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.