We had no health insurance at the time as both my husband and I were both on unemployment. We had COBRA'd the benefits which (of course) had just run out right before this all happened. Being fortunate to live in America I managed to get my diagnosis and treatment with no insurance at all. The generosity and compassion of my doctor and a neurologist friend of his was how it all worked.
The treatment for this affliction is normally anti seizure meds. Tegretol is the first pick - and I adored Tegretol but had an allergic reaction to it. So Dilantin it became. The cognitive problems caused by taking Dilantin are very frustrating. Loss of memory and whatever that thing is called when you can't remember a simple word usually when you're right in the middle of a sentence. It is hard but the pain - oh the pain - is debilitating. It is hard to describe - like labor but knowing that it won't end happily or possibly even won't ever end. The pain consumes. So the problems with Dilantin are dealt with (and with a grateful heart - I might add)
Anyway - I am putting up a link to the Trigeminal Neuralgia Association. It is a wonderful website with a lot of support and information.
As to the problems with homeschooling while dealing with this abominable affliction I have to say that I am definitely not as organized as I was before. My house is messier because Dilantin makes me feel sort of happy to just sit and not move at all. Of course I do force myself to get up off the couch and I find that once I start moving I'm much better. Overcoming the inertia is very hard. My kids understand that I am battling with the monster and find it quite funny when I screw words up. Such as saying 'clat' instead of 'cat'. Or accidentally calling the dictionary the bible. (Well - it's a big heavy book - you see?) We manage and usually with a happy disposition about it. We get it done even if not beautifully and gracefully all of the time. The flexibility is key. We can do art at 7:00 p.m. if we wish. We can start school at 11:00 a.m., 1:00 p.m., 3:00 p.m. - whatever works for us.
Many people are horrified - You don't have a schedule! We do have a schedule it's just different from most and it's very flexible. For instance the kids bedtime is 9:45, but the older one can read quietly in her bed until 11:00 then it's lights out. The younger one goes right to sleep and is up around 8:30 - 9:00 a.m. The older sleeps until about 10:00 a.m. That's how it goes every day! See? A Schedule!! As far as school goes - a basic plan is there and sometimes we only do part of it but many times we do much more! Everyone in the house has to be able and ready to deal with what needs to be done. Some days it just aint happenin'. Other days we're on fire!
Anyway - I'm thinking about getting gamma knife surgery for the T.N. I'm fixing now to consult several neuro. guys and gals about it. (Yes - we have very good insurance now!) If anyone has any feedback about the gamma knife surgery I would much appreciate it.
Off to beddy bye for me! Sweet dreams!