Friday, April 29, 2016

When I'm 64 ..........

Aging and migraine


When I get older losing my hair
Many years from now
Will you still be sending me a valentine, Birthday greetings, bottle of wine?
If I'd been out till quarter to three Would you lock the door?
Will you still need me, will you still feed me
When I'm sixty-four?
                    The Beetles

Now that I'm older plenty of hair
Zero years from NOW
Will you still be sending me a valentine, Birthday greetings, bottle of wine?
If my head is knockin' with terrible pain Will you bring me tea?
Will you still need me, will you still feed me 
When I'm sixty-four?


When I was younger

I have had migraines since childhood, but my headaches really began to ramp up during my child-bearing years.  In my early 30's they began to interfere occasionally with my work as an occupational therapist. The headaches happened infrequently with my first pregnancy, but by the time I was carrying my second baby, they were a persistent problem.  Things improved after my son was born, but the headaches slowly, almost imperceptibly became more frequent and more disruptive to my family and work. They had begun to be real interruptions in the flow of my days.

I can clock my slow, downhill slide over the next few years by the 5 leaves of absence I took to try and get a handle on the persistent pain.  Our basement clinic at the hospital had florescent lighting with no windows to the outside world.  At the end of a 5 or 6 hour day, I usually went home with a headache, which slowly resolved over the next hour or two.
After a few years, I moved on to work in the public schools.  Even though the job was part time, I rarely made it through the day without the onset of a migraine.

I also worked on my off days, evenings, and weekends doing production weaving and teaching weaving and craft classes to adults and children.  When I arrived home in the afternoon, I had two young children of my own to care for.  It was a productive, interesting time but difficult because I was juggling pain and fatigue as well as work and family.  Years later, Jeremiah, a teenage friend of my son, remembered often having to tone it down because I was in the throws of yet another migraine.

In 1991 Imitrex came out as the first designer drug aimed at aborting migraine headaches.  Having failed to respond to any of the preventative medications prescribed, I depended on Imitrex to keep me going for years.

In 2000, I went back to school and got a certificate to teach English as a Second Language. I got a job at the local community college teaching English to immigrants.  It was profoundly satisfying work but a continual struggle to perform well.  After 11 years, I retired early when I began to feel that my headaches were impacting my teaching.  Leaving a job I loved was a blow, but I'm proud that I made it to age 66 before having to 'hang it up.'


Over the years........

I tried and failed to find relief from several major first-line medications including Verapamil, Nortriptyline, Depacote and Topamax.  I also began to have adverse reactions.  Nortriptyline precipitated episodes of tachycardia. Naprosyn caused itching and burning in my hands and feet.  By 1998 or 1999, I was using Imitrex daily. My doctor advised against this and prescribed beta blocker, Atenolol, in hopes of preventing my escalating headaches.  Atenolol tipped me over the edge into a serious depression and required yet more medication.

Over time my specialists prescribed a total of at least 30 medications aimed at preventing migraines.   The results of this chemical barrage were short term or no benefits on the one hand and increasing side effects on the other.  These ranged from the usual including sedation, fatigue, dry mouth, hair loss, nausea, constipation, diarrhea, anxiety and insomnia to the unusual including loss of taste, breast enlargement, inability to do basic mathematics and visual anomalies.


Now that I'm older

The doctors all told me, 'Hey, good news.  When you get older (specifically, when you go through menopause), your headaches will go away.'  Sadly this did not happen.  As I began perimenopause, things really began to go south - and then they got worse.  Proving them wrong was not satisfying.  Actually it pissed me off for a long time.

Doctors want to help, and their answer is usually to prescribe drugs that have a track record with other patients.  While understandable, I have found little acknowledgment in the medical community that things change with age, and more drugs on board may make things worse instead of better.  Now almost 70, I've learned I can tolerate and benefit from some medications at a low dose.  Other drugs make my health and my headaches worse. I've also learned not to rely on doctors to sort this out.

With age, headaches have become more frequent but less painful.  Auras happen more often.  My pre- and post-headache fatigue has increased, and my stamina decreased.  Unreliable short-term memory and word-finding difficulties drive me crazy.  Many of these symptoms are common to migraineurs, but age, in combination with medication, accentuates the problems and makes them harder to tease apart.  And as always, my headaches continue to change.

Now I'm in the process of very slowly weaning myself off low doses of Baclofen, Klonopin, and Remeron.  I still use Naratriptan as an abortive and Fioricet for pain, both about once or twice a week.  Since January, I've been using the Spring TMS device, which is helping to decrease the pain and reduce my reliance on prescription drugs.

I find the more time I spend outside and around the water, the better I feel.  Yoga, meditation, art,  walking and bicycling, time with friends and family all feed my spirit.      


My father's question

The year I was born, my father was diagnosed with multiple sclerosis.  He suffered from fatigue, double vision, numbness in his hands, difficulty walking during exacerbations and, no doubt, other symptoms I was unaware of.  But he continued to work in a demanding career as a civil engineer until his late 50's, share in raising 2 daughters, play golf, do woodworking and, in short, carry on as best he could.

Not long after he retired, when I was a young adult, he asked me if I thought he was a failure.  I was shocked and found his question puzzling and incomprehensible.  I answered, "No, of course not."  But I didn't ask him why.  Now, I think I understand. In the face of debilitating illness, no matter how hard we try, we can't pull off a life not impacted by pain, weakness and fatigue even though we feel, against all odds, we should be able to do better or do more.

I struggle with a level of regret around the things I can't and now won't be able to do in my life.  I have a definite sense that time is short.  Achieving greater self acceptance and peace around my own personal triumphs and defeats throughout a life with migraine is, I think, the most important task for me now.




Thursday, April 7, 2016

SpringTMS


New in January 2016

This new "machine" is a portable, single-pulse Transcranial Magnetic Stimulation (sTMS) device.
It has been approved by the FDA "for acute treatment of pain associated with migraine headache with aura."  From the manual, "The SpringTMS is intended for self-treatment and delivers a non-invasive, brief, single pulse of magnetic energy to the back of the head.  This creates a brief electrical current in the brain intended to stop or reduce the effects of migraine headaches."  These mild electrical currents excite and depolarize neurons in the brain.  They inhibit CSD or cortical spreading depression and thus have the potential to terminate aura and subsequent headache.
http://www.ncbi.nlm.nih.gov/pubmed/20553334

I have chronic migraine with aura, but my auras occur 1 to 4 x monthly while my headaches are a near daily occurrence.  While the FDA has approved the sTMS for migraine with aura only, some studies cite evidence that it is effective for migraine with and without aura.  

The sTMS became available for rent from eNeura Inc. by prescription in the U.S. in January of this year.  The cost is approximately $250.00 per month.  While I am in the process of applying for coverage from my insurance company, there is no guarantee they will agree to reimburse me.  Representatives from eNeura have been accessible and cooperative in working with me on reimbursement request.  The eNeura nurse/ patient representative is also readily available by phone to discuss the finer points of using the device and answer any questions that may arise.


Zapper

In consultation with my doctor, I've worked out a treatment regimen.  I use my zapper, as I call it, in the morning and in the evening for prevention.  I deliver 3 pulses each time.  When I have a headache, I give myself 3 consecutive treatments or pulses. If the headache doesn't go away in about 10 minutes, I repeat once or twice with another 3 pulses. I try to use the device as soon as I feel a headache coming on.

The treatment doesn't hurt.  You only hear and sort of feel a "thunk" inside the mechanism.

The sTMS was approved in Britain for use with patients with migraine with or without aura and became available in Jan. 2014, a year earlier than in the US.  Post market studies show optimal dosing for symptoms in the range of 10-12 pulses per treatment day.  http://thejournalofheadacheandpain.springeropen.com/articles/10.1186/s10194-015-0535-3

So far so good

I've now had my SpringTMS for three months so this is a preliminary report.

The good news: there is no doubt that it is aborting my headaches most of the time.  My headache journal supports this conclusion. When I do have a headache, I treat with the sTMS fairly quickly, and the headache usually goes away.  My use of abortive medication has decreased from 3 or 4 times a week to once or sometimes twice weekly.

I'm less sure whether or how much regular use of the device is acting to reduce the frequency of my headaches. This will become more obvious in the next few months.  I'll keep you posted!

On days when I use the SpringTMS multiple times to abort a major headache, I still sometimes feel the after effects including fatigue and depressed mood the next day, but I'm more or less functional and not in pain.  While my energy may be low, I can still do routine activities.  This is a huge difference.  I now feel like I can engage in activities that I wouldn't consider 2 months ago.  I am thinking about taking a writing workshop in June and an art class in July.  Since this requires not only sustained attention and tolerance for being around groups of people for hours at a time, but also tuition, I just haven't been willing to make this kind of commitment for a long time.

Traveling

In February we spent 10 days in Melaque, Mexico, a trip that had to be postponed in December because I was just feeling too lousy.  In spite of coming down with a Mexican cold, my headaches didn't spike and I was able to enjoy swimming, walking on the beach, sampling the food and practicing my Spanish.  I had no trouble traveling with my zapper although it kicked off the scanner as it went through security, and I had to step aside for a more thorough inspection.  Word to the wise:  keep it easily accessible in your carry-on luggage.  I did take the manual and my prescription with me as documentation; however, no one seemed concerned or asked for my papers.

Room with a view






Thursday, February 11, 2016

Gut Problems Feed Headache

The Fall

Both in terms of season and headaches.  In late September, early October, I was doing well.  I had some weeks of 4 headache-free days in a row, and I was feeling pretty good. Then something happened to my belly, and I've never been quite sure what caused it.
Rocky descent 

I went to the symphony with friends.  In the middle of the performance high in the nosebleed section of the balcony, my stomach began to hurt and I was suddenly tired and sleepy.  It was all I could do to keep my eyes open.  After the performance, I went home and crashed and didn't get off the couch for days.  I couldn't eat much.  I was nauseated, my stomach hurt and I had persistent diarrhea.  My digestive tract was in full scale revolt.  I assumed I just had a stomach bug and waited for it to go away.  Days turned into weeks which turned into months of nibbling at a bland diet and going to doctors.  I lost 15 pounds.  My headaches spiked to near daily events.  Not being able to eat normally was a knock-out punch.  I felt so lousy, weak and anxious that we had to cancel our December trip to Mexico.  My creative brain tanked.  I couldn't bring myself to write, draw or weave.

I had no fever, nor had I taken antibiotics recently, two diagnostic clues that might have indicated a serious infection.  All lab tests came back normal.

Winter heading towards spring

On December 1st, I went for my first visit with a new acupuncturist.  Slowly time, diet and her treatments helped me turn this thing around.  It bears mentioning here that I never let my acupuncturist put needles in my head.  I learned the hard way that it triggers a migraine.  Finally within the last 2-3 weeks, the severity level and the number of days between headaches have stretched out enough that I am out of rebound range in my use of abortives and rescue meds.  Now almost 3 months after this malady set in, my stomach and gut have decided to behave themselves, my anxiety is down, and my energy level up.

My family was together for Christmas when my son confirmed that he and his girlfriend were truly getting married soon (although they didn't yet know quite when) .  By the end of Jan., I was feeling good enough to go ahead and rebook our winter vacation to Mexico for mid Feb.  Of course, soon afterward, they sent out the evite for a May wedding in ........ Mexico.  Two trips is not a bad thing!  

Digestion and headache

So what happened?  It may have begun with a virus and what my gastroenterologist called post viral syndrome.  But I also had some stomach trouble off and on last summer, which leads me to consider other possibilities.  I am extremely sensitive or frankly intolerant to many medications.  One theory is that I can no longer tolerate one of my headache prevention meds.  My stomach was signaling me to reduce the dosage.  I do know that when my gut is happy, I have fewer headaches.  Conversely, when my digestion is messed up, my headaches become more frequent.

There's a lot of interest and research in western medicine right now on the subject of the gut micro biome.  It turns out that what goes on at the microscopic level, the bacteria we carry around in our intestinal tract, is implicated not only in diseases like diabetes, obesity, heart disease and inflammatory bowel disease, but also in rheumatoid arthritis, autism, alcoholism, multiple sclerosis and, yes, migraine.
http://journal.frontiersin.org/article/10.3389/fneur.2014.00241/full
http://www.ncbi.nlm.nih.gov/pubmed/25402818
 
The gut and your migraine brain communicate via the vagus nerve, endocrine and immune pathways. And the communication travels both ways, gut to brain as well as brain to gut.

What does all this mean in terms of what we put in our mouths to nourish ourselves and cure our ills?  Can we use this information to improve our health and reduce our headaches?  Well, the jury is obviously still out on this score, but here's what I do and why.

  • First I'm keeping my eye out for more information via current scientific studies and research.
  • I have quit taking isometheptene and I'm slowly weening myself off another of my meds under my doctor's watchful eye.
  • Whenever possible I avoid taking antibiotics, which strip your gut of helpful bacteria as well as the bad bugs they're designed to take out.  I have a primary care provider I like (an MD), as well as a naturopath who has prescriptive power in Washington State.  He often knows effective alternatives to antibiotics.  
  • Years ago, I had food allergy testing and the one and only thing that popped up was a clear intolerance to eggs borne out by the fact that they make me very constipated when I eat them.  So I don't.   
  • I take L-glutamine which also seems to help my gut.
  • I take probiotics and eat foods that supply prebiotics which, evidence suggests, help digestion and protect you from harmful bacteria.  http://www.mayoclinic.org/healthy-lifestyle/consumer-health/expert-answers/probiotics/faq-20058065
  • I take a tablespoon of ground flax seed daily.
  • I don't eat much prepared or packaged food, and when I do buy the odd bag of chips, package of crackers or boxed soup broth, I shop for the one that has the shortest list of ingredients, the one that leaves out the sugar, salt, thickening agents or preservatives.
  • I eat a lot of vegetables which, fortunately, I like.  My latest easy, tasty veggie is stir fried or steamed greens including kale, cabbage, beat greens, chard and spinach and more.  When my gut is behaving itself, I eat a lot of uncooked greens in salad too.

Here are a few tips from Dr. Christiane Northrup, a good source of information on ways to take care of yourself.  http://www.drnorthrup.com/how-to-improve-your-gut-microbiome-in-a-day/

And from Michael Pollan in his book, "In Defense of Food."  Pollan looks at American eating habits and what he calls the culture of eating in this country.  He comes up with some great, well-researched  guidelines that deserve our attention.

Thankfully, I can finally eat again with the best of them, including tacos and enchiladas, rice and beans as well as #3 spicy Thai.  I'm looking forward to eating whatever I feel like when we touch down next week in Melaque, Mexico.  My strategy for staying healthy in Mexico?  Lots of limes, garlic and mineral water as well as my regular dose of probiotics.  Avoid the street food, and choose restaurants that are busy turning over a lot of meals every day.

Hasta luego y buen provecho!


    

Saturday, February 6, 2016

Family News and migraine

What's goin' on 

Andrew and Jenny are doing a kitchen remodel.  There is lots of discussion around paint colors, what it will feel like to tear that wall out and open up the kitchen to the living room and just when this is all going to happen.  Since for us, this is a vacation to Santa Cruz, we ride our bikes, walk on the beach and talk about which route to take this time driving our van north towards home.  Book and movie recommendations are always a topic.  Friends Jacob and Sally are getting married and we're all invited to the wedding in Poulsbo, Washington.  Andrew and Jenny are getting married in May in Sayulita, Mexico.  The foundation of Ben and Leslie's new house has been poured.  The kids are coming over on Sunday.


Notice there is no discussion about headaches, neither my son Ben's nor mine.  This is almost always the case.  I don't usually talk much about all my head pain because while my life seems virtually consumed by it, I feel as if it's probably a bore for everyone else.  And in fact I'm bored with the topic myself.  This in spite of the fact that my headaches have become near daily events and Ben's have spiked recently.  He functions as a nurse with dull daily head pain which sometimes spikes to severe pain by the time he clocks out.  For both of us the pain pattern and frequency fluctuates with the season, stress level, ambient noise, whether or not we get a good night's sleep and more.  Of course sleep is at a premium for my son with a pre schooler and a toddler at home and a new house under construction.

When Ben and I are together with the kids busy playing, that's when we usually check in to see how the other guy is doing and offer up any new or interesting information we've come across.  Here's what's happening for me right now.

Mood

I'm in a pretty good place emotionally right now.  My mood usually tracks with my headache frequency and season of the year.  My headaches are currently less frequent thanks to recovery from recent illness and relatively new treatment options.  And while the February winter weather is oppressive, we're finally headed out for 10 days in Mexico starting next week. 

When my headaches are out of control and I can't do the things I like to do, I am downhearted and at least a little depressed.  It's hard for me to maintain a positive attitude, and against all logic, I struggle not to blame myself.  Self blame is quite common among those with chronic illness.  Articles abound on the internet about how frequent and counterproductive this is.  One of my favorite authors on the subject, Toni Bernhard writes about this negative emotion and how to get beyond it.  Find her blog, Turning Straw into Gold, at the address below. 
https://www.psychologytoday.com/blog/turning-straw-gold

Mid winter in the Pacific Northwest is wet, cold and gray.  The "monsoons" start in mid to late October.  The weather warms up in the spring, but the rain and gray skies often continue through June.  I usually do ok until after holidays.  Then I run out of patience, and my mood slides into the gutter like the rain on a wet day.  If I can stay active and engaged with friends and family, I do better.  But if I am flattened by headaches, my mood deteriorates.  I can tolerate one or the other, headaches or Northwest winter, but putting up with both is a killer.

Current Meds 

Preventatives:  Baclofen, klonopin, mirtazapine, zyprexa and CBD cannabis capsules
Abortives:  SpringTMS and naratriptan
Rescue:  Fioricet w/ codeine,  cannabis via vaporizer for pain, nausea and sleep
Sleep:  Zolpidem

I'm very fortunate that medical marijuana is legal in Washington, because nothing else except narcotics touches it for conquering pain and nausea while waiting for the abortives to work.  The downside is you can't travel legally out of the State with it, and I certainly can't take it to Mexico, our February escape destination.  In anticipation of traveling, I have spent the last two weeks weening myself off marijuana to see how I do.  Not bad, just less comfortable.  Poor sleep is actually the worst of it.

I spend hours nearly every week staying on top of any and all headache news that hits the national media, reading any peer reviewed scientific articles I can get my hands on, checking in on the blogs to make sure I'm not missing any new possibilities, learning more about diets that seem to be working for others, seeing specialists including, right now, my headache guy, an acupuncturist, and a mental health provider.  I log in hours every month or two haggling with my insurance company over medication coverage. While I share some of this information with my husband, much if it is filed away or filtered for personal use inside my own skull.  It's a world of feeling and information that tends to live within me alone.  Here's just a little bit of the latest 

Current and future possibilities

Spring TMS


This device involves transcranial magnetic stimulation to abort a headache.  It rents for $ 250.00/ month and will likely not be covered by the vast majority of insurance companies.  It just became available in late December.  I got mine 3 weeks ago.  It's early days, but the frequency of my harsher headaches is down, and I'm not using quite so much abortive medication.  www.eneura.com/tms.html

GammaCore

A device that delivers electrical stimulation to the vagus nerve in the neck - to abort or prevent a headache.  Available in Canada but not in the US even though this multinational company is headquartered in the US and FDA drug trials have taken place here.  It's a pricey little devil at approximately $ 475.00 (Canadian) for a limited number of doses.  Then you have to send it in for a recharge of the device, which no doubt will be accompanied by a monetary recharge as well.  There is no information on when this baby will be available in the U.S.     
http://seakaproducts.ca/product/gammacore-150-doses-cw-gel/

GammaCore

Migraine vaccine, CGRP Antagonists

This pharmaceutical is not really a vaccine but acts kind of like one.  There is a lot of excitement about the drug in medical circles.  For me, it's hard to get excited about a "solution" that is still undergoing FDA trials and is, at the very least, 3 years from market.  On the other hand, my son is holding onto the possibility that this new approach will solve his migraine problems.  Truthfully, at age 69, I just don't have that many years left, while he does.  Aging changes your perspective and the quality of your hope.

When it becomes available, either monthly or every 3 months or so your doctor will inject humanized antibody CGRP to prevent headaches.  So far, research looks promising, but it's a long wait if you're having near daily headaches.  There are FDA drug trials I'm looking into, but chances are that I won't meet the requirements.  For the most part, those over 65 don't qualify for a drug trials.
http://www.pacificrimheadache.com/news/2015/05/news-from-the-international-headache-congress/

Cefaly


The Cefaly is a (tens) transcutaneous electrical stimulation mini machine that targets the trigeminal nerve.  I bought my Cefaly in Canada where it is approved as both a preventative and abortive device.  Settings may be different for one prescribed and purchased in the U.S.
One push on the button of my Cephaly activates a 20 minute session that is designed to abort a migraine.  Push the button twice for a preventative session, three times for a relaxation session.  This device worked for me for a while, and then it was no longer effective as an abortive.  I gave it to my son who thinks it is helping to reduce intensity and frequency of his headaches.  Purchase price:  $349.00.  http://www.cefaly.us/en

Emsam transdermal patch

This medication is an MAO inhibitor, a drug for depression that has a long record of successful (for some) off-label use to prevent migraine.  It comes in pill form with an extensive list of dietary restrictions that are necessary to prevent serious drug/ food interactions.  The new patch doesn't have these restrictions.  Available now.  Pricey at $1200.00 per month.  My insurance would pay half, so at 
$ 600.00 per month, I haven't leaped up to try this.  Neither have I crossed it off my list entirely.  When I told my family about the patch and the price, my sons offered to help with the payments.

Sphenocath 

This procedure involves threading a catheter (no needle) up your nose (waaaay up) to access a ganglion leading to the trigeminal nerve.  When on target, the doctor injects the anesthetic marcaine.  Repeat 2 or 3 times and you may get some lasting relief.  I tried this, and it made things worse giving me a nasty sinus-like headache which was minimally responsive to my usual abortive medication.  No repeats for me.

Medication

I am really at the end of the long list of medications that act to prevent migraines.  Due to age and genetics, I tend to have exaggerated side effects and poor response to many pharmaceuticals.

Alternative treatments

While I'm always open to new ideas, the most common so called alternative treatments have had no impact on the frequency and severity of my headaches.  These include massage, physical therapy, acupuncture and Chinese medicine, chiropractic and naturopathic treatment, biofeedback, cognitive behavioral therapy, herbs and supplements, essential oils and the migraine diet.  Massage feels good;  acupuncture helped with carpal tunnel and digestive issues; biofeedback has helped with relaxation and gut problems; physical therapy exercises are healing long-term achilles tendonitis and yoga helps me to feel better overall.  None has touched the headaches.  I continue to see a mental health counselor to help me cope with chronic pain and stay open and curious about new ideas and approaches.

Last spring I began meditating, which does seem to reduce the severity of pain on some days.  This little chink in the brick wall of head pain is significant, so I continue to explore this path.  In the 1970's Jon Kabat-Zinn, a Buddhist monk working with others at the University of Massachusetts Medical Center, developed  an 8-week course for those with chronic pain.  Since then it has morphed from one class to a mindfulness movement.  Last summer I took the class, Mindfulness-based Stress Reduction, which borrows from the traditions and practices of Buddhism, yoga and progressive relaxation using meditation, breathing, movement and stretching.  http://www.umassmed.edu/cfm/stress-reduction/history-of-mbsr/





Monday, August 3, 2015

Bother me!

Drop-ins welcome

The problem

Not showing up

There are 14 million of us living with daily headache.  Chronic migraine means we are often unavailable for the activities and people we love.  We may not show up or we may have to leave early because of pain, nausea, severe fatigue and a host of other symptoms.  We're not dependable companions.  But everyday and every person is different.  Personally, I have spaces in my days and weeks when I'm more or less ok, maybe not great but functional to a degree.

Still, not showing up is a problem.  You begin to lose connection, feel out of touch.  Pretty soon friends and even family make the assumption that you probably can't do x or come to y or maybe you won't want to.  They begin to be afraid that they might bother you if they call or just show up at your door.  They may make the assumption that you'll call when you're up to doing something, and until then, unsolicited calls or contacts will be intrusive.


Fear and loathing

Most of us are afraid of serious illness.  No one wants to believe he or she might be afflicted with pain and suffering, and being around people who are sick may tap into profound fears.  It's icky, too much of a reminder that you too might succumb.  It may be hard for others to know what to do or say to someone who is pain.


Busy

Then there's the busy factor.  We're a busy culture with the constants of work, family and just keeping up with the demands of the lives we've chosen.  We all live with schedules and calendars, but perforce, those of us with severe headaches march to a different rhythm than others.  It puts us at odds with the prevailing pace.  I function best when I can do what my body feels like at any given time or day, but that often, means I do it alone because everyone else is already committed.  It's complicated and difficult, this dance with our bodies and life around us.  

Home alone - isolation

Most of us spend way more time around the house than we'd like - recuperating from the last headache or working up to the next one.  But, personally, unless I'm in the thick of it, I like to see people.  Sometimes if I plan ahead to do things, I'm able to juggle my pain and other meds so I actually can show up.  I have a friend, Ernie, who lives in the neighborhood.  He calls or texts 3 or 4 times a week and often drops by for coffee in the morning to consult my husband about projects, talk about his art work or just chat.  He doesn't stay long.  He's a busy guy.  But I love it when he appears at my door.  Sometimes it makes my morning and usually, often, I can join in.


A solution

Finding community

So what is the solution to the isolation that comes with chronic headache?  Different for everybody, but here's how I work to stay in touch.
  • Bother me!  This is an invitation.
  • I continue to make plans to get together for social, recreational and educational activities.  If necessary I remind my companions that I'll call if I can't make it.  Most people who know me well are already aware, but it doesn't hurt to put it out there sometimes to keep communication clear and open.  
  • If I haven't heard from someone in a while, I remind myself to pick up the phone and call instead of waiting and feeling like I've been neglected or forgotten.
  • I have some weekly and monthly commitments that involve small groups of people including taking a yoga class, participating in a couple of art groups, and going to a church service.  Yoga is a long term practice for me, and I'm lucky that my teacher is also my friend.  My husband and I belong to a group of four couples who share yard and house maintenance and a communal meal once a month.  Sometimes the best I can do is pull weeds on my hands and knees or show up for lunch, but it's almost always a pleasure.  We try to babysit for our grandson weekly.  There's nothing like hanging out with a 4-year-old to keep you on your toes and recapture the magic in life. 
  • It's summer now, and I try to swim in the chilly waters of the bay 2 or 3 times a week with a couple of friends.  They call or if not, I pick up the phone or shoot off an email or text.
  • While I haven't had much energy lately for hosting dinner guests, once a week we call and invite friends to meet us at a local restaurant or come over for dessert.
  • This sounds contrary, but it helps me to remember that I actually like and do better with a fair amount of alone time.
  • Although I don't always succeed, I try not to compare my life to others. My highly energetic, social butterfly of a brother-in-law arrived yesterday from 4 years in Paris.  Full of stories and plans for future activities now that he's back here, Doug is a reminder of how circumscribed my life sometimes feels.  But these kinds of comparisons are a trap, and on my good days I sit back and enjoy whatever high points the day has to offer.  Today is a beautiful warm, sunny day.  It's feeling good right now to sit at the window and write as I look out at the cedar trees swaying in the breeze, hear the bird sounds of the jays and chickadees and smell the chicken turning into soup in a big pot on the stove. 




Monday, May 4, 2015

When things aren't going well

Coping level
Hard days night

The last few months have been ugly.  Headaches have been daily, and I'm not sleeping well either.  Pain and anxiety have invaded my dreams.  When I stagger out of bed in the morning, I'm often in the worst shape of the day.  Things tends to slowly improve as the day wears on.  Then they start to deteriorate in the evening with fatigue and onset of dull pain in my head or muscle spasms in my upper back.  I know this is not just my story.  Many with chronic headache could tell their own versions of the same tale.

So what do you do when things aren't going well, when you're scraping the bottom of the barrel and it seems there's nothing to be found there?


Exploring meditation

Serendipity.  I ran into an old friend the other day, a fellow migraineur.  We met for coffee, checked in with each other on how we were doing and one of the subjects that came up was meditation.  Nancy has started meditating and after sticking with it for a few months, found it to be very helpful.  This little piece of information got to me at the right time, and I have begun to explore.  A large body of research over the years supports meditation as a powerful tool for pain relief.      http://www.mhni.com/headache-pain-faq/content-disclaimer/non-drug-treatment-alternatives/meditation

Having experience with yoga, biofeedback and progressive muscular relaxation, I know that breath work is a powerful tool for well being.  But of course mindfulness meditation is a whole other level as well as a spiritual path not yet traveled for me.  It's a commitment I haven't yet made, but I'm moving in that direction.  I've begun to set aside 20 min. in the morning to meditate.  I've attended an evening session at a local meditation center and found a tutor to support my beginning to practice.  One of the difficulties for me has been that most of the action, the group sits and beginner classes are either quite early in the morning or in the evening after working hours.  These are my hardest times, so I've had to work to find some support during the middle of the day.

Help at hand
It feels hopeful that there is a possible path forward that doesn't include more medication since I'm becoming increasingly intolerant of each "new" drug that I try.


Art

For me, artistic expression is a way through the pain.  I have been a weaver for a long time, but lately I haven't been able or called to my loom.  Instead, I've been working with oil pastels.  My energy level is low, fatigue high, but somehow, what I call coloring is working for me.  Drawings and sometimes collages  reflect my mood, my dreams, my memories and more.  I have no formal art training, but it doesn't matter.  It just feels good and I lose myself in the work.

A book for us all - "How to be Sick" by Toni Bernhard  

There are many helpful guides out there that give headache-specific advice on how to recognize triggers, that provide lists of all kinds:  medications available to prevent, abort or rescue you from migraine pain, lists of foods to avoid, techniques and equipment to help minimize the pain.  Books by physicians in headache medicine inform their readers about the mechanism of a migraine, how to "conquer" headache, how to recognize and avoid rebound and much more.

But what if you have followed all the guides, have the best headache care available and you still have chronic daily headache?  "How to be Sick: a Buddhist-inspired guide for the chronically ill and their caregivers" is a whole different approach.  Rather than tell you how you might avoid or get rid of the disease, this book gives you skills to live with what you are experiencing right now.  It is the most helpful book I've read in a long time.

Before she got sick, author Toni Bernhard was about to begin her twentieth year as a law professor at the University of California at Davis.  Now she suffers from chronic fatigue syndrome, a post viral disease that causes severe, debilitating pain and fatigue.  On a European vacation trip, Bernhard contracted a viral infection from which she has never recovered.  No longer able to practice her profession, she began to apply her long-term spiritual practice of Buddhism to help herself live a full life in the midst of daily pain.  Like many of us, she continues to work with her doctors to search for effective treatment.

Nest

Gifts to nurture

I belong to a small group of women who meet once a week to do art.  None of us have much experience, but we're all drawn to explore.  And we have a great leader who is not only a fine artist but also has a background in art therapy.  Recently one of her prompts suggested we make an artwork that reflects a gift or strength that needs the most nurturing right now.  Initially I was stumped, but as the day wore on, I began to make a little list:  writing, laughter, seeing (often with my camera), connection with nature.  
 I have no idea what form the art will take, but just making the list has been helpful.  I've been hard-pressed to do any writing because I just haven't been able to figure out what I have to offer right now, but Julia's prompt lead me to make this attempt.

Friday, January 23, 2015

Butterfly season

Monarchs


I am with 2 friends in Santa Cruz, California.  A mini vacation for a week in the guise of house sitting for my son.

Monarch butterflies overwinter in Santa Cruz starting in late October or November.  In the spring they begin their astonishing, long migration to the Rocky mountains.  Four generations live and die to complete this round-trip journey.  Here in Santa Cruz they gather in fluttery clusters, flitting through the eucalyptus forest in Natural Bridges State Beach.  It is otherworldly, the ambiant light filtering through the tall, graceful trees with their long, slender, leaves.

In my search for metaphors for healing, witnessing this beautiful butterfly collective ranks high. Symbolically, the butterfly is all about metamorphosis, personal transformation, renewal and rebirth.  It is breathtaking and fills me with hope.

Alcatraz


The next day we drive 70 miles north along the coast, past truck farms and spectacular ocean vistas and then on into San Francisco.  We take a ferry to Alcatraz Is. to see @Large, an exhibit of work by famed Chinese artist Ai Weiwei.  http://www.for-site.org/project/ai-weiwei-alcatraz/
It is a tribute to freedom of expression, this monumental exhibit which sprawls in many parts throughout the prison.  It is about about journalists, poets, writers, whistle blowers, people from around the world who have been convicted, imprisoned, exiled for speaking out.  It is about many kinds of prisons and prisoners in a place, Alcatraz, that was the first and perhaps the most notorious maximum-security penitentiary in the U.S.  It is also about transformation of a place haunted by despair and captivity to one filled with recognition of sacrifices made and ultimately with beauty.  Go if you can.

Desaparecido (disappeared in Spanish)


A convict is a person who has been detained, disappeard and disconnected from life as we know it.  What constitutes freedom?  What role does communication play?  What can we do to ensure we will be heard?  What is our responsibility to ensure freedom for one another around the globe?  These are among the questions this exhibit raises.

After I leave Alcatraz and contemplate my experience there, I begin to think about my own experience with pain, how it has robbed me of a certain kind of freedom.  While I don't pretend to understand the degree of loss of personal freedom that prisoners on Alcatraz and elsewhere have endured, I do know that we who live with chronic pain been detained and often disconnected from the life we have led, would like to live.  Writing this story is a way for me and, by proxy others,  to be heard, a communication between me and my readers.

Right now my headaches are partially controlled by a combination of 5 powerful medications.  In one of the ugly ironies of medical managment of migraines, I am taking a drug that is actually working to decrease headache frequency and severity.  However, in the process of doing so, I'm experiencing intolerable side effects.  Thus I have to go off this medication.  But not until I get home from this California trip.

While I've enjoyed myself, going out for lunch, making a fire in the back yard and cooking hot dogs while gabbing with friends, going to a fantastic exhibit, walking the beach, and seeing my son, it's hanging over my head, this thing with the drugs.  Whatever is ahead in my own story, I know I can still go to the place of butterflies, beaches and, strangely, to Alcatraz to experience a place of personal freedom.