Nortriptyline etc.

Early on when I started using nortriptyline I seemed to be having some results but I also admitted it might be a placebo. Over the last four months since then it’s become more and more clear to me that it isn’t actually helping me with anything at all.

It’s supposed to make me sleep better but my sleep is just as restless and terrible as ever.

It’s supposed to help me downregulate my pain but if anything my pain response has only gotten more severe.

I’m also dizzy and tired all the time, and have pretty much constant headaches.

I thought maybe it was time to increase my dose, so I did a bit over a week ago. And the last week has been even worse than it was before I started on nortriptyline to begin with.

So, it’s clearly not working for me, so I’ve started to taper off of it. Probably really bad timing for it what with IndieWeb Summit next weekend and then a week of visiting family immediately after, but I’ll still be on a dose of it during that (I’ll probably step down by 10mg/week).

It’s frustrating that this hasn’t worked out, and I was really hoping to have something that works for me by August but hopefully I’ll figure something out.

Over the last few days I’ve also started taking magnesium supplements again; I remember it helping me somewhat with anxiety a few years ago, and there’s considerable research which shows that it’s actually fairly promising for some. And between reducing my nortriptyline dose and starting back on magnesium, I’m feeling somewhat better today, at least, although that could very well be placebo effect combined with the fact I did basically nothing yesterday.

I want to be able to get back into doing the stuff I love doing. I miss making comics and being able to play music and even being able to be even vaguely functional at work. I’m determined to find something that will let me get my life back.

Progress resumed?

So, just an update from my last bit on discontinuing my CPAP. I feel like I’m back to where I was before the CPAP started causing problems, and I’m also up to 30mg of nortriptyline and that’s feeling fine. I also heard back from the sleep clinic today and while the doctor still hasn’t had a chance to go over my sleep study (I guess she’s been out of the office for some reason) the clinician agreed that I should stay off CPAP for now if I’m feeling better without it.

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Backslide

So, whatever positive effect I’ve gotten from the nortriptyline isn’t enough to make up for my current baseline pain levels. At least I’m able to get out of bed again (unlike a week ago) but holy moly do I fall into agonizing pain after not doing a whole lot. This weekend I wasn’t even capable of doing my usual 3-to-5 miles of walking a day, and I’m thinking tomorrow I might end up having to take a bus or even a Lyft to work. Very frustrating.

Also, lately I’ve noticed that the extra weight of my iPad in my purse is taking its toll on me. I should probably switch back to using my backpack as my main conveyance; it’s heavier but at least it’s symmetrical and puts the stress on my back rather than my shoulder and neck.

On the plus side, I’ve finally gotten my CPAP working well enough for me. I ended up finding a decent video on how to adjust the nasal pillows and those have turned out to be much more comfortable, given a second chance. The face mask ends up being too disruptive for a bunch of reasons (the slightest movement makes it leak around the sides and I have no way of scratching my nose without hecking the fit up) and I somehow managed to lose the nasal mask (which was nearly as bad as the full mask anyway) so the fact that I’ve gotten the one I’m “supposed” to be using to work reliably and comfortably is nice.

I still feel like it disrupts my sleep somewhat, though. I hope that’s just a matter of something I Need to get used to. Hopefully I’ll eventually start getting reliable deep sleep on it once I’ve fully acclimated.

Anyway. Being up this late and typing a blog post isn’t exactly helping. But I figured an update was in order.

Ongoing stuff

So, Friday I took a day off from my day job to go out to Quincy, WA to visit the Quincy Valley Historical Society and Museum, a farming museum which the AR startup is doing an app for. It was an interesting trip and I learned some stuff, although mostly we were there to guide the filming of greenscreen footage that’s going to be part of the app.

Quincy reminds me a lot of Las Cruces, where I spent a total of 8 years as a college and graduate student, only it’s even smaller and there’s no university.

Anyway, Friday night I didn’t sleep particularly well, then Saturday we drove back and after a brief nap I went to a local Twitch streamer meetup and met a bunch of people. Which was a good time and I made a bunch of contacts, but unfortunately the combination of that with the previous day meant I was already pretty much at my spoons limit.

Then Sunday, because of the dumpster fire that is Daylight Saving Time, all those dirty spoons got thrown into my garbage disposal.

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Treatment progress

On the nortriptyline front, I’m up to 20mg/day and it’s feeling fine. It hasn’t solved my fibromyalgia forever (and after a day of typing and whatnot I’m still in pain, and my pressure points are still indicative of fibro) but it’s helping me a lot all the same. An unsurprising-but-nice thing is that it’s also vastly reduced my anxiety, which isn’t too surprising since that’s one of the on-label uses of this medication that I’m technically taking off-label. Does that count as a side-effect?

On the CPAP front, I’ve switched back to the nasal mask and it’s actually working pretty okay for me. I think the machine has finally learned to reduce its pressure because I’m a lot more comfortable throughout the night, although I still end up waking up at around 4 AM and taking it off so I can scratch my nose. Still, I’m generally feeling a lot more refreshed in the morning. I just need to get in the habit of putting it back on after I wake up and take care of the itching.

Also my cats have gotten used to it, which is nice.

CPAP and Nortiptyline

Only too late did I realize that trying to adjust to a CPAP machine while already adjusting to a brain medication (that has weird effects on sleep) means that I am once again doing things on hard mode. Oops.

So far I’ve had two nights with the CPAP. The first night I didn’t get any real amount of sleep while on it and ended up taking a nap after I “got up” in the morning. The second night I did a bit better when I stopped worrying about paying attention to my breathing, although that’s hard to do.

Probably the weirdest thing about a nasal CPAP mask is that if you open your mouth, the air gets forced out through it and causes a sort of reverse snore. And it feels really weird. So if I need to talk to a cat, for example, things go strange.

Anyway the lack of sleep has made me feel like I’ve gotten a pretty big setback with chronic pain stuff; the day before CPAP, I was feeling pretty good, and over the last two days my major chronic pain has come back all over and in a big way. I’d hold off on the CPAP for now except insurance will only pay for it if I average 4 hours per night over the next two months, and I feel like in the long term CPAP is much more important for my pain stuff than nortriptyline probably is.

If tonight doesn’t go better I’ll probably go without CPAP tomorrow night though, because I have to be in good shape pain-wise on Tuesday (since I have a couple of big tasks at work plus I’m getting a bunch of cavities filled in the afternoon).

Nortriptylene day 4

Are these updates getting annoying? I figure that the point of having a blog is to be able to do bloggy stuff again, and if people only want to subscribe to Bigger Things they can subscribe to the category-specific feeds on my site or whatever. Or they can skip/skim these entries.

Anyway.

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