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Sunday, July 10, 2016

med monitoring

This is a spoonie assessment post about a new med. If you find that kind of junk boring, I don't blame you, it bores me to tears writing it out, but as a writing prompt, I'm pretending to be a test subject and I don't expect you to sit through this.

One of the benefits of living with a significant other for over 2 decades is a long enough history for Scott to be able to kindly say, "Well, let's see how you're doing in a couple of weeks, it might help that, too" when I start biting his head off on my first day on a med whose side effects include mood swings and behavior changes and I say maybe this won't work. Love this guy.

*sips coffee*

All righty, first day on anticonvulsant (gabapentin) for nerve pain felt like cotton being stuffed around my brain and all the cries and screams being muffled. I've tried a lot of stuff, used to joke about being the guinea pig for new meds years ago, and nothing ever cut so much down like one day on this pill. I'm actually on a very tiny dose to start, and naturally I'm not doing jumping jacks, but neither am I trying to ignore continual nonstop shocks, tingles, jabs, pokes, numby waves, and hard pricking sensations over quite a lot of my body. (Several people who've had shingles say it sounds like I'm living with shingles that never goes away, if you need some context.)  I feel like I can move around better, but I can tell not really because the fibromyalgia is still there and I've already hurt myself a couple of times trying to do something, one of them being a knee going out of track and not being able to straighten it for nearly an hour, so yeah, nothing is cured, but the level of suffering went down significantly.

From Lyrica vs. Gabapentin

Gabapentin is, however, a relatively better choice for diabetic peripheral neuropathy because in such chronic disorders, it is acceptable to increase dose slowly to achieve the minimum dose requirement over the span of a few weeks or even months. Lyrica is a better choice though if you're talking about fibromyalgia or other neuropathic disorders.

Hmm, I'm dealing with both... Funny they don't mention Lyme disease at all. We still don't recognize being a lyme carrier being problematic to degenerative nerve function. "If untreated, the bacteria may persist in the body for months or even years, despite the production of B. burgdorferi antibodies by the immune system. The spirochetes may avoid the immune response by decreasing expression of surface proteins that are targeted by antibodies, antigenic variation of the VlsE surface protein, inactivating key immune components such as complement, and hiding in the extracellular matrix, which may interfere with the function of immune factors. In the brain, B. burgdorferi may induce astrocytes to undergo astrogliosis (proliferation followed by apoptosis), which may contribute to neurodysfunction. The spirochetes may also induce host cells to secrete quinolinic acid, which stimulates the NMDA receptor on nerve cells, which may account for the fatigue and malaise observed with Lyme encephalopathy. In addition, diffuse white matter pathology during Lyme encephalopathy may disrupt gray matter connections, and could account for deficits in attention, memory, visuospatial ability, complex cognition, and emotional status. White matter disease may have a greater potential for recovery than gray matter disease, perhaps because the neuronal loss is less common. Resolution of MRI white matter hyperintensities after antibiotic treatment has been observed."

Plus being ejected from a violent wreck and growing up with rheumatic fever from untreated strep and measles yadayada.

Anyway, several hours into it yesterday I realized I wasn't feeling-

  • that spot in my back where I want to rip my left should blade off
  • the nasty shocks across my shoulder and chest and up my neck
  • the weird 'itch' by my right knee from deep muscle scarring
  • the crazy arm pain and pricks all over my back from the nerve entrapment
Things I still felt just fine-
  • my jaw locked up from sleeping too hard
  • the headache and other stabby pains that gave me
  • my knee going off track
  • a weird reminder scream from my left foot mimicking a lower back nerve problem we dealt with 2 years ago, but it didn't last long, thank goodness
This morning- it's all back. And so far no weird side effects, so I'm starting again. I'm hoping this will help me be able to get back on track with the daily workouts, because the last 3 months have been so difficult that I've nearly entirely stopped lower core and walks. Not good.


Btw, I found among my writings that my lyrica debacle was in November 2007, number 40 from this survey-

40: What did you do the last time you were home alone?
I must have taken a nap, because I don’t remember much else.  That was the day that I first doubled my lyrica and drove around a major highway bombed out of my skull.

2007 (not to be mistaken with 2004) was the year everything finally went down in slo-mo crash. It started in June with not being able to walk, escalated through the winter holidays with the CMV infection, and by 2009 I was your basic Jabba the Hutt curled up in a ball and occasionally eating frogs and killing people.

Honesty assessment- I do NOT like taking pills. After decades of side effects and cleaning off meds, I can barely handle being compliant long enough to see if meds work at all any more. This morning has been weird. I don't like feeling my lips and throat go 'dry', I don't like the nerves twinkling 'out' and disappearing, it's weird when stuff changes and feels different (aspie's so aspie), and it's affecting my brain a bit because I couldn't even count out 4 eggs this morning for breakfast for 2 people. How many years have I been counting out 4 eggs on weekends.

It's also going to be very interesting to see how this affects manic mood swings. I've gotten back off so many meds over intensified mood swings. It's been so bad in past years that even as crippled up as I'd gotten, I would pack up a backpack and a lunch and go sit in town all day just to be around people so I wouldn't be alone. I have favorite waiting rooms all over Springfield, and I know Mercy hospital like the back of my hand. On really super bad days I walk all over the hospital. No one knows how bad it's been. The only way I can come close to describing it is saying it's like being terrified of being aware that I'm alive, and being terrified I'll do something incredibly stupid against my own will, because I do NOT want to die or hurt myself.

When caregivers ask if I have thoughts of suicide, the answer is an emphatic NO. But they're not asking the right question, are they? No one ever asks me if I have fear of losing myself, of watching me do things while I sit on the sidelines like a doll. No one ever asks if I trust myself, whether I feel like I'm on the brink of an abyss where everything real meets everything unreal.

My psychologist insists I'm not crazy. He's known me for nearly ten years. He's been through most of this whole crash with me, he's seen nearly all of the really hardest stuff. He thinks I'll be ok because I'm pretty good at self monitoring and have a very healthy panic button. I will do what it takes not to fall of that brink, including letting people know what's going on with me and going out of my way to be near other people even when I feel my most asocial.

So here we go again, crashing moods around so I can continue to function through pain that breaks a lot of people. I'm already broken. I've learned that being broken can mean being able to get through stuff unbroken people don't think is possible.

The only person I trust is Scott. I'm going to Walmart with him later, and it'll be up to him today whether I continue this med through the week while he's gone at work. If I get too weird, he'll let me know. As you can imagine, Bunny bombs are on hold.

Laterz.

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