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.

Thursday, April 24, 2014

Dark days and Dog Beach


Winter


I now have chronic daily migraines.  Actually I have had for some time, but now- no time off.  I'm up against it big time, and I'm barely treading water.  I've tried all the usual preventative medications and then some.  A few worked for a time and then I developed a tolerance with decreasing effectiveness - and ultimately a switch to yet another potent drug.  My body is changing with age.  Especially in the last couple of years, I have become increasingly intolerant of these medications.  The side effects are no longer just a nuisance.  They are scary, painful, and basically counterproductive.  These drugs are dragging me down.

What now?


What's next, very soon, is an appointment at Mayo Clinic in Scottsdale, Arizona.  While I'm trying to let go of any expectations, my purpose is to determine if I'm a candidate for an occipital nerve stimulator.  Once I made the decision to pursue this avenue via Mayo, things lightened up a little for me.

Dog Beach


Life went on and a few things happened.  My sister came to town, and we began to communicate a little.  I found a massage therapist who is a "healer" in addition to her other skills.  

We went to Santa Cruz to visit my son. I put in daily beach time, and I felt better for it. Santa Cruz is eminently bike-able, so I rode my bike a short way to the beach. Lying on the sand in the sun, listening to the sounds of surf, kids, families, dogs playing on this off-leash beach was pure bliss.

Once back home, the weather began to warm up and dry out a little.  I got out more including frequent jaunts down to the water.  I eased back on the medication that was giving me fits in terms of the worst side effects.  I amped up my yoga practice.  I began to feel my body respond during or after each of these ministrations.  It's as if I have just a little more breathing room than I did before, short-term periods of relief and true relaxation, a few more hours here and there between headaches. 

My plans to go to Mayo Clinic fell into place more easily than I expected.  The appointment date wasn't that far in the future.  A credit with Alaska Airlines covered both my husband's and my airfare.  An old friend offered us his time share condo in Phoenix.

I am trying to trust that, whatever happens, these are good omens that I will be taken of in a larger sense.  It's hard for me to let go like this, but it also feels right and perhaps true.

Note

In my last post I mentioned going to the Washington Center for Pain Management for the occipital nerve stimulator.  This turned out to be a difficult experience, and I would not recommend this center.  If you would like more information, reply to this post.

Thursday, March 6, 2014

Staying Afloat

When times get really rough


November, December and January were very hard for me.  I had kind of a failed trip to Mexico where I usually float high on the warm waters of the Pacific.  But I couldn't hack the heat, my headaches got worse, the hotel messed up my reservation and kept moving me around from room to room.  There were a lot of noisy parties during a usually quiet time of year.  I finally gave up and came home early.
defeat

My headache doc is a prince of a guy, but he inadvertently gave me the message that there wasn't anything more he could do for me.  He also suggested it might not be helpful to go back to Michigan again, (the Michigan Head Pain and Neurological Institute).  I was working with an anesthesiologist, who had no more tricks in his bag.  He also gave me to understand that since the occipital nerve injections hadn't helped, I was not a candidate for an occipital nerve stimulator.

In short, I felt like I had been written off.  I was sinking.  My concentration was shot.  I couldn't really think straight.  I had no plan for what to do next and no energy to figure it out.  I knew I was on the edge of depression.  I was at a low ebb, living from pill to pill, injection to injection with headaches in between.

Possibilities


In January, at a follow-up visit to Pacific Rim Headache Center, my doc suggested it was time to take a serious look at an occipital nerve stimulator, disabusing me of the notion that I wasn't a candidate.  Failure to benefit from occipital nerve injections do not rule out an occipital nerve stimulator.  He gave me contact info. on a couple of respected centers that were doing the procedure, the Migraine Treatment Centers of America and the Washington Center for Pain Management.  I went home and went to work. 

My first attempt to get the ball rolling was disheartening.  Online, I sent for a packet of information on the Omega Procedure from the Migraine Treatment Centers of America.  I got a cheery phone call offering all kinds of information, then a packet of glossy brochures in the mail, then another phone call.  Everyone was very eager to help.  Finally, I called to make an appointment.  Upon learning I have Medicare (plus a secondary), the Migraine Treatment Center(s) of American was immediately uninterested in my business.  Secondary insurance or no, they serve no one on Medicare - period.  They also told me Medicare considers occipital nerve stimulators - for headache - an "investigative" procedure, not covered.  I was angry and frustrated and felt like I'd been gut punched again.


buoyant

Sea Change


With little optimism, I called the Washington Center for Pain Management, which does the Reed Procedure.  (The Omega Procedure and the Reed Procedure are different names for essentially the same procedure.)  They were encouraging.  In February, I made an appointment.  My husband and I went to see Dr. M in Everett, which is pretty close to home.  We both liked him.  He answered all my questions and outlined the series of steps I would need to go through as well as addressing the issue of insurance coverage and cost, which most doctors, hospitals and clinics are reluctant to discuss in any detail.

After leaving, on the drive home, I realized I felt better than I had in months.  I became more buoyant. My mood lifted.  My sort of mental vision snapped back into place.  I was thinking with a sense of clarity that had been missing for weeks.

Who knows where this will all lead me, whether the occipital nerve stimulator with work for me.  But the point is that I now see possibilities when none seemed to exist for me previously.


Hope renewed


In the water, I am naturally buoyant; yet I had been sinking.  Staying afloat requires hope.  
Now, I hope the new procedure works.  
I hope for lots of swimming come spring and summer. 
I hope for a fall trip to somewhere warm with a great swimming hole.
Any ideas?









Thursday, February 6, 2014

Loving myself……...


the Most difficult kind of love


The hardest love to give - and receive is self love.  In spite of my best intentions, I am always looking for something I have done to aggravate or cause my own pain.  It is the ultimate trap to suppose the fault for chronic migraine lies within me.  I know this.  Yet, especially when I have had a hard week, month, year, I look for ways I have inflicted this misery upon myself.

New years resolution


This year my list of new year's resolutions is short:
1.  Be kinder to myself
That's it.
Somehow, these annual, seasonal do-good or do-better intentions tend to become the critical monkey on our backs that is always telling us we haven't quite measured up.  Thus, I'm attempting to turn that around.  I'm doing great considering the hand I've been dealt.  My job is to keep reminding myself of that fact and love myself "as is."  I come with flaws as do we all.  But sometimes "as is" means it's the best deal going, something that is essentially intact and lovable with some little unimportant imperfection.


Things I try to remember


1.  This is not your fault (just like it is not your granny's fault or your son's fault).
2.  You are actually a very strong person.
3.  Vulnerability is not weakness.
4.  You are lovable.
5.  Many people love you.
6.  Your friends and family understand more than you realize.
7.  You deserve to get better.
8.  You are not alone.

Valentines Day earrings from my husband




Free association on  LOVE


Love makes the world go round
Heart = love
Heart first
Heart of my hearts
Healing heart
Mi corazón
Mi amor
Love heals
My heart
Dear heart
Heart and soul
I have always loved the heart image 
I used to have a cake pan in the shape of a heart.  I made the kids' birthday cakes shaped like hearts
Love comes from the heart
Love lorn
Heart sore
What does love have to do with healing my head?
What does love have to do with hope?
If I am in danger of losing hope, does that mean I need to love myself more?
Is hope a function of love?









Friday, November 29, 2013

Parted out

Unholy or unwhole?


Have you ever felt like you're not all of a piece?  Like there is too much going on in your body?  Sometimes I can't seem to keep track of it all and, certainly no one else is helping me do it

Different Symptoms - different doctors


  • Headaches:  headache specialist, anesthesiologist, masseuse
  • "Routine care" (whatever that is):  primary care doc
  • Nutrition, diet and alternative treatment:  including prescription for medical cannabis - Naturopath, acupuncturist
  • Gut problems (mostly caused by medication prescribed by headache specialist):  naturopath, yoga teacher, primary care doc
  • Achilles tendonitis:  PT, osteopath, acupuncturist
  • Emotional status:  mental health care provider.
  • Coordination of recommendations of all the above:  You're on your own.  No one gets paid for this.

Reluctantly becoming your own care coordinator


Under the circumstances, I'm fortunate that I have primary and secondary insurance coverage for most of the above and that I have providers that I mostly like and respect.  However, it's a time consuming, exhausting, nitpicky battle to stay on top of extracting payment for services that are supposedly covered, to stay on top of multiple prescription medications, track your symptoms and possible drug reactions, all while trying to maintain some kind of a balanced life.  Just yesterday I found myself on the phone, alternately calling one infusion service, then the other.  I was essentially playing them off against each other to see which offered the best deal (coverage) in combination with the services I wanted.   

Conflicting recommendations from different providers require a high level of attentiveness and decision making that is basically a seat-of-the-pants proposition.  The only way to avoid this would be to get all providers together in a care conference, and what are the chances of that?

Solutions?

Of course one way to avoid a lot of the confusion is to accept the current level of pain as a permanent proposition and just quit trying to get better.  Not an option I choose.

Sometimes I do call a halt to a new approach, a recommendation or an idea - even my own.  I can only handle so much at any one time.  Anything else will have to wait or, even better, won't be necessary because everything I'm doing now will ultimately turn it around.  I will feel better, and I can let the rest go.

Generally, what I strive to do in my journey is just to stay open when problems arise and allow for the possibilities they may present.  In the meantime……..  I "Don't let yesterday use up too much of today."  Will Rogers.