Insomnia

I developed Insomnia in early July last year. I have struggled with it a lot, been in some really dark places and have had it completely uproot my life. I keep thinking I’m getting it under control, only to have it come back with a vengeance. This week has been hard, and just yesterday I was having a breakdown over insomnia, having not been able to get to sleep until 5am. I also understand the condition a lot better than I did at first, and it’s this understanding which is more or less the only thing that gives me hope that I can improve. I’ve realised that recently I’ve seen a lot of others having difficulties with Insomnia and I’ve had a lot of conversations about what it’s like to have it. Sometimes I wonder if I can help anyone but myself. This is my story with insomnia.

Starting not at the beginning, but at its worst – mid November last year. I managed to sleep once every 3 days, the other two nights being completely sleepless, all while spending 10/11 hours a night in bed. Stealing someone else’s words, I was “immune to medication which could put a horse in a coma”; I was taking sleeping pills more or less every night, and the effects of the pills could be almost as bad as not sleeping. I had constant headaches. I had this constant brain fog, and could not concentrate on anything. As a software engineer my job relies on me using my brain, and on me being able to do complex high level reasoning on a daily basis. My productivity fell to the floor, and most days I was completely unable to focus on work. I took several days off sick, but only after consecutive nights of 0 sleep. I could struggle to do a task as simple as walk a couple of minutes down the road to the local shop to buy some bread. I was living day to day, just trying to get through each day, and I had constant suicidal thoughts. Important note: Thoughts are different from actions, and I have never been suicidal; I do not want to die. What I’m stressing here is that I was at a really low point, and in a really dark place.

All sense of joy for life had been sucked out of me. I didn’t want to make plans anymore, nor did I think that I could. I didn’t feel able to commit to anything. I kept stumbling along to things when I felt vaguely able, but had a constant anxiety about sleep, and started getting fearful whenever an evening wore on. I ended up just sort of vegetating a lot of the time. This all obviously had a big effect on the relationship which I was in at the time. For the record she tried a lot to help me, but my struggles brought her down as well, and I soon started to just keep all my struggles bottled up. Insomnia was ultimately a big factor in the breakdown of our relationship.

You may be wondering “well, it seems like you should have seen a doctor/searched for help”. I did. The first time I saw a doctor I was given some more powerful sleeping pills; they were pretty nasty and I didn’t use them for more than a week, realising that they’re something it was possible to develop a dependency on. The second time she agreed that insomnia was probably an anxiety thing (more on this later) and gave me some pills for anxiety. I asked her if it was possible that they have an effect on heart rate (something which didn’t sit too well with me, and I had been doing a bit of research on anxiety medication). She assured me they definitely didn’t. When I got home the first thing I did is to read the print with the pills which clearly state they affect heart rate and actually say they frequently cause insomnia. Needless to say I never took a single one of those pills.

The other approach is to look for mental health help. As became clearer to me later on (maybe it was at the time), insomnia is very much an anxiety condition. I had been told by doctors that the wait time to see a councillor on the NHS was some stupid length of time (> 1 year time frame), so I looked at what private health care cover I had with work. I was given this phone interview, which is a kind of triaging. The approach seems to be to look at Generic Mental Health problem and give me the Generic Mental Health Questionnaire that the entire UK seems to use. I recognised it from a course of CBT I started for something else a few years ago, which I found less than helpful. I was then sent an email suggesting 1 generic councillor who lived close but I could only video call and a further 2 who lived not very close. All of this seemed quite useless to me, and I felt very much on my own.

Until my low point I had assumed that I could shake insomnia off, or maybe just not thought about it a lot in the long term. From July until November I had what is called Maintenance Insomnia; I was able to fall asleep relatively easily but I would constantly end up waking up at awkward times like 4am and then not be able to get back to sleep for the reset of the night. One night in November I was going to bed thinking “well, what’s so different about me going to sleep now compared with in the middle of the night” and my body responded with “you’re right. Here – have some Onset Insomnia as well”. (Onset Insomnia is a failure to fall asleep in the first place). So now no sleep was guaranteed and I was getting entire nights of no sleep.

At this point I started to research Insomnia in earnest. The problem with insomnia is that everyone seems to have an opinion on it. People think they can relate because they’ve had a few bad nights of sleep, or because they can take a long time to fall asleep sometimes. There are countless websites and people who, with good intentions, will say all kind of things about having wind down routines, or ensuring your room is dark, or at the right temperature. They might talk about sound, or making sure you’ve done exercise in the day (this one might actually be helpful. I’ve never not done exercise so I don’t really know the difference it makes), or not taking caffeine, or cutting back on alcohol, or having herbal tea, or having a lavender scent in your room. All this kind of stuff is called Sleep Hygiene. While not to be dismissed entirely, it is not helpful to someone with chronic insomnia. If something so simple is causing someone sleep problems, they’ll probably get to the bottom of it pretty quickly. Apparently when testing sleep therapy, sleep hygiene is what they give the control group as a placebo.

One of the most useful, actually helpful, resources I found is a book called “The Sleep Book” by Guy Meadows, and I quickly devoured the entire thing in a handful of days while at my absolute lowest point. Another useful resource has been the website insomniacoach.com.

When I started to look into these resources I was able to lift myself out of insomnia for a while. In January I started to really feel like myself and feel human again for the first time in probably a year or so (I had other anxiety issues leading up to having insomnia). Unfortunately it eventually came back again.

With the resources mentioned I started to understand the mechanism of sleep better. It turns out that sleep is a completely involuntary thing, meaning that it’s not something which we have conscious control over. That may seem obvious to say, but it’s important. It turns out that my problem preventing me from sleeping wasn’t so much with the thoughts I was having, but the way that they made me feel. It’s something I’m sure many people (insomniacs and anyone who has ever struggled to fall asleep) can relate to – you’re in bed and realising that you’re not falling asleep. Then you realise that you’re thinking about sleeping and surely you can’t sleep while you’re thinking about sleeping, so you try and force yourself to think of nothing so that your brain can switch off and you can fall asleep, but it doesn’t happen. Turns out that this process of trying to control our thoughts is itself quite stressful and requires attention to do. Two things that are really bad for relaxing. Instead I’ve realised that the goal is to reduce anxiety, and accept whatever I am thinking about or feeling (a lot of mindfulness in this). When I’m relaxed (which is difficult), I fall asleep pretty easily.

The main principle in “The Sleep Book” is something called ACT-I (Acceptance and Commitment Therapy for Insomnia). The premise is that you need to accept bad nights of sleep without having negative thoughts associated with them. You need to put yourself into a state, long term, where the odds are stacked in your favour. What this means is that it doesn’t really matter if you don’t sleep tonight, what matters is that you feel relaxed in bed and you’re putting yourself in a better long term position.

I also started to learn about how the body conditions itself. It turns out that spending too much time in bed (like I had been doing) is the worst thing that you can possibly do. It seems obvious at first – you don’t sleep enough so you spend more time in bed trying to get the sleep that you desperately need. Only no-one actually sleeps for 10/11 hours a night (well, definitely not a chronic insomniac anyway). Turns out what this does do is it means you spend a lot more time in bed not sleeping. It means that the body starts to associate being in bed with a stress response. Just like Pavlov’s dogs learned to salivate (read: were conditioned into) upon hearing the sound of a bell, I had conditioned myself into having a stress/anxiety response to being in bed trying to sleep.

While I may have been able to shake insomnia early if I understood it, now that I have this conditioning it is very hard to break. I often wake up in a panic. I have this sort of anxious feeling in my chest that I can’t shake. I tell myself that it doesn’t matter if I sleep tonight. I tell myself that all I have to do is control the anxiety. I tell myself that I am just being anxious over feeling anxious, but often I still can’t break this. I think one of the problems I have is that I really do struggle to function on any day where insomnia has been bad, constantly and throughout the whole day. I find it difficult to see  the positives in a day where I just feel empty.

With this I’m now going to explore again what I call “the hammer”. i.e. doing some of the things insomniacoach.com teaches and calls CBT- I (Cognitive Behavioral Therapy for Insomnia). Ignoring the fact that I had a low impression of CBT from past experiences, one of the main tools that this uses is something called “sleep restriction”. The idea is to limit the time spent in bed to slightly more than the average time that you actually spend sleeping. Past the short term, the idea of this isn’t that it actually restricts sleep, it restricts time spent in bed not sleeping – it reconditions your body into associating bed with being relaxed. The idea is that you keep a consistent sleep window, don’t go to sleep before the start of the sleep window, and enforce the end of it with an iron fist. It also notes that you should never go to bed before you feel sufficiently sleepy. It turns out that our sleep drive is really strong if you give it enough stimulus, and if you don’t feel sleepy at the beginning of the sleep window you should not go to sleep.

This notion that I should go to bed late and use sleep drive to fall asleep is something which has allowed the past few months to be, in general, a lot less painful than when I was at my absolute low point.

It is also something which I wasn’t sure for the longest time would work. Remember me mentioning that when I was at my absolute lowest point I could get consecutive nights with 0 sleep at all. Well – I learned something. I learned that I could have a very different way of sleeping to a normal, healthy person. I could sleep without truly losing consciousness, and I would have no idea that I had slept except that a lot more time had passed than I would expect. If you asked me if I had slept, I would be absolutely adamant that I hadn’t. If I actually forced myself not to be in bed at all for the whole night it would be a different story and I would be exhausted on a different level. This apparently is quite common in insomniacs (although I’ve only seen this mentioned in one or two places).

Anyway, I still have issues with insomnia. The last few days have been very hard for me. I often have weeks on end when I feel like I’m getting on top of insomnia, only for everything to come crashing down on me again. I hope that if I can commit myself to sleep restriction and start to override some of the fundamental mind conditioning which I’ve accidentally subject myself to.

I realise that I didn’t mention how I got insomnia in the first place. Largely, this isn’t something which matters, because once that triggering event has gone it doesn’t really matter what it was. For me I had had other anxiety conditions beforehand. I had had a few months where I needed to pee every 10/20 minutes. I had a load of tests and everything was negative. Eventually that went away, and I had some issues with acid reflux and then general panic attacks. I eventually managed to put all this down to anxiety. I felt relatively normal by late June, but bought a fitbit (second hand) because I thought that monitoring my heart rate would be a good idea (because it was something I was worrying about).

Turns out the first night I went to sleep with the fitbit on I was monitoring my heart rate a lot, and I was also aware that it was tracking my sleep (which I didn’t think anything of at first). I became a bit obsessed with my heart rate and was worrying that it was too low – I saw it go as low as 38 beats a minute at one point. This all meant I woke up and was thinking about sleep, and then didn’t. This continued the next couple of nights, and a problem was born. I obviously stopped wearing the fitbit to bed, but that didn’t help once I had been triggered. Also for the record, I’m not too worried now about my low heart rate – I think it has always been like that, and I have a very high level of cardiovascular fitness, spend all of my time cycling and doing exercise and don’t have any other problems relating to this.

I hope that that this, longer than expected, essay has been helpful, whether you’re having difficulties with insomnia like me, or just wanted to understand my condition a little bit better. Hopefully the next few nights will be kinder to me, and I’ll learn to be kinder to myself.