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Nortriptyline updates

I’ve been at 30mg of nortriptyline for 6 days now, and I’m trying to figure out if this is how I felt on it before. Going through my nortriptyline tag I see that I actually was up to 40mg on my initial tapering, and after sitting there for a while I decided it wasn’t doing enough for my pain and that’s when I tapered down to 20. In one entry I complained that it wasn’t helping my sleep at all, and how it was making me constantly dizzy and tired and headachey.

This time around it’s definitely helping my sleep, and I’m not dizzy, although I am quite tired (despite actually getting a full 8 hours of sleep every night, for once!) and today I had a headache all day. Also plenty of nausea. But at least I got a nice long walk in.

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ADHD and fibromyalgia and nortriptyline

Yesterday I finally met with a new psychiatrist (having lost access to my previous one back in, oh, March), with the intention of figuring out what to try next in terms of ADHD medication.

As a recap, the first medication I tried (Concerta) just made me irritable and gave me tachycardia, and the second one I tried (Adderall) worked really well for my brain but also made my blood pressure skyrocket.

Anyway, on Tuesday I had also met with my pain doc and the decision we came to was that we should try increasing the nortriptyline again, since 20mg is doing something but not enough, and I couldn’t really remember why I felt like 30 was too much. He wants me to target 40-50mg for my eventual long-term dosage.

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pain management update

Today i had a followup appointment with the pain clinic. Unfortunately, as soon as I started working again my pain flareups came right back. But the doctor was able to pinpoint a few things which are probably the underlying causes, and gave me some more exercises to try. We also decided to try increasing my nortriptyline dose again; I’m on 30mg for the next week then going up to 35 after that (update: and mentioned an eventual target of 40-50, forgot to mention that).

It’s also pretty clear that stress is a huge factor, and boy howdy have I been under a lot of it. Fortunately my new workplace is hugely into giving generous vacation benefits and making sure people actually use them, so in a couple weeks I’m taking a trip out to Port Angeles and staying in a tiny house for a week. I’ll probably bring a guitar and my iPad and try to just, like, decompress, and Be, and spend a bunch if time in the olympic peninsula and enjoy the small town vibe.

Everything I’ve seen about Port Angeles indicates it is a pretty good place with a lot of comfort potential. Maybe even the sort of town I’d want to retire to. And apparently it’s even pretty trans-friendly! I look forward to seeing this year’s Clellam county election results.

Healthcare followup

Today I had a followup with my doctor after the cessation of gabapentin. My blood pressure is the lowest it’s been in years (118/75!) and she was really happy to see how much less stress I’m under. After discussing the current medication status we agree that I should stay on the nortriptyline for now, and she’s glad that physical therapy has been helping me a lot, as well as me getting better at mindfulness and other stress reduction things.

She also encouraged me to get going with a psychiatrist again so that I can possibly get back on Adderall or to try something else. I think before I do that I’ll see how well I tolerate caffeine. Which I’ve had a bit of over the past few days and it’s not been hecking me up at all, so this seems really promising.

Anyway she gave me a lot of words of encouragement and is also grateful that I’m taking such an active role in trying to make my own life better on multiple fronts. Hopefully this trajectory can continue.

Gonebapentin

Thursday night was my last dose of gabapentin; I am now off it entirely.

Today I mostly just napped a lot, and had occasional dizzy spells when I was active. I feel no different in terms of pain levels. My blood pressure seems to reliably hover around 120/80. Hopefully it’ll stay that way.

Between the physical therapy I’ve been doing and some lifestyle stress-reduction stuff I’m feeling pretty good. I need to just keep remembering to do my stretches and not let work affect me emotionally.

Medication conflagration

Gabapentin has been raising my blood pressure (and weight) pretty steadily since February, and it hasn’t actually been helping me with my pain issues. Back before I started on it my blood pressure was generally around 115/85, and as of last Thursday my rest blood pressure was 144/98. Which is, you know, pretty darn high.

So on Friday I decided to cut my dose from 200mg/day to 100mg/day, and see what that did to me.

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Checking in

I’m still alive, I just haven’t had a lot to say I guess. At least not publicly.

Work is work. Lots of frustrations not worth getting into. I was at least managing to get some music done which felt good, and my pain was improving until it suddenly wasn’t, so it’ll still be some time before I can work on comics again. Which is a shame because I really want to work on both Lewi and Unity, gosh I have so much more story to tell on both of them…

I’ve been wanting to do an online concert in lieu of Song Fight! Live (which was canceled due to the pandemic) but I doubt I’ll be in any position to do that either, and my ideas for how to do an ersatz performance would take a lot more effort than I’m willing to put into it right now.

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Various health updates

Two and a half weeks ago I got a COVID-19 test, and it finally came back, negative for both PCR and antibodies. So, it’s pretty unlikely that I have or ever have had COVID-19, which means that’s probably not at the root of my recent health issues.

One and a half weeks ago I finally got a followup, proper sleep study, which found that while I do have occasional apnea events, it’s not to the extent that CPAP treatment is warranted or even beneficial. Which is unsurprising; even when I was using CPAP I never found it to be very helpful, and this diagnosis means that I do not have access to my current provider’s DME1 so I can’t, like, get my equipment refreshed.

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Life update whatever things I dunno

Publ survived the load test. Will fluffy survive the ego test? Time will tell.

Anyway. Today I finally had my first appointment with the new rheumatologist. It went really well. I didn’t get any real new information, but at least this rheum is way friendlier and actually treats me like a human, rather than a pile of symptoms. Plus she actually listens to me and is interested in the things I’ve learned about fibromyalgia and so on.

Since my current meds aren’t doing enough for me, she offered two immediate possibilities, either switching the gabapentin with Lyrica (pregabalin), or supplementing it with Cymbalta. Both were things that the previous rheumatologist had suggested but I loathed working with him and never felt like going back1.

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Regular check-in

I’m personally physically all right, at least for now. The house guest also made it here safely, right before things got really weird.

I gotta say, getting an urgent group text informing my building of an incoming teargas cloud and “Close your windows” is not a thing I thought I’d ever experience first-hand.

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Pain management

Current state of affairs: the opioid painkillers have stopped being effective, so I’m gonna stop taking them for now. My doctor prescribed me a rather aggressive regimen of Tylenol (4000mg/day! holy crap) and some muscle relaxants, the latter of which help a little but not very much. She also increased my daily dose of gabapentin from 200mg to 400mg, and that isn’t helping much either.

I did finally get one of those old-school hot water bottles (the rubber kind which fill like a balloon and have a screw-in cork) and it turns out that this is a really good use for my sous vide machine, so that’s cool. The hot compress seems to do more for my pain than any of the meds do. Not enough to be, like, productive, but enough that I’m not screaming in pain. But maybe I can get back to work.

Anyway, on the plus side I finally got set up with a new rheumatologist, and I’m also starting physical therapy, so maybe those things will help with my ongoing fibro issues (which this could very well be yet another expression of, for that matter).

Followup from yesterday

So, the update from yesterday is that I am now on anticoagulants again, and I am not terribly happy about it. On the plus side I’m on Xarelto which takes way less management than Warfarin, but on the minus side I am told that I likely need to be on them for a long time (at least a year, possibly forever) due to my prior clot history, and so far it’s been giving me a headache and I’m also constantly worried about, you know, bleeding out and dying.

I’m also still in considerable pain, both in my leg but also in my everything else, because this fibro flare just will not end. And I’m under a lot of stress right now, and I’m frustrated at a lot of things.

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Updates

Oops, I guess I haven’t been posting here as often as I’d like. I guess I’ve mostly been using Discord to keep in touch with folks.

I’m fairly busy at the day job. I’ve already rolled out a few important features for our websites and soon I’ll be ramping up on another project. So far everyone there has been super great and I’m glad I lucked out with this job, even without the societal/financial catastrope that happened shortly after I started.

Isolation hasn’t been great for me. I’ve been having a pretty bad fibro flareup lately, and I still haven’t quite shaken whatever this dang thing I have is. It’s not gotten severe enough to require medical attention but at the same time I’d love to not be missing occasional workdays when I’m feeling especially lousy. It might also just be part of the fibro flare, too. Fortunately the new job has unlimited sick days, because dang I’ve been taking a lot of them this past month.

I’ve had to switch back to decaf because it turns out having even half-caf espresso every day has gotten me sensitized to caffeine again, and I was starting to have panic attacks again. Phooey. I still love my Flair though. I’ve also had a couple of people ask me about selling my custom tampers so I should see about, like, doing that.

Surprise frustrations

So, I am using way more soap than usual when washing my hands, which has been drying out the skin a lot. To try to counteract that I’ve been using lotion a lot more. But it turns out that this leads to more tactile stimulation on my fingers (basically I constantly feel like I’ve just been soaking in the bathtub for an hour) which in turn leads to a sensory overload/pain flare, and it doesn’t even help with the dry skin anyway, and the dry skin also leads to its own level of sensory issues too. And Fiona’s insistence on sitting on my lap while I work isn’t helping at all. Just before lunch I had a bit of a meltdown because of it.

I guess I need to figure out a better way to periodically clean my hands without leading to other issues.

I could also really use a haircut, because my wild scraggly hair getting in my face is making this worse. Of course all the hair stylists are (rightfully) closed right now. I suppose I could break out my Flowbee but that feels like it’s taking the “mental stress due to isolation” look a bit too far. (Plus I don’t want my hair to be that short right now. I need every femininity cue I can get these days.) Maybe it’s time to finally learn how to use hair clips, but I suspect feeling them bouncing against my face would make me flare too.

Why is my brain like this? Ugh.

Living in a future ghost town

Pretty much all of the tech companies (mine included) have moved to a “work from home unless absolutely necessary” policy. We’re all suddenly getting into a remote-worker mindset — which I think is a long-term good thing, but it’s jarring. Looking out my dining room window I still see a typical amount of foot and car traffic for this time of day, but there’s an air of desperation and paranoia. Maybe I’m just projecting though.

My own symptoms have all but cleared up. I do have a persistent ache in my back and shoulders, which I’m not sure if it’s attributable to this mystery illness or is simply my fibromyalgia flaring up as always. My temperature is back to normal. I’m still coughing on occasion but it’s infrequent, and it’s gone from dry to productive. My shortness of breath is… well, still lurking, but doesn’t feel like an impairment at the moment. I’m still glad that I have a pretty strong reserve of albuterol, all the same.

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Balance

So, in anticipation of my new job starting next week I’m trying to figure out what the right balance of medications should be for my various neurological issues, and I’m not sure where the balance point should be. I’m mostly thinking out loud here, but I am going to try to walk through it and maybe folks with more experience can comment, or something.

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Why I’m open about my mental health (and other things)

Back in 2015, I was a complete mess, and I did everything I could to hide it. I was still having panic attacks regularly, and they would be brought on by the slightest provocation. But I felt, working in tech, that I had to be quiet about it, and just let things pass and things would get better if I ignored them.

One day a coworker did a thing that triggered a pretty big panic attack. It wasn’t anything malicious on his part, just a cavalier, morbid joke in gestural form that happened to tread upon one of my biggest triggers.

I felt awful, and I wanted to keep from feeling that way again.

So I messaged him on our work chat, and told him that the gesture he made happens to be a huge trigger for me and I was having a pretty major panic attack as a result. And his response was incredibly helpful: he didn’t realize, he understood, and he wouldn’t do it again. And he stuck to that.

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Adderall so far

I’ve been on Adderall XR for a bit over a week now. It’s going pretty okay, except for the stuff that isn’t.

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Happy 2020

So, a new decade has started1. Hopefully this next one will go a lot better than the last one.

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wellp

That ended up not going very well.

It’s still a good to-do list of stuff I want to do, but making comics, working on AR stuff, and generally being in pain/depression while also figuring out my ADHD meds has taken a lot more out of me than I expected.

Really gotta stop being overly ambitious.