Waking up to black smoke?

Does anyone here wake up in the middle of the night seeing a dense film of black spots in their field of vision here?

It's like I wake up seeing black smoke a few times a night, usually early morning when I have most of my REM sleep, and it goes away after a few seconds. I also usually feel a bit lightheaded and goofy when I wake up to this.

Sometimes in the middle of it all I see a black geometrical shape (looks a bit like a digital spider) rotating towards me and dissipating. First time it happened it freaked me out and I tried to catch it in the air.

I don't think it's sleep apnea because I don't wake up gasping for air from this. I've also had a sleep study done and they said I didn't have sleep apnea.

 

not me

 

I haven't experienced this either. Hope someone has done answers,/suggestions for you.

 

I've had this on and off all for decades. For me I only notice this in the morning. Always thought it was a variation eye floaters.

 

I had a detached retina years ago (surgically repaired, scleral buckling). I recall wired geometric shapes occurring sporadically at random.

You might want to get an ophthalmologist to check your retina. If DR It's serious stuff

Good luck.

 

Yup I know this one! I often get this, not the shapes but certainly a smoky film in the darkness if I wake in the early hours. If I wake in the morning when it's light I will often see everything red or green ... lasts for a few seconds like yourself and then it goes. It only happens in the very early morning, between around 5 and 7. I'll go back to sleep after it and wake properly for the day later and not have any trace of it.

I've seen an opthalmologist and she wasn't too concerned. She said it sounded like insufficient blood flow to the brain for a few secs, similar to an ocular migraine where a person does not get a headache but does experience the visual symptoms such an aura of colours or any visual disturbance. I have found it quite stressful sometimes but good to have had it checked out.

 

Was this before or after CFS?

I've had this for years. Optomologist found I was in danger of DR and I've had the patch up laser surgery done to prevent it. I still have the smoke stuff since. With DR though you'd see flashing in the corner of your eye, not smoke in you whole vision.

Was this before or after CFS? Do you have POTS? I do. I wonder if the insufficient blood flow to the head is due to nocturnal drop in blood pressure? But why would it happen between 5-7 (mine does too!), isn't that when our cortisol is going up?

 

I've had CFS for nearly 30 years, since I was a small kid,but this has just started happening the last 2 to 3 years I think. Maybe I didn't notice as keenly though until the last few years, I'm not sure.
I do have severe POTS and hypotension too.
I'm very bemused also by the timing though. It must be related to that part of the sleep cycle or like you say hormonal cycle. I would love to know what it is. I have had holter monitors at night to track my heart rate and they often record runs of 150bpm while I'm sleeping, always at around 5.30 but it's anytime between around 5 and 7ish that I can have the weird vision. Occasionally I've felt nauseous for a few secs with it, I don't know if that's part of it or if it's because I find it disturbing sometimes.

At least we aren't alone huh ?

 

Try aao.org - Professional organization answers eye questions, medical.
That's aao.org. Problem with post!!!

 

I also sometimes wake up to this phenomenon with a racing heart beat.

Do you get most of your night sweats during this thing? I do.

If it were cerebral hypoperfusion due to hypotension our extremities would also be hypoperfused because we'd horizontal at that time. I should get a finger oximeter and see what it says when I wake up to this thing.

 

I doubt it, but it sounds vaguely like PVD (posterior vitreous detachment). It's a usually benign condition of aging, but it can occasionally have more serious complications. It may produce a lot of floaters, which can look like dust, but I don't think you'd see it only upon waking.

[ Somewhat OT, I developed a weird thing in the last couple of years where, if I wake up and keep my eyes closed, I will see bright radial lines if I move my eyes back and forth (while they are closed). The lines are only present for an instant when I move my eyes. Once my eyes are exposed to light, the effect goes away. My eye doctor was not concerned and said it was probably just friction stimulating dark adapted nerves (or something like that). ]

 

I had this occasionally. It never happened when I was healthy but my doctor said as long as it only happens when I'm falling asleep and waking up it's no cause for concern. He called it "hypnagogic hallucinations".

If you google "hypnagogic spider". You will see it is quite common. It's strange because I have absolutely no fear of spiders. I usually just blink it away.

 

Yes I get the spider sometimes on waking. Haven't tended to worry about it. Assumed it was my retinal cells/signals being slow to wake up. Glad to read it's common.

 

I have something like this, though I'm not sure it is exactly the same as what you are describing. I'm pretty sure what I'm seeing is called the "Blue field entoptic phenomenon." From the description, it seems as though most people can see it under the right conditions. What's weird is that I never noticed it until a few days after the onset of ME. When I mentioned seeing this effect to doctors, they had no explanation for it, but I'm not sure if the effect even had a name back in the 1980's.

I suspect that ME-related light sensitivity might make it more visible to PwME.

I also get a sort of "granulated" effect when I am becoming dark adapted, which I suspect is not all that unusual, but I have had a pretty bad visual strobbing / flicker effect when moving from sunlight to a dark interior, or vice versa.

The Wikipedia page linked below actually has a reasonably good animation of the blue field effect.

 

@Forbin That's just an evolutionary screw up, where tiny blood vessels that bring blood to the eye are actually laid over the top of our photoreceptors instead of behind them. As I'm sure you already read in the Wikipedia article you linked, those are actually white blood cells you are seeing.

For what it's worth I've seen them all my life and they didn't get worse with ME/CFS, but POTS can make them worse, probably due to changes in amount of blood in those tiny vessels.

 

You may already be aware of this but there is a wikipedia page about (always present) visual snow. The cause is unclear, but it is possibly connected to migraines.

 

I get these hypnagogic hallucinations a few times a month (though not as frequently as when I was younger). They sometimes start with what might be described as black smoke out of which usually a large animal or creature forms. They can be quite scary at times.

During the hypnagogic hallucination, I'm awake but my body is paralyzed and I can't even turn on the light.

Hypnagogic hallucinations are a hallmark symptom of narcolepsy, but anyone can have them. Perhaps due to ME/CFS disrupted sleep, some of us can regularly experience them as well?