Last Resort

Last summer when Aimovig, the first of the new CGRP medications, hit the market, I was at the head of the line to receive this long-awaited wonder drug.  None too soon as I had either failed to respond to more than 35 medications used to treat migraines or developed a host of intolerable side effects.  My migraines were near daily occurrences, my thyroid TSH levels were abnormal and I was having painful digestive problems.  I was as miserable and desperate as I had ever been in over 25 years with chronic migraine disease.  Aimovig successfully prevented my migraines for a month.  Then it too failed, even at 140 mg double dose, and I was left with months of side effects to endure before the drug washed out of my system.

Sometime during that wounded winter that followed, a friend recommended Michael Pollan’s newest book, “How to Change Your Mind, What the New Science of Psychedelics Teaches Us About Consciousness, Dying, Addiction, Depression, and Transcendence.”  It was a fascinating read, gave me hope and lead me to begin exploring a whole new direction in the search to alleviate my chronic pain.

There’s a certain irony here.  I am a baby boomer, born at the end of WWII, among the first of my cohort.  I grew up in California during the 6O’s, went to college at UC Berkeley, the epicenter of the “Summer of Love,” sex, drugs and rock and roll, hippies, Vietnam war protests and more.  Intent on escaping the confines of a difficult childhood, I plowed my way through four years in this maelstrom without ingesting any illegal substances, a minor miracle given the place and times.

Now, the more I read, the more I am convinced that these new medicines, appropriately used in a clinical setting, are promising powerful treatments for depression, anxiety, PTSD, substance abuse, terminal illness and chronic pain.    The resurgence of research  in therapeutic use of these drugs is fairly new but coming on strong.  Migraine is not the primary focus of most ongoing research, which is currently focusing on PTSD, depression and terminal illness.  There is, however, a current research study in process at Yale University and another completed at Johns Hopkins University.  Both focus on psilocybin and migraine.    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3345296/                       https://clinicaltrials.gov/ct2/show/NCT03341689

Looking ahead MAPS, the Multidisciplinary Association for Psychedelic Studies – www.maps.org – is developing research into the use of psilocybin and LSD in the treatment of cluster headaches.  Current research is underway at Yale University.   https://clinicaltrials.gov/ct2/show/NCT02981173

Outside of research settings, psychedelic medicines are illegal, categorized by the FDA as schedule 1 substances since 1970.  This means that the Federal Government thinks there is no medicinal value and a high probability of abuse (just like marijuana).  However, Oregon’s attorney general recently approved language for a ballot measure which would make psilocybin legal if passed, in 2020.  In June, 2019, Oakland, California, became the second U.S. city (after Denver) to decriminalize psilocybin and other psychedelic plant medicines.

After reading Pollan’s book, I buckled down to do my own research aimed at deciding if these medicines made sense for me.  Running out of time, hope, options and money to pay the monthly rental fees for two very expensive neuromodulation devices, I am committed to finding answers for myself.  My early computer searches revealed some limited but promising, credible leads.  (below)  I was excited, but these early studies of course raised more questions than they answered.  I drafted a boilerplate letter requesting information pertinent to my own situation and made a list of anyone I could think of who might have something to offer me.  These included big name researchers in the field to friends of my kids who I thought might know something.  And I began to get some answers which then led me to new questions.

“Psychoactive substances as a last resort – a qualitative study of self-treatment of migraine and cluster headaches” Karlstad University, Sweden https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5584001/                    “Psilocybin for the Treatment of Migraine Headache”  Yale University  https://clinicaltrials.gov/ct2/show/NCT03341689

 

Leave a Reply

Your email address will not be published. Required fields are marked *