Nystagmus
Paul Harris
writes:
>
>My son has congential nystagmus. I find that locating any information
>concerning current research into the cause and possible cure for this
is
>difficult to say the least. IF anyone has a clue how I could find out
>what is going on with research into this please let me know. Thanks
in
>advance.
It is interesting that about once a month this subject comes up. I
guess there should be something done about the FAQ in this area??? How
about it Scott care to do something with me about biofeedback????
The only thing I am aware of that helps this condition (does not "cure"
it) IF something can help, is biofeedback.
Let me know where you are and I will try to make a referral to someone
with a biofeedback device.
Paul Harris, O.D., F.C.O.V.D., F.A.C.B.O.
Director, Baltimore Academy for Behavioral Optometry
Chippyforu
Scott Seidman
> In <4a39p0$a...@newsbf02.news.aol.com> chipp...@aol.com (Chippyforu)
> writes:
> >
> It is interesting that about once a month this subject comes up. I
> guess there should be something done about the FAQ in this area??? How
> about it Scott care to do something with me about biofeedback????
>
Sure, Paul. I've also noticed that Larry Abel may be lurking about--
If I stray, I'm sure he'll correct me.
> The only thing I am aware of that helps this condition (does not "cure"
> it) IF something can help, is biofeedback.
>
> Let me know where you are and I will try to make a referral to someone
> with a biofeedback device.
>
> Paul Harris, O.D., F.C.O.V.D., F.A.C.B.O.
> Director, Baltimore Academy for Behavioral Optometry
>
There is no "cure" for congenital nystagmus (or CN). The basic
idea behind "treatments" is to slow down or halt the eye
movements. If the eye can be slowed down, ASSUMING THE
MACHINERY FOR NORMAL VISION IS PRESENT, vision will probably
improve. The more normal the retina is, the more hope for
improvement.
Biofeedback has proven effective, but there are other methods
that are at least as good, if not better.
In many cases, there is an eye position which seems to slow
down the eye movements. This is called the "null point"
of the nystagmus. If this point exists, the patient may
exhibit a head turn, or an unusual posture, to take advantage
of this. Sure enough, if something helps vision, the
patient wil usually find it,and do it (like the head turn).
Also, in other cases, the act of convergence (near viewing)
will damp the nystagmus (a convergence null), and in these cases
the patient will also get very near to objects of interest, like
a book or TV screen.
I think a pediatric opth or neuroopth is an appropriate place
to start. Ideally, the eye movements would be recorded in
a variety of gaze positions and vergence points to determine
if a null-point exists. If it does, the eyes could be moved
to that null-point using prisms, or surgical techniques.
In many cases this helps vision, in others, it may just get
rid of the head turn, so the patient feels less self-conscious.
Sometimes, CN patients can see fairly well without such intervention,
but would like to get rid of the head turn,
because children do not always enjoy standing out in a classroom.
Note, I am not a health-care professional. Any course of
treatment should always be discussed and carried out under
appropriate guidance.
Scott Seidman, Ph.D.
Univ. of Rochester Med. Ctr. Phone(716)275-6399
Dept. of Neurology, Box 605 Fax(716)244-4617
601 Elmwood Ave email sei...@cvs.rochester.edu
Rochester, NY 14642
Curtis Clauson
>In <4a39p0$a...@newsbf02.news.aol.com> chipp...@aol.com (Chippyforu)
>writes:
>>
>>My son has congential nystagmus. I find that locating any information
>>concerning current research into the cause and possible cure for this is
>>difficult to say the least. IF anyone has a clue how I could find out
>>what is going on with research into this please let me know. Thanks in
>>advance.
>It is interesting that about once a month this subject comes up. I
>guess there should be something done about the FAQ in this area??? How
>about it Scott care to do something with me about biofeedback????
>The only thing I am aware of that helps this condition (does not "cure"
>it) IF something can help, is biofeedback.
>Let me know where you are and I will try to make a referral to someone
>with a biofeedback device.
>Paul Harris, O.D., F.C.O.V.D., F.A.C.B.O.
>Director, Baltimore Academy for Behavioral Optometry
Amazing! I actually found someone talking about this.
I am 36 years old and have had Nystagmus all my life, and I also cannot find
a smegging useful source of information about it. Apparently it doesn't
qualify as an "interesting enough to be funded" subject.
My eye movement is constant, though it will vary according to situation and
stress. And I can't see them move in a mirror (At eight I decked a kid for
telling me I had wiggly eyes and ran home to tell my mom who then said "But,
you do." - Oops). When I was about 10 I am told I was taken to a researcher
in Berkley for an examination because I can control the vibration speed and
even stop it for short periods of time by concentration alone. At the time
they told me this was unique, but I'm not so sure of this - these were Kaiser
doctors after all.
The impact on one's life is far more than people imagine - reading or
focusing on moving objects gives you a headache (and I love to read - Just try
to cram technical manuals for a hot project at work without your head going
Chernobyl(sp). Now I pay a lass to read them to me.), depth perception cannot
be counted on (to drive you have to deduce from shadows), and it's impossible
to find anything against a busy background (I do a lot of U-turns). Worst of
all is the reaction of normal people to someone with "wiggly eyes".
As a kid I had no idea that something was wrong with me so I've learned to
compensate as a normal matter of course. But compensation only helps so much.
Doctors refuse to admit they know nothing about it but want to charge you
anyway. There are no helpful organisations to deal with the effects. And you
don't qualify as a visually-handicapped individual. Getting and keeping a
drivers license is a tooth and claw experience.
All I really want is a good, dependable, and accurate source of information
on what is known about this, it's possible secondary ramifications, current
research and past experiments, and the like. I've been spectacularly
unsuccessful (like bilked by crooked doctors) til now. Even a web search only
came up with a couple of articles that mention nystagmus as a possible symptom
of some forms of brain tumors, and the news article to which this is a
response.
To the original poster - my provider did not have a copy or your post - whose
son has this as well, I can only give you what has worked for me throughout my
life.
Don't steer him away from ANYTHING because you think his vision will make it
unreachable. I can drive, read voluminously, examine minute detail, engage in
sports, heck - I even play a mean game of pool. But to do these I had to not
know I couldn't. My mother was told by our doctor (Yes, A Kaiser doctor!)
that I would never be able to do any of these and that it would be best if I
was shipped to some learning disability class. Sheesh - I'm actually
gratefull that we were too broke. I just came up with a variety of extra
things to compensate for my lack of visual accuracy. I drive just as fast,
but a lot more cautious. Deducing distance from shadows, keeping a better eye
on my mirrors, looking 4 cars ahead for developing trouble, and keeping double
the car lengths between me and the car ahead. It works - no accidents. When
looking at something small I take a break and unfocus my eyes every 10 minutes
for 5 minutes, and I'm a damn good draftsman. In sports, I can't track a
moving ball worth anything. So baseball is out. But my peripheral vision and
peripheral movement detection is phenominal!!! I was the best PAL defensive
end in Santa Clara. And I loved soccer (football). At pool I look at my shot
from three angles - standing, leaning to the right and left - to get the
spatial relationships which provide an aim target and suggest english. I've
made money at 9-ball.
And the best answer I've found to a school bully who says "You're a freak
with wiggly eyeballs!" is to look him straight in the eye, stop 'em moving for
a sec, and say "Yeah, ain't in neat?". A freak with chutzpah gets friends and
girls. (Yeah, once I got slugged for it anyway. But I cried out "Oh my gahd
you've stopped 'em from moving!! So help me he actually leaned forward to see
them not wiggle and I decked him with an uppercut. <Muh-ha-ha-haaaaa>)
The other thing is - Exercising the eyes ACTUALLY HELPS!!!!!!!
Let me say that again...
Exercising the eyes ACTUALLY HELPS!!!!!!!
Not the silly damn eye acrobatics these doctors give you, but just using the
eyes in any difficult situation. And use glasses only when you actually need
them. They have a tendancy to make the nystagmus affected eyes lazy. I can
say this with some confidence since, at 36 years of age, my prescription has
improved each time I've had them checked. So improved eye muscle control
apparently can help overcome whatever sources the wiggling. Some of the best
exercise materials I've found are playing pool (or snooker), darts, juggling
(I do balls and pins. Not well, but I can do them.), arcade style video games
and especially pinball machines (believe it or not), and "Magic Eye" style
pictures. It took me 2 days in College to successfully use a stero-viewer for
the pictures in my chemistry book, and it took me 4 hours sitting in a
MacDonalds staring at the first Magic Eye book to get that damn cover to go 3D
(that was only a couple of years ago). Just about anything that will both
interest you and push you visually will help your eye control. Just expect to
experience more frustration than others and to quit BEFORE the headaches
start, cause once they start they're with you for awhile.
Hope that helps some.
And I will be quite grateful to anyone who can hook me up with some helpful
information on this subject.
------------------------------------------------------------------------------
Curtis Clauson <Lle...@inow.com>
The Snake Pit - Consulting SSSoftware by the byte
------------------------------------------------------------------------------
Paul Harris
writes:
lots snipped
Glad to assist in any way I can. I liked your insights and
suggestions. I've sort of thought that what we need is someone in my
profession to be like Oliver Sacks and write about these types of cases
to get them into the public domain.........
Just a thought.....
Anyway, some articles on this are by Yolton of the Pacific College of
Optometry and they were in either the Journal of the American
Optometric Associaton or the Archives of the American Academy of
Optometry.
Raymond A. Chamberlin
>
>. . .
>
>wiggly eyeballs!jj
>
>. . .
>
>nystagmus
>
>
So you have too big a dead band in your servo. Get rid o' some
o' that 'n' maybe ya c'n dump some o' the chutzpah along with the
nystagmus.
Raymond A. Chamberlin
Raymond A. Chamberlin
Raymond A. Chamberlin
Raymond A. Chamberlin
William Stacy
<ra...@sirius.com> writes:
5 identical posts, speaking of faulty servos...
Bill
Larry Abel
>ba...@ix.netcom.com (Paul Harris ) wrote:
>
>>In <4a39p0$a...@newsbf02.news.aol.com> chipp...@aol.com (Chippyforu)
>>writes:
>>>
>>>My son has congential nystagmus. I find that locating any information
>>>concerning current research into the cause and possible cure for this is
>>>difficult to say the least. IF anyone has a clue how I could find out
>>>what is going on with research into this please let me know. Thanks in
>>>advance.
>
>>It is interesting that about once a month this subject comes up. I
>>guess there should be something done about the FAQ in this area??? How
>>about it Scott care to do something with me about biofeedback????
>
>>The only thing I am aware of that helps this condition (does not "cure"
>>it) IF something can help, is biofeedback.
>
>>Let me know where you are and I will try to make a referral to someone
>>with a biofeedback device.
>
>>Paul Harris, O.D., F.C.O.V.D., F.A.C.B.O.
>>Director, Baltimore Academy for Behavioral Optometry
>
> Amazing! I actually found someone talking about this.
>
> I am 36 years old and have had Nystagmus all my life, and I also cannot find
>a smegging useful source of information about it. Apparently it doesn't
>qualify as an "interesting enough to be funded" subject.
>
>on what is known about this, it's possible secondary ramifications, current
>research and past experiments, and the like. I've been spectacularly
>unsuccessful (like bilked by crooked doctors) til now. Even a web search only
>came up with a couple of articles that mention nystagmus as a possible symptom
>of some forms of brain tumors, and the news article to which this is a
>response.
>
> And I will be quite grateful to anyone who can hook me up with some helpful
>information on this subject.
>
>------------------------------------------------------------------------------
> Curtis Clauson <Lle...@inow.com>
> The Snake Pit - Consulting SSSoftware by the byte
>------------------------------------------------------------------------------
>
>
Actually, there are a number of us eccentric souls who actually do research
on congenital nystagmus! It isn't all that well-known a condition, maybe because
poster children for it look the same as anyone else. We don't really know what
the causes are; it's often found in association with visual system defects (e.g.,
ocular albinism and retinal abnormalities) but these are not the cause. Some
folks with nystagmus see 20/20, but often individuals find that concentrated visual
effort makes their nystagmus worse, which makes them try harder, which makes their
nystagmus worse, etc... Because many people with congenital nystagmus find that
looking either in a particular direction, near, or both reduces their nystagmus and
improves their vision, both optical and surgical treatments have largely been
directed to make use of these "null angles." Recently, there's been a revival of
a surgical procedure wherein the 4 muscles that move the eyes horizontally are moved
pretty far back on the eye, reducing its oscillation. We've been studying this
procedure and found that the nystagmus generally gets smaller and vision a bit
better, though neither effect is very large. Other treatments reported to be
effective at least some of the time include, besides biofeedback, acupuncture and
vibratory stimulation of the neck muscles. Medications haven't been very effective
for congenital nystagmus.
There is actually a pretty large literature on nystagmus, but not much for the
general reader. If you can access Medline, a search should turn up a lot. A
fairly recent overview of the literature can be found in the book *Neurology of Eye
Movements* by RJ Leigh and DS Zee, 2nd edition. I don't know of any recent review
articles.
I'd like to second the previous poster's emphasis on not getting sidetracked into
the "visually disabled" path, unless the person w/nystagmus really *is* visually
handicapped (and that's often because of something else wrong with their visual
system). The presence of wiggly eyes does *not* mean that they often can't pretty
do the same things as anyone else, maybe with a little accomodation (e.g., optimal
seating placement in a classroom). It's too easy for a child to get sucked into
the system and spend the rest of his or her life being told what is impossible for
him or her to do, without any real basis for the assertions.
Hope that helps a bit. If anyone *really* wants, I can drone on about nystagmus
at greater length. I can also provide pointers by e-mail to people working in the
field, should anyone want to follow up on it.