Nystagmus anyone?

[4happygnomes]

Curious if anyone else has nystagmus when their eyes are closed.  My eyes/eyelids flutter rapidly when I'm awake but only with my eyes closed.  I first noticed this when I was doing an "experiment" with my kids to see if they could see me visibly swaying when I closed my eyes (I could feel it happening, they confirmed it was happening)...but they were freaking out because my eyes were going bonkers under my lids.  The same thing happened in front of my Neuro and Physical Therapist...my Neuro noted it in my chart and said "this is somewhat unusual" and my PT just shrugged her shoulder as to why it is happening.  I do have the 25% vestibular deficit...but curious as to why this is considered "unusual" when this condition is noted as a symptom for MS patients?!  Am I missing something?

[4happygnomes]

Very true, I might be trying to make a "square peg fit into a round hole" in order to make sense of all that is going on with me!  I will try to take a step back, deep breath and leave it to the doctors to figure out.  Thanks for the nudge to relax, appreciate it!

[supermum_ms]

The world wide web can be a very useful and informative library, though one of the main problems people commonly and naturally do when looking up information, is to 'unconsciously' focus in on the information that validates or continues to support how they are thinking, unfortunately they are also inadvertently excluding a lot of the information that doesn't validate or even directly challenges their thoughts.

With that thought in mind, I think you may have inadvertently missed the significant points in that quote...
(a) "In most cases, eyelid myokymia is benign, self-limited, and not associated with any disease."
(b)"Rarely, eyelid myokymia may occur as a precursor of.......multiple sclerosis."  

"In most cases, eyelid myokymia is benign, self-limited, and not associated with any disease. Intervention is usually unnecessary. Rarely, eyelid myokymia may occur as a precursor of hemifacial spasm, blepharospasm, Meige syndrome, spastic-paretic facial contracture, and multiple sclerosis."
http://emedicine.medscape.com/article/1213160-overview  

I think it would be better to keep in mind, that 'eyelid myokymia' may not even be the right explanation, if you only experience this during voluntary eye closed conditions but even if it was, MS is one of the 'least likely' associated causes, so in the grand scheme of things, it's just 'more likely' to be one of the actual common causes that the rare.

Cheers...........JJ

[4happygnomes]

Oh my, what a terribly unromantic moment that sounds like, sorry...I had to giggle!  Thanks for the info!  I of course took the term Myokymia and did exactly what my doctor tells me not to do (because I'm a rebel like that! ;-) and googled it. Found this gem:   "Rarely, eyelid myokymia may occur as a precursor of hemifacial spasm, blepharospasm, Meige syndrome, spastic-paretic facial contracture, and multiple sclerosis."  ee gads!  And I'm perplexed why my MS Neuro didn't mention this condition as a possiblity...hmmm

I actually do have blurry vision in one eye and both eyes are equal participants in this activity and I can't really tell if it's my eyeballs, eyelids or whole kit n kaboodle!  

I'm really not trying to put "the cart before the horse" but it seems my horse has took off running, not even waiting for the cart, and I am desperately trying to catch it and slow it down and ask it what it is running from!  =(  Really hoping the appt Dec 8th at the Mayo sheds some light!

Thanks again all for taking the time to write back!  

[supermum_ms]

I actually think i know what your talking about, lol but i don't think what you've described is likely to be Nystagmus. I do have Nystagmus and before I knew that's what it was, i was periodically experiencing it's associated visual issues (double) and during these times I would describe my eyeballs as rhythmically bouncing behind my eyelids, when I closed my eyes to sleep or meditate, oh boy did my bouncing eyes keep me awake lol

When the Nystagmus was only visible during testing, my vision was more like a ghost effect or bad photocopy, one image slightly above and to the side, but the Nystagmus did end up becoming more pronounced and very visible to the naked eye. Strange but true lol there is nothing like looking at your husband during a romantic moment and seeing another set of eyes looking at you from his forehead, and another mouth puckering up for a kiss and it's on his cheek ROFL and he's temporarily distracted by the oddity of seeing my eyeball doing a jig :D

Your not saying you experience any of the typical visual issues that are caused by Nystagmus and the movement is only when your eyelids are voluntarily closed (experiment, neuro tests, physio), which sounds more consistent with 'eyelid' movement and not actually the eyeballs themselves as happens with Nystagmus.  

"Lid Twitch
A patient who can’t control lid fluttering or twitching can find it very distressing. Often this condition is a simple, benign muscle anomaly, but on occasion it can represent a severe neurological disorder. Consider the following:

Benign myokymia. Patients often describe this common condition as a twitching or “jumping” of the eye. In fact, it involves only the eyelid. Without a concurrent complaint of visual oscillopsia, you can discount actual globe movement. Because nystagmus is a very different condition with potentially far more serious ramifications, it’s important to pointedly ask this question: “Is it your eye or eyelid that’s twitching?"

Ask your patient if he or she has noticed the eyelid movements when looking in the mirror, or if others have noticed it. Typically, the lid twitching that occurs with benign lid myokymia is so subtle that the patient senses it, but others rarely see it. The patient may feel that the phenomenon causes lid drooping but, again, this is rarely noticeable.

Benign myokymia presents in otherwise healthy individuals. It’s typically unilateral, but may alternate sides in recurrent cases. It may involve the upper or lower lids. The twitching may occur intermittently for hours or weeks. The etiology remains obscure, but is frequently associated with psychological stress or significant ingestion of caffeine and/or nicotine. Reassure the patient that the condition is transient and benign. The best treatment is to reduce the precipitating factors. However, in more symptomatic or persistent cases, drug therapy may be indicated (see “Treating Lid Myokymia,” page 76)." http://legacy.revoptom.com/archive/FEATURES/RO1000f5ticsandptosis.htm

I think if it was something neurologically significantly like Nystagmus, you'd more than likely be experiencing problematic visual issues too, without it i'm thinking it's probably eyelids instead of eyeballs.  

Cheers............JJ        

[4happygnomes]

Thank you both for the response, never knew I could be such a complex person (kinda wish I wasn't!).    LOL, I think I might have a recurring role in that "bad Western" show essdipity...I seem to be breaking down all over the place!  ;-)  Sure wish it paid something!  

[essdipity]

I too don't know what could be going on,but I hope it isn't too bothersome. My MS-diagnosing neuro commented several times that I have a 'breakdown in smooth pursuit,' which sounds for all the world like the title of a bad Western, but is akin to nystagmus. This has happened when he did the follow-my-finger test, not something anyone can do with eyes closed.   :-)

ess

[kwarendorf]

Hi 4HG -

I have not heard of nystagmus manifesting with eyes closed. Mine is only apparent for the first few minutes after waking, or if I turn my head to its most extreme in either direction. In both cases I have double vision.

In my case there is nothing wrong with my vision or optic nerve. It's the muscles that control my eye movement that cause my nystagmus. They get corrupt messages, passed along damaged nerves in my CNS.

I can't speak to the vestibular connection, or whether the vestibula system is considered part of the central nervous system.

Kyle