My days are, filled with kid activities and then pretending not to be crashing afterwards. I find I'm just exhausted all the time, between the potty training, and the long nights I don't know where my time goes. I try to maintain a resemblance of order but it's mostly over run by children and the fumes I run on. All night I'm up pacing and rocking in bed holding my head fighting the pain. Then I watch the sunrise, catch some sleep between running from room to room, sometimes falling asleep in a child's room for hours and then in the morning we go again. I crawl out of bed, put clothes on everyone, make all of our breakfasts, go through our letter sounds and word flash cards, make card board cars for the kids or play imaginary games in pop up tents, all working towards snack time and the ever glorious nap time. I try my hardest and then crash the hardest. Especially on preschool driving days, when I try to do something exciting like petting zoo dates for my girl that stills home with me. Some days, all Im capable of is laying beside them on the matts, amongst all the toys, happy to just be engaged in their worlds, and doing the best I can to pretend I don't notice the pain. Sometimes on my really bad days, its all I can do to just read stories and find ways to trick them into think indoors is just as fun as outdoors. When unsuccessful I pretend that pain is just mind over matter and that I can go for walks, and we adventure to the park and then we run home as it is not mind over matter. Then I endure the repercussions all night long, but happy that they got outside. I beg the Dr.'s for answers or at least a way to get thru this, to let me drop from a daily 9/10 pain scale to a 7. There have been no miracles yet but Im still praying.
Since seeing the facial pain specialist, there is now a very long list of all the possible medications for trigeminal neuralgia that do not work for me. After the shaking in my hands got worse, I started to have embarrassing incidents where I would be out getting a coffee and go to put the cream in it and suddenly just drop the creamer, splattering it everywhere. Its embarrassing. Yet, I have learned to work around these odd symptoms. Its hard to say if it could be MS or just a side effect of one of the medications. After all one of them did cause a peripheral neuralgia type symptom.
The facial pain specialist ran out of ideas and after maxing out the doses of both the medications I was on, he told me to go on opioids and that it was too unusual a case for him. And that he would need to refer me to an MS specialist to see what she thought. It was frustrating that again the case was too hard for another specialist, but I think by the end of it, we both knew he was out of his depth as none of his attempts were helping. In December I finally got into the MS specialist, and she was able to narrow the diagnosis down saying that it definitely wasn't ms, and that most likely it could be a form of a trigeminal autonomic cephalgia. This meant that what ever I have just went from rare to really rare. However, the only Dr that could help with narrowing which type of cephalgia it was, was a very specialized neurologist that specializes in types of headaches. Unfortunately, I'd already been referred to this one three times already. Which meant that if I was denied again, I'd have to resort to seeing a specialist in Toronto, as there are only two in our country who understand this type of rare disorder. Luckily she knew the specialist first hand, and would ask her right away, as she thought that I would make great teaching material for the students. The one thing this specialist could determine from the exam was that, the pain came in a sawing pattern, and so could not be ms. And, that the trigeminal neuralgia is just a symptom of whatever the real cause is.
In January I got into the Headache Neurologist, it was like a miracle to get in so soon as I'd heard it was another 4-5 year wait list. Finally I was seeing someone specialized enough to maybe help with this kind of pain. With each Dr the field of diagnose keeps narrowing. And this time, its finally between two likely areas, possibly a central sensitization and SUNA a trigeminal autonomic cephalgia. The Dr has decided to treat with another medication for three months in hopes of effecting the possible central sensitization. Yet, being that it is already mid February and I haven't felt any relief I am not hopeful that It's disconnecting any of the pain. If it is successful, in treating it even in a minor way, they'd like to start an experimental self injecting therapy which should stop the peripheral pain receptors. However, if it does not work it will mean trying lidocaine IV treatments for the SUNA. In the mean time a specialist from San Diego is coming to consult on the harder cases and they have promised to bring up this challenging and complicated case with him. Ah, to be an anomaly.