We've written before about my challenges with insomnia. Except for three days when I had covid, I hadn't slept the whole night through since early 2020. I've been following all of the advice on sleep hygiene and meditating, but to no avail. Until recently, anyway. Good sleep is a tool from The Dementia Toolkit, and it's probably the second most important factor in Alzheimer's disease behind aerobic exercise.
Insomnia is not new to me, but until 2021, it had never been that I would always wake up in the middle of the night and be unable to get back to sleep. When I was in my 50s, I tried zolpedim (Ambien) on a few occasions, but then saw some scary stories about what could go wrong with it. It was known to be habit forming, and I read somewhere that it prevented you from going into the "deep sleep" phase of sleep. As we discussed in Beating the Dementia Monster, this is the phase most important for preventing or slowing Alzheimer's disease. To minimize the risk of becoming dependent on zolpedim, I cut the pills in half and only used it rarely. And then, for most of my 60s, insomnia seemed to be less of a problem, and I didn't use zolpedim at all (or so I recall).
But that all changed in my late 60s and into my 70s. My neurologist (200 miles away) suggested that my primary care provider prescribe trazadone, but I didn't want to go the drug route. When I mentioned the neurologist's suggestion to my PCP, he expressed hesitation about any medication for sleep at all.
My sleep doctor was less hesitant, and in early 2021 he prescribed doxepin, which he preferred over trazadone. The very first time I took it, I knew we weren't going to get along. I was already having trouble with balance, but this threw off my balance completely. I also read that doxepin is bad for Alzheimer's disease, and my neurologist was horrified when I told her I had used it.
So my sleep doctor went ahead and prescribed trazadone, but I didn't get along with that either. It didn't seem to help much, it seemed to disturb my balance, and it gave me a rash on my face. Doxepin and trazadone are both antidepressants that promote sleep when given in low doses.
Next stop was ramelteon. Ramelteon, like zolpedim, is classified as a hypnotic. You can also think of it as a "super-meletonin," because it binds to all of the same receptors as melatonin, but more effectively. What ramelteon and melatonin do is signal the entire body that it's dark outside.
That's all they do. Melatonin is not truly a sleep hormone, it simply signals the body on what time of day (and night) it is. The hope is that the brain will take a cue that it's time to go to sleep because it's dark. But both my doctor and Professor Matthew Walker say that melatonin is simply an effective placebo. (But it never worked for me at all.)
Ramelteon, however, is not a placebo. It's supposed to help you get to sleep quickly, but it's said not to keep you asleep. Which was true for me. But I wasn't having trouble getting to sleep, I was having trouble staying asleep. And, while I did continue to wake up at about 1:00 a.m. every night, it also caused me to start falling asleep the next day. Even when I was driving a car! So when I experienced that, I stopped taking it immediately.
All of the drugs I've tried included warnings about causing depression. Ramelteon is the only one that did with me, although my depression experience was mild. That was another reason for me to give up on ramelteon.
Which brings us to suvorexant, or Belsomra. My sleep doctor gave me a medium dose (10mg) sample of it, and I fell in love with it immediately. I knew already that the FDA had conducted clinical trials specifically for Alzheimer's disease patients, and found that this was the only sleep medication that they would approve for them.
I read the clinical trial results on the FDA's web site which supported what I had read before. At least according to the trial reports, it is not habit forming and continues to be effective after extended use. (I'm not sure they followed the study subjects long enough to prove that.) It was also shown not to affect the balance of patients taking it.
My insurance company didn't seem to agree with the part about it not creating a dependency. They allowed me only a 30 day supply in 2021, which I used sparingly. But my doctor doesn't think that's a problem and has gotten the insurance company to allow me to have access to a bigger supply.
There are many review forums for this drug, and I've scoured them for as many user experiences as I can find. One thing I found is that, unlike me, a lot of people don't have a very good experience with it. Some find it simply ineffective (a couple of times it didn't work for me too), some reported bad dreams, some reported somnambulism (sleep walking). Some reported a fear that it would lose effectiveness with extended use, but I didn't see a report of this actually happening. And I didn't see anyone report that it created a dependence.
My big takeaway from reading the reports is that it seems to affect people differently. For me, I get to sleep quickly enough, and I usually sleep all night. If I wake up, I can usually get back to sleep easily. And I also feel that I sleep more deeply, and I am more rested the next day. I still dream, but no differently than when not taking it. I normally take it one night and then skip it for the next two nights. I find that I usually sleep well the first night when I skip it. Sometimes (not always) I sleep better than usual the night after that as well.
Will I develop a tolerance for it? So far, there's no evidence of that. So far, life is so much better than before I began using suvorexant.
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