"Suffering the Slings and Arrows of Outrageous Fortune"

Med update

The amitriptyline is still not working – not optimally, at least. Em has had a couple nights of falling asleep early since she started taking it. ‘Early’ as in 1 am. Otherwise it is somewhere between 3 and 5 am before she falls asleep, which is somewhat better than 7 or 8 am, but still…

So, this dose of ami is certainly not doing the trick, yet. We probably need to up the dose again – 20 mgs is still a bit low – but she has only been on the increased dose for a week, so we should probably wait another week before requesting to increase it again. It is one of those situations where patience is called for – and neither Em or I have much patience in this area at the moment. But, we are in this for the long haul and it is very much trial and error. Frustrating because until we figure out the ami, we can’t start the next layer of pain medication. She has gone back to taking the flexeril at night. It wasn’t helping her sleep, but it was preventing the muscle spasms that are so painful.

Otherwise, not much news. Still looking into the Driscoll theory regarding intracranial pressure and into mast cell activation disorders. There is a lot to figure out regarding the mast cell stuff and very little info to rely on so it is a bit confusing but I do think it is a real possibility.  An intriguing puzzle to put together and just one more ridiculously rare condition to manage. Such is our life!

Tired of waiting on insurance; really, really wanting some resolution regarding the neurological symptoms. Tired of seeing my baby sick and hurting and unable to live. Tired of the whole thing.

And yet, we push on and have hope. Crazy thing, that! 😉


Comments on: "Med update" (2)

  1. Hi. Just came upon your site while doing that endless searching that we all do looking to help our children. In the same boat here with a 19 yr old son. He just started Cymbalta and I was wondering if you have tried that yet. Dr. thought it was a better fit than the amitriptyline. So far no help (only 5 nights). He didn’t get to sleep last night until 6am. I’m going to ask the pediatrician for the head data– interesting possibility.
    I’ll be interested to see if the amitrip starts to help your daughter.
    Best to you.

    • Hi Ann,
      We just got to the pain clinic in July so we are at the very beginning of any pain management at all. So far, the ami is not doing much of anything but at least she finally has someone willing to give her something more than Aleve! I know the pain doc is planning on trying Lyrica next, depending on what happens with the ami. Cymbalta is probably on his list as an alternative. I am convinced that the Driscoll Theory and Diamox is going to make a huge difference for my daughter. Sleep issues and adrenal fatigue go along with the theory too. So, honestly, I don’t expect anything to be very helpful until we try the Diamox. My daughter’s head circumference measurements line up exactly with the theory and so do her symptoms. I do think this could be groundbreaking for EDSers! Thanks for stopping by! Let me know how your son does – Good Luck!

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