Hitting the Wall and Cake

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I saw my neurologist yesterday at the UCLA clinic. I told her what I always do, that my headaches haven’t changed in frequency. I had hoped she would be able to put me in a research study, like one involving transcranial magnetic stimulation that we had previously discussed. To my dismay, she said that there wasn’t enough funding for the study so it isn’t happening this year.

“Is there any other type of study that I could be involved in?” I asked hopefully. She shook her head with real remorse in her eyes, which I don’t get often from doctors, especially neurologists. No, sorry. There was one, but I didn’t qualify- my migraines are too frequent. They want to experiment on an easier case. She has me on her list and will contact me if anything else comes up.

We both agreed that I have tried nearly all the preventative drugs so there wasn’t much point in going that direction. I’m tired of feeling the side effects without any actual benefit. She thinks that the surgeries aren’t likely to help and are too dangerous anyway. She suggested that I consult another specialist since we seem to have hit a wall in my treatment. “A fresh pair of eyes might be useful,” she suggests. My heart breaks a little but I appreciate her honesty.

I don’t know what to do now. It’s weird not having another new thing to try on the horizon. On top of this, last week I saw the film Cake. It is about a middle-aged woman with chronic debilitating pain. It made me FEEL so much, which has been pretty uncomfortable for me ever since I ran out of that theater when the credits rolled to go cry in the bathroom. The main character Claire, played expertly by Jennifer Aniston, is living a lonely life that I have always hoped to avoid, one in which she has let her anger and grief push everyone away that cares about her. She unabashedly abuses painkillers, washing them down with bottles of white wine. I never want to become that person. My biggest fear is that another decade of chronic pain will turn me into her, this flat, hopeless person that no one wants to be around.

Our situations are very different though. Not to spoil too much, but she has a major accident to blame for her pain with the scars to prove it. She had this terrible event happen to her, with a very specific thing to blame for it. I have no such thing, which I am thankful for, yet I can’t help but wonder if having this THING to blame would make the pain a little bit easier to bear or explain. I can’t point to an MRI and say, “Right here, this is why my head always hurts.” I can’t prove it. This thing that takes over my life and makes everything so much more difficult and taxing than it is for most people – I can’t explain it.

“What if I am just fucking crazy?” I ask my therapist, throwing my hands up in frustration.
She smiles gently at me. “Real crazy people don’t question their sanity.”

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I tried a new thing… Lidocaine Injections

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I’m seeing a new neurologist at UCLA who is a pain specialist. Seemed like the way to go. It was much more painful then the Botox or nerve block treatments! My pain threshold is pretty high by now but this was making cry and nearly pass out. Injections of lidocaine went deep into the muscles of my jaw, neck, and shoulders.  I was sore for a couple days.

It didn’t help. I feel the same. I didn’t really think it would do anything, but I was hopeful for a minute.

In other more embarrassing news, I applied to a nice new low – income housing building (again) and was denied. Before, I lost out on the lottery drawings. This time they rejected me because…..

my income isn’t high enough.

Can someone explain this to me? Not making enough for low-income housing? My SS disability payments could cover the monthly rent.

Anyway, I called and appealed for funsies. I hate being poor. I try to do whatever graphic design/ babysitting/ petsitting work that I can but I’m quite limited by the constant migraines.

help me i'm poor

Aside

I’m still here

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I haven’t posted in MONTHS and I am trying to figure out why besides general laziness.  I think I just haven’t wanted to think or talk about headaches because maybe on some level I thought that if I paid no attention to the damn things they would go away.  HA!  Hahahaha!  They haven’t changed.  I haven’t been to any doctors about the chronic migraines either, since the failed SPG Blocks.  (The exception of course is that I still regularly see my therapist and there is a lot of talking about the problem there.)  It’s been nice having a break from neurologists and procedures but I am trying to get back out there and try more (possibly useless) shit.  Planning to see a different neuro and learn about the TENS devices that I know nothing about.  Like the newly FDA approved Cefaly electronic headband, which sounds musch less frightening than the similar devices that are implanted into the skin.  There ought to be a way to try out one of these things without spending $300 on something that might not work for me.  If anyone has any info on that, I would love to have it.

now what?

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migmeme

Needless to say, the SPG Block thing didn’t yield any results. I would have been shouting from the internet rooftops if it had worked. No new treatments are on the horizon, which I have mixed feelings about. One one hand there will be fewer doctor’s visits. I like that idea.  No getting my hopes up about the new thing that has a chance in hell of helping. But what then do I do now?  Do I always HAVE to be actively searching for the next treatment?  Can I sit still for a moment and practice acceptance?

I’m reading How To Be Sick by Toni Bernhard.  She makes some excellent points on approaching chronic illness (and life in general) with a Buddhist perspective.  She writes,

“Each morning you expect to wake up not feeling sick even though for weeks- and then  months- and then years- that has never been the case.  It’s just so hard to, first, truly recognize that you’re chronically ill, and second, to accept that this illness is going to require you to change your plans for life in ways you never imagined…”

I wake up every morning expecting to feel better and it never actually happens.  Am I insane or optimistic? Some days are better than others, and I do as much as I can on those days.  I constantly am trying to come to terms with where I am now, verses where I thought I would be.   The idea is to treat the world, especially yourself and your situation with loving kindness, without blame or judgement.    Toni writes,

“I’d been getting despondent when a treatment didn’t work and becoming angry when a doctor didn’t live up to my expectations.  I was trying to control the uncontrollable.  Some treatments work.  Some don’t.  Some doctors come through for us.  Some don’t.”  I really tried to keep this attitude for the SPG Blocks, but I know there is a lot of anger and frustration still in me.

up my nose with a rubber hose part 2

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The SPG Block I had wasn’t nearly as bad as I had anticipated.  I am reminded of a quote of a quote of a quote I first heard in Mad Men:  “Our worst fears lie in anticipation.”  Salvatore Romano delivers the line and credits Balzac for the quote.  Later Don Draper uses the line.  The actual quote is “Our worst misfortunes never happen, and most miseries lie in anticipation.” I try to remember to tell myself this when I am having anticipatory anxiety, which is more often than I care to admit.

The rep that assisted my doctor was overly enthusiastic about her product (the special catheter device designed for this procedure).  I am sure she meant well but I found her unrelenting peppiness to be exhausting.  I always found cheerleaders to be tedious.  She said something about this being potentially life-changing and “guranteed” that it would help.  My Mom was in the room with us and I could feel her growing enthusiasm.  It made me wary.  I said, “Let’s not get too excited just yet.”  I have had chronic migraines for ten years now and everyone thinks that their idea is the one that will undoubtedly work.  Nothing has worked thus far, so I don’t think the chances seem good.  I have some hope still, but let’s be realistic about it.

When it was time I lay uncomfortably on the examining table with my neck on a hard and pointy pillow.  First the Lidocaine was dabbed in each nostril.  Then up went the catheter.  I closed my eyes, exhaled and tried to relax and hold still while the doctor went up and around to the ganglion nerve.  More lidocaine.  It drips down the back of my throat.  Repeat with the other nostril and we are done.

I haven’t seen a change in my headaches.  The doctor and the rep want to give it another go, just to make sure they hit the nerves.  I am bummed that I have to do it again, but might as well if they think it is worth it.  Now that it didn’t work the first time I am even less hopeful that it will make a difference the second time.  I have to admit it can be disappointing each time I try a new remedy.  Part of me feels excited and optimistic about the possibility of a more normal life.  Ten years gone and I’m still waiting for that to happen.

up my nose with a rubber hose

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I am having a procedure done tomorrow called a sphenopalatine ganglion block, aka SPG block.  It involves a cathether going up my nose and squirting Lidocaine (an anesthetic) into the largest nerve collection in the head.  It is supposed to numb these nerves that make me feel the pain.  So that’s a new one to try that probably won’t help… But I have to try, right?

I have to be awake for it.  Just thinking about being nasally violated makes me very nervous and uncomfortable.  Take my blood, shoot Botox all up in my face and neck, I don’t care.  I’ve never been really apprehensive about a new procedure until now.  Something about this terrifies me.  Maybe I’m feeling vulnerable lately.  Perhaps it reminds me of a lobotomy, even though I know no one is going to poke me in the brain.

I called my neurologist to tell him that I am scared of this thing.  I got a prescription for 5mg of Valium to take before they go in.  I called back to say that I am still quite nervous and that 5mg isn’t very reassuring.  I didn’t want to call back at first, for fear of sounding like a crazy drug seeker.  Then I thought, fuck it, I’m just being honest and they should know me well enough now to know that I am not all that into prescription drugs.  My tolerance is higher than most people.

I can’t seem to focus on anything today.  I have no appetite and I feel restless, cold and sad.  I’m usually tougher than this, aren’t I?

exercise with Migraine

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My sports bra is on, contacts are in, teeth brushed, hair pulled back.  Now I just need to get outside and engage in some form of exercise but The Migraine is stopping me.  If The Headache were a person, he would be a needy, demanding, selfish sonofabitch that I would dump immediately.  I woke up with the pain spiraling out from my left eye like that graphic for hurricanes on the news that look like a ninja star.

I want to hop on my bike and ride down to the beach.  Or find myself on a peaceful nature hike in the Santa Monica Mountains with those peanut butter pretzel snacks from Trader Joe’s.    Beautiful Southern California in the Summertime is calling me, Hey let’s get the fuck out of the house and move around, you’ve been eating cookies and mini pizzas for two days.  You have been Vitamin D deficient in the past for being such a vampire.  Let’s gooooooo!

Last week I rode my cruiser to the beach and back.  I live maybe 3 miles from the coast, so it didn’t seem like a lofty goal.  There was nervous energy pent up inside me that needed to be released, despite having a moderate headache that day.  I just HAD to get out.  Sunscreen and hat on, bottle of water strapped in, I made my way to the bike path and pedaled west into the cool marine layer.  This is a good sign, I thought, less direct sunlight and heat.  Suck it, Migraine.

When I got to the beach I admitted to myself that the Headache was now exponentially worse.  The entire left side of my head (including my jaw and face) throbbed with pain.  I sat on a bridge for a few minutes and pretended to enjoy myself out in the fresh salty air, taking in the scenery and snapping a couple of photos.  It feels forced and I am wishing to be safely back in my bed in the dark.   I pedal home slowly, feeling defeated.  My feelings are mixed in between Good for you, you got out there and tried and What did you expect, stupid?

Another day, another migraine.  I notice myself slumping in my chair and rubbing my forehead.  The Headache is crushing me into a horizontal line.  Do I fight it?  Ignore the pain for as long as I can but risk passing out on my ride?  Surrender to it with a pillow over my face for the next few hours?  I decide to go for a swim, having the luxury of summertime in Los Angeles and a pool at my disposal.

It feels good to dunk my head into the water.  Instead of swimming laps, I tread water in the deep end.  Floating feels graceful and comforting.  I remind myself to breathe and relax my jaw muscles which I always seem to be clenching.  After I get out, I lay in a lounge chair with my head in the shade and the rest of me in the sun.  I still have the Headache but my gentle swim did not anger it.  I always knew summer was my favorite season here.