Sunday, December 4, 2016

Another Country

Breathing room

Over and over again, I find that extricating myself from a nearsighted focus on my own life, preoccupations with illness, politics or family problems, gives me space to let go and breathe in other possibilities.  With a little distance from daily pain, I can re-orient, think about the world around me and make room to appreciate people, ideas, nature and more.  

This sort of opening up is a huge relief.  Ultimately I can then come back home, so to speak, allow myself to imagine other outcomes and better understand what my own next step might be.

Here are some of the things that give me breathing room.

Mary and Ray

Two times a week I tutor English to an immigrant couple from another land.  No matter my emotional state when I arrive at Faith Lutheran Church where we meet, I leave feeling as if I'm on a new planet. Mary cooks for a living, putting in long hours behind a hot grill.  She has no vacation or sick leave and no health insurance.  Ray works long hours, six days a week, 10 hours a day, for a landscaping company.  Sometimes he puts in an 18 to 20 hour shift if his crew has to go east of the mountains to lay down gravel or beauty bark or drive 3 miles south to spread salt on the roads in winter.  They'd like to have kids, but that just hasn't happened.  They go dancing almost every Sat. night and fishing during season.  They like to go on walks, and they are enchanted by a new kitten in their lives.  Confirmation, first communion and baptism of friends' children are important events.  They have a rich life.  Since conversation practice is an important part of my teaching and their learning, we chat a lot.  Every week I learn new things about their triumphs and troubles.  I leave our sessions feeling lighter.  My head has somehow joined my heart to dwell in a place where gravity is not so heavy.


Phil

We have a Native American friend, a Navajo man, who was born and raised in Canyon de Chelly, Arizona, under the toughest conditions.  He is a good-hearted soul, who continues to make his gentle way in life in spite of perpetually difficult circumstances.  Phil spent eight years in Federal prison, which he says was time well spent.  He tells me he learned many skills there.  Released 15 years ago, living a productive life ever since, he still can't find a place to rent without someone else - with no felony conviction - to sign the lease.  Yet he is infallibly cheerful.  He does hard physical labor in spite of numerous old injuries.  He says it helps him keep the demons at bay.  He has taught me to let go of my judgments, expectations and opinions about who he is and how he should be doing things.  When he comes around for a cup of coffee, I enjoy his company and the opportunity to accept life just as it is.  One day, after a Phil visitation, my husband shook his head, smiled and said, "Another country."


Travel

When I hit the road (or airport) en route to a different place, something in me relaxes.  I am able to turn my attention away from myself and my pain and travel to a place of forgotten dreams.  The cosmos inexplicably shifts, and I open my hands and my heart and let go.  My shoulders relax and drop down from my ears.  My eyes open a little wider as my habitual routine falls away.  I drink in the sights and sounds with a new curiosity.


Languages

I love listening to the sounds of different languages, even when I don't understand the words.  I am transported by the songs and rhythms of Mercedes Sosa's music.  When I speak Spanish, I become a different person, more open to my own mistakes, more willing to try and sometimes fail without blaming myself.  I take on the heart and soul of a people who feel and see through a different lens.  Continuing to learn and to speak Spanish is an intellectual challenge I love but it also opens doors for me to trust and communicate from my heart.

Children

There's nothing like a child to open your eyes to a parallel universe and give you the opportunity to make a small difference.  This afternoon my six-year-old grandson, Liam, and I went on a little excursion.  Here's a short action-adventure story packed into less than 2 hours.

The coins were in a piggy bank left behind a few years ago by my now 35-year-old son.  For years after he left home to sail off into the sunset on a long list of ships, he returned for a month or three from some far distant port and dumped all of his left-over pocket change into his piggy bank.  Before leaving home today, Liam and I emptied the contents into a bowl and sorted out all the foreign coins from Polynesia, Canada, France, Indonesia, Australia and elsewhere.  We arrived at the credit union only to realize it was Veterans' Day, and of course it was closed.

What do you do when plans go south?  Make another plan.  So we strolled down the street toward the donut shop with a detour to the ceramics store, where you can choose, paint and glaze your own cup, cow or critter.  Liam thought the ceramics store was a boring idea, but after a discerning look at all the options and a break-it-it's-yours discussion, we decided to return and try this out another day.  Shortly afterwards, with a donut under our belts, we headed for home.

Our route took us past an impromptu homeless encampment.  I explained to Liam that these people had no houses to go home to at night.  The rest of the way home we discussed what it meant to be poor and why not everyone could sleep in their own bed, get a job, save money for a place to live and more.  In the end Liam said, "At night, in bed, sometimes I think about stealing money from rich people to give to poor people."  "Sometimes I think that too," I replied, "but stealing from anyone, no matter who, is not a good thing to do."  I later learned they were reading Robin Hood in kindergarten.  Liam was pondering a local application.







Tuesday, November 8, 2016

Not Guilty

Comparing myself

I sit in my brown swivel chair in the kitchen, with a headache, day 3 in a row after a couple of busy, people-intensive days earlier in the week.  I feel listless and blank as I finally give in to the overwhelming desire to take a serious break.

What I also feel is guilt and shame that I'm not being productive.  An invisible imp riding on my shoulder mutters in my ear, admonishing me for being a slacker.  My husband, Jack, is in his office working, filling a book order.  My brother-in-law is outside digging post holes for a new fence across our front yard.  My pal Sally is prepping for her evening class at the community college where I too used to teach.  By this time in the morning, my friend Alice is working at her computer, doing medical transcription.  Lynn is already downtown pouring over new bike-route plans in her city office.  Doug is either cleaning roofs and gutters or pecking away on the rough draft of his next geology book.

I can't compete, much as I want to.  Yet I can't seem to let it go and realize it's a mugs game, this perpetual hamster wheel of measuring myself against everyone else.  I've already chosen the winners and, coming up short, designated myself the looser.

Imp

Shame

Neither my family nor my friends pressure me to work or play, but I do.  I often feel I'm not doing my share, not making a big enough contribution.  The list goes on to include not only work but play.  I'm not traveling as much as Maria or doing as much art as Janey.  I'm not busy enough, and in our culture being busy is a sign of status and worth.  Pain rendering me unable to be busy, I am humiliated by my regrettable weakness.  

Like many who are ill or afflicted, I am plagued by the sense that my headaches are somehow my fault.  I am dogged by the notion that my constant pain, fatigue and anxiety are my own doing, my karma, that there is something, at the core, fundamentally wrong with me - and it's not just migraines.  The difficulty is that I have no idea what transgression I have committed to deserve this punishment.

Now, I'm aware that this is magical thinking gone badly awry.  When this theme begins to play its discordant tune, I call on four friends of mine for assistance:  Karen, Jill, Robin and Carol.  All fantastic women, they are sadly deceased, three from cancer, one from suicide.  They did nothing wrong, possessed no fatal moral or ethical flaws.  In fact, they took good care of their families and their community, and all were involved in important work.  It's not fair, nor was it deserved, but they all suffered and died fairly young.  When I begin to drag myself down, I remember my friends and send out a little plea for support.  They always answer.

Peace

I'm tired.  Exhausted really.  Some days, some weeks I am able to keep going in spite of daily pain, but then I hit a wall.  I can no longer deny my body the rest it is crying for, and I surrender.  

Jack leaves, and the house turns quiet.  The clock above the kitchen window ticks softly and there's the faint sound of Kathy's radio downstairs.  I hear the refrigerator kick in as I sit before a fire in the wood stove.  It's November.  We're well into the fall season, and the days and nights have turned chilly.  Suddenly I'm relieved.  It's just me, and for the moment, unobserved, I can do and be any way I want to.  A sense of calm and relief washes over me.

I began to have greater insight into my struggle with guilt and shame on a solo trip to Zihuatanejo, Mexico three or four years ago.  

The night I arrive, I awake from sleep at 3:00 am to rain thundering on roof tiles and cascading down onto my balcony.  Rainy season.  The next morning clouds pile up on the horizon out at sea, and it rains intermittently throughout the day.  It is hot and muggy, so I am inclined to spend more time than usual in my air conditioned room with a view.  With no one around to observe me, I fall into a soothing routine.  Tea and breakfast on the balcony of my room.  A second cup of tea as I watch the fishing fleet navigate out of the bay, gather around the rocks at the mouth and then steer their pangas out into the open ocean.  I watch, mesmerized, as the spring swell moves in endless waves across the bay, crashing on the beach below my hotel.  My feeling is relief, peace, gratitude and total acceptance of the slow rhythm of my day.
                                                                                                                                         
It is a revelation.  Removed from my home, friends, family and routine, I am able to leave guilt and shame behind.  Untethered from my usual ties and responsibilities, I need only consult myself.  Headaches and all, I become a free woman. 







Sunday, October 30, 2016

Migraine Linked to Abuse

Something we never talk about

Abuse is common and occurs worldwide.  It can be physical, emotional or sexual, and it also includes neglect.  There is a strong association between a history of childhood maltreatment on the one hand and migraine and other chronic pain disorders on the other.  This article by researcher Gretchen Tietjen is a good summary of the issue.  http://www.medicaldaily.com/emotional-abuse-childhood-migraines-391660

It is documented and accepted within the community of headache sufferers and specialists that migraine runs in the family.  There is a strong genetic association.  In addition there is now a theory that migraine may be epigenetic.  This means that environmental factors such as early stress and abuse may alter your DNA and that the effects are hereditary.

Scared
Presumably, If you have a genetic history of migraine in your family as well as possible epigenetic factors in your background, you are doubly threatened, but the research on how all these issues fit together is in its infancy.  The belief is that genetics may play a part, but the expression of that hereditary pattern gets turned on or intensified by the addition of environmental stressors.

Psychological therapies, including Cognitive Behavioral Therapy (CBT) and EMDR or Eye Movement Desensitization and Reprocessing are among the approaches that produce some success in defusing traumatic experiences.  Anti-seizure medications valproate and topiramate are FDA approved for treatment (prevention) of migraine.  These drugs are also known to reduce the effects of stress-induced, epigenetic influences and thus may be good choices for pharmacological treatment although they were not effective for me.

While there are researchers like Dr. Gretchen Tietjen documenting the relationship between migraine and abuse, I have found little research-based information on the efficacy of these different treatments, whether medication-based or psychological.

We tend not to address this issue in migraine blogs, and we don't discuss it much on other migraine-related, social media sites.  There is no mention of the link between childhood maltreatment and migraine on the websites of the National Headache Foundation, the National Migraine Association (MAGNUM) nor the American Headache and Migraine Association.  Your physician, even if he or she is a headache specialist, will probably not bring it up.  In my opinion, this is a big hole in our collective conversation about the disorder.
The only photo I can find of all of us together

My family and me

In an attempt to get the conversation going, I'll share a little of my own story. I come from a nuclear family of four: mother, father and older sister.  There was no history of alcoholism, sexual or physical abuse nor of physical neglect.  On the other hand, there was a great deal of scary anger floating around our household.  There was serious stress related in part to my father's illness.  He was diagnosed with multiple sclerosis the year I was born.  While there are a lot of holes in my memory, I remember that my parents fought or argued incessantly.  My dad was the strong, silent type who was more inclined to shut down or leave when things got tense, while my mother's louder anger spilled over and sucked the air out of the house.  My father was in and out of hospitals throughout my childhood even as he continued to work as a civil engineer in the oil fields of California.  My mother had phlebitis and deep-vein thrombosis with a history of multiple surgeries and a near-death event when a clot broke loose and passed through her heart and lungs.

My relationship with my mother was forever difficult.  She was controlling and critical and angry.  I think that became worse over the years as my father's disease progressed and she felt trapped by the circumstances.  While I don't really trust my memory to sort all this out, there is no doubt I was afraid of her.  Perceiving no other way to fight back, I shut down and retaliated with silence, which fueled her anger but gave me some sense of control.  This habitual restraint no doubt cost me as I grew older and had difficulty expressing my own anger, vulnerability and even joy.

As my sister grew into adolescence, she began to express her anger verbally and with lots of door slamming.  As she grew older, she was charming, extroverted and very articulate.  As I began to grow up, I became more introverted and careful to avoid doing or saying anything that might upset the family apple cart.  Sometimes I was the object of my sister's anger and passion.  Six years her junior, I felt powerless and scared.

I have no idea whether or how much my family history has contributed to my headaches.  And among the many questions that remain for me is, "So what?"  Many of us come from an endless variety of difficult childhood circumstances.  Once you recognize that perhaps your early upbringing was less than salubrious, you can begin to learn and choose better ways of living with yourself and others.  Nonetheless, your early history remains and sometimes reinforces genetic predispositions.  While we are constantly learning new ways to help those who have experienced recent, trauma-induced pain and disability, there has been less success with the physical fallout of decades-old, poorly-remembered events and patterns of family disruption.

Over the years I have learned to be more expressive of my feelings and more open to myself and others.  I can identify and clarify thoughts and emotions as they arise.  While these are valuable skills, my headaches persist.  I have a mental health therapist I see regularly, and I continue to explore all avenues that my one day help reduce or eliminate my headaches.

Friday, October 21, 2016

Chronic Migraine is Boring

Retreat

It's 6:00 am when my head prods me awake with a burning pain at the top of my skull.  I roll out of bed and make it to the bathroom, the only stop on my way to a prolonged sequestration in my bolt hole.  Sometimes I can tolerate a cup of black tea but not now.  This morning all I can do is retreat to my futon, lie on my side with an ice pack on the opposite temple, breathe into the pain and hope my abortive meds don't come retching back up before they've had a chance to take effect. This being one of my bad days, I vaporize cannabis, which settles my stomach, helps me relax and maintain some distance from the pain. Thanks to the cannabis, I drift off to sleep for a couple of hours. The day wears slowly on until, almost imperceptibly, the pain begins to ebb around 3 or 4 pm.

Boredom

My plan was not, never is, to spend the day buried under pain.  While the pain is acute, I'm either breathing into it, trying to relax and put a little distance between myself and the hurt or, thankfully, asleep.  I may be downhearted that I'm back at it, but I'm not bored.  As the pain eases, boredom sets in.  I can't get up yet, can't eat, can't read, can't tolerate music nor any auditory input.  So I wait as this tedious day slowly wears on.

The Merriam Webster dictionary defines boredom as the state of being weary and restless through lack of interest.  That's not quite it.  I have no lack of interest in a multitude of things, but pain, along with the host of neurological symptoms associated with migraine, very often leaves me adrift, unable to muster focus or energy.  I am caught in a sticky web of tedium, trapped like a fly in a spider web.

There is another difficult aspect to this struggle, an ominous sense that time is running out, that my tiresome days languishing on the futon are stolen from the finite number I have left.  And that I am, perversely, wasting them.

spider web

Antidote

How do we cope, or better yet, what can we learn from this common reaction to illness.

Patience is a homely, old-fashioned virtue, out of style in our frenetic, techno world.  But it is a soulful attitude.  Related to fortitude, grit and tolerance, it can smooth over the rough passages.  The question remains, how do you or I move from impatience to patience in the face of such difficult circumstances?

Witnessing and naming are good tools to acquire.  I try first to step outside of my discomfort for a moment to recognize that I'm struggling, not just physically but emotionally.  Then I put a name to my pain:  impatience, fear, anger, self blame.

Compassion is the next step.  I allow as how anyone would feel this way under the circumstances, and it's ok, a normal reaction.  Sometimes I pair this attitude of permission with a comforting physical gesture like running my hands across my temples, over my forehead and through my hair in a little scalp massage.  I also have a private term of endearment.  Speaking silently to myself as if it were my mother, husband or best friend, I say, "Look, Sweat pea, you're good.  This is all going to pass.  Nothing stays the same."

Breathing deeply into my belly and letting the tension in my shoulders go helps extract me from the grind of thoughts ferreting around my brain and calms me, at least for the moment.

Curiosity is the act of wondering.  What about this or that?  What if............there were something I could do to help myself feel better?  It requires an openness to possibilities large and small.  In a small experiment yesterday, I hung a mirror at the foot of my futon.  Now I can lie there and see the sky and trees reflected from the window above my head.  I can watch the leaves move in the breeze and notice the birds and insects flit across my visual field, see the sun glint off a long spider web.  I feel a little less hemmed in.

Focus on one thing.  In her book, "How to Be Sick," Toni Bernhard reminds those of us with chronic illness to stick to one thing at a time, no multitasking.  Eventually, a day or two after a migraine, I surface and begin to reapply myself to life left behind.  Once I'm feeling better, the temptation is to try making up for lost time, cram into the day all the things that didn't get done when I was down and out.  This kind of frantic, over-doing-it tends to make us sicker.  So the trick is...........take it easy, choose your focus, one step at a time.  If this sounds a lot like AA (Alcoholics Anonymous), there's a reason.  The more pressure you put on yourself, the more likely you are to slide down the slippery slope into pain and then, perhaps self recrimination.  So let that steam off the pressure cooker, relax when you can and enjoy whatever one thing you have chosen to do at this moment on this day.

 

Saturday, October 8, 2016

Alternative Treatments

Have you tried.........?

Somewhere on the long, winding road we travel seeking a remedy for our migraine pain, most of us resort to so-called alternative treatments.  We tend to pigeonhole curatives such as acupuncture, rolfing, homeopathy and cannabis as "out there," unproven, therefore worth less than the pills and surgeries prescribed by our doctors.  Yet we all have much to learn from the health and spiritual practices that come to us from the East and elsewhere around the globe:  acupuncture, Tai chi and Qigong from China, Buddhist spiritual practices from Japan and Tibet, ayurveda and yoga from India, Native American healing from throughout the Americas, and more.

Every individual's migraines are different, and the cause of migraine continues to be poorly understood.  I believe it is not only sensible to explore all avenues to improve your health but imperative to stay open to trying new treatments, new doctors, spiritual practices and life style choices.  That said, whether you're choosing among physicians or therapeutic traditions, my advice is, "Go slow, do your homework, don't overlap new trials of treatment, give it time and, finally, keep careful track of your body's response."

I have tried all of the following over the long years of living with migraine:

•  Acupuncture
•  Psychotherapy
•  Chiropractic
•  Naturopathy
•  Homeopathy
•  Aroma therapy
•  Cranial sacral therapy
•  Massage
•  Rolfing
•  Herbs and supplements
•  Cannabis
•  Diet, nutritionist
•  Oxygen
•  Neurofeedback
•  Music
•  Meditation
•  Yoga
•  Tai chi, Qigong
•  Shamanism
•  Clairvoyant

None of these approaches cured my headaches, but some have given me worthwhile relief from other ailments and helped my body and mind feel a little better, more centered and at peace.

Acupuncture has given me relief from carpal tunnel syndrome and digestive problems.  However acupuncture needles in my head or face will trigger a migraine, so I no longer allow placement of needles in those areas.
My naturopath has helped me with everything from yeast and urinary infections to gut problems and written a prescription for cannabis to treat pain.  He is my first stop for ordinary health problems and anything related to diet.  His treatments are often effective and less likely to cause side effects than many medications prescribed by my family practitioner.
Psychotherapy has helped me cope emotionally with chronic pain, giving me an outlet and resources to express my fear, grief, despair, anger and hope.  It reminds me to stay open to possibilities and remember that anything can happen.
Massage        When I'm at a low point of constant headaches, massage has lead me to appreciate my body as a source of comfort, not just pain.  However, I have learned not to let my masseuse dig too deeply into that sensitive area underneath my occiput, which can trigger a migraine.
Hemi-sync is a system of music enhanced with binaural beats to promote brainwave synchronization.  It aids relaxation and rest when I'm tired, over stimulated and frazzled.
Meditation calms me, lowers anxiety and takes the pain down a notch.
Yoga, likewise, helps me keep a sense of strength, flexibility and balance in my life, both physically and spiritually.  I neither meditate nor do yoga as regularly as I should, but both are there for me when I remember and determine to devote myself once again to regular practice.
Cannabis has been a huge deal for me.  When my headaches were at their worst and most frequent, it gave me great comfort to know there was something I could turn to for pain relief that didn't cause intolerable side effects.  I live in a state that has legalized marijuana for both medical and now recreational purposes.  I vaporize it in loose flower or bud form when I have a severe migraine.  It reduces or eliminates the pain and anxiety and allows me to sleep.  I have never used it for mild pain because I don't like feeling sedated or less than alert during my waking hours, no matter what the drug.  I also vaporize it in the form of a vape pen as a sleep aid.

Neurofeedback is a form of biofeedback that uses EEG or electroencephalography to promote subconscious self-regulation of brain function.  Sensors are placed on the scalp and ears to measure output (brain activity) and provide input to the client in the form of video displays or sound (music).  The video or sound supplies positive feedback for desirable brain activity or negative feedback for undesirable patterns.  Evidence-based studies are beginning to support use of neurofeedback in treatment of ADHD.  There are indications that it helps in treatment of alcoholism and opioid dependence, seizures, autism, depression, insomnia, stroke, PTSD, migraine and more.  I am now into my fourth week of neurofeedback, so the jury is still out.  An average of 10 to 20 treatment sessions are usually required to alter symptoms.  There is, of course, no guarantee neurofeedback will decrease the frequency or severity of my migraines.  But there is no sure outcome no matter what the therapy.  I have dutifully tried every preventative medication prescribed by my excellent physician, who is a headache specialist.  Only two resulted in measurable improvement in my headaches, and all came with increasingly difficult or intolerable side effects.  The efficacy of those 2 medications decreased over time and eventually diminished to zero.

Biofeedback is a mainstream approach to headache prevention.  While it did not help my headaches, it was and is a powerful tool for me in other respects.  I learned to use progressive muscular relaxation techniques, which later helped in meditation.  It also gave me significant control over a difficult gut problem, the urgency to have a bowel movement, sometimes when no bathroom was available.

Integrative medicine

We are at the beginning of an era when alternative health care approaches and western medicine are slowly coming together in the new field of integrative medicine.  https://nccih.nih.gov/health/integrative-health
As this process develops, we will begin to understand new and different ways to deal with old problems, and patients will no longer be stuck in the middle, forced to choose.





Wednesday, September 28, 2016

Hypersensitivity

We are 10 min. north of Santa Cruz, California, on a magnificent stretch of Hwy 1, heading toward San Francisco on our way home to Washington State.  Looking out to sea, I spot a blue black slice slipping under the off-shore wind waves followed by the unmistakable blow of a second whale.  I feel a moment of supreme satisfaction.  Even though I didn't get my whale watching tour, I got my own wild sighting.

My husband and I had an opportunity to go whale watching.  It would have been a fantastic thrill to be out on the ocean with a knowledgable pro boat guy in a very large inflatable, but I knew that my head and neck would never tolerate the pounding of a small boat in the open ocean accompanied by a voluble monologue from her story-telling captain.

This last week visiting my son and daughter-in-law has been lovely.  They have accommodated us in every way possible way, putting us up, cooking, entertaining us and hanging out yakking around the back-yard fire pit as we watch a possum and then a skunk amble down the fence line a few feet away.  Still, 9 days away from home, and my headaches have begun to amp up.  I awake almost every morning in pain, which I keep at bay with abortive and pain medication and my electro-magnetic device, the SpringTMS.

On Wed., the afternoon before we plan to head home, a friend shows up a couple of hours before dinner.  I am dozing, contented, in the back-yard hammock, the sun warm and relaxing.  A rope tethered to the fence allows me to give myself a swing now and then.  I stay put as the shadows creep over me and then wander indoors to meet the new guy.  Jake hangs around for dinner and conversation until 8 or 9 pm.  My head is buzzing, circuits fried by the end of the evening and, consequently, I am in no way ready to leave in the morning.  I need our last evening to be just us and Andrew and Jenny.  We end up stretching our stay out one more day.
 
My nervous system is super sensitive.  Among the many sources of upset for me are people, noise and high-energy conversation, even with family and friends I love.  I can tolerate short shots of intense interaction, but if it goes on for too long without breaks and space in-between, my comfort level drops, and I begin to feel overwhelmed.  I experience a sort of mind-body split, caught between competing desires.  Even as I desperately want to participate, my body longs for a break, a quiet spell lying down, away from it all.

Caught


Trigger

Like nearly all people who suffer from severe migraine, I am hypersensitive to a wide variety of stimuli including the following:
  • Changes in routine, medication and weather
  • Traveling
  • Noise
  • Flashing or flickering light, eye exams
  • Dental procedures 
  • Too many people for too long
  • Emotional stress
  • Anxiety
  • Not enough space or time between activities
  • Fatigue
  • Smells including cigarettes, gasoline fumes, wood smoke, nail parlors and more
  • Alcohol
  • Late or missed meals
  • Illness or infection 
  • Heat
  • Intense movies especially on a large screen, Imax or 3D
  • Too much computer or TV time
  • Acupuncture needles in my head
  • Neck massage in the occipital area
Any of the above may tip me over the edge and trigger a migraine or, eventually, a spike in frequency.


Prodrome

Conversely, hypersensitivity in other forms may herald the onset of a headache, not the cause but a warning or prodrome. If I tune in to these feelings as they arise, I can sometimes prevent the actual headache using the SpringTMS.  These include:
  • Anxiety
  • Depression
  • Irritability
  • Euphoria
  • Fatigue
  • Mental cloudiness
  • Lack of focus or motivation
  • Short-term memory problems
  • Super-sensitivity to a variety of stimuli
  • Muscle spasms in my neck, shoulders, back
  • Earache


Aura and headache

Once or twice a month, I experience a classic visual aura, a half-moon, zig-zag pattern of scintillating light.  While I can't avoid the aura, I can sometimes abort the headache with the SpringTMS.

During the actual headache, pain is often accompanied by nausea and sensitivity to many of the same basket full of irritants that trigger my headaches.


Postdrome

After my headaches wind down, I am left feeling limp and spaced out.  I am mentally hungover, stale, lethargic and fretful at my inability to apply myself.  My concentration is poor, my mood often low, my nerve endings still buzzing with irritation to noise, lights and action.


Real Time

What this all means is not suffering one day sick in bed but three days enduring a host of disturbing sensitivities and symptoms.  Having an episodic or occasional migraine is painful but not too disruptive to your quality of life.  Having chronic migraine, that is 15 or more days per month, is profoundly difficult and destructive.  One headache with all associated symptoms bleeds into the next leaving scant time to recover my equilibrium and energy.  Coping is a constant seesaw between succumbing to the pain and pushing myself to keep moving.

This headache begins Thurs. with fatigue and lethargy.  My two-year old grandson, Lucas, arrives at 9:00 am.  We play with magnets and play dough, pick late-summer grapes from the arbor and take a short walk before lunch and then, thankfully, a midday nap.  Afternoon requires a 30 minute drive to a physical therapy appointment, but the trip home is tough.  Driving with less than full concentration is a poor idea, but more than I would like, I find myself behind the wheel when I would be better off prone.  What do you do when you are symptomatic roughly half your waking hours and still want and need to function?  Practically, the answer is....... the best you can, which is not optimal.  

Friday, I awake with a headache, not a crashing, 5-star misery but medium-grade head pain and a churning gut.  I pop a naratriptan when I get up, swill two cups of black tea and, foolishly it turns out, eat my usual bowl of steel-cut oats for breakfast in hopes this will all go away and I can carry on.  By 10:00 am my gut is churning.  In a valiant attempt to keep going, I hop on my bike and take a short ride to the neighborhood coffee shop for a chat with my friend, Stephanie.  I am happy to see her, but my attention is split between talk of our sons, writing and politics on the one hand and my roiling stomach on the other.  By the time I return home, I'm feeling better so I make myself a taco for lunch, another mistake.  My belly in revolt again, I head out for a scheduled hair cut.  By the time I get home, I'm done for.  More than ready to give up and give in to my fatigue and nausea, I head for a nap on the futon and, later, a supper of apple juice, banana and toast.

Today I'm in day-three, recovery mode.  This time I'm not doing too badly, concentrating well enough to write, eating a bland diet, enjoying a fine fall day as I look out the window at leaves beginning to turn color on the vine maples, apples ripening on my semi-dwarf tree, clouds beginning to clear to the southwest.  But I'm still in slow mo.  The challenge will be not to overdo it and set my sensitive nervous system up for yet another migraine tomorrow.



Monday, August 8, 2016

Staccato

Disconnected

I live my life in staccato, each day discrete and disconnected from the last, separated by episodes of head pain and nausea. Thinking, the other day, about this particular piece of my struggle with migraine, a memory came to mind - of a zoetrope, a 19th century optical toy my husband built years ago for our kids. It consists of a cylinder with vertical slits and a series or strip of individual pictures drawn on the inside. Looking on from the outside, when you spin the cylinder at just the right speed, the serial images run together appearing as figures in continuous motion. But the real truth? Slow down or interrupt the motion of the cylinder and the action reverts to disconnected, individual images.

Interrupted

Now, as I sit here writing, after a few morning hours of productive, concentrated work, I suddenly become aware of my right neck and shoulder beginning to knot into a tight muscle spasm.  I stop what I'm doing to check in with myself, a body scan to see how my individual parts are fitting together.  I feel a kind of density on the right side of my face and a tiny throb in my temple.

I stop writing mid flow and get up to treat myself with the SpringTMS in hopes of preventing an impending migraine.  I check my calendar to see how many pain pills I've taken this week, look at the clock to see when I can take one that will get me through the afternoon and an early evening concert, tickets already bought and paid for with maybe a 50/50 chance that I'll actually be able to go.

It's complicated, living with pain that comes and goes in unpredictable fits and starts.  I am an English tutor, a grandparent who babysits.  I write, draw and paint.  I like to walk and swim, do yoga and travel, go to the movies and meet with friends.  I still do these things but with an impaired sense of rhythm.  I cope with my splintered life by having a strict order of priorities.

Babysitting and tutoring usually come first because they involve a commitment to other people as well as myself.  In order to pull this off I reserve 2 of my headache abortives and 2 pain pills per week, only 2 because taking more pills risks rebound, which would ultimately lead to even more frequent headaches.  The rest of my routine is subject to frequent cancellations.

Episodic pain has eroded my ability to build on skills and develop interests, leaving me hanging on in frustration instead of making calm choices with the freedom to follow through.  I have a perpetual sense of being unfinished in all things.  Often I have to beg from Peter to pay Paul.  If I push my energy envelope today, tomorrow may see me in bed or on the couch.  I may start a drawing, a weaving or a written piece and have to abandon it for days.  I return to projects disoriented, searching for my original inspiration.  These frequent interruptions undermine the sense of continuity in my days and weeks.

Flow

What if?

But what if I could view my pain breaks differently?  In fact, the most recent suspension of my writing allowed for a different take on things when I returned to work.  Instead of seeing a series of frustrating, interrupted moments, I began to envision water flowing over and around the rocks and snags, but flowing nonetheless, a continuous stream shrinking and swelling, slowing down and speeding up with the seasonal runoff, changing channels during floods but forever moving with its own sense of direction.

While an imperfect solution, this imagery gives me a little distance from the frustration and also reminds me that we all have obstacles of every shape and size, whether it's physical pain, divorce, financial troubles or family problems.  My challenge, ultimately, is to develop a certain acceptance of the obstacles and a respect for my own way of flowing around and through them.