It has been a while since my last post. Unfortunately, chronic illness can be boring. I spend my time sleeping, being bored out of my gourd (but not in a creative, let’s build a space station kind of way, but in a I’m bored, but too sick to think or read or do anything interesting kind of way), being a good girl and drinking my formula and most importantly, spending time with David and the cats.
Apparently, even boredom abhors a vacuum, so here we are, with another update.
After several cancellations, I did finally see the nutritionist. She is good. She got the extent of the impossible puzzle we are in when it comes to my nutrition. She suggested that we try a new formula. The formula I am on is the absolute best, but anecdotally (and she was very clear on that word, which won her points with us), she has seen patients have abdominal pain with my formula.
For reasons that defy logic, almost all tube formulas have soy and or dairy, both of which are common allergens. I am allergic to soy, so she was able to narrow the choices down to a single soy-free peptide formula. Unfortunately, it has almost the exact formulation as my current formula, but it is worth a try. She is trying to get a sample from her sales agent so we can see if that makes any difference in my ability to increase the rate of my pump.
Additionally, she suggested that I try a protein rich soup in addition to my formula to get my calories up. David dutifully made me two containers of soup, just in time for a heat advisory. The soup is waiting patiently in freezer for the outside temperature to drop below soup temperature itself. Then I will add that to my daily intake as my stomach allows.
I have now been on 60 mg of cymbalta for just over a week. I am definitely feeling it enter my system, because some unwelcome, but familiar, constipation has returned. I am, however, still struggling to move my pump up from 25ml/hour to 26 ml/hour. I was able to white knuckle it for 14 hours, but when I woke up in the middle of the night and unable to fall back asleep, I finally gave it and switched it back down to 25ml/hour.
As anticipated, the psych nurse practitioner in Plattsburgh that the Stony Brook GI put in charge of managing the cymbalta has fallen down on the job. Mary is on the job trying to find me an actual psychiatrist to manage my medication. She hasn’t been able to find someone with explicit knowledge of the gut/brain connection, but she has found me one that has experience with chronic health issues. We are calling that close enough. She is working on getting me an appointment.
All of that would make a reasonable enough update, but hold on to your hats folks, because here it where it gets exciting. I have developed mouth tremors.
Turns out that mouth tremors are a rare side effect of domperidone. Domperidone is my most important motility drug. It has exactly one alternative that not only doesn’t work for me, but has lousy side effects, including depression. The anxiety-inducing impact of developing a rare side effect of my most important medication when I have a chronic disease without cure or treatment cannot be overstated. Turns out, anxiety exacerbates mouth tremors. Who knew?
My uncommunicative GI told me to go off domperidone immediately for 48-72 hours and asked if I had seen a neurologist. I responded that I had not and what would happen at 48-72 hours. In response I got the name and the number of a neurologist who is scheduling months out.
Just a quick timeline here. I wrote to the doctor about the tremors on the Friday before Labor Day. He did not get back to me until Tuesday. Today is Wednesday, and I have been off the domperidone (and the tremors are continuing) for 24 hours. 72 hours is Friday. He does not work Friday. So once again, he is forcing me to wait an additional 3 days an answer about my most important medication. Something he offhandedly acknowledged in his original reply. Mary is seeing red and intends to start calling his office Thursday morning until I get some kind of response from him. We also both acknowledge that his ultimate response may remain useless.
Now we get to add a new doctor to my stable. Mary very quickly found me a neurologist who could see me next week. But before Mary could ever update me on the appointment, I got a call from the doctor’s office cancelling the appointment because that doctor doesn’t deal with facial tremors. Who knew neurologists were so specialized? Mary was particularly pissed because that particular doctor’s website explicitly says that they deal with tremors of all kinds.
So that is where I find myself now. Twitching away while Mary works her magic for me. I remain immensely grateful for Mary, because I could not be doing this research myself right now. Not in my nutritional state.
I want to add a grateful thank you to those of you who have been checking in on me. I may not always be up for responding right away, but I appreciate the messages immensely. They make a huge difference for the state of my mental health. Thank you.