Sunday, November 16, 2014

The electric bike solution

The trouble with exercise


Wanna decrease your migraines?  Get more exercise.  BUT if you have chronic migraines or chronic daily headache, you are generally so bushed that anything beyond an easy stroll seems insurmountable.  Fatigue is an ever-present problem.  I'm usually either recovering from a migraine or working up to the next one.  I used to walk a lot until I fell a couple of years ago.  I now have achilles tendonitis, which means that long walks and hikes are out.  I like to swim, but I don't do well with chlorine, so that's a summer activity for me.  I continue to do yoga and take short walks, but not much else.  I used to ride my bike, but we live in hilly terrain, and I just no longer have the stamina to go beyond our neighborhood.  While I might make it downtown or over to my son's house half way across town, I don't have the confidence that I can then get home without being totally wiped out.

Power


Now the equation has changed.  After much research and discussion with my husband, Cousin Carl, and friend Michael, a couple of weeks ago we went on a shopping trip to Seattle.  We bought a kit to retrofit my own bike with an electric motor, battery and controller.  I now have an electric bike which gives me the boost I need to pedal around our up-and-down town.  I took ten-mile bike ride last weekend and still had energy to devote to the rest of my day.  The bike allows me to pedal while the electric motor assists as much as I want or need it to.  It virtually eliminates the hills and vastly extends the distance I can go.  On the other hand, if I'm feeling energetic, I can cut the power assist and cruise along under my own steam.

Electric bicycles have been around for a while, but just in the last year or so there has been an upsurge in interest.  There are a lot of electrics on the road now.  People choose to ride an electric bike for a variety of reasons.  Some folks commute to work and don't want to arrive all sweaty and in need of a shower.  Some of us are getting older and have heath issues including joint problems that makes biking harder.  I have a friend who works nights.  His work place is close to home, but the return trip is up a big hill.  After a 12 hour shift, he just needs a little help getting home in the wee hours of the morning.

There are many options now.  If you're interested in an electric bicycle, you'll need to do your homework.  Seattle is a cycle-conscious city, so there is a lot available in terms of different brands, systems, range and power.  However, we found there was no one shop that carried all the different choices.  We had to drive all over town to look at a few on the top of our list. You can buy a bike all tricked out with the electric system built in or you can retrofit your own bike with a kit.  There is a big price range.  They're not cheap, but neither is a gym membership.

Wednesday, November 5, 2014

Life in a shoe


There was an old woman who lived in a shoe
She had so many headaches  she didn't know what to do
She gave them some pills but still felt so ill
That she took a hot bath and it gave her the chills

She went on a diet  She quit eating things bad
Except for dark chocolate which is totally rad
She did some deep breathing and yoga as well
But nothing but nothing made her feel swell

Her kids grew up and all flew away
Her husband stuck around but the headaches held sway
Fall winter and spring came and they went
Summer arrived and still she felt bent

She went to the doctors and left feeling like crap
She had so many symptoms they gave her a plaque
They changed her medication to this and then that
But the pills made her dizzy  She couldn't add or subtract

The meds made her crazy  dizzy and blue
They left her feeling lazy muddled and stewed
She dreamed of travel  Of leaving behind
Her town her country her body  Her own kind


She went to the beach and then went there some more
She sat on the sand  and heard waves pound the shore
She felt the spray in her face and the wind in her hair
As she lay in the sand and sucked in the salt air

She walked into the water  Felt the lift of the waves
Tasted the salt on her tongue  Could have floated for days
At least for a while  the water was a way
To forget the pain in her head  A way outta the maze

As she lay there in liquid  her brow felt so cool
Her body felt at home in that vast wet pool
As time went on she returned again and again
To the watery world that removed all her sin

Wednesday, October 22, 2014

Watching the river flow

The Elwha

The Elwha River flows down from the Olympic Mountains in northwest Washington state.  The story of this river is one of tragedy and now, perhaps, triumph.  One hundred years ago the Elwha was dammed which provided power to communities downstream but eliminated the great runs of Salmon that were the lifeblood of the Lower Elwha Klallam tribe.  The National Park Service in cooperation with the tribe has just completed the largest dam removal project in history, and as of spring 2014, the Elwha is once again running free.  Adult salmon have already been seen above the previous location of the upper dam.  

Metaphor

For me, the ongoing story of the Elwha feels like hope.  It's all about renewal.  We all seem to use metaphors to describe the harsh difficulties and the dark side of illness.  It's a great weight or a dark tunnel or a battle against great odds.  But we need metaphors too, to guide us toward health and hope.  Whether it's moving into the (sun) light or seeing light at the end of the tunnel, we need to find a vision, an image or a place that moves us toward health.  Gardens, benevolent spirit animals, milagros (from Mexico), saints or seismic events all have healing power.  The return of the Elwha to a free flowing river is just a newspaper story, on one hand, or, on the other, a profound event that has been years in the making, a story about succeeding against all odds.  I am working to develop a heightened sense of awareness, of beauty, of life itself.  On my good days, the days when I succeed........
the laugh of my grandson, a chickadee eating my sunflowers gone to seed, a late season humming bird sipping from the tiny flowers of the big old rosemary bush in my messy garden, they all move me.  I notice and feel a tiny bit better for it.

Pilgrimage

Last week we took a short trip to visit the Elwha.  We visited the River itself where I got to dip my feet, feel the flow of its cold water and squish the mud between my toes.  I listened to the hollow sound of water over rocks and sucked in its vitality.

Then we stopped at the site of the lower dam and saw.......no dam.

We drove down to the mouth of the River where it dumps into the salt water of the Straits of Juan de Fuca.  There we saw all the newly deposited silt in the form of beaches and fresh water ponds with a huge abundance of birds.

We finished off our Elwha adventure eating dinner with friends Jenny and Melissa.  They work for USGS (US Geological Survey) and are involved with a survey of the outflow of the river and the sampling of water as it comes down the mouth and flows into salt water.  They are courageous, passionate women who run boats and dive to collect scientific specimens.  Hearing their stories, the science and the daily challenges and rewards of their work filled me with admiration as well as a strange kind of confidence that we are all metaphorically, somehow, in good hands.  


Thursday, October 9, 2014

the Healing

Once upon a time ...... 


There was a Woman with a very distressing problem.  She went to the healer in her village and said, "Please Sister, I have the most terrible pain in my head.  It never leaves me, and it has eclipsed all the good in my life.  The laughter of my children sounds like a murder of crows screeching in my ear.  My husband's caress feels loaded instead of loving.  The sun pierces my eyes rather than warming my soul.  The food on my table turns my stomach instead of nourishing my body.  My friends have drifted away, and I can no longer work and contribute to my family.  Each new day is a burden bringing yet a different dizzy disaster to my head and my heart.  Can you help me?  

The Healer, who was a woman of vast skill and experience, had a deep well of sympathy vibrating in her soul.  Her appearance was illusive; her eyes changing color as she moved.  She seemed to be many people in one body.  She kept an herb garden and a dispensary filled with potions and remedies of all sorts as well as an infirmary for those patients so burdened by illness they needed her constant care.    She calmly questioned the Woman not just about the pain in her head but about her stomach, her neck, her limbs, her breath and what was in her heart.  They worked long into the night.  She probed her memories, and she laid her hands on the Woman feeling the heat and the vibrations in her head, the tension in her muscles and the tenderness in her heart.


As the sun rose the next morning, the Healer sent the Woman on her way with a tincture to put in her tea in the morning and the evening, a plant from which to harvest and eat the leaves, and a deep black stone from the river.  When the stone felt the warmth of her hands, it began to emit a warm white glow that lasted just long enough to brighten her day a little.  Further, the Healer gave her a soft brown band for her head and a pair of turquoise-blue gloves patterned with intricate cabalistic symbols.  When the Woman placed the band over her brow, it tingled for several minutes, leaving her head cooler and her breath quieter than she remembered in a long time.  When she put the gloves on and ran her hands over her body, it came alive and sloughed off the pain and fatigue buried beneath the layers of her skin.

Slowly, over the next few weeks the Woman was drawn to sit by the river and soothed by the wet, froggy smell and the forever flow of the water.  She began to notice nuances in the clouds and marvel at the endless variation of shapes, textures and movement.  As fall and then winter came on, she began to truly see each leaf, each twig and branch on the trees around her home and further afield along the paths around the village.  The voices of her children modulated and they sounded like stories and emotions instead of the infernal racket of the crows.  When her husband touched her, any lingering pain dissolved.  The air felt fresh instead of raw or, at other times, warm on her skin instead of oppressively hot.  When the sun came out, it was a blessing.  

The pain in her head still came and went, but not so frequently, and it no longer obliterated the valuable things in her life.  The lost child showed up at her door and she opened it and let her in.  Ordinary happenings in her life became possibilities instead of burdens.  Over the years, she had grown a carapace in an attempt to keep the pain at bay.  This hard outer shell slowly began to dissolve to be replaced by a soft cloak that protected her from the elements and softened life's blows.


The hours and spaces in her days that had once been filled with pain were more open.  And while she had previously trimmed and whittled her life down and down and down to accommodate the pain, cutting off the good and productive to, perforce, make room for the pain, now she found herself wondering, but in a good way, what she would do with all that newly created space.  




For more healing stories, try............
Sacred Hearts by Sarah Dunant
Brother Cadfael series by Ellis Peters


Wednesday, September 24, 2014

Better

A Story

This is just a story, not a final solution but an episode.  I've noticed most people tend not to share their specific medication regimen on line, presumably because everyone is so different.  Nonetheless, I think it helps us to hear stories of all kinds, so here's one of mine.  

This last year hasn't been pretty.  Non-stop headaches with all the attendant pain, nausea, vomiting, etc, too many pills and injections, flagging energy and hope, lots of loss.  So I decided it was time to get serious about an occipital nerve stimulator.  After a failed attempt to get what I needed close to home, which is the Pacific Northwest, I opted to seek help from Mayo Clinic in Scottsdale, Ariz.  I made an appointment for May 29th.  

Now, the next part of this story is embarrassing but deserves to be told.  Instead of showing up on May 29th, I arrived for my appointment on April 29th and discovered, much to my shock and dismay, that I was a month early.  To make matters worse all docs were out of town at some sort of convention and there was no hope of getting in to see someone early.  We, my husband and I, packed up and went home.  This was a real low point.  I attribute my mistake to some combination of my lousy ability to concentrate at the time and my terrible need for relief.  Hopefully, it will make you all feel better that you haven't committed this particular blunder.

Bad news

A month later found us back in Arizona on the appropriate day.  I saw the neurologist on Thurs. and the anesthesiologist/ pain specialist on Fri.  The news wasn't good.  They were convinced I was in rebound contrary to the opinion of my own local doc.  I didn't qualify for their upcoming study on occipital nerve stimulators.  My insurance, Medicare + Regence, would not cover the procedure.  Further, I was informed that in all probability, if I did go ahead with the ONS trial and placement, there was every probability that it would have to be revised. In other words, a second surgery was likely.  The neurologist offered to hospitalize me for no more than 5 days for treatment of rebound to discontinue near daily use of DHE as an abortive.  He admitted this would be painful and could offer no help or strategy on how I would then be able to travel, fly home in a state of probable severe pain.   

Other news

Among the neurologist's recommendations were some new medications which included Zyprexa and angiotensin receptor blockers (e.g.: Candasarten), a sleep study as well as stopping overuse of abortive meds.  Also the Transcranial Magnetic Stimulator once it becomes commercially available in the U.S.

Expectations

None of this whole episode met with my expectations.  Isn't that the way it goes - almost always?  Without doubt, I was disappointed.  However, there were some serious ideas to explore, just not the ones I hoped for.  Once I got home and recovered from the trip, I determined to follow up on the Mayo recommendations.  And I got better, not best but better.  Here's how.


My current regimen

"Old" preventative meds that continue to help:  baclofen, klonopin, and isometheptene.
Abortive:  naratriptan no more than 2x per week
Pain:  Fioricet no more than 2 x per week  
Cannabis for headaches and nausea from about 7 to 10 on the pain scale.
New preventative medication:  Zyprexa at the lowest possible dosage
Cephaly: A tens-like device that "treats migraine pain with neurostimulation....... that limits pain signals from the nerve centre by working on the trigeminal nerve........"  This device now has FDA approval in the U.S.



http://www.cefaly.ca
http://www.cefaly.us/?gclid=CPGLx8y79cACFRFffgoddHgAlw
I have the Canadian version which has both preventative and abortive protocols with a capacity for a stronger signal than the ones marketed in the U.S.  I ordered and tried this out months before the Mayo visit - and gave up on it.  I tried again and found that it does actually work for me, maybe ⅔ of the time.
Rebound:  I worked myself out of rebound over the course of about 3 or 4 weeks.
Sleep:  Still a problem I'm working on.  
No movies, TV or computer use after dinner (unless I'm willing to pay the consequences).  
New bigger bed so I'm not so conscious of my husband's every breath and twitch.  This is a big commitment in our small house, which has involved my husband punching out a wall to enlarge our tiny bedroom. 
I sometimes use Zolpidem, which is not ideal as it promotes a lighter phase of sleep and is also habit forming.  
No sleep study yet, but that may be coming.

Exercise

We're always told to exercise, that it will help reduce the number of headaches.  This is, of course, very hard to do when you have chronic daily headache.  However, I try.  Over the past few years I have "found" once more that I love to swim.  Being in the water makes me feel good, makes me feel better about myself.  During the summer and now early fall I swim in Puget Sound, sometimes with a shorty wetsuit.  Rivers, lakes or the ocean when I'm on vacation.  Occasionally I swim in indoor pools in the winter, but I don't do well with chlorine.  I walk and ride my bike around the neighborhood, but decreased stamina makes biking our hilly town a challenge.  I'm looking into an electric bicycle. I continue to do yoga.

Now

I have 3 or 4 headaches a week, but most respond to the Cefaly device.  If I wake up with one in the middle of the night, I resort to naratriptan (generic amerge).  I still use pain meds if it's a headachy day and I have a babysitting gig w/ my grandson or a social thing with friends or some other important commitment.

Different strokes

For different folks.  But personally, I like to know what works for others, so I can pick and choose a new idea here and there.  If even one of the above ideas works for one person, this will have been a worthwhile effort.





Wednesday, September 17, 2014

Boost in Self confidence

Capable?


Living with near daily headaches has undermined my self confidence.  Slowly, daily pain has eroded my belief in my ability to do things, all sorts of things.  Taking a long walk, riding my bike, working in the garden, going on excursions with my friends, taking care of my grandson, doing art work, holding down a job - have all been compromised by my head pain.  I've become cautious, my life circumscribed by pain and pills, fatigue and reduced stamina.  I used to ride my bike all over town.  Now, I stick to my neighborhood and about a 2 mile radius from home.  I used to walk a lot.  I still walk but not too far since either foot pain or fatigue is a regular visitor.  I'm a weaver and I used to weave a lot, but again, headaches and foot injury has meant I haven't sat down to weave in a long time.  The upshot is that, slowly but surely I've become convinced that I'm incapable of a full range of activities, work and play, that make for a balanced healthy life and cheerful attitude.

Ladies of the Lake (and a gentleman too)

A Swim across the lake


Recently I went to the Lake with a group of friends for an annual late-summer swim across and back.  I've been hesitant to try the whole distance before, but this time, with a rescue boat in the water and a surf board to latch onto if needed, I struck out and made it all the way across and back, a small but important triumph and a sorely needed boost in self confidence.

A Walk to the Saturday Market


The next week I took a walk with my friend Lee and doubled my usual mile and a half limit.  I have been limping around with achilles tendonitis for more than two years.  Walking has always been a pleasure for me, but I fell, and all of a sudden that simple pleasure was no longer available.  I couldn't do it.  Finally almost 3 years later, my feet are not totally healed but close enough, I decided, for a challenge.  We took off for the market at a brisk pace - and made it - there and back.  I went home feeling more intact and whole than I had in a long time.


A Morning in the studio


Yesterday I went to the studio, sat down at my big loom and wove for an hour and a half - a triumph.  I'll be back there soon.  Tho' not great for swimming, winter is good weaving weather.  None of this is a big deal until it is because you just don't have the pain-free time or energy to pull it off.  So I feel good about walking and weaving and swimming, and I plan to file my memory of these events away to lift me up the next time I'm under water instead of on top of it.

Saturday, July 19, 2014

I am not grateful

It's strangely common to hear statements of gratefulness from people who are gravely ill.  Grateful not in spite of their disease, but because of it.  The concept of disease as gift escapes me.  I don't get it.  It may be heresy, but I am not a member of the disease gratitude club.

Aura 1
I have had chronic migraine disease for 30 plus years.  I have had migraines since childhood.  That's a long time.  While I do have many people and times in life I'm grateful for, I am not grateful for the daily pain in my head.  Not only do I have headaches nearly all the time, I have prodromes that include extreme fatigue, difficulty word finding, letter reversals when I'm writing, poor concentration, central nervous system irritability, and increasing numbers of classic visual auras complete with scintillating lights and holes in my visual field.  Postdromes include (but are not limited to) fatigue, depression, difficulty concentrating.  They leave me feeling fragmented - distracted, disparate and disturbed  There's more, but that will do.  Y'all who have migraines know all about this, but lots of people I'm around don't truly realize the extent of symptoms and the disruption headaches cause before and after the head pain phase.

Headaches have robbed me of days, weeks, months, years of life while I have languished in pain on the couch, in bed, in the bathroom vomiting into the toilet or in the doctor's office.  Chronic daily headache does not (usually) kill you.  It just makes you sick and miserable a lot of the time.  In my case - and that of many others - there seems to be no cure nor even any remission.

Aura 2
I have 2 friends who are gravely ill with cancer.  While I haven't been close to these women over the years, we definitely share a history.  Our kids were kids together, and we're members of a larger shared community in a small town.  I don't know how they feel about themselves, their lives and their disease right now, but I do know that there has been an upwelling of family and community support for them in their struggle.  I'm glad that this is so.  They need it and deserve it.  We all do during critical, difficult times of our lives.  And don't get me wrong, given the choice, I wouldn't trade maladies with them.

But people who suffer from migraine don't get much community support.  Severe headache disease is insidious.  It is treacherous.  While robbing you, the sufferer, of life, liberty and pursuit of happiness, it leaves you looking more or less normal.  It is a silent killer of peace of mind and joie de vivre.  Since it is "just a headache," there is an expectation that you should just pop a pill and soldier on - show up to the party or the job or whatever that entails in the larger sense. We all try to rise to expectations, myself included.  When I (frequently) can't, it leaves me feeling guilty and alone, embarrassed that I have failed yet again to hold up my end.   I know better, but these feelings are a hard habit to break.  And since it is just another headache, and the whole thing goes on forever, there is not much understanding out there.  No one offers to clean my house, buy my groceries or cook dinner.  I kind of understand.  People are busy, and this particular disease just drags on endlessly.  There is no end point.
                                                   
In the beginning....... and 20' later

Migraine has taken the following toll in my life:
  • Loss of huge blocks of time with my family and friends
  • Inability to attend significant personal, family, work and community events
  • Loss of friends and misunderstandings 
  • Loss of work days and several leaves of absence from three different jobs over the years
  • Ultimately - forced early retirement from a profession I loved
  • Loss of ability to do the things I love to do: travel, write, weave, walk, swim, hang out w/ people
  • Inability to maintain my house, my garden, and provide for and participate with my family
  • Significant loss of income
  • Treatments, medications and hospitalizations that have cost me tens of thousands of dollars
  • Persistant feelings of isolation and loneliness
  • Other losses so significant and personal that I'm not even willing to discuss them publicly.

The above list is not just mine.  It is common among people who suffer from chronic headache.  
Here are some statistics:

About 40 million Americans suffer from migraine, some 14 percent of the U.S. population.  75% are women. 
Between 2 and 5% of the population, world-wide, suffers from chronic migraine
 (15 or more headache days per month).
According to the World Health Organization, migraines are a top leading cause of disability worldwide.
According the the WHO, severe migraine attacks are among the most disabling illnesses comparable to dementia, quadriplegia and active psychosis. 
Twenty to 30 percent of U.S. soldiers returning from combat develop migraine disease.
Migraine is the least publicly funded of all neurological disease relative to its huge economic impact on peoples lives. 

When I read what I've written, I feel like I'm whining, and that's kind of the trouble.  I'm not.  It's just my truth, and it resembles that of many others similarly afflicted.  I'm in a continual process of puzzling out what it means to keep living with such a difficult malady and doing the best I can.  There are essentially no guidelines and no support groups for people like me, so we all have to create our own ways of communicating and sorting things out.