Health Update

I haven’t spoken about my health extensively here in a while. It seemed like every time I was getting better, I was speaking too quickly. At this point, I’ve been feeling better for a few weeks so my three month illness has largely abated. As those following it know, I got sick a couple of weeks after coming back from Egypt. First it was flu-like symptoms, then I developed a weird, low-grade, fever that would come and go, especially with activity. Following with that, I developed a fast heart beat and high blood pressure with persistent headaches.

All of those symptoms seem to be gone now. I’ve been weaned off of the beta blocker that was controlling my blood pressure and heart rate. I’m on day two without it. I’ve worked out without it and my blood pressure has been normal or even better than it used to be (before illness) since I stopped. I’ve been working out on the exercise bike at least four days a week for 35 minutes at a time since the beginning of the month and my blood pressure seems to be improving overall.

My only lingering issue is a sleep disorder that developed during the illness. While I was having the fever, I developed a problem falling asleep and staying asleep (due to sweating, flushing, etc.). I was put on Ambien in early December and I took it for a month. It never worked very well but I could get three or sometimes four hours of sleep a night. It quit working after a month and I stopped using it (and the fever was gone). I then realized that I’d developed some sort of myoclonus, which is that I would get random muscle spasms as I drifted from being awake into sleep, just as I was falling asleep. I had a CT Scan and an MRI, working with a neurologist, and no issues were found so it is assumed to be caused by stress on my nervous system due to the illness and possibly not sleeping a full night in over two months.

I was given Klonopin (Clonazepam) for it at the beginning of February because of the muscle spasms getting in the way of sleep. This suppresses the spasms and acts as a mild sedative. Since then, I’ve slept every night but one, really, which has been nice. The problem is that it is an addictive substance. My neurologist feels that 1mg once a day (at bed) is not a big deal and that I should take it for a month or so. My primary care doctor (a new one that is quite good since my old one was not) wants me off of it as soon as possible. She told me on Tuesday that I should go down to .5mg immediately (it had been two weeks on 1mg) and I’m seeing her this next week. I added 3mg of Melatonin last weekend as well, which seems to help with sleep onset.

I’ve had a couple of nights where I’ve taken only .5mg and slept fine. Unfortunately, I’ve also had one night where I did that and slept not at all (and one where I did that and sort of slept off and on). I don’t want to particularly take this habit-forming drug but both my neurologist and the on-call doctor in my primary’s practice think that 1mg once a day is a pretty low dose and I shouldn’t worry about it. Obviously, doctor’s disagree with one another.

I really don’t want to be on this stuff. I just want to lay down and sleep like I did before the illness. I’d rather take the .5mg but not at the expense of a sleepless night. Of course, the anxiety around this when I go to sleep is certainly a contributing issue to sleeplessness. What to do?

The Klonopin is the last drug I’m on related to this whole saga of my illness but it is unclear to me how to stop taking it and just get a good night’s sleep. I never had insomnia in any major way in my life before all of this. In fact, before a month ago, I’d never stayed up all night, unable to sleep, even when I had panic attacks years ago.