I didn’t think anyone would be particularly interested in my sleep medicine saga, but I wanted to write it up because that’s one of the ways I process things. So I wrote it as a really long facebook status (I know, I know, facebook is not far from public) and figured people could choose to read it or ignore it. I expected most to ignore it, and I was therefore fascinated to find that it got a lot of attention. Maybe there is a hitherto unexpected hunger out there for information on sleep disorders and doctor shopping. Or maybe my facebook friends are just weird. You decide.
For those interested in tales of bizarre sleep therapies, read on. For those who are not, I’m sure there are some cat videos further on in your feed. Move along, and whatever you do don’t make eye contact with the crazy lady.
My sleep is lousy and has been for a very long time. I went to one sleep specialist who agreed there was a pretty severe problem. He did a sleep study on me (which involves being wired up like a processor board and then told to “sleep normally” in a hospital bed) which proved that, yup, my sleep is woeful.
The study showed mild sleep apnoea and a whole lot of unexplained, but extraordinarily poor quality sleep. My doctor therefore declared that there was no real problem, and very helpfully suggested I lose weight. Let’s not even talk about how hard it is to diet when you are beyond exhausted. That’s only a minor issue. It turns out that sleep deprivation actually changes your blood sugar regulation making weight gain more likely.
Let’s just say that particular specialist didn’t get another visit (except in my dreams where I shouted at him a lot). What I was dealing with wasn’t the problem he was looking for (severe sleep apnoea), therefore as far as he was concerned there wasn’t a problem. This seems to be a surprisingly common attitude among specialists. “You don’t have my problem, so you don’t have any problem.”
I felt utterly defeated,and quite desperate. After doing a lot of reading, and against the advice of my specialist, I treated the mild sleep apnoea with a CPAP machine (Continuous Positive Air Pressure), which helped a lot, but didn’t quite get me over the line. The initial bounce eventually settled and I remained exhausted. Not as exhausted as I was before, but it was still dragging my quality of life way down. In despair, I slugged about feeling rotten for months. Feeling exhausted all the time is second only to being in a lot of pain all the time – I have tried both, and I really don’t recommend either!
Finally I decided to try a different specialist. I went back to my GP who didn’t know who to recommend, so we perused the list and eventually chose one for the very technical reason that he was nearby. Well. That turned out to be an extraordinarily good move. This guy listened. And cared. And talked about evidence. While the previous specialist seemed rather disconcerted by the way I turned up to our first appointment with graphs, and horrified by the way I wanted access to the data from my own sleep study, this new doctor actually seemed to find my nerdy, data-centric approach useful. After a full, frank and quite entertaining exchange of views, and a few attempts at more conventional therapies, he suggested sleep restriction – basically an attempt to persuade my body to maximise its sleep quality by restricting the amount of sleep it has access to. Not for the faint hearted!
Taking an exhausted person who is getting around 10 hours of sleep per night and suggesting she cut back to 6.5 is a brave move – my kids were concerned it was some kind of oblique murder attempt aimed at them – but I was desperate enough to try anything. In a move that endeared my doctor to me no end, he was quite open about the fact that although it is well studied and documented for insomniacs, there is limited evidence for sleep restriction in cases like mine, where the sleep quality is poor but getting to sleep and staying asleep is not a problem. He was very clear that it was a long shot, but I figured it was worth a try. I’m a sucker for scientific honesty.
So for 2 weeks I cut back to 6.5 hours of sleep per night and went quite spectacularly mad… and then, quite suddenly, it started to work. Subjectively I was feeling a lot better, and objectively my actigraphic sleep tracker was actually showing flat spots – I was lying still! – as much as 75 minutes long. This is something I have never seen before. My usual sleep pattern has no flat spots at all. Constant movement is my theme – I sleep like a threshing machine.
Interestingly when I extended the sleep back out to 8 hours the wheels fell off, so it’s back to 7.5 for me, and maybe 7 if that’s no good. I can tinker with it from here to get it as close to perfect as possible. But there is light at the end of the tunnel. I’ve had a couple of days of bounce – and it’s been a long, long time since I have bounced. If this really works my students are in for quite a shock.
There is one chief lesson I take from this, which is that when a doctor tells you that you don’t have a problem, or that nothing can be done, you have only his or her word for it. Doctors are as fallible as the next person, and the human body is far more complex and variable than we really know how to admit. Just because one doctor is stumped, or uninterested, doesn’t mean that there is no-one out there who can help you. Finding a doctor who takes you seriously, listens, and is willing to experiment, is sometimes a challenge, but it is definitely worth the struggle.
The second chief lesson is that your health is in your hands and nobody else’s. You don’t have to do what you are told by a doctor, however eminent, and you are always entitled to a second, third, or even fourth opinion. Medical professionals may rail against “Dr Google”, but an educated patient is best equipped to participate in his or her own treatment. I don’t have medical training or specialist knowledge, but I need to understand my own condition and explore my options. A doctor who doesn’t think that’s a good idea is not someone I can work with.
The third chief lesson (I’ll come in again) is that quality sleep is the foundation of absolutely everything, and more sleep is not necessarily the answer. I was tired, so I slept more, which worsened my sleep, so I slept more (I think you can see where this is going). I needed expert advice to fix that, but I needed a good relationship with that expert to make it possible. Some relationships are never going to work, in which case you should not hesitate to move on and find one that does. It can change your whole life.
Now if you’ll excuse me, I have some bouncing to do.