I’m running the risk of making myself look silly, but I am looking for some help with information about a sleep disorder that I have.

I’m not looking for sympathy or therapy. I am genuinely fascinated by what’s happening and would love to know if anybody else out there experiences the same and can shed any light on it.

Here goes.

I have suffered from sleep paralysis since the age of 11. It’s nothing serious and affects millions of people. I can remember the first time it happened. I was in my dorm at boarding school, drifting to sleep when I suddenly ‘awoke’ to find that I couldn’t move or make a sound. My brain and body felt like they were full of electricity. I tried to shout at my friends to wake me up and couldn’t understand why they weren’t helping me. After 30 seconds or so it just stopped and I was wide awake and able to move again. All the while, nobody else had noticed a thing.

It became a regular thing. I’d sometimes mention it to friends but they just assumed I was just having bad nightmares. I always woke up unharmed, so I figured it wasn’t dangerous and just did my best to live with it. It only happened a few times a month, wasn’t debilitating and I was too embarrassed to tell anybody. It was my slightly scary little secret.

I had a breakthrough in the late 1990s, when my wife and I were living in Singapore. The internet was still a relatively new thing and one night, after another episode, I got up and typed my symptoms into Hey Jeeves (remember them?) It was a hallelujah moment. I discovered that I was one of millions of people around the world who had it. It even had a name and, most importantly, a scientific explanation. Sleep paralysis. Lucid dreaming. Exploding Head Syndrome. Yes, really. But most of all, at last I knew it wasn’t some kind of weird supernatural phenomena and there was an online community of fellow sufferers. It was such a relief.

The thing is though, there’s something else that happens that I have only ever shared with my wife. I still get sleep paralysis but I am now experiencing something even weirder that I can’t find any references to and sounds bonkers. Last night, it happened again. It was so vivid that I got up and started writing this so that I didn’t forget the details.

This is what happens.

I will be drifting to sleep. Suddenly I am simultaneously asleep and awake. I know I am dreaming but I am also able to comment on the dream to myself. My brain and body are in some kind of electrically charged frenzy. My body is frozen. So far, very similar to sleep paralysis, but much more intense. I know where I am. I can see the bedroom and know my wife is next to me. It is not a dream in any traditional kind of way. Weirdly, I have the distinct feeling that something is trying to communicate with me which is very unnerving. There’s a noise in my head that is thunderous and building. My chest tightens and I brace myself for something ominous to happen. It often feels like my heart is about to stop. It’s exhilarating and scary. I often wonder if I’m having a fit.

I can see a brilliant kaleidoscope of colours around me. A wall of noise and colour that feels both threatening and benevolent. There are indistinct shapes and figures in there too. It’s buzzing and alive. I can sense something reaching out from behind the wall, occasionally touching me or squeezing my hand. I am scared but also desperate to know what it is. I try to to move towards it but I’m paralysed.

At this point, I always try to wake up. I shout at my wife, pleading for help. Sometimes I thrash about to get her attention. Most of the time it’s pointless because I hardly move or make a sound, which is incredibly frustrating. Occasionally I do manage to move just enough for her to notice and wake me up. Sometimes I’ve managed to shout “No!” loud enough for her and occasionally the kids to hear, but that’s rare. My wife tells me that all she usually sees is me breathing in a clearly agitated way. But she knows that I want her to wake me up because we’ve discussed it many times. Most of the time, it just ends and I wake up, often in a state of high anxiety. But I am used to that from the sleep paralysis so I soon calm down.

So far, pretty familiar but it’s what happens next that stumps me.

When I wake up and open my eyes, I see something that nobody else can. I need to repeat that I am now wide awake. In fact, intensely awake, almost hypersensitive. My brain is fizzing. It feels like I am looking at another dimension. I look up and the wall of noise and colour that I could see in my dream state is still there above me but slowly and quietly retreating. I know how crazy this sounds. I stare at it, almost in disbelief, as it dissipates. If my wife is awake I’ll ask her if she can see it. Of course she can’t. This will last for a couple of minutes. As it retreats, I always have a feeling that’s there’s something behind it trying to contact me that it is potentially life changing. It feels like if I make contact, something profound is going to happen but I don’t know if it will be a good or bad thing. Sometimes at this point I am close to tears and am still scared but have a huge urge to go through the retreating wall. It feels like there are answers to everything behind it. Remember, I am now WIDE awake. I am not dreaming. Again, if my wife is awake, I’ll tell her it’s happened again. We’ll speak briefly about it in the morning which I use to reassure myself that it did happen and I’m not going nuts. As you might imagine, it took me a long time to pluck up the courage to tell her about this

It’s crazy. I know. I’m at a loss to explain it.

I am very careful not to attribute it to anything supernatural. It’s not lost on me that these more intense experiences only started after my son died, so I am wary of wanting to believe in something else. Are they just an extended version of sleep paralysis that somehow crosses into my conscious and awake self, perhaps a grief related mental health issue or a subconscious but over-powering yearning to see my son again? If it’s the latter, why does it happen when I am wide awake? If it’s about our son, why do I never dream of him? He never appears in any of this.

I can even engage with it as it happens. I usually know when it’s about to happen, often ask it not to as I dream and say ‘for fuck’s sake, not again’ to myself when it starts. I then lie there through the dream knowing exactly what’s going to happen. I wake up and I see the retreating wall. If it happens when I am alone, which I hate, I will turn on the light just to check that there’s nothing on the ceiling. Of course there isn’t. It’s baffling and hard to get back to sleep.

There are some nights when it happens multiple times and I have to get up to make sure that I don’t give it the opportunity to come back. On occasion this means I don’t get any sleep at all. And yet, I like having them too if they come less frequently. It feels like I’m seeing something that’s a privilege. It’s nuts.

I am a night owl but I don’t have trouble sleeping most of the time, so I know it’s not insomnia. That said, I usually sleep from 1am until 7am, so maybe I am more tired than I think but I’ve survived most of my life so far on 6 hours sleep.

Right now, writing this, I feel very self-conscious. I’ve never said anything about ‘the wall’ to anybody other than my wife. A few months ago I asked on Twitter if any of my network had contacts at sleep clinics but was too embarrassed to say why but on reflection I think it’s more productive to share it. 

I know that the first part is sleep paralysis but I can’t even begin to explain what happens when I wake up. It’s happened enough times for me to note a few specifics – it mostly happens when I am sleeping face up, occasionally when I am sleeping on my left ear and only once has it happened when sleeping on my right ear. I am deaf in my left ear and wonder if this is a contributing factor, ie hearing things might be a trigger. There are even some nights when I know it’s going to come before I go to sleep. I can just feel it. There’s a buzzing in my head and a metallic taste on my tongue.

Mad, isn’t it?

I’ve talked to my wife this morning and she’s suggested I show this to my GP as a start but I thought I’d post it here to see if it resonates with anyone else.

I’d love to know if anybody else sees the ‘wall’.