Nowhere in Sight

This week is testing me.

This is the 5th day in a row with major headache pain. I have headaches everyday, so maybe 5 days in a row doesn’t seem so bad, but for my purposes, major headache pain means that if I had to put the headache on a pain scale it would be at least a 7 out of 10. Monday I gave it a 9 out of 10 and that was only that low because I literally drugged myself to sleep before it could get any worse. And the temptation to repeat Monday night’s sleep coma has been high, but I’ve tried to avoid it because I know it’s not really all that great for my body. Not that pain is really much better.

I just don’t even really know what to do. I feel like I’ve exhausted all my options.

I don’t have a doctor to go to. I don’t have a primary care physician, just a student health center. My neurologist finished his residency and is doing a fellowship that keeps him out of the clinic. I haven’t yet been able to get an appointment with a new neurologist. So basically there’s no one I can call, no one I can go see for help.

Someone recommended I go to the ER last night, but my husband was the on call neurologist and somehow I didn’t figure he’d be thrilled to have to do a full exam on me, write up everything and deal with my paperwork. Nevermind the fact that I’m pretty sure there is nothing he can do anyways.

Because there’s never anything that can be done. In the ER they’ll check my vitals and find my pulse to be a little high, it always is when I’m in a lot of pain. They’ll offer me narcotics and when I decline (because they don’t help and they make me sick) one of two things will happen. I’ll be immediately discharged home or I’ll be given a CT scan, which will show nothing (but will toss some more radiation onto my lifetime pile of it) and then I’ll be discharged home. If I go to the doctor they’ll offer me narcotics and consider a new MRI.

The result is always the same: nothing. No relief. No improvement.

I’m just so damn tired of this. I’m clinging to the very last fibers of a very short rope and hanging over a vast expanse of unknown territory. I don’t think I can handle much more.

I’m fresh out of hope that something will change. I feel like there’s no doubt that I’ll wake up tomorrow with the same pounding headache. I feel like there’s no question that meds will continue to be worthless, that life will continue to be exquisitely painful. I feel like the idea of expecting anything different is silly, like I’m setting myself up for more misery, though I’m entirely unsure that there’s such a thing.

I’m scared that this headache jag won’t end. I’m scared that if it does, it’ll start back up again. I’m scared at how much this hurts and the other weird symptoms that have joined in the mix. I’m scared that I won’t be able to work if this becomes the norm. I’m scared of what this kind of pain means for every single part of my life.

I’m scared. I’m hurting. And I just want some relief.

7 Responses to “Nowhere in Sight”

  • I understand and am sadly well acquainted with the neighborhood you’re living in. Although I envy you knowing the beast that you’re up against while my diganosis (what I have of one) is always open to debate and dismissal. I recently found a book that has been incredibly helpful to me and I hope you’ll take a look at it, http://www.howtobesick.com/

    There is so much in our lives that is out of our control. I miss working more than anything. I envy your ability to continue your education, work through your clinicals and be a productive blogger. Lately my pain has been worse, the dizziness has been worse, seems like everything is worse. I guess what I’m saying is thank you for sharing, for letting me know that I’m not alone… I am scared with you and longing for answers and relief too.

    [Reply]

    Kathy Reply:

    @Eustice The Sheep, I endorse the endorsement of the book “How To Be Sick”. The author was a lawyer who got CFS during a trip to Paris. While her situation is much different than yours (she’s stuck in bed, but not much or any pain) what she writes is applicable to all of us with chronic illness. Finding a way to accept your pain and your situation is hard, hard work but it does help. Doesn’t stop the pain but it helps in coping with it. Although I think you do a damn good job of coping with it already.

    I also have a meditation mp3 that is along the same line. The brain is a very powerful tool even if it is the source of your pain :-P I’ll share with you if you’d be interested. I also have an extra copy of the book I’d be willing to give you.

    It is an awful scary feeling when nobody else can help you. Having some extra tools available might make it less scary and give you more control.

    I sure hope you can put a better medical team together soon. Maybe after Dr. Slappy or you are in a position to have better insurance?

    Hoping the best for you. Shoot me an email if you’re willing to give those tools a shot. I’d be more than happy to help.

    [Reply]

  • Katie, my heart hurts for you. I hope against all hope you DO wake up one morning to find the pain gone, never to return. I hope it so very much. Praying hard for you. Which, I don’t know if that means anything to you… but it does to me. So Imma gonna do it. :)

    [Reply]

  • mommabird2345:

    Oh Katie. There is nothing I can say that will take the pain away, but I’m so sorry you have to deal with this.

    [Reply]

  • MissMary:

    When I have a migraine that just won’t break, my docs give me a 5-10 day course of oral steroids to break the cycle. Good luck to you & feel better!

    [Reply]

  • Editdebs:

    I’m praying for you and sending good thoughts your way.

    [Reply]

  • I wish I could take away even a tenth of your pain. I’m sending all sorts of positive vibes and cat lady thoughts your way.

    [Reply]

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Welcome!
I'm Katie, a 30-year-old, wife, mom, former teacher-turned PT, who also had brain surgery in November of 2007. This blog chronicles my daily life, from mundane to crazy, often with far too much detail. Sit down, get comfortable and stay for a while.
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