It has taken me a while to gather my thoughts enough to sit down and write this. I feel I should dive in and just say it, and then ramble about after. I also feel that just saying it here makes it final and real, and perhaps that is why I have been putting it off.
On November 3rd, my neurologist declared that given my pain history and my response to Oxcarbazepine, that Atypical Trigeminal Neuralgia (TN2) is an underlying cause for my Monster Migraine. The TN2 continually triggers migraine symptoms, and everything keeps cycling, and this is why nothing has been successful.
This diagnosis means a few things. First, it means that I have a reason for my pain. Second, it means that I have a community of sufferers to join and learn from. Third, it means that I have a disease that currently has no cure. Fourth, it means that there are new treatment options open to me that, if successful, may lead to a better quality of life than I am currently living.
And, lastly, it means that I have gone from hoping that my pain will one day end to realizing that my pain is something I will have to manage for the rest of my life.
That last thing has been difficult to process. I have cried. I have been angry. I have acted rashly, or hyper-rationally… or something. I have turned to treatment options I have previously refused because I saw them as too painful or too pointless. I began acupuncture this past Friday and am going to see my acupuncturist twice a week until I see some results. I am going to turn to outside-the-box pain medications.
I have launched my own, personal war on Trigeminal Neuralgia.
I have curled into a ball and hidden under blankets.
I have talked to friends.
I have avoided friends.
I have felt relief.
I started a secret self care group on Facebook for when I have feelings and I need some kind of support. I started writing in a journal. I started falling apart. I started getting my shit together.
I definitely started forgiving myself for some things.
I have a disease, and that makes my head hurt all of the time and fires up ye aulde migraine making machine constantly. Fuels it. Makes it glow red hot.
Cool. So there is that.