Pain management and ADHD medication

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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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