Sunday, November 25, 2018

GammaCore and More

My own personal piece of medical trash

The good the bad and the ugly

My one-month free trial of the GammaCore medical device has highlighted both the best and the worst that our Western medical system has offered up to those of us who live with migraine disease.  It is one of three non-invasive neuromodulation devices currently on the market, approved by the FDA, for treatment of migraine and/or cluster headache.  GammaCore targets the vagus nerve.  The other devices are the SpringTMS, which targets the cortex of the brain, altering neurotransmitter release and disrupting cortical spreading depression, and the Cephaly, which targets the supraorbital nerve, a branch of the trigeminal (cranial) nerve.

The GOOD news is GammaCore works for me.  It's not a slam dunk, but sometimes it is an effective abortive when neither my oral medication, Naratriptan, nor the SpringTMS knocks out the migraine.  It is particularly useful when I have stomach or abdominal pain, a frequent symptom.

The BAD news is that my month is up, and I can't afford a "subscription" at a rate of $600.00 per month or about $7,000.00 per year, and there is no way my Regence health insurance will pay for it.  And, by the way, you can't purchase this gizmo.

The really UGLY part, aside from the fact that most people who need it can't afford it, is that for about two years, until very recently, GammaCore was designed as a single-use, throw-away piece of garbage once it expired.  At the end of one month, you were told to trash it "responsibly" like a busted cell phone.  Electrocore, the parent company, then sent you another identical device to soon trash and add to the global waste stream.  There was really nothing wrong with these expired devices.  They were designed with a timer inside to shut down after 30 days.  The batteries were still functional as were the rest of the components.

Art Outrage

On the premise that people at large should know about this kind of stuff and as a way to express my own anger and outrage, I plan to make a piece of art.  So............ PLEASE SEND ME YOUR EXPIRED GammaCore devices.  I promise to use them to make art and work to display the finished piece for public viewing.  Look for contact information at my new website below or add a comment to this blog post.

Finally - An end and a beginning

This will be the last ArtofMigraine post.  I am migrating all to a new blog and website at
I hope to see you there.

Saturday, September 1, 2018


Missing Out 

There is a plan afoot to take an all-day art-viewing jaunt to Seattle with four friends.  I want to go, but this morning, waking yet again with a migraine, I turn down the invite.  I am unable to believe, imagine that I can actually pull off a day-long event without succumbing to pain and/or devastating fatigue.  Sitting at my computer I come across a piece I wrote last summer, never published, that speaks to nearly the same circumstances including the same four friends.  It helps me re-evaluate my decision in favor of a more hopeful outlook.

Saturna Island - 2017

Cortical Spreading Depression
I awake slowly, crawling reluctantly towards consciousness, resisting the pain that accompanies it. Dread and a feeling of failure, resistance and fear piggyback the dense heavy pain at the top and back of my skull, sliding down my neck, wrapping around my torso as nausea crawls into my gut. Migraine is a full-body experience.

I am spending four days with four close friends on Saturna Island in the Canadian Gulf Islands.  Taking this trip is a leap of faith for me.  The Gulf Islands are not that far from my home, but traveling, even short trips, with anyone except my husband has become problematic because migraines attack frequently with severe pain and a host of symptoms that stop me in my tracks.  Noise, fatigue, a surfeit of human energy and a shortage of down time, alone, are among the triggers.  Not only that, I am on crutches with a pulled muscle in my groin, unable to bear weight on my left leg.  It is awkward and tiring and lowers my pain threshold.  

We stay up late on Saturday night, deep in discussion about family, art, death, illness, challenges we all face as we enter our 60’s and 70’s.  I know it’s past my best bedtime, but it’s a conversation I choose not to walk away from.  It is 12:30 by the time I take my meds, brush my teeth and crawl into bed, knowing I may pay for this rich communion among loving friends.

At 5:00 am, I crawl out of bed and take a Naratriptan and my morning meds and fall back to sleep for an hour and a half, wake up again on the precipice of vomiting and diarrhea.  I use my SpringTMS electromagnetic device, take a 10 mg. Vistaril tablet and burrow back under the covers to doze fitfully for another hour. Eyes open, and I deliver another series of pulses with the SpringTMS and hope for a miracle.  Finally, at 8:00 I get up, wrung out but grateful that I may be able to take some limited part in the day before me.  Two cups of black tea and a piece of toast settle my stomach, and the mental sludge begins to clear fractionally.

My friends are up, rattling around, chatting and making breakfast, french toast and bacon.  I am barely able to tolerate the clatter of cooking and conversation, much less contribute to the making or even the eating. My circuits are fried.  The volume and energy of breakfast conversation plows into me with the force of a bulldozer.  I retrieve my earplugs from the bedroom and retreat to the couch, across the room, to give myself a buffer, space to wake up and recover.  I am limp, overwhelmed and sad.  By 10:30, I am in no pain, but my nervous system is blasted, capable only of beginning to resurrect my body in relative isolation. I would be better off in a cave this morning.

Paddy throws open the doors and lets the lovely cool morning air off Fulford Harbor drift into the room. Instantly chilled, I cocoon myself in a couch blanket.  Prefering the difficulties of participating to the isolation of comfortable retreat, I settle in with everyone else to begin our ritual sharing of adventures and art work we have each engaged in over the past two months.  Our time together is precious and infrequent these days, so I hang in there, listen, look at samples and images and make an occasional comment.  When my turn comes, I have trouble with the simple functions of my iPad I usually navigate with ease.  Word finding and putting my thoughts together are a struggle.  I stumble through a narrative about my recent travels and some photos that are important to me, that represent both the places I’ve been and the path I’ve walked getting there and returning home.  

We break for lunch. By 3:00 pm I have recovered from the worst of this neurological storm that manifested itself approximately twelve hours earlier.  I am fatigued and drained, tapped out and a little depressed but on my way back to the surface, to light and life after near drowning.  We sit in lawn chairs reading and watching draggon flies flit through the late afternoon light.  

After dinner the plan is to take a drive up island and a short hike down to the water on the Straits of Georgia.  I pile into the car, dragging my crutches awkwardly behind me.  By the time we arrive at our parking place, I am feeling mildly nauseated and ill from too much too soon after my morning migraine. Telling my friends to go on without me, I crawl into the back seat and lie down.  While grateful for the sudden quiet solitude, I am also sad that I’m missing out on an evening of stupendous beauty as the sun sets over the water of the Salish Sea.  Seals, oyster catchers and other shore birds swim and wander the rocks at the water’s edge.


As I lie quietly in the backseat, door open, I listen to the leafy branches of the madrone trees sway and rustle in the wind.  Silence.  A lull as I doze.  Then something stirs.  I hear the soft crunch and crackle of a creature - or a spirit.  Moving through the duff of leaves and shore pine needles, feeding on grass or shrubs, uprooting small plants, an animal grazes very close by.  Breathing. Chewing.  I don’t get up or look. I just listen enjoying the priviledge of close proximity to something wild, quietly sharing a little piece of forest. 


My stomach begins to settle along with my frayed nervous system.  My friends return, and we drive back to the house along the glassy-smooth water lit orange by the ball of sun dropping into liquid. 

Saturday, August 25, 2018

Dreaming of Deliverance

prayer flags

Something is not right

For months and months now I have been feeling ugly.  In spite of chronic migraine, I have an active, fulfilling life with a supportive husband, kids I'm proud of, friends I love and activities I'm devoted to.  But as the months passed, starting last summer or fall, I began to have progressively more trouble showing up, doing my usual household chores, taking care of my grandchildren, writing, making art .  Last December we had to cancel our annual trip to Mexico, a huge disappointment.  I cooked and then couldn't eat Christmas dinner.  When we took a spring road trip to California to visit my son and daughter-in-law, unable to tolerate the return drive, I had to fly home.

Symptoms are hard to sort, but this was/is on beyond chronic migraine, which is saying something since I usually attribute nearly all my aches and pains to migraine.  I was in constant pain, my gut totally messed up, my energy and strength way down, my anxiety way up, I lost 25 lbs. and the migraines assaulted me daily without respite instead of 3 or 4 times weekly.  Repeated trips to my primary care doctor and lots of blood work revealed nothing except her lack of concern.  I made an appointment, with a two month wait, for an endoscopy/colonoscopy, which was thankfully negative.

In desperation I switched doctors, finally finding a guy who took an 18% weight loss and my other complaints seriously.  I endured all kinds of imaging, again showing nothing amiss.  Over several weeks, my doctor re-adjusted my thyroid medication.  I went to a nutritionist, who put me on a low fodmap diet.  My weight loss stabilized, and the gut pain faded away as long as I didn't cheat by eating forbidden foods.  The goal is to eventually wean myself slowly and methodically from food restrictions while pinpointing those that continue to cause symptoms.

Things are looking up, but it has been a huge challenge.  In June I took my first dose of Aimovig, which cut migraine frequency to nearly zero for three or four weeks.  Then, as the dosage of my thyroid medication decreased, the migraines increased to daily events once again.



I rarely remember my dreams, but a few weeks ago during the worst of my trials, I had a stunning breakthrough dream.

I am pushed out of an airliner, wearing a cowl or perhaps a shroud.  In alarm, free falling, looking for a way out, knowing there is none, I begin to enjoy the ride, marveling in weightless ease at magnificent stars in the black night sky.  I splash down in a wine-dark sea.  Floundering in my heavy garment, I slip out of it and swim gleefully free.  I am plucked from Mexican waters by a dark-haired, local woman in traditional dress.

It is a lovely dream, arriving when I need it most.  I spend satisfying days drawing and coloring my vision, finally tacking it up on the wall where I rely on it to help me keep the faith.  On a recent weekday morning, I make hotel and airline reservations for our annual December trip to Zihuatanejo, Mexico.