Wednesday, May 29, 2013

State of headache care in America

Still Waiting


We are all still waiting for medical research to generate, if not a cure, at least improved prevention and treatment of serious headache disorders.  And waiting.  Below is a link to an important article that explains why headache care is a low priority and what needs to happen to end the waiting game.  It is so important, I wanted to repost it here.

Headache Testimony in Congress



The article below was published on the web site of Pacific Rim Headache Center where I receive excellant care by founder Mike Jones, MPAS-C.  It was originally a report of Congress in Feb., 2012.  If you want to know what's going on in the world of medicine and funding with regard to headache care, read this report.


Lagniappe:  The Impact of Heacache Disorders in America
by  Robert E. Shapiro, MD, PhD


Friday, May 24, 2013

On the Road Again ..... and slightly out of my mind



Today was a struggle.  You don’t realize how much you rely on the environment, the sort of external framework you’ve created to support you……….. until it’s not there. 

View from my balcony, early light

There are mornings when I awake with a headache, and it’s more or less clear what I need to do about it.  Then there are days when I get up to a state, not of pain, but of a strange sort of confusion.  I can’t remember where I’ve put things, whether I’ve taken my morning meds, what I was about to do, much less make a plan for the day or carry out the plan that’s already in place. 

Added to that, my stomach is usually just a little off, the muscles in my neck are bunched up and I have sort of an out of body feeling of all-over discomfort.  It’s as if I’m me but not me.  Nothing I do feels right, and no matter what, I cannot make myself comfortable

Usually when I’m at home, I come to realize I have a migraine with maybe just a little head pain.  I take my meds, retreat to my safe place, and wait it out.  Sometimes I can muddle through a day like this and get a few things done if no creativity is required and it’s not too demanding.

Keys and gate key in fruit bowl - in case I forget again
This was one of those days.  But I’m NOT home.  I’m in Mexico, by myself, having just arrived a day and a half before.  Traveling is always a little disorienting.  That’s usually fine, part of the fun even.  But today I couldn’t find ANYTHING.  Couldn’t remember where I put my meds, passport, tooth brush, room key, gate key.  I knew I was in really big trouble when I couldn’t find my dirty underwear stash and I began to think maybe someone had taken it.  That’s truly deranged!



Toothbrush and Meds

Now let it be said that I go to the same place in Mexico that I, we've been going for several years including the same hotel.  There are many reasons for this, but when you’re traveling alone and you are prone to the occasional fit of migraine hysteria, it’s not a bad thing to be in familiar surroundings where you trust the place and the people around you.





Abortive meds and, you guessed it, dirty clothes
stash.  "They" didn't steal it.  Who would?



Tonight I’m feeling better, and I did find all that stuff, by the way.  I’m actually quite comfortable coming to this little part of Mexico.  I speak Spanish and it gives me an opportunity to practice both listening and speaking.  I love to swim and listen to the surf day and night.  It’s worth it for me to travel in spite of the difficulties, but it sure is harder to have a neurological whirlwind going on in your brain when you’re displaced.  It makes me realize how much I depend on my home environment, including my husband and family, to help me live my life with migraine.



Friday, May 3, 2013

Chronic migraine brings big changes: how do we deal?

Changes

  1. Retired early.  I miss my students and the intellectual challenge.  I feel like I'm out of loop - in some sort of railway siding, waiting for the next step which is unknowable.
    a couple of my many, many students and me
  2. Fatigue and more fatigue
  3. Chronic pain and never knowing if you'll be able to follow through on plans
  4. Tachyphylaxis:  diminishing response to successive doses of one medication after another rendering them less and less effective over time.
  5. Too much emphasis on doctors and other professional helpers = an interruption to life.
  6. My beautiful son has inherited my migraine gene.

My approach


Retiring  

This is a tough one for me right now.  Although I'm 66 years old, I loved my part-time job teaching English as a second language to immigrants. I'm actually proud of the fact I made it this far in my headache-plagued life while continuing to work; however, I probably would have kept at it for even longer.  It just got too hard, and I began to doubt my competence and the toll pain and fatigue were taking on both me and my students.  I miss my students and the connection and energy they gave to my life.  So what now?  That's the big question.

First, I'm trying to give this a little time to develop "organically" instead of leaping right in to something to fill the void.  I am working to make new friends and contacts that allow me to be who I am and permit flexibility.  For right now, the answers are:

  • I'm volunteer tutoring English once or twice a week close to home. Eventually I will look into online teaching and more. 
  • Writing is an intellectual challenge but a very solitary one.  I'm looking for a writers group to add some face time to this as well as criticism, etc.
  • Art is certainly a challenge, but again, a solitary one.  I belong to a group of artists that meets once a month.  I'm looking to expand this kind of interchange.  I need those connections to keep me grounded and alive.
  • Travel. I need to work on this one.  I like being out and about and sometimes away.  I go to Mexico once or twice a year, California to see my son, but I need some jaunts closer to home to open myself up.  All this on a very limited budget.


  • Time with my 2.5 year-old grandson.  I'm really, really lucky that he lives in town and that we get to take care of him regularly.  This is fantastic even though exhausting at times.  

Fatigue

This problem has increased over time.  I try to pace myself, which is a tough one for me.  My tendency is to go until I'm felled.  This is not a good tactic since more fatigue = more headaches.  I try to set priorities, and when my energy begins to flag, I ask myself, "What would make you feel better?"  Sometimes it's a nap, sometimes lying down for a break, a snack, a cup of tea.  Very often it includes music.  In the winter, sitting in front of the woodstove with a book is a good tonic.

Chronic pain

This has also changed, increased in frequency over time.  And here is the change that didn't happen:  in my forties and fifties, I was told, "Hang on.  It will all get better after menopause."  Well, It didn't.  It got worse and worse still, not so much the level of pain, but the frequency.  Most days I have some level of headache and nausea.  The disabling impact on my life, and, I might mention, my husbands life as well, has just gotten incrementally worse over the years.

I use a limited amount of pain meds, and I choose to use them (if I need to) for feel-good events and important commitments.  For example, a week or 2 ago I planned to go to a movie I really wanted to see, with a friend.  I was feeling so so, and movies are often a trigger, so I took a pain pill so I could enjoy the evening.  By the way, it was a fantastic movie, "NO."  It's about the campaign leading up to the end of the Pinochet dictatorship in Chile in the 1980's.

Laughing gas
Don't add to your pain.
Going to the dentist is certainly not a feel-good activity, but I was beginning to dread it out of all proportion until I discovered I could request nitrous oxide, which makes the whole experience easier and less likely to trigger a migraine.

No self flagellation.
It is NOT helpful.  It makes the pain and anxiety worse not better, clouds your thinking and makes the pain episodes slower to resolve.  Note:  I don't always succeed in complying with this rule, but I'm getting better at it.

Acceptance of pain.  This is not easy, and I work on it all the time.  While I am continually seeking better treatment options, ways to make my quality of life better, etc., I also try not to fight it too much either.  Everyone has pain in their lives and this is one of mine. I live through the hard days as best as I can and then move on.

Tachyphylaxis

For me, this means medication to prevent my headaches tend to work for a while and then slowly but surely begin to fail to keep pain at bay.  This is frustrating and scary.  All I can say is that I just keep at it.  My headache specialist and I plan the next step together and while the frequency of headaches has increased relentlessly over time, the severity of pain has, overall, waned somewhat.  This may be due to age, or, I think, also reflects the partial efficacy of my preventative meds.

Too much time spent on visits to doctors, physical therapists, and other professional helpers

This can reduce your days to an unending round of appointments.  It is an interruption, and while a certain amount of this is necessary, it can detract from good things that matter in life.  
I try to limit my intervention efforts to one "new" thing at a time, no more than a couple of appointments a week.  Right now: 
  • I'm going to my regular headache doc as needed for medication management, etc.  This is a given and can't be avoided although it can be postponed sometimes when "better things" come up.  
  • I see a mental health therapist twice a month, which is another given. It helps keep me on a more even keel. I've been doing this for years, and it gives me someone besides my husband to rely on for support, for letting-it-all-hang-out bitching and moaning.    
  • I'm working with an anesthesiologist to try to address cervicogenic headaches. This could wait, but I'm trying to pursue all ideas that came from last years hospitalization at MHNI (Michigan Headpain and Neurological Institute).
  • I'm going to a physical therapist once a week, again in response to recommendations from MHNI, but also because I tripped and fell last summer, and it is an ongoing problem.  
I'm breaking my rule here.  I could wait on either the anesthesiologist or the PT, but rules are made to be broken - sometimes.  I try to schedule appointments toward the end of the day, so they don't interrupt whatever else might be going on.  This is a little trick I learned as a production weaver putting in the hours for the next upcoming craft show or trade fair.

My beautiful son shares my migraine gene

A few years ago, it began to be evident that my son had inherited the family disease along with color blindness as well as some really good traits.  When I realized he was having serious migraines that were becoming a recurrent problem, I was heartbroken and guilt stricken.  Then I began to understand -

  • The obvious.  This isn't my fault any more than my grandmother's fault or anyone else's.  It's the luck of the genetic draw, just like for all of us.
  • While he will continue to struggle, things have come a long way since I was first diagnosed.  There is way more information and treatment out there in terms of causes, triggers, medication and the whole 9 yards.  Thus he has more tools sooner than I did.  Life with migraine is never easy, but hopefully some things will be a little easier for him than for me.
  • I can help him, and I do.  I provide him with information from my own experience, although we each have to walk our own path.  He goes to my very competent headache specialist.  He can benefit from my successes and failures.
  • We help each other.  It goes both ways.  He is very observant, a good advocate on his own behalf, and very skilled at finding information and people he needs.  He's becoming a nurse so these skills will get better and better I'm sure.

Seeking ...... 

writers group, artists cooperative, English students, group to practice my Spanish language skills, ideas and people ..........