Well, I suppose that’s the right way to start off an ME/CFS blog, isn’t it, with a big flaming crash?
This crash has the same cause as every one I’ve had since the end of 2007: Not sleeping.
After the night with the Zeo, my sleep cocktail failed. We had been increasing the Seroquel, which I was tolerating increasingly poorly. I’d always had to take beta blockers with it, because it increased my heart rate, but it was doing so more, I was needing more of it and it was doing less to help me sleep.
So there were three days of six hours a night, then three nights – I think – of no sleep at all. My memory’s not so good in there – when I don’t sleep, I don’t consolidate information, I forget when I usually do things that happen every day, like eat.
Anyway, at some point we connected with Dr. Cheney, (Chimp had to fill me in on the details here; I have no memory of this) and he said to move 40 mg. Baclofen, which I’d been using mostly as a backup, to the front of the night. So we did that, dropped the Seroquel out of the cocktail, and the weirdest thing happened: About two hours after I took the revamped cocktail, I was blindingly awake. Like I-just-shotgunned-a-gallon-of-coffee alert. I ring the bell by my bed, Chimp comes down, I’m telling him what’s up, and he says, “Why not take just a little of the Seroquel?” And I’m saying, no, no, I want to wait this out a little, but he convinces me. So I put it in my mouth, and almost instantly I feel this throbbing shift in my brain toward sleepiness. And it works.
I asked him the next day where he got the idea that a little Seroquel would help, and he said, “Honestly? The episode of M*A*S*H* where people get hemorrhagic fever. They’re under orders not to give them sodium, and they figure out to give them only a tiny amount.” So thanks, WTTG, for those endless reruns.
Reducing the Seroquel seems to have resulted in some stomach upset and some night sweats, which the internet tells me will pass. The crash itself has resulted in a fair bit of pain. I think today’s the first day since it began that I haven’t taken any pain pills during the day. That that’s passing is a good sign, and I seem to be recovering from it pretty steadily, though my brain definitely still feels a bit more leaden – less clever, less well-organized – than usual.
But to have a ME/CFS crash is not just painful; it’s a bad idea. Crashes are not a neutral occurrence; they make you worse temporarily at least, but sometimes there’s permanent function loss. too. My major crashes have happened in May 2004 (the dramatic onset of my illness), July 2006 (a heat wave and a power outage coincided to end my ability to commute to the office), December 2007 (when several months of insomnia resulted in my bedriddeness), and December 2008 (when more insomnia came pretty close to taking my life).
You can see why I don’t want to have any more of these.
My last few, as I said, have been caused by lack of sleep, but they can be caused by almost anything that pushes you beyond your limited capacity to deal – a minor illness, physical exertion, or physical or emotional stress of almost any kind.
The crash I had in July 2006, the one that ended my ability to commute to the office, was caused by a massive heat wave. The power went out, our apartment overheated, we had to get the cats out and to a hotel, and by the time I got to the lobby to check in, I was gasping for air and clinging to the desk so as not to collapse. We had tickets for CSNY the next night – I unwisely decided to go to the show. We left halfway through, and we had to get someone to get a wheelchair to take me from my seat to the door.
That’s a perfect example what you’re not supposed to do – I made that crash worse than it needed to be. Overdoing it physically has a particular name: it’s called a push-crash cycle – and you’re supposed to avoid the push so as not to have a crash.
Over time, what is a “push” for me has gotten smaller and smaller, though I’ve gotten better at respecting my boundaries, even as they’ve become more and more constraining. Some people are unlucky this way and get what seems like a progressive version of the disease. But I do seem to be coming back from this crash pretty steadily, I have an effective sleep cocktail again, and I hope it will work until I’m miraculously healed.
You are so brave and amazing!!
You know, that’s usually why I get sick – lack of sleep or just in general getting stressed out and overdoing. Of course I’m lucky in that I’ll catch a cold and feel gross for a week or two and nothing more. Anyway, I can relate to the idea of respecting your boundaries – it sounds so simple and yet is so hard to do.
Darlin’ …. your detailed descriptions should ( I think) contribute to Dr. Cheney’s body of data, for you especially, and perhaps for the greater community. Every anecdotal data point must be valuable.
Thank you, Chimp, for your clever suggestion.
Just a tiny amount. Works for me!
Yes. I don’t know if this will head off any of the famous potential long-term ill effects, but I would rather not be taking a trough of the stuff.
That was a brilliant workaround. I totally remember that M*A*S*H episode, too.
I’m so glad you’re sleeping better…I trust it will continue!
Pingback: Happy Blogiversary to Me | No Poster Girl