Status quo continues unabated

The situation is pretty much unchanged. I am still in a lot of pain. Nothing to do but wait to go to Cleveland. The Topamax was clearly a complete failure and I’ve decided to quit taking it. The neurologist’s nurse, on the phone, said I could. She said I have to start thinking in the long term, about pain management and stuff. I think this means I will have to add the neurologist to the growing list of doctors who have no idea what’s wrong with me. At this point I no longer care myself. I just have to find a way to either end it, or live with it, or some combination thereof.

I really am trying to keep my head above water re: Charley stuff. NamUs seems to be kicking my butt in that regard, but whatever. Charley is both labor and labor of love to me. An obligation, a responsibility, but also something that makes me feel happy and fulfilled.

It’s Tuesday. I will update. I try to update on Tuesdays because that’s the day when I’m supposed to change my featured missing person of the week.

If you have ever wondered why Tuesday is the day when I change my MP of the week, it’s because the site debuted on a Tuesday.

3 thoughts on “Status quo continues unabated

  1. Hills March 1, 2011 / 11:58 pm

    How do you decide who is going to be your featured missing person of the week?

    I hope you feel better soon. Hopefully CC is able to help you. I know how bad it is for me when I have a migraine, I can’t imagine what you’re going through.

    • Meaghan March 2, 2011 / 8:59 am

      My MP of the week is usually a pretty random choice. Just go looking through the lists and pick someone.

      I appreciate the good wishes. Believe me, I’m counting the days till CC. Not that they can offer instant relief, but still.

  2. edi/ilovetrash March 2, 2011 / 4:53 pm

    hi there.

    i keep checking yr blog to see if you have had any relief from head pain. i remember having been in a nearly identical situation {twice, lucky me} & i feel serious empathy & pity–not, of course, in a bad way. i get it. i wish i could do something to help.

    i remember that you dont have facial pain, but since the head pain is SO severe, you might still try these people, who know from SEVERE severe head pain:

    http://www.fpa-support.org/

    they are the major online support group for trigeminal neuralgia {aka “the suicide headache”–it earns its name} & i am certain they have heard it ALL. they have a list of professionals who specialize in face pain:

    http://www.fpa-support.org/healthcare-providers/

    who may know more than elsewise primarily engaged neurologists. about five years ago, i was incorrectly diagnosed w/ this condition {i had, instead & obviously, its differential, post-herpetic neuralgia [an occasional succeder to shingles] & when i was eleven years old i had an allergy to tetracycline which resulted in pseudotumor cerebri {i was so lucky & it was, @ the time, so unknown that a paper was written about my case}. i =only= mention this to let you know that it is not uncommon to have head pain that is TERRIBLY difficult to diagnose, that you are NOT alone in this trouble & that it is likely, if not absolute, that they will eventually figure out what’s wrong & fix it. it might take months–it did for me–but they SHOULD get there.

    as an aside, here’s something else they probably havent told you:
    if you are taking major opiates & you stop THE HEAD PAIN WILL GET WORSE, not forever, but in the immediate aftermath. i used to know what this was about–i think it has something to do w/ vasoconstriction/vasodilation–but it is definitely true. keep it in mind. & if they start pestering about drug abuse, you might let them know what you already must know–if yr head hurts enough, you couldnt feel high even if you wanted to. the painkilling components go straight to the pain. usually they just cut the top off of it–they dont kill it. i am sure you already know that. i wish you did not have to. i remember this quite well–& i wish i also had never had to know it.

    they must have already tried a combo of some opiate & MASSIVE doses of gabapentin? that =almost= worked for me when i was diagnosed w/ TN–MASSIVE doses of gabapentin/neurontin & vicodin–worked for four hours, so i could work for four hours. it was a nightmare. i dont wanna write about it any more. i dont wanna think about it. my case turned out to be dental swelling combined w/ post-shingles–it took months to get rid of it. so, again, i say: see yr dentist.

    but thats just me. i REALLY REALLY think if you get ahold of other people who have been through very severe head pain you will find more answers. @ least i hope so. try the TN people–that stuff is BAD. they know.

    now, here is another thing:

    i read yr blog & yr website also cos both are so well, in fact, =unusually= well written. i was interested in carlina white’s case but i was transfixed by yr blog cos, in this postpostmodern world, i have become terribly unused to good writing. i note you are interested in holocaust literature. here is the greatest poem of the holocaust, written by it’s greatest poet, paul celan {né antschel}:

    http://poemsintranslation.blogspot.com/2010/01/paul-celan-death-fugue-from-german.html

    {there are a lot of translations out there, this one is better than many. you can find another if you like it. all of paul celan’s work is amazing.

    as an aside, i apologize for writing so much & so poorly myself–i am really worn out. i wish i could have come up w/ some better suggestions for you. i remember very well how bad my head hurt. i will not forget it. i hope you get better soon.}

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