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Shaky eyes when waking

Hi everyone, I have been reasonably well this past 6 months. Travelling between 80-95% most days but always have a niggle or two.

I have been waking lately with shaky eyes. While still laying in bed, I try to focus on something and my vision shakes quickly and a lot! It doesn’t seem to fatigue.

I swear I have some sort of damage in my cerebellum. A lesion/s or something because I still get nystagmus watching motion and I’m still have positional nystagmus - central is would seem but I’m not qualified to know.

When I get up, it goes away.

Anyone else have this? I’m seeing my neuro in 2 weeks and I’ll be asking.

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I get nystagmus in bed occasionally and I’m pretty much otherwise recovered from a vestibular perspective.

It’s something to do with pressure on the inner or middle ear I suspect. The same reason you get positional vertigo in bed sometimes and not when standing up.

I can’t see why your brain would function differently when standing up as it is not a sense.

Something that’s never been explained by medicine as they don’t seem to know.

Not sure I’m reading you right. Bit more detail please.

Are you opening your eyes to the room spinning or a feeling your eyes are jumping around in your head or is this a case of eyes feeling jumpy each time your vision fixated on any particular spot for a while? I’d say the latter is Oscillopsia and for me that feels like objective vertigo which just starts and then stops but like a jump, jerk whatever.

Regards ‘lesions’ have you not had an MRI? Mine showed quite a lot of lesions and I was told not to bother about them. They are common.

Pardon my ignorance but how do you know and what does that feel like? Shaky eyes? Not sure I’ve ever felt that. Mine goes straight to objective (room spinning) vertigo far as I recall.

My left eye flickers based on position whilst eyelids closed.

It’s the same if milder flicker I had whilst standing up when I watched video when very symptomatic.

I think spinning is just a more extreme version/escalation of this mild symptom as the brain tries to interpret the odd sense information and decides you are spinning.

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I was just thinking the same thing myself. What you were getting was the start of vertigo but it somehow checked itself and went no further. Perhaps that’s what I’m currently experiencing and thinking of more as Oscillopsia. I get what you get occasionally when I’m bit symptomatic. It’s virtually positional and can occur watching TV, reading or using IPad and only lasts a second or two at a time.

Ok a little more detail.

It is not spinning… like in bppv. That’s spiral spinning at an incredible fast rate. Not that.

It’s back and forth fast shaking. My vision is not still. Goes side to side very quickly. I can feel my eyes moving back and forth. It’s hard to explain. I was looking at the corner of my ensuite door, and my focal point shifted to either side of the corner continually. Hope that makes sense.

It goes on and on until I get up. But doesn’t happen as much when I go to bed at night. It’s very strange and quite concerning.

Funny that while in bed this morning testing this out - moving my head side to side to see if it would go away, a full blown earth quake happened! I thought it was vertigo for sure, but no… definitely an earth quake.

Just thought I would hop on here to see if anyone gets this.

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It’s all different variants of the same escalation.

But what is BPPV anyway? Ultimately it’s just a diagnosis (not a confirmed aetiology?) because the explanation and especially the explanation of the treatment make no sense (shake head violently to exquisitely reposition microscopic crystals = BS!!)

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Perfect. With you now. Be interesting to hear what the consultant has to say. I suppose that’s either nystagmus. Any chance you can video it to show your doctor? Or it’s some halfway vertigo variant which doesn’t really get going fully because you are on medication and that is sort of Half controlling it.

Does the shaking shut if you close your eyes?

My eyes shake to just before opening as Iam starting to wake they do seem to stop when I sit up, not sure if this is the same thing but this is quite often is accompanied by tremors in other muscles arms legs chest etc.

Belindy,
This has been the case for me since the “beginning” of VM.
It’s almost as if my eyes are trying to “calibrate” for the day.
It has now settled down to where I don’t feel like my eyes are slapping my ears :wink:, but they still to this day “rock back and forth” every day upon waking.
I have not even mentioned it to my Drs since the thought escapes me at the time and it does go away as soon as my eyes have a chance to focus and adjust once I am up and moving.
It is just a very bizarre feeling!

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Well that’s a relief that other people experience this too.

However last night I woke at 4am and felt incredibly nauseous and eyes darting. I fear this is the beginning of another long episode. I have just made an earlier appointment with my neuro for next week.

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Actually, my eyes have never been exactly still when lying down since mine ‘began’ last October. This has certainly ramped up though.

Could it be BPPV @Naejohn ? Does BPPV have to always be 350 mile an hour spinning! It does get worse each time I roll over.

It just reminds me of exactly how it all started 12 months ago and I’m a little on edge.

Could stress contribute to how you are feeling (lockdown, increasing covid numbers, earthquake)? For me, stress makes all the VM symptoms worse.

Well don’t get me wrong, life is stressful. Melbourne is now the number 1 city in the world that has been lockdown the longest! The full on daily riots, and the earthquake yes. BUT, no sadly I think this is something else. Stress could have contributed though.

No. It’s the same. It wakes me up and makes me sick

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That’s beginning to sound a lot like true MAV vertigo to me.

I had that. Eye would shake even when closed.

Let’s call it what it is: nystagmus.

Haha ok it definitely is nystagmus. That’s exactly what it is!

Has it ever returned James? Did it come and go?

Got better and better as I compensated (and very likely my ear improved for whatever reason). Hardly affects me now. I needed Amitriptyline at first to dampen it down. Only needed that for 1.5 years. Have coped without meds ever since.