Remember Gremlins?

That adorable fuzzy Gizmo who popped out slimy green havoc wrecking monsters when someone broke the rules? Don’t feed them after midnight? Don’t get them wet?

I am pretty sure I have brain gremlins.

Brain gremlins also have rules.  Don’t drink red wine.  Don’t eat chocolate.  Don’t have refined sugars.  Don’t forget to drink enough water.  Don’t eat grains.  Don’t eat beans.  Don’t wear perfume.  Don’t go out in the sunshine.  Etc. Etc. Etc.

They also pop out slimy havoc wrecking monsters when those rules are broken.  Those monsters squeeze my skull, stab my nose, punch my neck, send rivers of fire through my eyes and in some instances attempt to cut me in half with a chain saw.

The problem is twofold:

1.  I don’t know all the rules, so I can’t actually stop from breaking them.  Also, some of the rules I have no control over, like don’t live anywhere weather happens.  (OK, moon here I come!)

2. There is no blender I can shove these gremlins into without also blending my face.  As much pain as I am currently in, I am pretty certain face blending would be worse.

Pretty certain.

Mostly pretty certain.

All my life I have been told my migraines would go away when I reached menopause.  Well, I have been in full menopause for a year and instead they have gotten progressively worse.  At my last appointment my doctor told me that something like ten percent of female lifelong migraine sufferers reach menopause and their headaches transition, change, get worse, and don’t go away.  He believes I may be part of the ten percent.

He explained that even if I am not, the treatments I am looking at now are the really scary ones.  Psychedelics.  Medications that cause memory loss.  Medications that cause personality changes.

I am terrified.

He made me promise to call if the final attempt at botox didn’t help.  It hasn’t.  I am waking up every morning in so much pain I throw up when I move.  So I called to see if he could think of another not terrifying treatment for brain gremlins. The next appointment I could get was in thirteen days.

The blender’s not looking so bad now is it?

I madly called around to other doctors to see if there was anyone I could switch to, any other headache clinic that could make me feel like there was still hope.   During my search I found comment after comment from people like me. People who have had migraines all their lives, have tried the abortives, the preventatives, the botox, the massage, the chiropractic, etc.   “No one can help me.”  “My doctor said I am out of treatment options.” “They told me I will just have to live like this.”

Oh shit.

Oh SHIT.

Have I finally arrived here?  I have had headaches since I was twelve.  That’s twenty six years of doctors, tests, and ineffective treatments.  Am I untreatable? Am I stuck like this forever?  Have I finally reached the end of what they can do for me?

This possibility freaked me out so much I went from pained and anxious to outright anxiety attack.  In a crying shaking fit I called my boyfriend and sobbed unintelligibly over the phone.  I am sure all he really heard for that first few minutes was something like “I am …gasp… brain… gasp sob… so scared… gremlins… sob… forever….”

Luckily for me he speaks crazy.  He calmed me down and agreed that yes I could be stuck like this forever and that if I am, than I am.  As he put it: “You are an amazing person who just doesn’t feel good a lot of the time.  You can still do amazing things.”

Okay.  He’s right.  This sucks.  I am at a point where I don’t actually believe there is any miracle cure left.  However, this doesn’t mean I lose.  It just means I have more to manage.  I have to be better at following the rules I do understand and I have to keep trying to discover the rules I don’t yet understand.  For those triggers outside my control, I will just have to be patient and kind with myself.  I will have to get better at asking others to be patient and kind with me.

I sent out a call to my facebook contacts and got all the best referrals for migraines.  I will do one last really big push to see if I can find someone who can find a treatment.  If that doesn’t work then I will have to deal with the very real possibility that I am part of that unfortunate ten percent and I will have to find some way of finding humor in it.

Hence the gremlins analogy.  I think I can work with that.