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