Pain, fatigue, and focus

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Two weeks since my last ketamine infusion and my anxiety is… present, again, and my chronic pain never went away at all but now I’m feeling a lot more aware of it.

I went back and tried Adderall again and it didn’t mess me up, although it also didn’t help me like it did the last time I tried it. But neither Adderall nor caffeine are messing with my blood pressure or increasing my anxiety, so I’ve reopened the conversation with my doctor regarding other meds for ADHD. In particular, I asked about Dexedrine and Desoxyn. Both of them seem promising at the dosages I’m looking at, although my insurance won’t cover Desoxyn (which is unsurprising, there was a TV series about it) so we’re trying Dexedrine first.

Regarding chronic pain, my doctor went over my chart and he noticed that we never really did anything about my high triglycerides, and then he had a thought: what if my high triglycerides are contributing to my fibro symptoms? Doing some cursory literature search found that it’s plausible, at least, so I’m also going to start on Fenofibrate to lower my triglycerides and hopefully get my body in some sort of balance there. He’s also ordered some more labwork to see if I have any gaping vitamin deficiencies.

Have I mentioned how much I cherish this doctor? Of all the doctors I’ve seen, this is the only one where I feel like he actually listens to me, doesn’t talk down to me, understands that I know my body and have done my reserach, and is willing to try things to attempt to treat these complex, deep-seated issues that have caused me problems for the past 25-odd years. It’s a lot easier to be patient as a patient when the healthcare provider treats me with respect like this.

He’s definitely a rare breed.

Ketamine 3.5

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Yesterday’s infusion left me feeling a lot more wobbly than usual today, but it was also a huge increase in dose. I ended up going to Taco Bell for lunch since it’s the only place within walking distance (EDIT: not actually the only place in walking distance but the quickest and easiest option for food near my home that I don’t have to prepare myself), and I decided to get a lunch combo, and in my haze I decided to make my drink Mountain Dew Baja Blast, which is rather high in caffeine.

So, on the minus side, I now have the strongest caffeine headache I’ve had in about 10 years when I first had to go cold turkey on it.

But on the plus side it’s just a caffeine headache, and not a panic attack!

I think this is evidence that the ketamine treatments are working, and maybe this means I’ll be able to go back on Adderall when this is all over with.

I don’t know if this has done anything for my chronic pain just yet, but those things are so interrelated anyway. So this is pretty promising in any case.

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Current goings-on

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Still on disability leave, and still in considerable pain. I’m trying not to work too hard on things, but it’s hard not to do things.

For example, I worked on a song with my friends Ken and Huan-Hua for this week’s Song Fight!; we entered the “We Did Everything We Could” fight under the band name Richard Donner Party. It was a fun song to make. Fortunately I didn’t have to even so much as look at a guitar. Most of my work was vocals, light keyboard work, and editing.

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Short-term disability leave

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Over the past couple weeks my pain has been flaring up again, driven especially by work stress. A few days ago I hit a breaking point and realized that this is something I need to actually take short-term disability leave for.

Fortunately, Moz has an extremely generous disability leave program, and management would much rather someone take it if necessary. So, for now I’m off from work until August, and we’ll see where things go from there.

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More updates!

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  • My resin printer arrived today. It was a bit obnoxious to get a working print and holy heck it’s a messy process even when it does work, but this’ll be fun to mess with. (Yes, I now have three 3D printers. Only the resin one is actually operable right now, but the Artillery Genius has some repair parts on th eway, at least.)
  • I accepted an offer on my condo. It’s a lot less than I was hoping for but it’s still plenty of money. When that sells I can start working on building out the studio, which is the linchpin for getting a bunch of my other house ambitions underway.
  • I’m having one heck of a fibro flare and this makes it very hard for me to actually focus on work. But also there’s a stress factor involved. Hopefully that all sorts itself out soon.
  • Because of the aforementioned flare I’m also not making much progress on getting my living room or kitchen in any sort of order. But I’m still slowly chipping away at that glacier.
  • Cannabis isn’t really helping with the fibro right now, either.

Melatonin experiments

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Last night I came across a pop-science video about the link between ADHD and sleep disruptions, and it raised an interesting point: many of the ADHD symptoms are also symptoms of sleep deprivation, and the sleep disruption aspects of ADHD might actually be the underlying cause of many of them.

I’ve always had great difficulty with sleep, with trouble falling asleep at night but then being incredibly fatigued during the day. And I can’t help but wonder how many of my other issues are just plain due to crappy sleep. Maybe my chronic pain isn’t because of an underlying neurological cause, but is because I’m not properly sleeping and healing at night?

I’ve had three sleep studies at this point. The first in-home study vaguely diagnosed me with obstructive apnea, and is why I got a CPAP machine. The CPAP machine didn’t help at all, so a second study to rule out narcolepsy happened. Then the third one verified that CPAP doesn’t actually make a difference for me.

Anyway, one of the things mentioned in the video is that there’s been some success with treating some forms of childhood ADHD with time-release melatonin. So starting tonight I’m going to try taking time-release melatonin and see if that helps me any.

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Guanfacine and naltrexone updates

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I’ve been on low-dose naltrexone for a whole month now, and I don’t think it’s really helping with my pain.

And I’ve been on guanfacine for two weeks, and while I’ve noticed a slight improvement in my focus (and a general lowering of my blood pressure, which is of course to be expected), holy cow am I drowsy all the time. Like, to the point of nodding off while sitting still or whatever. I hear that this effect goes away after a couple weeks, and I really hope it does soon, because even though I’m generally getting a full night’s sleep every night I still wake up exhausted and end up taking little mini-naps throughout the day. Heck, even while going grocery shopping I occasionally feel like I’m going to fall over.

On the plus side, caffeine doesn’t give me as big of a panic attack now (although I still feel a bit of one) so that’s at least filling in the gaps while I try to stay awake at work.

Bonus thing: yesterday I tried coating my glasses with soapy water (based on seeing an article in Glamour) and it actually works pretty well! The article suggests thoroughly cleaning them, but I just mixed a little bit of liquid hand soap with a glass of water and dunked my glasses in them and let them drain. It’d probably also work pretty well to dilute some dish soap and swap it on with a cotton swab or something.