Sunday, June 9, 2013

Hanging on to Hope

June is Migraine Awareness Month. (I ask that if you read nothing else in this blog, that you read that which is written in red and maybe that will convince you to read further.) During this month, many advocates try to raise awareness about Migraines through posting facts about Migraines on our Facebook pages, wearing purple, writing blogs and a number of other activities.  We want for you to be aware of the facts.  Facts like

     37 Million Americans live with Migraines.
          Of these, 14 Million live with chronic daily pain.
               But there are only 418 board certified headache     
                    Migraine leads to more lost years of healthy life
                    than do tuberculosis, Multiple Sclerosis, epilepsy
                    and ovarian cancer Combined.
                         There is no cure for Migraines.

To those of you without Migraines, these are just mere facts.  However, Migraine Awareness Month took on a whole new reality for those of us in the Migraine community when a beautiful young woman took her life Thursday as a result of the pain, desperation and hopelessness that she felt due to her Migraines.  Many of us have spent the weekend crying over this - even those who never knew her.  This is not an isolated incident....I have personally known several other people who have attempted to take their lives over the past year because of their Migraines.  A couple came close and ended up in the ICU.

These people were not weak people; they were not emotionally unstable; they were not lacking in strength; they were not lacking in faith or in the desire to live a good life.  These people have friends who care deeply about them.  They have all visited multiple doctors trying to find an answer to their pain and other symptoms.  They all sought counseling prior to their attempt.  Each one of these people was just like you and me.  However, unless you also live with chronic pain that feels like an anvil is being driven into your head, experience constant nausea and vomiting, have light, sound and odor sensitivity (among other symptoms), have lost your job, have lost the ability to drive and have gone from doctor to doctor desperately seeking an answer, You Really Have No Idea What It's Like.  If you did, you would understand what leads a person to feeling hopeless and overwhelmed to the degree that they would actually consider ending their life.

To those of you with Migraines, I understand....I have been there.  I live this with you every day.  But the one thing we cannot afford to lose is Hope.  None of us knows what tomorrow holds - what new treatment might be right around the bend.  We have to fight this beast Together.  I believe that the greatest thing we can do for one another is to hold out hope - real hope.  It's true that we might not know how to make our Migraines disappear or lessen, but there are some other beautiful things that we do know.  We know that in the midst of pain, we have come to know incredible people who suffer in similar ways who we would have never met had it not been for our Migraines.  These people and others have held on to hope for us when we couldn't do it ourselves.  We know that these people constantly amaze us by sharing their strength, their encouragement and their successes.  When we share our positive stories (even if they are baby steps), we strengthen one another.  Similarly, we bear one another's burdens.  We choose together to focus on that which is possible and positive - that which builds hope.  Conversely, when we focus on our sorrow, our pain, our loneliness and our hopelessness, it is Contagious.  This doesn't mean we can't share things, but we need to be careful about where our focus and emphasis lies.  It has to be on Hope.

What other things can be said that we know to be true and positive about our lives even with Migraines?

     Laughter prevails; friendships endure; servant hearts come to meet our needs; beautiful flowers grow; lovely music which enriches our souls is written; babies' smiles make us smile; furry friends comfort and amuse us; caring doctors are found; the hugs from a family member or friend warm our hearts; time is spent with ones we love that we can never get back again; the promises of faith endure forever.

Dear Migraine friend, you are not simply taking up space.  You are not a burden.  You are not worthless just because you cannot work or cannot contribute to life and others as you would like.  You are a beautiful and important person - to me and others.  You make a difference in someone's life.  You are the source of another person's smiles, warm heart and laughter.  Without you, someone's sun is eclipsed.  You may not share my personal faith in God, but I believe from the bottom of my heart that each and every one of you was created for a purpose and that you are cherished and celebrated.  Even when you don't feel that way, it doesn't change the truth.  Hold on to truth....hang on to hope.  

Hope is not always a feeling.  Many times, it is a decision and choice to look for the good and the possible, to open our eyes to the many things that bless and enrich our lives.  It is also a decision and a choice to say that we are worthwhile.  We are not defined by our illness, but by who we are and can become as human beings.  Strip away our health, our financial standing, our independence and even some of our relationships (all of which are frequently lost in this war with Migraines) and believe the truth.  Regardless of what we do or what we have, we are valuable; we belong; we make a difference.

I urge you to not be ashamed of the depression or sense of futility that you may sometimes feel.  I urge you to choose to get help rather than to dwell on desperation.  There are good doctors out there.  There are caring therapists.  There are caring friends.  You are not alone.  You can do this....we can do it together.  

If you have Migraines and feel alone, please consider joining the American Headache and Migraine Association - Find it here -, look for support groups on Facebook,, or contact me, and I'll help you make connections.

If you are a Migraineur who has lost hope, I beg you to call a therapist, to call 1-800-SUICIDE or to go to this link for the National Suicide Prevention Hotline.

Migraine Awareness Month is not just about facts. As the events of this past week have driven home to all of us, it is about real people searching for real hope.  

If you are not a Migraineur and you want to know how to help someone you love, check out these letters by Teri Robert.  Other great sources to check out are this blog by Diana Lee or this blog by Ellen Schnakenberg.  You might also want to consider making a contribution in your loved one's honor to AHMA (link) or the American Headache Society (link) so that further research and treatments can be developed.  If you want to know more facts about Migraines and headache disorders, go here.  If you want to know more about advocacy efforts, please check out the Alliance for Headache Disorders Advocacy (link).

June 2013, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of



  1. Thank you so much for this post! So many lives are touched by migraine/chronic head pain, and you have so eloquently said what sufferers and supporters alike need to hear. Thank you!

  2. And just when I thought I was done crying for the day...It's okay though. These are tears of joy for all the beautiful angels in my life. God bless you, Cyn!

  3. Thank you for this blog----my 38 year old daughter Natalie began 24/7 head pain at age 30---and is still at 6--8 on a 10 point scale of pain each day with no meds able to touch it ! Many say it is an invisible pain---so she has not been able to get on disability although she has lost her career , her home , and savings---now even her insurance. She has been to seven states chasing hope with doctors and a well known clinic even told her to "just learn to live with it" !! Crazy !! She is now "living" with us (her parents) but feels as you related "a failure" in her life although she is a beautiful intelligent creature who desperately wants to feel better !!
    There is a doctor here in our town who has found a way to give her up to 4 hours of relief (brings her pain to a 2) through a procedure sticking long Lydocaine infused Q-tips up her nostrils which touch an area of her brain (triamgelia--sp?)---she is hoping for a more permanent solution with a neuro-stimulator implanted in the roof of her mouth that she can control---BUT this procedure is only done in Europe successfully so far even though the transmitters are made in California !!! ( Waiting on FDA approval to be done in the USA !! ) Again CRAZY !! But forever we will be chasing HOPE for her pain relief !! We are also in HOPE for all of you !! Natalie's mom Jo

  4. Jo - How I feel for both you and Natalie! Is she involved in any of the online support groups for Migraineurs? We share everything from good doctors, to hopeful treatments, to love and encouragement! I'd love to talk with either/both of you if there is anyway that I can be of support or encouragement. You can get me at (I hope that is right - lol) The correct way to get me is at the top of my blog!

  5. Thank you for this post.
    I per say am not a chronic migraine sufferer, but a chronic headache sufferer. Since age 12 I ha strong headache every 3-8 weeks lasting for 2-4 days. I was told they are migraines like grandma had, it only turned out later they are not typical migraines. Fast fwd 2008 the headaches got stronger and more forward 2011...for the past 2 years my headache is pretty much non-stop, 24/7, day and night, some month no pain-free day on a good month maybe 3-4 headache-free or very low-headache day, the pain is usually extremely strong (I am not good at numbering) at times it feels like a clear migraine, but generally it doesn't fit into the typical migraine, neither to the typical cluster or tension headache category... I feel pretty despreate and alone for this disease. Can you suggest any online support groups?

    Jo, I just turned 30 and I can relate to your daughter's misery, except I can't move back with my parents and have no parental support, but still being 30 and practically disabled by headpain is relatable. If your daughter wants to connect, please check: or email at