of this invisible disease, but I really didn't feel too hot, so here's how the conversation went:

Nice lady: "How are you? What have you been up to?" 
Me: "Well, I've been disabled by chronic migraine since 2006."
Nice lady:  "Isn't there something they can do?"
Me:  "Well...."
Nice lady:  "You know, I had a headache once, and (blah blah blah)."
I honestly can't remember what she said after that. Maybe it was the concussion. Maybe it was the onset of the migraine.  Or maybe I just didn't want to hear one more inane story about someone else's random experience with her one bad headache just then; OR, maybe she didn't want to hear me perform my "organ recital."  In any case, we acknowledged each other with sympathetic nods, and I began talking to another lady whom I didn't know. About regular stuff.  That was much safer, and I had an enjoyable conversation getting to know someone new.

What's my point in all this rambling? People say things that they think are helpful, or because they are inquisitive, or maybe I've made them uncomfortable. I can't blame people for acting human.  Sometimes those comments come off as being ridiculous, but usually, they mean no harm. So I expect it, deal with it, and move on.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Graphic from 

Saturday, June 9, 2012

Migraine Awareness Month - Post # 10: Choose a Celebrity Migraine Spokesperson

Today's Blogging Prompt is: 
"Choose any celebrity to represent Migraine (whether they have Migraine or not) who would it be and why?" 
 Arianna Huffington.  

I think of Arianna Huffington as a modern-day Renaissance woman.  She is the editor-in-chief of the Huffington Post, and is a prolific author. She won a Pulitzer in 2012. In 2009, Arianna was named one of the most influential women in media by Forbes, and has been recognized by The Guardian and Time magazine as one of the world's top 100 people in media.  She ran for governor of California in a 2003 recall election.  She has been a lobbyist for the use of alternative fuels.

She knows the political landscape. She knows how to work all facets of the media.   She is a skilled writer and relentless promoter of causes she holds dear.  Anyone who writes a book entitled "On Becoming Fearless...In Love, Work, and Life"  could influence millions of migraineurs. 

I believe she has the power and ability to successfully rally for the advancement of migraine education, research, and support through media advocacy and political lobbying. 

She has my vote for champion of the Migraine Movement; motivating researchers, foundations, big Pharma, physicians, policymakers, employers and migraineurs toward  more equitable treatment, research, drug development, funding, and recognition of this debilitating neurological disease.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Photo found on 

Migraine Awareness Month - Post # 9: Day Dream Believer

Today, the prompt for the Migraine Awareness Blogging Challenge is "Day Dream Believer."
"Describe your dream day - without a Migraine to hold you back."
Today, I woke without pain.  My mind is clear and my power is at 100%. I slayed the dragon.

What shall I do on this glorious day?

  • My day will be rich and full of purpose and meaning. 
  • I will write a story about migraine that goes viral and is read by millions.
  • Because of my advocacy, more funding will be focused toward finding a migraine treatment that works for all migraineurs.
  • I will plan ahead, not worrying that my plans will fail because I am in the headache hole. 
  • I will have a big party for all my friends and family who have supported me throughout this journey. I might even enjoy an adult beverage. Or two. 
  • I will drive to Grand Rapids to visit my ailing 87 year-old mother and spend the night with her, not worrying about bringing a hand-full of pills, plus syringes & needles just in case I need to give myself a shot of Ketorolac. 
  • I will sleep soundly and dream of days without pain.
  • I will awaken the next day full of hope for a better future.  

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Photo from

Friday, June 8, 2012

Migraine Awareness Month - Post # 8: Let There Be Light!

Today's prompt for the Migraine Awareness Month Blogging Challenge is:
"Most Migraineurs have issues with light sensitivity. What do you do to cope with it?"
I am lucky because I don't have extreme sensitivity to light.   I do have some photophobia and am affected by light when I am in a migraine.  Light is one of my many migraine triggers.

Photophobia does not mean that I am afraid to have my picture taken.  It simply means "sensitivity to light."  Many migraineurs need to sequester themselves in a dark room, wear dark sunglasses or cover their eyes when they are in the headache phase of the migraine.  For me, there is no pain from being in the average lighted environment. I can get by with wearing regular sunglasses or shielding my eyes from ambient light with a brimmed hat.  BUT if I am in the prodrome through the post drome phases, I am very sensitive to bursts of light like strobe lights from a camera, fireworks or light show, and even the light that filters through the leaves as I drive down a country road.

Here are two examples where I am exposed to strobe light in commercial buildings.  The first occurs at the Breslin Center on the campus of Michigan State University. My husband and I have season Spartan basketball tickets. We sit in the upper deck.  For some reason, the management of the facility allows strobe flash lights in the rafters of the Breslin Center which are activated when a professional photographer from, say, ESPN, shoots pictures during a game.  I always bring a baseball hat and glasses to a game just in case. But one time, it was so bad that I asked at the ticket office if they could move us to seats where the strobes would not be as visible (or painful).  They still use strobe lights and I am still working on them to change this.

The second occurs while in the tunnel of the concourse at the Detroit Metro Airport McNamera terminal.  The tunnel goes under the tarmac and connects concourses C and B with the main concourse.  The lights start out as a simulation of the aurora borealis, but then progresses to lightning.  I wrote to the airport management and sent them links to articles about strobe light and its negative relationship with epilepsy (may trigger a seizure) and migraine. Since then, it doesn't seem quite as bad.  While looking for a link to a video of the tunnel lights (Here is a link to a YouTube video),   I discovered that there is now a "pause" button on each end of the tunnel so people like me can pass through the tunnel safely.  I am not sure if my correspondence had anything to do with it, but I like to believe in the power of advocacy.

Light as a Trigger: As I drive down the tree-lined roads of my neighborhood, the blipity blipity blip of the sunlight through the trees can be a trigger for me. If I am already walking down the road to migraine-ville, it feels like someone is poking me in the eye.  A fluorescent light gone bad can bring on a migraine in the blink of a light. I was in a meeting at the superintendent's office (I work for a school district) and I was the only one who could see that the fluorescent light bulb was blinking. I said something to the super and the assistant super. "Does that flickering light bother you?"  "What flickering light?"  The super called maintenance right then and asked to have the light fixed.  What a great boss! Live shows and even TV shows (like DWTS) will occasionally have strobe lights during the performances.  I just cover my eyes to avoid getting a migraine and ask my hubby to tell me when it's safe to watch. I also discovered  while I was writing the dissertation that it bothered me if I scrolled through my list of citations in my reference manager too quickly. Because  I keep a migraine journal, I know that  if I record a TV show on the DVR, I can get a migraine when I fast-forward through the advertisements. Now THAT'S a bummer!

Research: In the fall of 2010, I participated in a research study at MSU (published in 2011 in Cephalalgia) on the use of different colored lenses to ameliorate migraine pain.  There were two phases to this research.  The first phase involved the selection of the right color lens. I viewed a striped object through a colorimeter that allowed me to see the object through different lenses within the color spectrum.  The lens I chose was an aqua green. It seemed to quiet the object and keep it from jumping around. The second phase of the research involved spending 90 minutes in the f/MRI tube.  Mind you, until this time, the only way I could get past my claustrophobia during an MRI was to take Valium.  I toughed it out and took one for the team.  During my time in functional MRI, I was asked to view the same striped object as before - as well as additional objects - to see if different colored lenses changed the cortical hyper-activation in my brain.  The research was done with 10 other participants, and found that precision-colored lenses helped reduce this hyper-activation by 70%.
"The specific characteristics of activation we recorded could provide a potential biomarker for identifying those migraine patients suffering visual cortical hyper-activation," he said. "This biomarker could prove useful not only for further evaluation of tinted lenses but also for studying the effectiveness of drugs to prevent migraine headaches."
Unfortunately in my case, it did very little. But I DID get past my fear of the MRI, and helped advance the knowledge about migraine treatments. 

Let there be light?  Well, maybe in measured quantities. 

 Photo from

Thursday, June 7, 2012

Migraine Awareness month - Post # 7: List Topper

Here is the prompt for day 7 of the Blogging Challenge
"There are lots of myths and misconceptions about Migraine. Which one tops your list as the biggest and most common? What can we do to get the truth out there?"
"It's just stress" 
My (former) internist patted me on the hand and told me in her most sympathetic voice, "It's just stress." My dissertation committee also thought that once I was out of the program, the migraines would disappear.   Unfortunately, that was not the case.   After I was done with the PhD program, my migraines were just as bad as before.

Migraine is a neurological disease.  Stress may be a trigger, but it is not the cause. The underlying cause of migraine is not yet known, but there is a strong genetic correlation for people with migraine.  Here is a short list of a few environmental triggers, courtesy of
  • Lack of or too much sleep
  • Skipped meals
  • Bright lights, loud noises, or strong odors
  • Hormone changes during the menstrual cycle
  • Stress and anxiety, or relaxation after stress
  • Weather changes
  • Alcohol (often red wine)
  • Caffeine (too much or withdrawal)
  • Foods that contain nitrates, such as hot dogs and lunch meats
  • Foods that contain MSG (monosodium glutamate), a flavor enhancer found in fast foods, broths, seasonings, and spices
  • Foods that contain tyramine, such as aged cheeses, soy products, fava beans, hard sausages, smoked fish, and Chianti wine
  • Aspartame (NutraSweet® and Equal®)
One of the first things you need to do as a migraineur is to determine your triggers.  Some are avoidable and some are not, but to be forewarned is to be forearmed. I did an elimination diet (I ate nothing but rice and lamb for 2 weeks, then gradually reintroduced foods.  This took 2 months) to pinpoint any food allergies.  Fortunately, other than alcohol, MSG and Aspartame, I don't have any food triggers. I was really worried that chocolate was a trigger, because a day without chocolate is like a day without sunshine.

I also keep a detailed headache diary, and have been doing so EVERY DAY for the past 5+ years.  This helps me track my migraines and identify other non-environmental triggers. For example, if a massage or physical therapist presses on my spine a certain way, I am guaranteed 3 days of bed rest.  I figured this out by keeping the diary.

What can be done to get the truth out there? People seem to like reality shows. Maybe a reality show with a house-full of migraineurs?  Oh that would be boring, seeing a dozen people with the mask of pain on their faces, eyes covered, ice pack on the head, smothered with blankets because they are freezing. An episode on Dr. Drew or Dr. Oz?  How about Dr. Phil?  Is he still around?

Seriously, I think public service announcements, regular highlights on the news media (print, TV and internet), meaningful research, and doing a month-long blogging activity would do wonders to get the word out. It would really help people who are having migraine and think it is just a tension or sinus headache. Maybe they would then get proper treatment for their condition.

My friends all know about my trials and tribulations with the Migraine Dragon.   I am guilty of telling acquaintances that I am fine when I am not.  For me, it's time to go public and lose some of the embarrassment and shame that comes with the stigma of having daily migraine pain.  

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Wednesday, June 6, 2012

Migraine Awareness Month - Post # 6: "Name That Tune"

Each day of June, I am blogging about my own experiences with Migraine to help raise awareness of this disease.  The prompts are provided by the good folks at the National Headache Foundation and Headache Disorder Awareness.  

Today's Challenge:
"Choose a theme song for Migraine disease or your headache disorder. See if you can find a YouTube video of it for your blog post."

My migraine theme song is "Good Morning Heartache." This song was written by by Irene Higginbotham, Ervin Drake, and Dan Fisher,
originally sung by Billie Holiday and covered by dozens of other singers. The one  I like best is the version sung by Natalie Cole.

Here is a link to the Natalie Cole version. If you like,  substitute the word "headache" for "heartache."

Here are the lyrics:
Good morning heartache, you old gloomy site
Good morning heartache, thought we said goodbye last night
I tossed and turned until it seemed that you had gone
But here you are with the dawn

Hoo, wish I'd forget you but you're here to stay, yeah
It seems I met ya when my love had gone away
I start each day out just by saying to you
Good morning heartache, what's new

Stop haunting me now, can't shake you, no, how
Why don't you just leave me alone?
I've got those Monday blues
Those straight through Sunday blues

Oh, good morning heartache, here we go, here we go, here we go again
Well, good morning heartache, you're the one who knew me when
When I guess I might as well get used to you hanging around
Good morning heartache, I see you're back in town
Good morning heartache, why don't ya sit on down, sit down
What's your theme song?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Musical notes graphic is from

Migraine Awareness Month - Post # 5: "Do That To Me One More Time"

The fifth prompt for the June blogging challenge is this:
"What comfort measure do you find helps you enough during a Migraine that you go back to it again and again, and how do you use it?"
Apologies to the Captain and Tenille for the title of this blog.

Besides pharmaceuticals,  I have many other weapons in my arsenal to fend off the raging migraine dragon.
My philosophy is to keep it:
  • Dark
  • Quiet
  • Calm
  • Cool

There are three things I always have with me when I travel: An eye mask; ear plugs; and stress reduction and relaxation techniques.  If I am in a place were I have access to an ice pack, I use that, too. 

Dark:   I started using an eye mask about 15 years ago while working with a therapist on biofeedback techniques.  I found it helpful to use the eye mask to help filter out visual distractions.  Then I started using it at home when I practiced my relaxation techniques. Pretty soon, I found that the eye mask was actually a trigger for me to relax.  This took a couple of months.

There are lots of sleeping masks on the market, but I prefer the kind with rice, buckwheat, water or some other filler that will keep my eyelids shut.  I also like a little aroma therapy on the mask, so I sprinkle it with lavender oil.  Mmmm.  It makes me feel more relaxed just thinking about it!

Quiet: I started using ear plugs to help me sleep through my husband's snoring.  I prefer the "Macks" brand foam ear plugs (sold at Target) because they seem to last longer, and fit my ear canal the best of any other brand. One of the problems I have in the prodrome and headache phase of migraine is what I like to call "Super-Spidey hearing."  My hearing rivals that of my dog.  EVERYTHING seems very loud.  One example:  When waiting for my appointment at the neurology clinic, I was sitting next to a man who was quietly reading the newspaper.  When he turned the pages of the newspaper, I just about felt like telling him, "Could you PLEASE quit reading that paper so LOUD???!!!"  Then I realized how ridiculous that was and popped my earplugs in.  Bliss!

Calm: Stress Reduction and Relaxation Techniques have been my mainstay. Biofeedback techniques were taught to me by two different therapists.  Here's what was involved.  I got hooked up to a computer using biofeedback software.  Both therapists put sensors on my forehead. One measured muscle activity in the forehead and hand temperature, and other one measured brain wave activity (EEG).

Dr. Lake's software used visual cues. I had to think about moving an object on the computer monitor to the center of the screen.  I know. It sounds pretty "out there." But I could do it.  He also hooked up a temperature gauge to my finger and had me think about warming my hands.  I got really good at this too.  I could warm my hands 15 degrees just by doing breathing exercises (deep breath in,  out through the nose. Feel the warming sensation of the breath from my nose warm my entire solar plexus with each exhalation.)  There is research that correlates hand warming with decreased migraine pain.  Dr. Lake also gave me a relaxation CD that was VERY helpful. It is available at 

Dr. Marshall-Darling  used software with auditory cues. My goal was to make the beeps slow down; when they were beeping rapidly, that meant I was tense.  She could objectively see how relaxed I was by looking at the brain wave activity.  Then I started to use the eye mask during my appointments and BOOM!  I got to my happy place in the blink of an eye.  I am so good at it now that I can get to my happy place nearly instantly, just by closing my eyes. This is especially helpful in the dentist's chair!

I was introduced to self-hypnosis and relaxation techniques while working on a masters degree in health promotion at Central Michigan University. One of the professors did an activity in class that took us through the paces of this technique.  I found it to be an amazing and valuable tool that I can use anywhere.  This technique involves tensing and relaxing body parts, starting at the feet and working upward.  This technique is also among those available on Dr. Lake's CD.

Cool: The last method is the DonJoy Dura Soft ice pack.  Nothing beats cold when the dragon is breathing down my neck. The Dura Soft pack stays cold for hours.

Lots of people get migraines, but they don’t have to rule your life.  Of course, there are many more things to add to the list, but these are my "go-to" methods to help me through a migraine.   Perhaps you can think of more ways to keep yourself dark, quiet, calm and cool.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Monday, June 4, 2012

Migraine Awareness Month - Post # 4: Advice for summer fun

June is Migraine Awareness Month. I am blogging about Migraine each day this month to raise awareness about this neurological disease. 

Today's topic is:  June is busting out all over! 
"Whats the best tip you can offer others for having some summer fun despite Migraines?"

Like many migraineurs, I wrestle at times with feelings of low self-esteem, self confidence, and self-worth.  Sometimes I need to cancel plans at the last minute because of a migraine.  It's frustrating, disappointing, and I feel like I've let my friends and family down because I can be so unreliable. And I used to feel like I shouldn't even make plans if I have to let everyone down and cancel at the last minute. 

My family has a saying: "If you don't have fun it's your own fault." Although that's not ALWAYS easy to do when you are suffering from a chronic illness, my best advice is to aspire to live your life in a way that is satisfying, full, and true to who you are.  Instead of thinking "What if...",  have a positive attitude when you get an invitation to participate in something fun.  If you find you have to cancel, well, at least you gave it a shot. For example, today I played golf with a friend I haven't seen in a while.  I have been fighting the dragon for the past 5 days. I could have easily declined her invitation, but did not.  And we had a great time today.

I have two other tips for summer fun. The first is to discover and be mindful of your triggers.  Two of my triggers are related to refreshing summer beverages - anything with alcohol, and anything with Aspartame. Crystal light is like poison to me, and alcohol makes me sick for 3 days, even just a few sips.  It took me a long time to be able to say, "No thanks, I don't drink." As Popeye would say, "I yam what I yam."  Now, I am everyone's favorite designated driver.

Lastly, dehydration is often a trigger for migraineurs. Make sure to keep yourself hydrated, preferably with water or a decaffeinated beverage.  

I hope you have a wonderful summer full of family, friends, and good times.  And NO dragons.

Hang on to your dreams. Live your life. 

National Migraine Awareness Month was initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Sunday, June 3, 2012

Migraine Awareness Month - Post # 3: Worst Trigger

Today's topic is: "Just shoot me now!"
What's your worst Migraine trigger? Can you avoid it? How do you handle it?
My worst migraine trigger is second-hand cigarette smoke. It is my worst trigger because it is something over which I have no control.  

Fortunately, Michigan's Smoke-Free air law went into effect May 1st 2010. Until then, I had to restrict my attendance in many social settings and at activities and events,  or dreaded going to them. For example:
  • My husband's business had a Christmas party at a bowling alley.  I had to leave when the second-hand smoke wafted into the private "no smoking" room at the facility. I got sick on the way home.
  • I took a billiards class through a local community college. It was held at a nearby sports bar. The pool table area was "smoke-free" but across the hall was a poker player's room - with blue air filled with smoke -  and the bar area up the hall was rife with smoke. I had to walk through that area to use the restroom.  I ALWAYS woke up with a migraine the day after class.  I spent fifteen weeks dreading this "fun" class because I knew it would be followed by misery. The LAST day of class was on the first day of the Smoke-Free law.  I celebrated when I did not get a migraine the next day.
  • My son is a musician who tours all over the country. When he plays locally, I always go to his gigs, but my attendance was bitter-sweet before the ban. It was great fun listening to and watching him perform, but I knew that between the smoke, loud music, and lack of sleep,  I would be sick for 3 days afterward. 
Conservative members of the Michigan House and Senate are trying to weaken the Smoke-Free Air law.  It has been such a blessing to me;  I have written lawmakers to let them know how the law has positively impacted my life and that it actually allows me to support local restaurants MORE than before because I know I won't encounter second-hand smoke that will make me sick.  

Despite the law, I am still negatively impacted by cigarette smoke. Just yesterday, I took a semi-private photography class with 3 other women. The class was at the instructor's home. When we were shooting outside, he lit up.  I tried not to make a big deal about it (it was his home after all), but just nonchalantly wandered upwind as much as I could so I wouldn't be exposed to the smoke. Sometimes I am not so lucky, and am in situations where I cannot escape the smoke.  Most times, I tell the smoker in a very kind and apologetic way that the smoke from their cigarette is an instant migraine trigger for me, and could they please put it out.  Most of the time they acquiesce, but there have been times (like outdoor seating at a restaurant) that people get downright belligerent.  One time, my husband got right in a guy's face.  Now we just get up and leave. 

I am a health educator and a nurse, so I think smoking is a stupid thing for people to do, but I am not militant about it. I just don't think people realize that it's more than second hand smoke to me.  It's an avoidable migraine trigger.  So if you are a smoker, please understand that it's not you, it's your nasty habit that makes me sick.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by

Saturday, June 2, 2012

Migraine Awareness Month - Post # 2: Tea for Two

My mission for today's entry is this:
If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why?
This is an easy one.  I would invite the professor who blocked my efforts toward successfully defending my PhD dissertation.

I began my journey with chronic migraine in November of 2006, shortly after presenting my dissertation proposal to my committee of 4 professors.  Between the cognitive effects of the migraine and the side effects from the preventive medicines I was taking, doing research and writing a dissertation was very difficult.  But I did the best I could, working when I felt able, poring over the mountains of data, citations in the literature, and trying my hardest to present a cogent thesis.  It took me 2 years to complete rather than the 6 months I had originally intended.  I communicated with my committee at every turn, but She-Who-Will-Not-Be-Named (SWWNBN) was not just unsympathetic. It seemed as if she simply dug her heels in harder, and became even more combative. While it wasn't the best paper I'd written, it was 248 pages of blood, sweat, and more than a few tears.   On more than one occasion, SWWNBN argued that I should have done Y instead of X, but when I reviewed the transcripts of the audio recordings of our meetings, I did exactly as she originally requested.  She played many other mind games, like being 45 minutes late for the defense, then telling me that her 12 year old daughter could have written a better paper.  Hers was the vote that sunk my battleship.  I worked for 8 long years toward my PhD.  My GPA was 3.9.  I earned the degree; I just can't put it on my resume'.

Migraine is an invisible disease. Even though I don't "look sick,"  I certainly am debilitated.  I used to think that I wouldn't wish a migraine on anyone.  But in the case of my mystery guest, I wish I had a voodoo doll and could poke her in the head for an hour or so, just so she'd get a little taste of what it's been like for me. 

Here's what our meeting would sound like:

Hello, Professor. Thank you for joining me for tea.  Would you like sugar? It certainly seems as if you could use it.  Or are lemons more to your liking?

I'd like to tell you about my experience with migraine. Contrary to what you might believe, it's more than just a "headache."  It is not some lame excuse people use to skip out on their responsibilities.  It's not something that frail women fall back on to get attention. Most migraineurs I know would much rather be living healthy, productive lives than laying in bed in a dark room with earplugs in their ears and an ice pack on their heads.  This was my daily routine while I heroically tried to write my dissertation. 

You see, migraine is more than just a neurological disease. It is a systemic affliction that impacts my vision, hearing, sense of smell, gastric function, balance, and proprioception.  Although stress can be a trigger, that was not the cause of my disease.  I have the genes from my paternal grandmother and my mom to thank for that.  

During the course of treatment, my mission was three-fold:  To discover my migraine triggers,  to learn how to cope with the pain and disability through self-hypnosis and cognitive behavioral therapy, and to find a preventive medicine that would ameliorate the symptoms.

My most reliable triggers are alcohol, smoke, flashing lights, loud noises, and lack of sleep.  Unfortunately, reading for more than 30 minutes is also a trigger.  No wonder I had so much trouble while working on the dissertation, eh?

The meds used for migraine prevention must be able to cross the blood-brain barrier. That means that the most of the meds I've tried were developed for diseases other than migraine, such as epilepsy and psychosis.  At last count, I've tried over 50 different medicines to prevent, abort, or rescue me from the pain.  I have experienced negative side effects for nearly each one of these medicines -  including gastritis, constipation, diarrhea, nausea, vomiting, heartburn, overwhelming fatigue, somnolence, insomnia, numbness and tingling in the extremities, weight loss, weight gain, anxiety,  apathy, lethargy, depression, mania, auditory hallucinations, suicidal thoughts, feeling disconnected (like I was watching my life on TV),  itching,  rash, hypertension, hypotension, dizziness,  peripheral edema, hair loss, tremor, blurred and double vision, tinnitus, short term memory loss, cognitive impairment (I couldn't add, remember a phone number or do a Google search - even though before the chronic migraines, I created a pamphlet to help people learn how to do a Google search), aphasia, poor motor function and reflexes, inability to drive a car, no libido, kidney and liver impairment, irreversible thickening of the heart valves, palpitations, chest pain and tightness, and, well, you get the idea. I experienced nearly every one of these side effects at one time or another while doing my research, writing my paper, and during my defense.   It's been a constant balancing act between tolerating the side effects of the medications to prevent the attacks and the impact of the migraine itself.

Most people would have just packed it in and quit.  I am not a quitter.  Persistence is my middle name.  I never gave up and never gave in until the clock ran out and the university told me I was done.  I felt very defeated for several months, so I guess you accomplished your mission.  So much of my identity, my dreams and aspirations during those eight years were cloaked in the vision that I would someday be a college professor.

Now that the experience is behind me, I still feel disappointed at what could have been, but have intellectualized it.  Truthfully, there is no way I could maintain a full time job because the migraines are still unpredictable enough that I am impaired at least 7 days a month.  Still better than every day, but I certainly would not want to hire me.  I have a part time job at a middle school and have taught while in a migraine.  I just have to be honest with my students.  I say, "How many of you have ever had a headache?"  Nearly all hands go up.  "How many of you have ever heard of a special kind of headache called a migraine?"  Some hands go up.  "Have you ever had a migraine?"  To my great sadness, a few hands go up.  Then I tell them the kind of problem I am having that day. For example, "I need you to be especially quiet because I have super-human hearing today."  Or, "I can't read the PowerPoint, so I'll need you to help me with the slides."  And the students are great.  But I feel like I am doing a sub-par job that day, and hate that my life and livelihood are interrupted by this disease. 

You see, not only am I negatively affected by the medicines, but the migraine presents a different set of problems.  There are 4 phases to the migraine which can last from a few hours to a few days.  Most of the time I was doing my dissertation, I had one migraine after another, repeatedly going from prodrome, to aura, to headache, and to postdrome - over and over, again and again and again.  It was endless, agonizing, and totally debilitating.  Here's what happens during those 4 phases. 

During the prodrome, I might crave carbohydrates, yawn a lot, feel very cranky and irritable,  feel exhausted for no apparent reason, and sometimes my vision will get so blurry that I can't read, drive, or watch TV.  One time, I remember driving down the road when the prodrome hit.  I saw two birds flying in perfect synchronicity.  Except it was ONE BIRD.  Then there are times that I cannot finish a sentence because I can't come up with the right words. I also have trouble concentrating, even to read something as simple as the comics.  One other odd occurrence is that I smell things that aren't there.  I used to accuse my husband of having a really acrid-smelling body odor until I realized that nobody else could smell it.

Not all migraineurs have an aura.  I have a visual aura about 20% of the time.  I call it my "Oh Sh*t" moment.  Sometimes it looks like sparks in my field of vision, or a dark spot that is similar to what you would see when watching a film and the film catches fire and melts. It starts out as a dark spot in my field of vision, then turns bright. Other times, I'll see bursts or blobs of light when I close my eyes.  It is usually orange, yellow or green, and looks like I am viewing explosions on earth from about 1000 feet in the air, or like a lava lamp with orange (or yellow or green) goo in blackish grey liquid. If it wasn't the harbinger of 3 days of agony, it would actually be pretty.

The headache phase consists of going into medication and hibernation mode.  I am in pain and have other neurological and systemic problems.  I use a 5 point scale to rate the pain.  I start medicating when I get to level 2, and give myself an injection if it gets to level 4.  At  4, I have trouble preparing the injection because I am 80% bed-ridden and can barely function. At level 5, I am writhing in bed and can't talk because the pain is so bad; I feel like I will pass out.  Fortunately, I have had only two migraines that reached a level 5. The pain starts out as a fullness or heat, usually on the left side of my head in the area enervated by the trigeminal system. It throbs. If it progresses, it feels like someone is shoving a hot poker in the side of my head, or like someone drilled a hole in my skull and has poured acid on my dura mater.  However, the headache phase of migraine comprises so much more than head pain.  I have trouble reading, everything is super loud,  and I am sensitive to light. I can't really hold a conversation. My affect is flat. My husband can immediately tell if I am in a migraine because I look so droopy.  I can't smile. I have no sense of humor, and no empathy for others. Often times, I feel like I am  freezing cold.  I do everything I can to help the pain go away - for example, self-soothing techniques like meditation and self-hypnosis.   Because of the memory loss I have when I am in a migraine,  I often forget what I did to help myself get better. I have to write it down (if I can function well enough to do something that simple). My family has learned that I am apt to forget important details when I am in the headache phase; I may not remember an entire conversation at all. It's agonizing.

The postdrome phase of the migraine is what I like to call "the hangover."  It can last a couple of hours to an entire day.  The pain has gone, but I feel distracted, unbalanced, unsteady, and like my IQ has dropped about 30 points during the whole ordeal.  Many people say they feel like a zombie.  That just about sums it up.  

I am not the only person who is  negatively affected by the side effects from medicines and from the migraine.  My friends and family have also been impacted by this disease. I've bailed out of many social events, family parties, and intimate gatherings.  My husband has the patience of Job.

The other members of my dissertation committee understood what I was going through.  You did not.  I hope now you have a better sense of my life as a migraineur.  It's a constant battle with nothing to buoy me but the hope that I will find a medication that will help or that researchers will discover a different treatment (medical or surgical) that will end this roller coaster ride.

Care for a scone? 

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by

Friday, June 1, 2012

June is Migraine Awareness Month - Post # 1: My first migraine

Today is the first day of Migraine Awareness Month. My mission is to report a different aspect of migraine each day of the month.  I was hesitant to do this because of the stigma associated with migraine. A blog is such a public space, and I wasn't sure if I really wanted the world to know about my struggle with this disease.  But part of the problem with stigma is that people feel ashamed and closeted.  When people don't discuss their struggles, myths and misconceptions are perpetuated.  I decided to forge ahead,  hoping that in some small way I would help erase some of that stigma and feel less shame about my own struggles with migraine. 

The topic of this post is "my first migraine."

I have always been a headachey person.  I just thought that everyone had a lot of headaches.  I have since discovered that is not true.  I don't remember having a MIGRAINE until I was about 32 years old. I was struggling with a rare disease called Chronic Erythema Multiforme (CEM). This was a blistering disease that affected my skin, lungs, mouth and stomach. Medical professionals weren't really sure what caused this disease, but I was on prednisone each time I had a flare-up, which was about 3 times a month.

What I remember is having what I called a "three-day headache" prior to a flare-up of the CEM. I told my doctor and he did the requisite MRI, but did not call it a migraine.  He probably thought it was related to the Erythema Multiforme.  I remember being very frightened during this time of my life, not knowing if I had lupus, lymphoma or some other fatal disease. The head pain only added to this anxiety.    Because I was already so sick from the CEM, the details of my very first migraine are sketchy.  I do remember the head pain as very different from previous headaches; not only the duration, but the intensity and location of the pain, which was on only one side of my head and throbbing in nature. Tylenol didn't touch the pain. After the pain was gone, I felt hung over, off-balance, and would run into walls.

I was taking an antiviral at that time to see if it would help the CEM.  I thought the head pain was a side effect from that drug, so I stopped the drug, but the episodes of head pain continued irregularly from every couple of months to a couple times a month. That's when I decided it was more than just a headache.

Having a rare chronic disease is a very isolating feeling. Having TWO chronic diseases is down right scary.

Artwork from

Title: Migraine Pain
Artist: Jennifer Dochod (Grand Rapids, MI)

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by