Chronic Migraine Awareness

This is Deborah B’s story:

Over the last 17 years my migraine disease has become chronic.  Despite seeking medical treatment and trying almost every option available, no one has been able to turn off the pain switch to my head.  I suffer from many migraine days but refuse to let them define me.  I have a supportive husband and two children with whom I just wanted to have a “normal life”; a me, free of chronic pain.  I had migraine attacks in my teens but they subsided until I reached my early 30’s.  I never imagined how to raise a family with me being like this, because, when my children were born, this me did not exist.

            At first, I thought that, like when I was in my teens, my migraine disease would be a distant memory by now or at least be well controlled.  Instead, each day I get up and move forward because I have family and friends who love me and want me to be a part of their moments just as much as I want to be there.  I also manage a part-time job in a career I love, so, again, I try to push through to be there and make a difference.

            I would like to blame someone or something for my chronic pain, but the truth is that I have a chronic illness, and right now, no one can answer why it is resistant to treatments.  Prior to spring 2018, my current headache specialist had helped me exhaust all medication possibilities that were available.   The plan then became to hold on and wait for the new CGRP medications to come to market.  During that spring, the first of the medications became available, and I could not get that medicine in my possession fast enough!  I was so excited that my life could change for the better!  However, after two doses into that medication, on July 6, 2018, I suffered a small stroke.  Thank goodness my symptoms were mild, but an MRI in the emergency room confirmed that I really had suffered a stroke. So, on the second to last day of summer vacation, my plans to go to the beach soon became a hospital admission instead.  Of course the first question was, why does a healthy 48 year old woman suffer a stroke?  Was it from the new medicine?  Could there be another reason?  After a 5 day workup the answer became 86% certain that I had suffered this small stroke because of a small hole in my heart called a Patent Foramen Ovale (PFO).  All healthy babies in utero have a PFO as part of fetal circulation.  A PFO usually closes on its own at birth, but 1 in 4 people walk around with this their entire life and never know it exists.  Unfortunately for me, on July 6^th a tiny clot had been circulating in my blood and had slipped through the hole and went to my brain causing the small stroke.   I would need to go to cardiology and have the hole patched during a cardiac catheterization.  So just when I thought my migraine life could not get any worse, the team of doctors decided that I could not take any medications that would cause vasoconstriction in my body.  This would include taking away all the triptans forever, which I relied on 2-4 days per week to function, and further, just in case the new medicine had played a role in the stroke that was unknown yet, I could not be on any of the new CGRP medications. Also, since they never found where the clot came from, until the hole could be closed, I could not lift heavy objects or exercise for concern it could cause another stroke to occur if another clot was circulating and did the same thing. Needless to say, with this news, I could not hold back the tears.  I asked the doctors if they realized how difficult it was to push through my days on my current medicines?  How would I possibly manage to live now without them?  The answer was simple from their perspective; they had to decrease my risk of having a stroke again.  I understood their point of view but was crushed by the road that seemed to lay ahead of me.

            A meeting with my headache specialist just a week later provided a glimmer of hope, however.  The doctor said that if I was able to get the PFO closed, he would consider  restarting my medications.  I called every major medical center to try to get an appointment to make that happen as soon as possible.  But I was not considered an emergency.   So until the PFO closure, my migraine go-to medications became a muscle relaxer (that put me to sleep), Tylenol and anti-nausea medicine.   For my family and I, it was a very long summer!  I was finally seen at the end of August for a cardiac consultation and the PFO was closed the day after Labor Day 2018.

            At the end of that September, after much thought and discussion by my headache specialist and my stroke specialist, it was decided that my stroke was most likely caused by my PFO.  No one will ever be 100% certain about the cause of my stroke.  So when it came time for my family and I to weigh the options for my migraine treatment, it came down to 3 things: believing in the high certainty that the PFO was the cause of my stroke, my desires for a better quality of life, and a leap of faith. The doctor gave me back my triptan to use (but allowed them for less days per week), and I restarted a CGRP medication. 

I believe God has a plan; after all this I admit I had trouble figuring out what that was, but I believe there is something beyond me and this pain. I have mild residual stroke symptoms that remind me how lucky I am that my stroke could have been so much worse and my migraines too for all these years.  I now try to find something positive in every day, even if it is something very simple I wouldn’t have noticed before.

            This all sounds like I have it pretty put together!  But the truth be told, while being able to function every day is my goal, it has been beyond my grasp on numerous days in the past.  Being on a CGRP medication, my life is better than it’s been in 17 years.  However, I still have varying levels of daily pain where on some days, I am more functional and other days, though less frequent than before, I still hold up in the dark, listening to the world go by without me.  On some of these days I can be a puddle of tears and disappointment, holding my head, asking God if he has forgotten me down here.  I don’t understand why I  can’t respond well enough to all these medicines so that I don’t have to miss a day of life because of migraine disease.  However, this does not mean I give up, but rather, when I fall into my darkest hole, I dig my way back out, dust myself off and begin again.

As my journey has unfolded, I have changed.  I used to try to down-play my migraine disease and not talk about it beyond my close family and friends, for fear of being misunderstood, pitied, or rejected.  The doctors, and other people that I have left behind because of this, often times brought me to tears of anger or disappointment, but I now realize that they have done me a favor.  These people never could have heard me, and, therefore, never could have helped me.  The fabulous doctors whom I have met have taught me to ask questions, educate myself and never give up hope. While I admit that I still get frustrated wanting to be more, I am being the best version of me that I can be right now.  So if you find yourself in that dark hole today, I am extending my hand to you.  With new treatments still coming, hang on, as the best us is yet to come!