Now I think that we can all agree that this is the condition with the most ridiculous name of all! Does my head actually explode? No, thankfully not, but living with exploding head syndrome is definitely challenging.
While we tend to think of sleep as restful, many of us experience difficulties due to chronic illness conditions or because we have a specific sleep disorder. It can feel frustrating, frightening and lonely to be up at 3am due to symptoms. I hope my experience brings a little comfort if you are also living with exploding head syndrome and perhaps a few resources too.
Ok, so we can laugh about the name, but there is a bit of a 'head exploding' feeling when you are symptomatic, although this condition does have a few different symptoms that can be individual to each person.
My first experience of the symptoms of exploding head syndrome was hearing a really loud bang in the middle of the night that woke me up. I had a full-blown jump awake and nearly jump out of bed moment, and was terrified that there was someone breaking into the house. I sat in bed awake for ages, my heart pumping way too fast listening for more noises. Eventually I went downstairs and of course there wasn't anyone there.
That symptom happened a few more times, but then also became a sensation that I find difficult to describe. It's as though there is a bolt of lightning inside my head - a buzzy, zapping electrical sensation that jolts me awake. It mostly happens just as I'm falling asleep, which is so frustrating as I then wake up fully again. Often I also see flashes of light, as though there is a little lightening storm in my head.
Getting a diagnosis
As with many more rare conditions, I went around the houses (or doctors!) for a long time before I got a diagnosis. My GP had no idea what could be wrong, then I spoke with a very unhelpful neurologist who, when I explained that it felt like being tasered, replied in the most snotty voice 'well, I've never been tasered, so I wouldn't know that sensation'. I replied that neither had I, but he seemed to think I was some sort of criminal frequently stopped by the police in such a way . . .
Finally I saw a specialist sleep neurologist who was brilliant. My fear at this point was that I had epilepsy and these symptoms were a kind of fit. To rule this out I had EEG monitoring, which came back fine. So we moved to having a more in-depth sleep study (well, three of them actually, as I wasn't symptomatic on the first two).
Once I had my diagnosis of exploding head syndrome, my doctor and I discussed how to try and manage symptoms and hopefully reduce episodes.
As well as taking a very low dose medication, my doctor also recommended I take a sleep CBT course they offered. I found it really helpful as it gave a lot of information about sleep hygiene and getting into a good routine with sleep.
He also spoke to me about rest and relaxation, as it is thought that stress and anxiety can exacerbate exploding head syndrome. I definitely find that it is more of a problem during periods of more stress. I have tried many forms of self-care including yoga, being off screens in the evening and meditation before bed which has been very helpful, although I admit I do fall off the wagon a bit with that . . .
Overall I have tried to focus on lifestyle measures through the day, including eating well, regular exercise and working on stress levels. I have found that the combination of those measures has reduced my episodes a great deal - going from having them almost every night to once or twice a week. It looks as though I will be managing the symptoms of exploding head syndrome for the time being, but I hope to further reduce my symptoms over time.
For a fascinating book on sleep disorders (but not exploding head syndrome specifically) I recommend my doctor's book The Nocturnal Brain: Nightmares, Neuroscience and the Secret World of Sleep.
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Please follow the advice of your doctor as to all medical treatments, supplements and dietary choices, as set out in my disclaimer. I am not a medical professional, and this post, as well as all other posts on this blog, are for informational purposes only.