Pain: What to do when drugs fail?

I had my first migraine when I was 10.   I was at school, in immense pain.  Light hurt. Sound hurt. Being touched hurt.  My neck and shoulders were tight with tension on my right, the sharpest pain behind and above my right eye.

Pain What to do when drugs failThe school nurse had my parents pick me up from school, and my dad, who also has migraines, called his physician to meet us at the emergency room.  When we arrived at the ER, my dad’s doctor gave me a thorough evaluation and diagnosed me with migraines.

During the early 80s, migraine pain medication was limited for children to tylenol with codeine. It did help with the pain and migraine symptoms, but it had a side effect the doctor wasn’t expecting: the codeine made me hyper and agitated.  I had to be strapped down to help keep me quiet so I could recover.

I had to learn how to be calm and still even though the medicine made me want to move and my mind raced at 1,000 mph.  I was given the abortive drug cafergot to take instead when I felt a migraine coming on, and fifty percent of the time, cafergot worked. When it didn’t, I took tylenol with codeine.  

Over the next ten years, I used these two drugs with 80% success rate for managing my migraines.  The other 20% sucked, and I’d end up spending days in a darkened room, wishing for relief.

While on active duty in the Air Force, a new migraine drug came on the market.  Imitrex was supposed to be the best abortive migraine drug on the market, initially delivered via IV at a hospital.   I asked my military doc for a prescription for the Imitrex, and he complied, telling me to go to the base hospital the next time I had a migraine.

So for the next migraine, I went straight to the base hospital for my IV of Imitrex.  And unfortunately, the Imitrex made my migraine  a thousand times worse!  I was in so much pain I couldn’t drive, so I called a friend and crashed on her couch for three days until the migraine passed.  I was so disappointed.  

Back to my 80% solution for managing migraines.

Over the next five years, I tried several new abortives and preventatives as they came on the market.  None of them worked for me.  Each time I tried a new drug, I’d end up returning to my old stand-bys of cafergot and tylenol with codeine, the success of which had decreased to less than 50%.  Eventually my migraines became so severe and unmanageable, I was medically discharged from the Air Force and ended up at the VA Medical Center.

The VA diagnosed me with bipolar disorder and placed me on depakote and topamax to manage the migraines and bipolar disorder, and they upgraded my pain medication from tylenol with codeine to fioricet.  This combination initially worked, until one morning in 2004 while showering for work, I started burning from the inside out, like I’d been exposed to chemical weapons. Clothes hurt.  Standing hurt.  Walking hurt.  I convulsed with pain, unable to drive.  I had a friend take me to the VA hospital.

My regular doctor wasn’t in so I saw an substitute practitioner who immediately dismissed my “episode” as a fibromyalgia flare (I had been diagnosed with fibromyalgia four years earlier by the VA).  

After four years of dealing with fibromyalgia, I knew this was no flare.  

I left the practitioner’s office looking for someone else with answers.  I knew the ladies in neurology, so I painfully dragged myself up to the neurology department.  They could tell something was seriously wrong.  They jumped me to be the first patient for the head neurologist (who I’d been seeing quarterly for my migraines), who recognized immediately that I was having a toxic reaction to all the medications I was on.  He set me up in a private room and began a rapid detox using IV medication to wean me off these drugs in one day (normally, weaning takes weeks, if not months).

When he checked on me at the end of the day, my symptoms were gone.  He told me that he couldn’t help me, and that most traditional doctors wouldn’t be able to help me either.  I could never take those meds again, and he recorded it on my chart.  

I sat there stunned.  He was a doctor, and he’s telling me he can’t help me because I don’t respond to  traditional drugs. He told me I’d be stuck dealing with my migraines without the help of western medicine.  

I didn’t know what I was going to do or how I was going to function in society.  I was scared.  

Then, he gave three pieces of advice.  The first was that I needed to go gluten free.  Why?  He told me there was new evidence in journal articles that gluten can increase the severity of migraines.  

His second advice was that I should take large doses of high quality fish oil because the DHA supports the brain’s functions.  

And the third piece of advice was to see a chiropractor in the local area who had success in treating migraines in people who didn’t respond to traditional medication.

At this point, I didn’t have any other options. This neurologist’s advice set the trajectory for my current journey, and I jumped in with both feet. Going gluten free and using a combination of chiropractic care and acupuncture gave me a 70% success rate with managing my migraines.

While these alternative treatments provided some relief, I continued to search for a way to eliminate my migraines 100%.  And my pain medication only mitigated the pesky 30% of migraines left 10% of the time.   I developed coping mechanisms to help me function at work when I had minor migraines, but I was several debilitated 3-4 times a month, directly impacting my ability to do my job.

So I continued to search for other treatments.  I began reading medical journals, looking for new treatments. I searched online forums seeking answers from others with issues similar to my own. I eventually stumbled upon paleo through Mark’s Daily Apple, and thus began my journey into the paleo world and biohacking.

There are so many great bloggers in the paleo world: Mark Sission, Dave Asprey, Ameer Rosic, Jimmy Moore, Ben Greenfield, Able James.  But Dr. Jack Kruse had the largest impact upon me.  Why?  He showed me that if you ask the right questions of doctors, you engage them. And when you engage your doctor, you build a partnership that helps you on your journey to optimal health.  When I realize that, it was like a light bulb turned on in my head.  My paradigm of the doctor-patient relationship shifted.

I stopped looking to doctors to fix me.  I realized it was my job to fix myself and it was the doctor’s job to help guide my journey as my expert consultant.  I began searching and interviewing doctors.  I looked for docs who used bioidentical hormones to manage migraines.  I looked for primary care physicians to help me navigate my health in general.  I looked for doctors who knew how to help me leverage my health insurance to get the most bang for my buck.  I looked for doctors who were interested in running labwork several times a year so we could track and measure  where I was at.  I started asking different questions of my doctors.  

And then what happened?  

I saw improvement in my health. I’m 98% migraine free with the help of bioidentical hormone replacement therapy and diet. When I do get a migraine, it’s because I went out to a nice restaurant to eat and ended up with a cross-reaction of gluten on my food.  But even with that, 98% of the time I’m migraine free!   

I’m still trying to figure out how to get to 100% and I will get there.   

I still have medical issues I’m working on reversing, but each small step forward is a victory.  I’ve been working on solving my health problems for the past 14 years,  and 2004 marked my turning point.  2011 was when my paradigm shifted.  When you’ve battled migraines for your whole life like I have, small successes have huge impacts.  I keep building upon those small successes and I’m excited to support you in achieving your own successes with your health.

Gretchen