As I mentioned before, research has shown off-label use of an SNRI in combination with lyrica or gabapentin has helped with neuropathy more than just lyrica or gabapentin alone. I tried taking duloxetine in December and gave up after two months, because going up in dosage was a mitigated disaster of side effects for me. However, seeing how the pilocarpine has produced saliva for me at sub-dosage levels got me to thinking that my sensitivity to drugs might mean that a sub-dosage level of an SNRI might help my neuropathy. So, I asked my GP to try duloxetine again.
She wanted me to try the other SNRI, effexor, first, so I did. Two days was all I could bear at an even lower dose than the initial dose of duloxetine. It was brutal. So, last Monday, I started the lowest dose of duloxetine again, with the goal of trying to stay on just it for 2-3 months to see if there is any gains in the constant shocking in my hands.
It has been a long, long week.
Primarily, I have done a prodigious amount of napping. Three days, I think I was asleep more than I was awake. I have been napping heavily in the evenings for more than a year now, with the added exhaustion of Sjögren's on top of the fatigue of Dysautonomia. I am weary of being weary. Yesterday, I only had one nap and today none, but that was because I was laboring and my sister's phone call kept me on task instead of curled up on the sofa!
I have had headaches again and an increase in Trigeminal Neuralgia flares. It is the latter that is truly discouraging, but I can say there have been less in the past two days than there were in the first two days, so perhaps there is hope. I am not certain I can live with more of those brutal pain flares just to take this medication.
The IDON'TCARE is back. And, to be honest, I am welcoming of it. The numbness or distance or however best to put it is a welcome abject relief from all the things that have been weighing on my being. I am still overwhelmed with the thought of all that I am facing, but just not also with the emotion of it.
The other neurological issue is the dystonia and tremors. I learned that they are called extrapyramidal side effects and that one way to treat them, providing that you wish to stay on a drug that can cause permanent neurological side effects, is the use of benedryl. I have not tried it yet, but I am thinking hard about it. It is just that benedryl makes me so darned drowsy and I do not need another drug causing that side effect.
I am trying to deal with the dystonia (muscle clenching/continuous spasms) by mind-over-matter. The jury is out over whether or not I am gaining ground. I am at least aware of the problem much of the time and am actively working at relaxing.
Sadly, I am also back to sleeping in 90-120 minute increments during the night. My sleep has been very light, but I think that is a step up from insomnia. How you can be drowsy and have insomnia at the same time is a mystery to me. In any case, I wake up, fetch fresh ice packs, read a tiny bit, crash, rinse and repeat. I do that until I think that I can get up and stay up ... at least until my first nap.
I know the first two weeks are the worst, so I am working hard not to really think about how I am just now. Instead, I have been moving from one day to the next, still in shock over my fourth cavity and all the other ways Sjögren's is attacking my body, and caught up in the battle that is trying a new medication.
However, I had an almost impossible goal today: two birthday boxes.
Two birthday boxes means making two Lemon Greek Yogurt Pound Cakes. Plus cookies. And wrapping things up. Plus taping up the boxes. Plus writing out labels. I am glad to report that the first task was accomplished. Don't you think that I did a stellar job on the glaze this time??
My last glazing was such an abject failure that I worked to improve my process. Not once, but twice I was able to not over mix the glaze and to apply it in a more aesthetically pleasing manner. Frankly, I wish that I was eating this!
My sister had a most brilliant idea: Only mail half the pound cake and keep the other half to celebrate the birthday!
I must say, I was sure tempted to try out her idea. Instead, though, I wrapped up both of them whole and (hopefully) safely packaged them up for the birthday boxes. I have to try and get to the post office tomorrow morning, since I have a delivery window in the afternoon for the replacement of the replacement refrigerator.
Yes, the Maytag one has finally arrived.
Here's hoping to no more frozen food on the morrow. And birthday boxes off in the mail.
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