Yesterday after our appointment I had such a headache. I had been so stressed that when it finally dissipated, my head literally felt like it was going to explode from the change in pressure. *lol* Seems odd that such relief can bring such pain.
I can't explain how relieved I am. I know we have a long road ahead of us still, including six months of waiting to find out how much of a problem these lesions are, but my heart will no long stop beating when KayTar goes into one of her episodes. I can rest in knowing that it isn't doing any real damage (beside the pain and vomiting it causes sometimes) and that even if it lasts for days, I know she will come out of it. Those have been my two biggest fears in regards to these episodes. I worried that we were sitting passively by while her brain was being destroyed by these episodes; and when she dropped out of consciousness, I worried that she would never come back to us.
I know that she will most likely continue to have them, because there is no proven way to control paroxysmal torticollis, and that they will probably continue to hold to the two week pattern and continue to lengthen. But it can finally become something we just live with. We can deal with it and go on, without the huge fears that have been plaguing us for the past 3 months. I am sad that she has to endure this, because they are painful for her at times...and I don't know if she understands what is happening to her. But we have peace of mind finally. It is priceless.
We still have worries, but we have fewer worries than we did yesterday. And that is a miracle in itself.
I really admire all the strength, love, resilience and even humour that you show, you know. :)
I'm so pleased and relieved for you... will she grow out of this in the long run?
I can see how that would be a relief - especially the part about feeling like you were "sitting passively by" while she was getting worse or hurting herself. Yes - a huge relief!
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