Nystagmus Anyone?

[Patze]

Here's another one of my curious sidetracks!

Does anyone have Nystagmus?  If you do, which kind do you have?  

I ask because it seems to be something that I have (bilaterally along with some dizziness), and I wonder if you have it, how do you deal with the dizziness?  I have to undergo more testing of the old brain to see if there is anything else going on that they don't know yet that is causing my dizziness (other than this).

Thanks and take care -

Patze

[lynnmarie219]

Hi Patze,

Nope I don't have this...but I sure wish you luck with your testing...and I hope you get some answers to help with the dizziness. My mom suffered from vertigo when she had ear problems....I know how awful it was for her and I hope you get relief soon!

[lighthouse33]

http://www.lowvision.org/nystagmus.htm

Here is a hyperlink to an article about nystagmus.  It talks about the different kinds. 

I have the one caused by vision loss at birth.  My optic nerve was damaged (probable cause was too much oxygen put in the eyse which was common in the 60s but they know better now and don't do that much anymore) and I'm classified as legally blind but with glasses I can see 20 / 80.  I have the astigmatism along with it.  And as the article mentioned I was mercilessly teased in school.  Aren't childeren lovely.  Often my rhuemy will comment on it while doing my eye exam.  Some exams it is really bad, I think probably due to stress.  I've learned to live with it but people do think you are an idiot.  I don't think I notice the movement and don't hae dizziness etc.

[JannaLee]

I have a very close friend with this!  I never knew the name of it till I read this!

Let us know what you find out!

Janna

[Patze]

Hi Lighthouse, wow, I read about the extra oxygen given to babies and the damage it did years ago.  I'm glad that you've found a way around it.  And like you, I too have astigmatism in both eyes so that's always made things interesting.  You do have a good point, I too think stress aggravates it; I seem to be more wobbly when stressed.

And you are so right, children and a lot of adults can be very cruel.

Hi Lynnmarie, thanks for your wishes, it's frustrating trying to get to the bottom of things. 

Hi Janna, it's amazing what doctors have figured out these days.  How is your friend handling it?

Take care -

Patze

[JannaLee]

Patze,

My friend is 40ish years old and the daughter of a world famous eye surgeon.

I've known her well for about 15 years....she NEVER talks about it....ever!~  I've never asked her....but maybe she would like me to...

Her eyes do the jiggle back and forth intermittently but ALWAYS at moments when she is feeling strong emotion.  Those are the moments I have seen it really kick in.

She is a stunning gorgeous nordic blonde who is extremely private (stoic) about any and all medical issues.  A couple years ago she had thyroid cancer and never told anyone.  We found out when we saw the giant bright red screaming scar across the base of her neck!

I would guess she's had this all her life, but I'll find out her etiology and let you know.

Patze, your lovely self is very dear to me and I wish you to get this healed!  Can it be healed?...or is this another gift?

Janna

[Patze]

Hi Janna,

Ah, you are a sweetie!  I wish it can be healed, but I don't think that's going to happen anytime soon. 

It does look like it's another gift; where can I turn these gifts into and get some money back? 


Patze

[Tammypolo]

Hi! I had that plus horrible vertigo a year ago. GP thought it was just an inflamed nerve in my ear but it didn't go away with steroids. He sent me to an eye, ear and throat doctor. He called it Benign Periphial Positional Vertigo(or something like that). Anyway, little calcium crystals that are naturally in the very inner part of your ear can break lose and float around in there making the dizziness and eye stuff happen.  The good news, they fixed it by doing something called an Epley maneuver. No drugs, just you laying down and the doctor moving your head around.

My Mom said that she always knew that I had roks in my head

This pretty much cleared it up.  Sometimes I still get mildy dizzy when I have alot of pressure in my ears, but nothing like before. If you still are having this problem, ask your doctor about this, they told me that medicines just delays the recovery.

Good luck!

[dbab]

Tammypolo,

I am 99% sure I have BPPV also because I get the vertigo and the eye movements and I pretty much know it happens when I tilt my head a certain way or sometimes when I tilt my head up.  I have read about this Epley manuever and I have a lot of anxiety around it.  How wonderful it would be to basically "cure" myself with this (I think I read the success rate is 80%) but I'm also scared because I have read that it gets worse before it gets better when you have it done.  Like you get frequent vertigo attacks for a while afterwards before they go away.  Did you experience this?  Thanks in advance for any info.

[lesmom]

I have it bilaterally and it's only horizontally. I really only notice it when I'm really tired. They told me it's no big deal as mine isn't severe and it could be a constant. It was a lot worse when my symptoms and my dizzy spells really kicked in a few years back. So I hope for your sake that Patze that it is something that doesn't become to bothersome and that you'll be able to get over the dizzyness.

Hugs to you,
Leslie

[Patze]

Hi Leslie,

I know what you mean about it being worse when you're tired, I know it is with me...very frustrating (like I need anything else to be dizzy about! ).

Mine is also bilateral, and both horizontal and vertical (lucky me, an all around critter); very frustrating, and I don't know when the next time I will wobble (reminds me of the weebles commercial, weebles wobble, but they don't fall down (I haven't "fallen" yet, just hit walls and such)!   the things I think of).

Hang in there and I sure hope that both of ours goes the way of the dinosaur!

Take care -

Patze

[wordnerd]

I think I might have this... mostly it occurs when I purposefully trigger it.  I've been able to trigger it on command my whole life and never really thought anything of it beyond it being a neat trick to freak out my friends with.  Lately it happens more and more unintentionally when I'm tired or stressed.  Do you think it's something I should ask my doctor about?  With everything else going on I  never even thought to mention it...

[Patze]

Hi Wordnerd,

How have you been?  I haven't seen you in a long while!

If it's bothering you, I would talk to your ENT about it, he's the one that does the VNG testing I had done.  With mine, it's a disfunction within the brain itsself and not my ears/eyes combo.  Well, it's off to the neuro I go, again, ugh.  Got to love SJS, it's just another circus trick in the fabric of life.

Hang in there and take care -

Patze

[JannaLee]

LAUREN!!!

Hi honey!  It is wonderful to see you!

How the heck are you doing?

Janna

[Tammypolo]

Sorry I haven't been on for a couple of days.  The Epley maneuver is nothing to worry about,dbab. I would go to the doctor like everyone else recommends to make sure this is your diagnosis.

My ENT gave me an exercise to try first at home but it didn't correct my problem. If you have ever gone to a chiropractor or physical therapist, having the Epley maneuver is easier and certainly less painful! More like having the hairdresser wash your hair and turn your head in the sink kind of feeling. In fact, it's not painful at all and if it works, all the dizziness and nausea goes away.  They don't just do it and send you away, they make you stay for awhile to make sure you are okay. Sometimes you have to have it again.

But it is best to have someone who knows what they're doing diagnose your problem and treat you. The last thing you want to do is make things worse. Like Patze said, hers was a brain dysfunction so I assume that it would seem to be treated differently.

Good luck!