fluffy rambles (ADHD)

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.

I’ve been on guanfacine for about a month now, and I still haven’t stopped feeling drowsy and tired all day, to the point that I’ll often just fall asleep in the middle of things. Even when I’m doing things like grocery shopping I’ll suddenly feel really tired and need to take a couple moments to brace myself. It’s almost like it’s causing narcolepsy or something.

Last week I talked about this with my psychiatrist and we decided to try combination therapy with strattera, a stimulant-based med, since my ADHD responded well to the Adderall (aside from my blood pressure spiking badly).

So far, it hasn’t been helping at all. I’m getting the panic and anxiety from stimulants, while also being drowsy all day. What’s even worse is I’m also getting frequent muscle spasms, which is apparently a common reaction to some ADHD meds. And ironically, the treatment for that? Guanfacine.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.