Chronic migraine brings big changes: how do we deal?

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

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

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

• 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

• 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 ……