Em has been on Ami for a week. Started at the lowest dose and it really was doing nothing for her sleep. I called the pain clinic yesterday and they gave us the go ahead to up the dose to 20 mgs. Again, I figured she would be knocked out and, again, it didn’t happen.
She was somewhat tired but couldn’t sleep. I think she finally fell asleep around 3 and was restless for the rest of the night.
I am getting more and more convinced that her sleep issues are related to adrenaline – literally too tired to sleep. An article that describes this in EDS patients can be found at http://www.dynakids.org/Documents/hypermobility.pdf – you can scroll down to where it talks about sleep issues. Interesting theory. And I wonder if the [theoretical] high intracranial pressure could be putting pressure on the pituitary gland and straining her endocrine system, causing adrenaline fatigue. Also, the amount of pain she is in on a daily basis is enough to stress the adrenal system so she might be getting it from a number of directions. Just my musings on a subject that never goes away…
Anyway, we will try this dose for a while and may bump it up again if it doesn’t help. She seems to be very resistant to the effect of meds – which is typical of EDS patients. Either resistant or terribly sensitive – or both! Which makes coming up with a pain management strategy very challenging. Truth is, we might not find a real answer until we address the neurological symptoms in a meaningful way.