Em has been on the Diamox for almost a week and it is the miracle I had hoped for. She is headache free for most of each day now. The medicine is a bit variable as to when it wears off. Some days she goes late into the evening and the headache doesn’t return. Other days, it wears off at 3:00 in the afternoon and the headache slowly increases through the evening. But, as Dr. Diana points out, we are using a static dosage to treat a dynamic system – the production of CSF constantly changes from moment to moment. It is not surprising that the dose of Diamox has limits when faced with a CSF system in constant flux. And I would much rather deal with these minor fluctuations than have no answer at all. It is also entirely possible that as Em continues on the Diamox, things will continue to level out or we may end up adjusting the dose. I am just so thankful that the Diamox works, that I will gladly deal with the little quirks that we see. Oh, and no signs of dehydration or any problems. She is tolerating the medication very well and we couldn’t be happier!
We are preparing for her Tilt Table Test tomorrow morning. I know it needs to be done -it is long overdue, really should have been done a year ago – and it makes sense to get it over with. But I so wish it didn’t have to happen right now. She has to be off her amitriptyline and benedryl for 3 nights before the test. We had just got the ami to a good level – she was sleeping well and her sleep schedule was adjusting beautifully. Saturday night, the first night with no ami, she didn’t fall asleep until 6 am. And she felt awful all day. Headache, nausea, terrible fatigue. All symptoms of amitriptyline withdrawal. I strongly suspect that she went off it too quickly. The pain clinic told us to bump it down to 25 mgs for 3 nights, then 0 for the 3 nights before the test. But I think that was not gradual enough and she is suffering the consequences. Last night, she fell asleep around 3:30 am, so that was a bit better. She just has to get through one more night, and she can start back on 25 mgs, then back up to 50 mgs after 3 nights.
She is dreading the Tilt Table Test and is generally in a very bad mood. That could be withdrawal symptoms but I tend to agree with her that the timing of this sucks. She has had so little relief for so long that having the medication that actually helps her sleep taken away, seems cruel. She isn’t always very trusting of the medical community and with good reason. But, hopefully the good experiences start outweighing the bad ones.
The other thing I am worried about is that I need to stay in the room with her during the test. I am prepared to go to the mat for this one – the techs will have no clue about EDS or how fragile her joints are and she absolutely needs an advocate with her. Hopefully it won’t be an issue and the test gives us the conclusive data we need and we can get on with our lives.
So, that is what we are up to – two steps forward, one step back. But, in general, things are good and I am extremely thankful!