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Miscellaneous goings-on

I’ve been on guanfacine for a few days and so far I’m not noticing that my focus has changed any, but on the plus side my blood pressure is great now. So, that’s good.

I don’t know if it’s from the naltrexone or the guanfacine but my dreams have been pretty vivid and weird, but usually in a good way. Unlike when I was on the Wellbutrin and my dreams were vivid and stressful.

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So much for Wellbutrin

Yesterday I was feeling pretty off, in a “wow I think my blood pressure is spiking again” way. And I happened to have an appointment at the pain clinic, and they measured my blood pressure at 160/90, which is, you know, Pretty High. At the time I chalked it up to having walked over there in a hurry, but throughout the afternoon and evening I kept measuring it and it remained that high.

And then all night long I had a hell of a time sleeping. I only got around 3 hours of sleep total; most of the time I was just lying awake, blood pounding in my ears, feeling like I was going to die. At 3 AM I also checked my blood pressure again and it was 160/100. Yikes.

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Current state of affairs

I’ve been on Wellbutrin for a couple of weeks now and the effect has been interesting. I’m definitely finding it easier to focus on things like chores (and heck, my kitchen is the cleanest it’s been since the remodel got finished, and my dining room is well on its way to not being a disaster), but on the other hand it’s disrupting my sleep a lot and I end up feeling tired throughout the day. My dreams have also been way more intense.

Right now I’m feeling sick with my usual winter sinus crap, so I’m a bit wobbly and a lot nauseous.

Between the Wellbutrin and playing DDR my pain levels are a bit lower but still not amazing, and I’m still finding it easy to hit a fibro wall™. Tomorrow I have a followup with my pain doctor to try to finally get on low-dose naltrexone. I also have the next two weeks off from work and hopefully I won’t end up just working too hard on personal projects instead. (That said, I have a couple of creative output gift swaps with deadlines coming up that I really should start on at some point.)

Anwyay I guess I don’t have a lot else to say. Oh well.

Updates

Had an appointment with my psychiatrist today. Turns out I was supposed to get a drug screen some time ago, oops. But I’m not that interested in stimulant-based meds anyway. For now we’re going to try Wellbutrin, which is I think what we were talking about last time anyway and it doesn’t need a drug screening. So that starts tomorrow morning.

DDR pad arrives sometime tomorrow as well. Just in time, too, the pad I’m borrowing from Spud has decided that the down button doesn’t really need to work right.

I hope all this stuff helps me to get motivated at work, because holy crap I am having a hard time finding the energy to actually, y'know, work.

Pain management and ADHD medication

I seem to be stuck in an annoying situation.

Short recap: I have both ADHD and fibromyalgia. These two conditions tend to have a lot of overlap (they are both thought to essentially be dopamine dysregulation issues), and both of them have a “let’s try different things out” treatment regimen.

Because of ADHD I have great difficulty in focusing on my work.

Because of fibromyalgia I have great difficulty in focusing on anything other than pain.

The medications which help me with fibromyalgia preclude me from being prescribed medications which help me with ADHD.

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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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The sorry state of medication reminder software

I use an app called Medisafe to give me my medication reminders. It’s useful because it tracks my doses and also tracks how much I have left so I know when to order refills and so on. I’ve been using it for years.

Unfortunately it has a critical problem in that it only sends three easy-to-miss reminders spaced ten minutes apart with no way of configuring it. So often I’ll end up taking my medication a few hours later than the scheduled time, because I head to bed and notice the pending reminder that I meant to fulfill.

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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.

Disordered thinking

I have always been a night owl. Society in general shuns the night owl; waking up early is to be praised, you’re a go-getter, you’re proactive. Waking up late means you’re lazy, you’re irresponsible. Medicine is finally waking up1 to the reality that different people have different natural sleep cycles, and this is okay, but their way of describing this is by calling the late-shift folks “delayed sleep phase disorder.”

People who are trans are told they have gender identity disorder.

People whose brains process stimulus differently and have a tendency to hyperfocus on problem-solving are told they have attention deficit disorder.

These aspects are framed as being outliers, deviations from the norm, problems to be fixed.

Disordered.

All these things that are inherent to me are framed as being problems. Things to be ashamed of. Things to cure.

But they are the things that make me who I am, and which give me strength.

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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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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.

Caffeine acclimation

I’ve mentioned before how I used to self-medicate my undiagnosed ADHD with a trickle of caffeine until I started getting anxiety problems from it. I’ve also mentioned how post-diagnosis I’ve had trouble finding a medication which has worked for me, and I’ve tried slowly reacclimating myself to caffeine during periods between medications.

At my new job we have a pretty decent automatic espresso-drink maker, and out of curiosity I’ve tried slowly consuming one coffee drink over the course of each morning, and so far that’s actually working pretty well for me. Inasmuch as it’s not giving me a panic attack. It hasn’t really helped me with my focus, but maybe this is a sign I can try having more and maybe it won’t make me feel like I’m going to die!

I’m not about to start slamming the energy drinks or anything, but still, I’m glad that I’ve at least been able to get back a thing that’s been missing for the past decade.

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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Adderall pluses and minuses

So, on the plus side, Adderall XR has been helping me quite a lot with my focus and executive functioning.

On the minus side, I’m having several of the unpleasant side effects: greatly increased blood pressure, numb toes, migraines/nausea (starting yesterday or so), and constipation.

I was really hoping I finally found something that works for me. Maybe I should stop taking it for a couple days and see how I feel. Because right now I just feel bad.

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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First day on Adderall XR

So after Concerta turned out to be not a great fit for me I stopped taking it, and decided to wait until my next psychiatrist appointment to try something new.

That appointment was on Wednesday, and the psychiatrist decided that Adderall XR (10mg/day) would be the next logical thing to try. The prescription arrived yesterday (Kaiser’s mail-order pharmacy works fast!) and so I took my first dose this morning.

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Bleh, Concerta

So I was taking 18mg of Concerta for about a month and found that I tolerated it well, although it wasn’t helping my focus any (and if anything it made me drowsy). So I asked to go up to the next dosage.

So, yesterday I took 27mg for the first time (at 8:30 AM as usual), and it didn’t help me with my focus, but it sure as hell made me feel irritable all day, and my heart rate just progressively went higher and higher throughout the day. At 9 PM it suddenly went up to 130BPM while I was sitting down, and I could feel it pounding too. I finally fell asleep at around 2 AM, and my bed said my heart rate pretty quickly went back down to normal.

Today I opted not to take it at all and I emailed my psychiatrist saying I was going to discontinue it, and I’ll just try self-medicating with caffeine until my next psych appointment in a few weeks, unless she has a specific recommendation for a different thing to try.

Sure would be nice if brains came with user manuals.

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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