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Saturday, November, 14, 2009
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keeping the faith while the beast trys to take over

rockin' girl

rockin' girl

Thursday, July 09, 2009
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Dear Patrice & all of us who are a part of this pain together,

 

Your words resonate so much w/me at this moment.  Thank you for expressing all that you did as for a moment it is reminding me as i sit slumped over in pain yet so desperately holding onto the power of hope, human connection and faith, I'm not alone.  And that may not take away my throbbing pain which has been non-stop for months, it does nourish me and us all, I suspect, on an emotional & spiritual level.  We're in this boat together.

 

May i ask if any of you have done the dhe iv 3 day hospitalization for chronic, intractable migraines?  my neuro is trying to admit, after having sent me to the er a couple of times, to attempt to get me addmmited & treat me this way, yet it has fell through.  and now we ironically found out our doc is 'out of network' which means huge costs would be incurred if i'm admitted (we're military).  we're meeting w/my primary doc tomorrow to try and receive authorization for the treatent and look at other options...i'm trying to hold out going to er again to just have pain masked & to yet again have to set up a comfortable place for our daughter so she doesn't have to go - thank goodness she has been so patient in all of this.  she's 10 and she gets what you conveyed Patrice, on some level...yesterday, in her loving, intuitive way she said:   "mom, you have a disease which hasn't been identified and I'm scared there's no solution".

 

i've had numerous scans, emg, evoked potential, doppler ultasound (where it indicated i had some narrowing of carotid artery, 40-60%; mild stenosis, yet my neuro doc says my mra said all checked out so he doesn't think we need to worry about that...i tried topomax 2xs yet couldn't take it long enough due to side effects and took cymbalta yet was on oxycodone and muscle relaxants at same time and had some weird effects so he said to stop cymbalta (note: my pain doc is prescribing the pain meds - have taken for 1 month, then ultram eq and now back to oxycodone - yet no relief).  i'm hesitant to do the dhe iv hospitalization and potential spinal tap as i've read about some troubling things re: taking it...one person ended up w/a stroke yet some have had their migraines stop.  my doc indicated i could get better and then have a rebound effect.  i'm at a point where i always have pain, never stops and do not sleep well, even w/ambien er...so i'm considering it. 

 

What are your thoughts?  any experience?  are you seeing a regular neuro doc.?  he hasn't had me try imitrex yet i've heard so much about it.

 

blessings to you all!

  praying and hoping for resolution for myself and for you all

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This animation shows one of the key causes of pain during a migraine--changes to the blood flow within the brain.

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