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Sound familiar?

Hi all,
I wonder how many of you all have these symptoms first thing in the morning upon waking?

*Usually open one eye first as two at the same time can cause some dizziness?

*Turn over in bed and actually have to get up onto your elbow and manoeuvre as you cannot just roll over onto your other side?

*Have to get up super slowly from a laying down position and this can cause full true rotary vertigo?

*Cannot read anything whilst your laying down (emails, txts) first thing as you have to wait to (come around) and let your eyes adjust before reading anything.

Is this just me? :thinking:

Had issues not getting up but lying down, which, during one horrible phase, guaranteed spinning vertigo.

Yes have had issues turning over. Thankfully no more! Poor you!

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Its horrible! Adjusting your life around MAV! :roll_eyes: mornings are especially bad! :confounded::confounded:

Mornings are the worst for me Kirsty. The rigmarole i have to go through to get up, dressed, and out to work is hard slog!! I feel much better as the day goes on and by the time i go to bed i feel almost normal

Yep. Mornings were always my worst time. By afternoon things were much easier.

Same Jo!
The day either gets better or lately its quite similar throughout then will manifest into a full blow migraine! Usually though my dizziness does get better as the day goes on. When I first lay down flat at night too I can feel like I am being pulled around the bed or the bed is sinking :triumph::triumph: x

Ive always had the " dragged to the ground" feeling still do get it more so when ive been over doing things or getting out of a car after travel. But i do improve a lot by bedtime and dont get it when i lay down at all

That is the worst. Poor you Jo!

Kirsty. Welcome to my World! I’ve had all this, and like James and Jo mornings always worse. I used to say I always felt as if I had to relearn how to balance from scratch every morning when I got up. Most of these symptoms are gone/very much reduced now,

From my own, very recent, experience, I am beginning to wonder about the connection between (1) and (4) above points, that ‘derealisation’ sensation and the result of (inadvertently) placing overwhelming strain on eye muscles which is a new concept I’ve been trying to get my head around this week as a result of my new glasses prescription.

Ref (1) and (4). Kirsty. How long have you experienced these two symptoms? Can you pin point it most particularly in relation to when you started the Ami? Helen

James that along with nose/ sinus / ear pressure and pain have been my worst symptoms on this roller coaster ride…i want to get off!!!:sweat_smile:

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Hi Helen
In ref to 1 and 4 I most certainly have has these for years! :triumph:
Since Ami things did settle a little more but since the botox I think everything is much more heightened. Hoping this will pass again although I can feel a migraine on yhe horizon! :persevere::persevere:

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Have you been test for a CSF leak? It can cause similar symptoms to what you describe, as can problems with your eyes not being level, or maybe even POTs.

Never actually. Ive never had a lumbar puncture either. Is this the only way theu can test for it? :thinking:

I’ve no idea I’m afraid, a spine mri might be able to detect it. It might be worth looking it up online and asking your neuro about it if you feel it fits your symptoms - if not, just ignore me lol. You can get your eyes tested to check for the imbalance at a regular opticians as long as you ask them about it specifically before your appointment. I can’t remember what the name of the condition is called but i know that some people say they have to close one eye to stop being dizzy.

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Thank you for the info! I will ask neuro when I see her next. Not long had an eye test and nothing was mentioned so I dont know if it is that. Will do some digging on it and see what I can find. Hopefully it is just MAV and it will pass… :crossed_fingers:

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It could well just be part of MAV, hope you feel better soon.

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