Monday, June 20, 2016

Progress and setbacks

Headaches are back. Not (yet?) as intense as they were before the "break" (with the steroid treatment and afterward), but they are back.
(good news is that the flu only lasted two days....)

My neurologist had directed me to raise the dosage of my nerve pain medicine, and that would be the prophylactic measure against the migraines. He said to raise it quite high. I had started doing that, incrementally, and when I got to 75mg (aiming for 100mg), a tremor started to appear, I could not keep my hands steady. This has happened to me before when I was on a different nerve pain medicine called Gabapentin, and I had to go off of it. There are many other side effects I am also experiencing with this high dose, as well, like shortness of breath (it makes me feel faint), pins and needles in my legs and feet, weight gain, and others.

So, I reduced the dosage again. Tremor is almost gone, breathing freer, thank Gd.
It's all just one big yo-yo.

Here we are again with no protection when I feel a migraine coming on.

We are headed to New York in a few weeks... I can't say I'm not a little worried about the what if's about being away. But it's out of my hands.

Good things are happening, too.... on the "good" days for me, when I have no pain or headache, I am on top of the world. It is a really new experience for me to have days- quite a few in a row- that I honestly have no pain. At all. I had forgotten what that felt like, to have no pain at all. Those days are miracle days for me. I milk them for all they are worth, and get into bed at night satisfied and optimistic.

Last night we went to a wedding, and Robert and I went together. I know that sounds to you like a given, but it occurred to me that I haven't been to a wedding in a loooong time. Usually I have to
bag out because I am some sort of sick. I have missed a lot of celebratory events and special occasions because of being chronically not well. It comes with the territory.

The wedding was fun, I danced a lot. Nothing hurt.
Today, however, I am paying for it I guess, with a headache. I realized in the car home last night (an hour and a half drive from the wedding) that hearing people talk in the car was just too much stimulation for me. It was actually challenging to be in the car with conversation happening, after just having been at a lovely, but loud and busy wedding. I have a deep need for quiet. It wasn't always that way,

OK, I have to go to sleep now. Unhappy headache hanging around.
Tomorrow I am driving into Tel Aviv to accompany my friend to her oncologist appointment. It's gonna be a long day.

I hope the headache is gone after a night's sleep.

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