Sunday, October 5, 2014

13.1 Miles to a Success Story in Chronic Daily Migraine (New Persistent Daily Headache)

Today, I ran a half marathon.  I finished with a giant smile on my face.  My time didn't matter, this journey's success came when I reached the starting line.  I am writing this post to share some great news in what has been a very long and challenging personal journey.  I share my story as a celebration, but also as a note of hope to anyone who may be fighting a similar battle.  I have read sad and difficult stories from others struggling with similar headache issues, but I rarely saw stories of success.  Maybe my post will provide a few new ideas or a ray of sunshine.  No matter what your struggle (and we are all struggling with something), I pray you will soon find some relief and comfort. 

My chronic pain story began over seven years ago.  It started with five years of pelvic pain and many blog posts along the way.  It took four surgeries and surgical menopause, but my pelvic pain was finally resolved.  Then, just six weeks later my headache story began.  Until this head pain began, I was one of those lucky women who never really got headaches, excluding, of course, the after effects of some fun nights in college.  Then, in August 2012, I got a headache.  That headache simply never went away.  It didn't take holidays or vacations, it pounding away 24/7.  No matter what I tried, my head hurt.  On the really bad days, the head pain was coupled with dizziness, nausea, diarrhea, and ringing ears.  

It was like a black cloud that followed me around.  It was there through three moves, two new careers, and three new schools.  It was raining down with full fury during the boring of the everyday and every family holiday, birthday, and vacation - from our 15th anniversary to our cross country move - my head pounded away.  While it was my head that hurt, I  wasn't the only one who suffered.  It is so true, "when mama ain't happy, ain't nobody happy."  Scott picked up tons of slack around the house and the kids had to (literally) tip-toe around.  I was cranky and tired and even simple things like grocery shopping often felt impossibly hard.  My mom listened as I cried on the phone and my mother-in-law gave medical advice when I needed it.  My close friends provided me a shoulder lean on and play dates for the kids when I was feeling my worst.  I am eternally grateful to the amazing kindness and generosity I found in those around me.  

All the while, I visited every "ologist" from East to West trying to find a solution.  I started with an ENT thinking I had a sinus infection.  I took tons of antibiotics and steroids.  It didn't help.  I even had sinus surgery.  It didn't help my head either, but it did solve my congestion issues.  So that was a good thing. 

Then, I was off to a gynecologist, thinking hormones might be the smoking gun.  I was only six weeks post-op from losing my last ovary when this all started.  In the throws of surgical menopause, I figured getting my hormones in balance would help.  It didn't. 

Next, I was off to the neurologist.  Then, off to another neurologist.  Then, to many other neurologists.  I had an appointment to see the specialists at Stanford Hospital before I had even figured out temporary housing when we moved to California.  There were MRI's and xrays and strange tests checking my reflexes.  The official diagnosis was New Persistent Daily Headache and/or Chronic Daily Migraine.  In lay person speak, it was a headache the doctors didn't really know how to treat.  Next, came the meds, all the crazy neurology medications.  They often would start to help, then things would revert, and then things would get worse, and then they would add another, stronger medication to the cocktail.  It was like the headache just found a path around every medication I tried. There was Topamax, Lyrica, Zonegran, magnesium, riboflavin, butterbur, feverfew and more.  Every one of those treatments came with really crappy side effects, things like personality changes, memory loss, dizziness, and nightmares.  We even tried an ongoing series of IV infusions which would leave me in bed throwing up for the rest of the day.  

Last fall, I even got a root canal thinking it might.  It didn't.  Truthfully, I really needed that any way.  My ancient filling back from my braces days finally gave way.  

The low point came after one very pompous provider claimed I didn't even have a headache.  I was in the worst pain of my life and she said it was anxiety and a simple ear infection.  I was crushed when she blew off my pain; I began to believe I would never feel better again.  By that point it was December 2013 and I was exhausted.  

My 2014 New Year's Resolution was to simply find the joy in each day and to not give up.  It was the best resolution I have ever made.  I was off to another ENT.  He was one of the kindest providers I have ever met.  Definitely no ear infection, but he had new ideas.  I went to vestibular physical therapy for migraine.  It helped.  It became my life line.  It wasn't a cure, but I could get through the day again.  

I saw a naturopathic doctor.  I went on a crazy diet that eliminated wheat, dairy, soy, most beans, all alcohol, and most everything fun.  I didn't help, but I started eating a little healthier.  That was good.  

I started an 8-week mindfulness series.  It didn't help my head, but it allowed me to focus on all the good in my life instead of the pain.  It brought a little more patience and appreciation of each day.  That was a good thing.  

I went back to the neurologist and asked about stopping the medication.  They said it was a mistake and prescribed something new, but basically the same.  It didn't help, but it gave me confidence in May 2014 to advocate for myself.  I stated I was going off the medications.  It took six weeks to taper off those powerful medications, but each time I lowered the dose, I felt better.  My nausea and dizziness dropped significantly.  My head still hurt, but I felt like myself again.  

It was then, way back in May that I signed up for the San Jose Rock and Roll Half Marathon.  It was my secret, I didn't tell anyone, not even Scott.  I decided I was going to fake feeling healthy until I made it.  I started running, just a tiny bit at first, but one foot in front of the other.  

Then in July 2014, looking once again where this all started, I tried a new gynecologist.  Despite taking lots of estrogen pills it turned out my levels were close to zero.  We tried a new approach and my estrogen levels climbed.  With each blood test my levels rose to more typical level for a 40-year-old.  My head hurt less and my energy rose.  I kept running, slow and steady.  

Now it is October 2014 and I am not cured, but I am so much better!!!  I still do my physical therapy exercises every day and I take Phenergan when I need it (strangely, that medication helps).  My bad days now are what my good days were back in December 2013.  Today, I ran strong and hard as a celebration of a positive time in a very long journey.  


I have held off writing this post until I felt more confident this wasn't yet another false hope.  Yes, I may revert. Today, I feel good.  Each day I feel well is a gift.  I am so grateful to feel better and am working hard to not take it for granted.  Today, I ran to celebrate my good health; Scott and the kids were at the finish cheering for me.  This race was a celebration for me and for them as well.  This has been their journey as much as mine.  Thank you!


That is life in MomZania.  

1 comment:

Anonymous said...

Hi, I just came across this post. I am an a similar situation with the constant headaches (also seen at Stanford, and a Bay Area resident) thank you for providing some hope, I love running too. I would really like to connect with you (lorianneburns@gmail.com) if you are willing, as I am sure you understand how difficult this is. It's great to see how rich of a life you are living. Thank you-Lori