I am picking myself up off the floor and sharing my angst so
I can let it go.
I saw the neurologist today. He said because I reported fewer
than 3-5/week while on vacation in Colorado (very few barometric pressure
changes, less stress, and no humidity), I wouldn't meet the continuous 6 months
requirement for Medicare for trying Botox. I started with this doctor about 2
years ago because my neurologist of 25 years retired. I thought that maybe
someone younger would have something new to offer.
When I filled out ALL that initial paperwork, I told him my
migraines and facial pain and tics are 3-6/week. In all this time, all he has
done is start me on Xanaflex and slowly up the dose. I have told him repeatedly
that Xanaflex helps with the fibro pain and sleep but NOT the migraines. I was
on 32 mg/day until I started passing out. I not only passed out cold two times,
I had to be in a wheelchair for my mammogram because my B/P was 80/50. Per the
pharmacist and HIS nurse, I started titrating down. His only comment was that
on my last visit I was all smiles. REALLY?
Wouldn't we all smile if we have a day without pain? I live
with other pain every day, and I have found a way to smile my way through it,
even the migraines. After all, no one appreciates a downer, or so I thought. In
fact, in all my books, I suggest forcing a smile because research tells us that
natural endorphins are still released. Shouldn’t a NEUROlogist know this? Should
I be admonished for trying to cope in a positive way?
It makes me question, what is going into my medical record?
Will he note that I had on sunglasses today because of photosensitivity, or
that my medication only brought my migraine down to a 5? He should talk to my
husband because every day I have a migraine, I tell him or apologize for being
short, his response, “What’s new, you have a headache every day.”
To say I am frustrated in an understatement. I am on day 12
of 13 with either a migraine or facial pain so intense it is triggering one. My
nose runs only on the right side (and yes, my GP ruled out sinus involvement
over a year ago). If I refuse the steroids (to break the pain cycle) even
though I told him, I don't tolerate them well and they GIVE me a migraine. Or
the Depakote he now wants to add to the Xanaflex (even though I gave him a list
of all the things I have tried and I don't tolerate anti-seizure drugs because
they make me feel too disconnected), I will be labeled as non-compliant. I feel
like it has become a battle of the wills, and his will wins out. Despite my
reservations of following this regimen, I will try it. I am putty in his hands,
because I am desperate.
Why will he refuse to accept that I am NOT responding to
Xanaflex and overall my migraines are 3-5 times/week, so I can explore other
options? When I tried to show him my Migraine Tracker, he was not only disinterested;
he seemed put-off by it. He stated twice, just average it out. So why can’t he
AVERAGE IT OUT?
To all my fellow PAIN WARRIORS, do not think for one minute
that I do not understand what you go through. All I can say is, I am so sorry. I
have feelers out to find a neurologist that understands and treats chronic headache.
They are out there. I just haven’t found the right one yet.
Forlorn, confused and in tears, and needless to say, my
migraine has not improved either. Thank you for listening.
In healing and hope, Celeste
~ • ~ • ~ • ~ • ~ • ~
Update as of April 2015
"Adversity is only an obstacle if we fail to see
opportunity."
Celeste Cooper, RN
New Website
Learn more about what you can do to help your body function to its
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2 comments:
I am so sorry that you having to deal with this, Celeste. Hugs and prayers.
Thank you Judy for your kindness.
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