I guess the beginning?
Type one diabetes is an auto-immune disorder. Your own body gets confused and "breaks" the insulin producing part of your pancreas. I was diagnosed at 12.
Graves disease is an auto-immune disorder. Your thyroid can't self-regulate and produces too much, or jumps all around. I was diagnosed at 22.
When I was 29 I started having "spells". I would stop everything, stand still and stare blankly. In my head I had gone somewhere else. A different world, with a repeating storyline. I started recognizing that world, and developed the ability to "fast forward" the story, but couldn't stop it completely.
At first they called them atypical migraines, then, after having a grande mal, decided that they were a type of seizure.
I don't think any of us were taking them very seriously still. Annoying, yes, but something to work around.
Topamax worked for several years. The spells were shorter, and less often, and sometimes even went months in between.
But Topamax wasn't strong enough after awhile. Between military moves and changing doctors I wasn't taking care of myself as well as I should and ended up having over 20 of my spells, my seizures, in a 3 day period. In Oct of 2011, at the end of those 3 days, I lost my memory. Just gone. I knew I was supposed to recognize people. But I didn't.
Thankfully, I was visiting my parents while Andy was away for training, and my dad took my children and put them to bed for me. My mom sat with me and told me the story of birthing my children and marrying my husband. She showed me pictures of my siblings and best friends. She told me what was important to me, what I loved. I cried.
By the next morning it had all come back, but that was when I started taking this disorder seriously.
Sometimes meds work really well.
Sometimes they turn me into an unkind person.
Sometimes they make me just want to sleep all the time.
Several times they have left me begging God to please just let me die.
Once they even had me planning the math needed to make a Tahoe and a hill enough for that.
Meds can be very ugly. Don't get me wrong, they have been very helpful too, but they can be ugly.
Vimpat, the one I am on now doesn't seem to be working any longer. I am back to 7-8 recognized spells a month, and probably more that are more subtle, which leaves me exhausted and confused. At least twice in the last six months I have simply "lost" time. I have continued to function, putting away groceries and responding to questions even, but an hour later I "wake up" and have no memory of it. I was simply on autopilot.
I am tired of feeling lost. I am tired of being tired.
So, we are trying something new.
The latest theory is that my seizures are actually an auto immune disorder as well. My body got confused enough years ago to kill my pancreas and mess up my thyroid. Now it is making my brain misfire. It is destroying itself. For anyone medical, my anti-gad 65 was so high it was immeasurable.
The treatment I am starting is called IVIG. It is an iv drip of immune globulin. An immune boosting surge. The theory, the hope, is that the confused part of my body will spend time trying to figure it out, even fighting against these new things, and stop beating up my brain.
I have a 3 hour dose every day this week, boosting my body up and getting it started.
Today's went well.
It will take months to know if it is helping my seizures. But today went well. I accepted the meds without any negative side effects except a slight headache... which is pretty much a constant part of my life anyway. I have hope.
Thank you, all of you, for your amazing support and prayers. I needed that. Hated to admit it, but needed it.
