Nystagmus (oscillating eyeballs) - Anything to Help?

[McFlorida]

Well, I'm continuing my education in AN symptoms and word definitions.  I had never even heard the word before yesterday, and now I know what I've been feeling for the last week.  I work in an engineering office, and I have to go to a lot of presentations.  For the last week or so, I have noticed an uneasy feeling as I read along on the meeting room screen.  A neurosurgeon that I saw yesterday asked me to follow his finger with my eyes as he moved it left and right.  My eyes jumped!  He told me that it is due to the AN.  Can anyone give me any advice if there is a way to lessen the effect?  Is it worse when you're tired?  And my AN is fairly small.  Is nystagmus common for small ANs?  It is not too bad at the moment, but does it increase with time and AN growth?  Any info would be appreciated.

[sgerrard]

Here is a post by Jim Scott in a thread on Nystagmus, from May:
http://anausa.org/forum/index.php?topic=3568.msg38294#msg38294

A vestibular lab can test this, using equipment a little more quantitative than a surgeon's finger. I had vestibular testing done at my doctor's request, and it included various tests for different types of nystagmus. Apparently I have a slight right-beating positional nystagmus when I lie on my right side, suggesting "a mild vestibular asymmetry". No kidding, Doc, I have a tumor growing on one of my balance nerves!

Hopefully yours will stay mild, but I would get it checked out, the lab could also tell you what might help with it.

[Betsy]

Hi there McFlorida,

Amazing how your vocabulary increases once you have an AN!  Thank goodness for google.

Nystagmus happens to me when my vertigo is at it's worst. Since I have a history of migraines both with and without pain, the docs believe that my vertigo and nystagmus could just as easily result from a condition called MAV (migraine associated vertigo) as from the AN.  Either way, since my MRI came back showing the AN, we're dealing with that first.  Luckily, the vertigo episodes have subsided, but now I'm frequently unsteady/dizzy, which we all agree is the AN at work.

It really wouldn't hurt to have some more thorough testing done, so you'll know exactly where you stand.  If you've had migraines, you might find this link interesting.  http://www.tchain.com/otoneurology/disorders/central/migraine/mav.html

Betsy

[McFlorida]

Thanks, all, for the info.  At the moment, I don't have headaches, but would have to say that my head gets tired, if that makes sense.  I have never been prone to headaches, but my head feels like I have been reading too much.  (without the reading, of course.  )  Tired eyes and a dull feeling.  Betsy, did you have the nystagmus before the vertigo, or did it show up afterwards?  I have never had a full blown episode of vertigo, but I feel like I have the lightheaded feeling quite often.  I guess that I'm just concerned that this is a beginning of something that will get worse, as opposed to a symptom that is stable and then I know I can live with.

[Betsy]

Hey there McFlorida,

No, my first experience with nystagmus was early this year when I started having severe vertigo attacks.  One of the doctors I've consulted with thought he observed a couple beats during the "look at my finger" exam, but I wasn't aware of it...it was nothing like the eye-jerking duing the vertigo episodes.  I know what you mean about the dull feeling and lightheadedness.  It could be the shock of learning you have an AN, or it could be caused by the AN.  Sometimes it's hard to tell the difference between AN symptoms and side effects of anxiety.  Most of the doctors I've seen are very quick to assign anxiety as the cause of my symptoms.  I have no problems pushing the issue with them, but I sure hope that doesn't happen to you.  You're definitely on the right track here...learning as much as you can about ANs and treatment.

Betsy

[hendi51]

McFlorida, my husband has a AN and since December everything he sees bounces. Sometimes everything bounces real bad and all he can do is lay down and close his eyes so that he doesn't see anything. His is worse everyday in the afternoon. The doctor has said it's the location of the tumor.

[Omaschwannoma]

Hi McFlorida,

I am 2.5 years post surgery and about one year ago I was diagnosed with nystagmus.  Just after my 6 week visit with Dr. Antonelli (Shands at UF) I remember telling him "If you could see what I see you wouldn't say I look good."  I described my symptoms to him as my field of vision bounces while I'm walking.  Answer was continue putting yourself through your exercises recommended by your PT which I did religiously everyday.  As more months went by I still wasn't improving.  At the time of my one-year MRI there was some questions about whether my tumor had returned, but Dr. Antonelli said this is not the case and more time is what's needed to straighten out.  6 months went by and I called him saying the hearing in my good ear is now coming and going at times.  He referred me to an ENT near me who did numerous tests, ABR and ECOG based on my other symptoms he was thinking Meniers Disease.  He then sent me to Neurotologist who did another test ENG and this is when they confirmed my nystagmus.  Sent me for more PT thinking this will shake it, PT says we can't help you, so I lived with this until just recently at the ANA Symposium and listening to Dr. Antonelli talk about balance/vestibular issues.  Come to find out the symptoms I have been describing to the other docs is oscillopsia which is different from nystagmus.  Seems I have both.  Unfortunately, signs of oscillopsia could mean another tumor on the other side or inflammation of some kind in the good ear.  I have recently gathered up all my test results done here in S.Florida and sent them to Dr. Antonelli to see if they aren't missing something.  In the mean time my MRI is due this December and this will be the
test to rule out another tumor?!  

I am sorry I cannot give you any help here other than and Videonystagmography test is the test to have to confirm nystagmus.  I was told my nystagmus is "Consistent with the AN."?  Whadya mean..., another AN or the AN surgery?  As of this time I do not know of any Tx for nystagmus other than vestibular rehab exercises perhaps or does one see an opthamalagist.  I'll let you know when I hear something that might help you.  Hang in there as nystagmus does wear you out easily--lots of "confusing" information being processed by the brain = brain fatigue.  

[Mari]

I was just wondering what kind of surgery you had? How large was your tumor etc. I'm like you nystagmus is a new term for me and so is migraine associated vertigo. I think the side effects and postoperative conditions are endless  . I try so damned hard to have a good attitude but it really becomes hard  when your miserable and something new pops up everyday. I'm 7 years post-op and my new trick is seizures:o. Sorry  I don't mean to bring anyone down.  Everyone is different and some people recover 100%. I'm just not one of those people. I know everyone gets tied of me whining and having pity parties thats why I'm glad I found this forum again. Back to your question I agree more testing would be beneficial. Not to scare you but I have this nystagmus prior to and along with the seizures but that is probibly common to any seizure. I need to look in to this nystagmus, I lose my place reading also so that may explain something new to me. I find that most symptoms to seem worse when I am tired and I know I look worse because my lovely children let me know these things.They don't mean to insult me or anything I'm the one who asks them to be honest with me. And then there is the wonderful vertigo. Some people confuse this term with dizziness. It is quite strange-very hard to explain to someone who has never had it. I'm not sure if any of this helped or if it sounded like a bunch of bableing.
Mari, 44
2cmx3cm ANI
translab 2000