So Many Sleep Disorders

After posting about my fears leading up to my sleep specialist appointment, my intention had been to post soon after with the “results” but this didn’t happen. I was struggling against the sleep-deprived exhaustion that led me to this appointment in the first place, and like most teachers/tutors out there I was just trying to make it through to the end of the school term (I made it – yay!) I’ve also been working through the fact that I don’t entirely know how I feel about it all. Writing this blog gives me an outlet for my emotions, and helps me process them, but it’s not so great when I don’t really know what I’m feeling or how to articulate any of it. While the news from the specialist wasn’t devastating, it wasn’t the magical cure I was secretly hoping for either and about half the things on my list of fears did happen.

The result was (of course) I’m “complicated”. I guess I would have been shocked if it was anything else really. He felt fairly certain that I have Delayed Sleep Phase Syndrome, but this only explains why I struggle to get to sleep, and have natural sleep and wake times that are out of sync with the rest of the world. When it comes to the waking dreams, “sleep walking” and screaming in my sleep, there are elements of three different sleep disorders (REM Behaviour Disorder, Confusion Arousal, and Hypnogogic Hallucinations) but there are also aspects that are inconsistent with each of these. With REM Behaviour Disorder, patients remember nothing of the episodes, or have only very vague memories, whereas my memory of what happened is usually clear and often very detailed. Confusion Arousal episodes don’t involve the level of dream elements I’m experiencing, and patients usually just go back to sleep without too much disruption. What I’m experiencing seems most like Hypnogogic Hallucinations (this is the disorder I originally thought I had), however people who experience this are paralyzed during episodes, which I am obviously not, given my penchant for running around and injuring myself!

So at this stage, the specialist is not able to rule any of these disorders out, nor confirm a diagnosis. For now I’m calling it “mystery parasomnia” (which I think is fitting because it sounds like something you would find in a haunted house, and that’s what the experience is rather like.) He’s referred me on to do a sleep-study, to try get a clearer picture. Sleep studies often don’t yield results, as if patients are only having sleep disturbances once every few weeks, it can be hard to guess at which night they’ll be able to observe something, and besides which, being in a different environment can alter sleep patterns anyway. In my case, I have some form of these sleep disturbances happening most nights, so hopefully they will be able to catch something. The sleep-study may not change anything, but being able to put a name to this, and being exactly sure of what’s going on, may help my peace of mind, even if nothing else.

In terms of treatment, there aren’t any medication options for me - most sleeping tablets actually increase these types of episodes (I’ve experienced this first hand!) The ones that don’t instead have various significant risks associated with them, and so are usually only prescribed in extreme cases, such as when someone has become a danger to their partner by attacking them in their sleep (the specialist told me a few stories about that!) Instead, he has suggested a very strict sleep routine* which limits sleep opportunities, along with late night and early morning routines to try increase production of the right hormones at the right times. The hope is that with time, this will help manage the Delayed Sleep Phase Syndrome, and possibly decrease some of the other sleep events as well. However, while I’m in the initial stages of following this (I haven’t started yet, as I’m still waiting for the sleep study appointment) it’s likely that I’ll actually get less sleep until my body adjusts, which is a worrying prospect. It’s worth trying, but it may mean some rough times while I work through that.

One reassuring thing that came out of the appointment was that the specialist confirmed my theory that I don’t have depression, this is just a symptom of the lack of sleep. This makes sense, as I go from a happy and (reasonably) confident person, to feeling completely awful and worthless within the space of a few days when I am going through a bad sleep cycle. While that doesn’t change how bad it feels when I’m in that space, it is at least been something to hold on to, as I can remind myself that once I manage to get a few days good sleep, I will begin to feel better again. When I’m in the middle of that, it’s hard to believe it, but I’ve been through this enough times now to know that is just part of the process.

Thanks for reading,
Little Miss Autoimmune


* I’m not going to post the details here, as this is something that’s been recommended for my particular situation, and I don’t want this to be used as medical advice where it may not be the right fit.

I have a doctor’s appointment tomorrow… and I’m scared.

I really would have liked this post to have a more succinct title, but this is pretty much what it comes down to. I’m seeing a sleep specialist tomorrow, and I am scared of ALL THE POSSIBLE OUTCOMES. :P

I’m scared he will have no idea why my sleep is so weird. I’m scared he will know and it’s something bad. I’m scared there won’t be any treatment options for me, but I’m also scared of treatment options because I’ve had such awful, sometimes life-threatening, experiences with medications and side effects over the years. I’m scared that trying any treatment could make my sleep even worse – it is entirely possible that it could – but I also know that if I don’t try, things could get worse anyway. I’m scared of the sleep disorder going away completely (as I’ve discussed before there are positives to it) but this winter things just got so so bad and I simply can’t go on like that. I’m scared because I’ve done a lot of work on myself in the last couple of months and have managed to get to a really good place, and I’m worried changing things could tip me back to somewhere bad. Mostly I’m scared because despite my best efforts to not get my hopes up about what this appointment will mean... I’ve totally got my hopes up, and I’m scared that I’m going to be crushed if this doesn’t work out well.

I know I’m not the only person who feels like this before appointments. When you have chronic illnesses, this thought loop is kind of just part of the process. For a long time I didn’t realise that, and thought I was the only one having such contradictory, sometimes irrational, thoughts. While I’d never wish illness on anyone, this is where it’s been really great to read other blogs, and have friends who are going through the same kinds of things, because you figure out that all the weird things you end up feeling are just normal reactions to an abnormal situation.

I could sit here and tell myself to be positive and say it’s all going to work out fine, but… well that’s not all that realistic. I’ve got no idea what the outcome of this will be, or even whether it’s going to be positive, negative or that good old beige in-between. I do know that I will figure out a way to be okay with it whatever happens. Because I always do.

Fortunately I have some pretty awesome friends, who’ve been supporting me through all of this, and one has even made an amazing offer to stay with me if I do try medications. Having someone there would really help me out with the fear of things going wrong, and would hopefully help to mitigate the effects if I do have a negative reaction. In the meantime I’m just going to have to deal with this appointment-anxiety. If nothing else, I do find it funny that worrying about a sleep-appointment is making me not sleep well. But maybe that’s just my twisted sense of humour.

Thanks for reading, 
Little Miss Autoimmune.