We have had a marginally better few days. By better, I mean, Em is eating – still quite nauseated but eating. She is able to be out of the darkened bedroom for a little while at a time. She usually is in her room if she is not in mine. Then,eventually, the pain drives her back into the ‘cave’ and she has to rest in solitude until it fades a bit. She is awake during the day, instead of sleeping all day. She has actually woke up and ate breakfast the last few days and, while that is nice,it is bound to be temporary. (She has never been a morning person)
Not sure what to make of this slight improvement. For a while there, it felt like we were on a one way trip downhill so any relief is welcome, but curious. The only explanation I have is that it has the feel of the POTS episodes she has had since summer – only greatly magnified. With her POTS episodes, she would start showing signs for several days, then work up to a week or so of really bad days. Once they were past, she would start coming out of it and have a few ‘normal’ days before she would start all over again. Looking back, this sort of followed that pattern except WAY worse and different in that the neurological symptoms were much more noticeable. If POTS and Chiari/Cranial instability are co-culprits, this would make sense. Whatever the explanation, I will take a few days of less pain and nausea for her.
She is so frustrated and bored though – she still has the joint pain and instability that prevents her from doing much and the dizziness and headache on top of that. She was planning on going to Walmart with me this evening and get out of the house for a bit. That would have been a very big deal for her and I was hopeful that it meant she really was feeling better. But, by 3:30, the headache, neck pain and nausea kicked in and she said she just couldn’t go. I am disappointed for her and I know she is too.
We are really just trying to hang in there until Monday when we see Dr. Tinkle. I pray that he is able to help us!
(Note to self: She is complaining of her head being cold, even to the point of sleeping with a knit cap on. Odd.)