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1999
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2001
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shaking vision in right eye, headaches from prolonged eye trouble, pain in my left side of my neck from head tilt, and i recently found a lump at the base of my skull in my neck (doctors say it's a swollen lymph node). my vision tends to get worse when that is swollen... the swolleness comes and goes.
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allergies (not good when you live in cincinnati, allergy capital of the world), stress, hungry, tired and when i am playing sports (basketball, soccer, ultimate frisbee, jet ski racing, etc.).
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right
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yes
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can't remember... i'll get back on this
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some kind of beta blocker eye drops but can't remember the name
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didn't
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tylenol allergy med, sleep, chiropractic and massage work VERY well
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was good for a while, but now i'm under stress
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32
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Female
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Tiphanie
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more awareness of this so people don't think i'm cookoo
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  Havasugirl3
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9/16/2005
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| |
|
1998
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2004
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I started having double vision and that strange "twitching" in August of 1998. I went to several opthamologists and they had no idea what was wrong. Some of them were very understanding, but puzzled, others acted like I was CRAZY. I went into remission in December of that same year. I was busy working, taking care of children, etc and soon my "mysterious eye twitching" ceased. In December of 2003 I had my gall bladder removed and as I was recuperating from my surgery it returned with a vengenance! In August of 2004 my opthamolgist made an apt for me with a Neuro-Optho. Needless to say, my eye "did the dance" and he knew in just a few minutes exactly what was wrong.
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Stress, fatigue, caffiene, barometric pressure......these hurricanes here have been a nightmare
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left
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|
only readers
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|
stronger
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neurontin, primidone, diazapam
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|
low dose diazipam is what works best
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|
patching
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semi remission (1 or 2x a week)
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48
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Female
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Dale
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|
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Clair Lahr
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9/30/2005
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| |
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2002
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2005
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My first episode lasted about a week. It was after an evening of too much to drink. I have never been so hungover. I eventhought perhaps someone put something in my drink. I wasn't bothered by it again till 3 months ago. My right eye started pulling inward and twitching.
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Too much television. Alcohol but not the evening of the drink but the next day. Sunlight, fatique, first thing in AM approx 10 minutes then better till lunch, then better till supper then better. Reading in bed at night. sometimes I read with one eye shut. Hey what ever works!!
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right
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yes extremely near sighted, mainly wear contacts
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same, good vision except during twitch
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none
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|
na
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neuo ophth having do"pencil push up" watch a pencil as you bring it closer to your nose
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twiching and pulling torqueing daily waxes and wanes thru the day
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41
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female
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tammyjennings1
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glad to hear I'm not the only one and I'm not crazy
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tammyjennings1
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12/20/2005
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| |
|
Aug 2005
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Aug 2005
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|
Nearly constant shimmering on the left side. Intermittent twithcing which is actually visible to other people if they really look. Symptoms varygreatly from day to day.
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Stress, lack of sleep, bright lights
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Left
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Yes
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|
Weaker
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|
Timolol, Memantine, Mast Cell Inhibitor, Neurontin
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|
None worked
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|
Chiropractor, Accupuncture, Alpha Biotics, Cranial-Sacral Therapy (none worked)
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|
Going strong
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|
34
|
|
Male
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|
ZestyChicken2
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|
Have 4th nerve compression - confirmed via high resolution MRI
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|
ZestyChicken2
|
|
11/17/2005
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| |
|
2001
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|
2005
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|
Vertigo, earthquake vision, migraine (visual / aural symptoms only), pain behind eye.
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Stress, heavy use of eyes (computer, reading, etc.), PMS, flickering lights, eye fatigue
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Left
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|
Yes
|
|
Weaker
|
|
Timolol, zoloft, xanax
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|
zoloft makes me less anxious, xanax made me too tired, timolol seems to help
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|
Flonase, eye rest
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|
mildly active
|
|
heehee...OK, 47
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|
F
|
|
Sandra
|
|
Have you hugged your cat today?
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|
pixelsofme
|
|
11/26/2005
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| |
|
1999 (I think)
|
|
2005 (July )
|
|
Sensitivity to light, blurred, double, tilted vision,
some nausea...kink in the neck from compensating
numbness on my face
|
|
none that I have figured out yet....almost constant
|
|
right
|
|
no
|
|
no 20/20 vision
|
|
Tegretol
|
|
did n't really help with the eye twitching and made me too tired to function
|
|
none
|
|
frustrated....almost constant
|
|
37
|
|
female
|
|
Ann
|
|
|
|
AnnStewart3
|
|
12/16/2005
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| |
|
2000 at the same time as I had the marvelous condition of Bell's Palsy
|
|
2005 - had to go to another province Nova Scotia as no one in New Brunswick had the knowledge or equipment to diagnose it.
|
|
Double vision, shimmering, headaches, nausea and frustration!
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|
Bright light, stress, illness, being tired and reading. Lately I find that my progressive lenses are contributing to my symptoms.
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|
left
|
|
unfortunately
|
|
stronger
|
|
none, Can't find a doc who has any idea what to perscribe.
|
|
dandy!! not
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|
rest... works relatively well when the world cooperates!
|
|
out of control! Would you just stand still please!?!?!
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|
51
|
|
female
|
|
Zeeada
|
|
Well...hmmmm...you don't want to know!
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|
Zeeada
|
|
4/1/2006
|
| |
|
2002?
|
|
Jan 2006
|
|
Dec 2005 - stationary objects moved up and to the right through my left eye - - in a shakey pattern which seemed to have a pattern similarto a pulse. Movement was fairly continual, but not entirely constant. I noticed the right side of line-items (i.e., bulleted items on a computer) moving up at an angle, moreso than the left side of the same line. I had partial relief by looking through the top of my eyes. More symptoms were experienced with computer usage, reading (sometimes), tv watching (larger screen especially), and anything where I was REALLY trying to focus - - just chatting with someone wasn't always a problem. Prior to that, I had one or two short episodes (a few weeks) but short enough and mild enough to not get a dx or not pursue further.
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|
Initially triggered by intense focusing - i.e., computer, reading, darkness with some bright/distinct lights, large screen tv, different lighting (but I could never exactly pinpoint it - - sometimes fluorescent lights, sometimes dim lighting). After triggered one any day, it doesn't calm down until the next day. If I don't do anything to really focus, it's not too bad.
|
|
Left
|
|
no, but contacts for near-sightedness
|
|
not sure
|
|
Neurontin; topomax
|
|
Neurontin worked for a while at 300 mg 3x/day; problems resurfaced after a few months; we increased it to ~3100 mg/day, but didn't find total relief. Starting to incorporate Topomax. More to come...
|
|
|
|
Pain in the butt
|
|
37
|
|
F
|
|
|
|
|
|
maxpaws
|
|
8/24/2006
|
| |
|
it began 1999 7 years ago
|
|
3 years ago
|
|
my right eye
|
|
|
|
right
|
|
no
|
|
|
|
tegratol baclofen revitril etc. nothing works
|
|
tegratol (alergic reaction in my mouth) baclofen and revitril ( i am getting tirred from the drugs)
|
|
MRI scan and other smal treatments
|
|
|
|
28
|
|
|
|
Remko Saarloos From Holland
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|
|
|
desaar1
|
|
4/24/2006
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| |
|
I think in 2001, may have been earlier as I think of it. I was into X-treme sports before they were a sports. Been knocked unconsious up to 12-15 times. Been hit in the head to the point of seeing stars countless times. Have broken many, many bones, I think I'm trailing Evel Kanivel for the most injuries.
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|
July 2003
|
|
right eye, vision jumping up and to the right, nausea, dizzy, eyes always watering now, memory loss-no short term memory...friend/family get pissed off at me, don't understand. legally blind from birth in left eye 300-400/20(note) extremely bad balance, have to walk slow if it is not to severe, forget it if severe sometimes cyclical, it always seems to be there but on and off in severity burns me out after severe episodes, like a bad migrain headache would in which I've struggled with all my life
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|
small stripes. i.e. shirts, signs, etc. flashing flourecent lights, looking at a pc monitor from the side or for extended periods of time or for a short time, depends. stress depression sleep depravation extended periods in the sun there's probably more just can't think of them
|
|
right
|
|
yes, for 6 years now
|
|
legally blind in left eye since birth
|
|
wow, about 5-6 different kinds, can't remember their names sorry
|
|
Only one with any relief at all...Tegratol but does not completely eleiviate symtoms and has bad side effects.
|
|
none yet, with blind left eye seriously concerned about any intrusive therapy, so I resort toslamming my hands in the car door to take my mind of it.
|
|
active, comes and goes in severity, can't plan anything as it dictates my activities,
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|
47
|
|
Male
|
|
Ted Ryan
|
|
seriously screwed, had to get treatment because I thought of eating a bullet, just thoughts-wouldn't do it, alot of people worse off, it just stoppedmy life dead in it's tracks, tired...tired of no future.
|
|
tedder
|
|
7/13/2006
|
| |
|
2006
|
|
2006
|
|
Left eye wobbles and I feel like my eyes are disconnected
|
|
Lack of sleep, stress, skipping meals
|
|
Left
|
|
Yes
|
|
Weaker
|
|
Tegretol
|
|
Just started so not sure yet
|
|
None
|
|
Very active
|
|
33
|
|
Female
|
|
Karen
|
|
Sleep is really important
|
|
Karencatherine
|
|
6/15/2006
|
| |
|
March 2006
|
|
June 2006
|
|
Shimmering, shaking vision in my right eye, eye pressure and pain, headachs, my perception is off, feel like i'm kind of out of reailty
|
|
if i'm tired, if I look down, or to the left, who knows Comes for about 12 days every 3 months
|
|
right
|
|
yes, and contacts
|
|
stronger
|
|
Tegratol, I'll let you know
|
|
|
|
Haven't tried any
|
|
remission for 1 week
|
|
26
|
|
Female
|
|
Stephanie
|
|
Sometimes I think it would be better if I could jab my eye out with a pencil.
|
|
cabskc
|
|
7/10/2006
|
| |
|
2002
|
|
Autodiagnosed. June 2006 (when I found this site)
|
|
Shimmering vision in my right eye. Diplopia or more exactly distorted vision when the "wrong" angle of my right sight mixes with the "good" angle of my left sight (does it make sense? :))
|
|
Worse when I wake up in the morning. During the day I don't know what exactly triggers the symptoms...maybe anxiety?
|
|
Right
|
|
No
|
|
Same
|
|
no meds by now
|
|
|
|
|
|
3 days symptom free! I can't believe it!
|
|
24
|
|
female
|
|
Judit
|
|
I used to have migraines.
|
|
haize888
|
|
7/14/2006
|
| |
|
1982 or 1983
|
|
1995
|
Double vision, oscillations, lightheadedness and head pressure but never pain. I have had about 6 episodes since it began, each lasting several months and not returning for anywhere from 1-4 years... Only one Opthamologist has ever seen and diagnosed my sypmtoms since they subside everytime I go to the Doctor! But, NO physician will diagnose SOM without witnessing an episode themselves...I don't blame them for this. But this is why it is so difficult to diagnose. I have had MRI's and MRA's (which are more specific to soft tissue swelling or artery & nerve compressions that could be causing the symptoms). Each time, the results are completely negative. Both tests are done simultaneously, so have both if you can. I have on occassion been diagnosed with Sinus Congestion based on a regular X-ray at my ENT doc's office. He treats that and what I've noticed, is my symptoms DO vanish.
|
It is triggered by wine, coffee, stress, sinus problems, driving, reading, working on the computer. But when I am in complete remission, none of these trigger any symptoms.
|
|
Left
|
|
Just for reading
|
|
Weaker, I think!
|
|
Ibuprofen, nasal inhalers, antibiotics and Sudafed for the sinus problems which I believe is the cause.
|
|
Some successes but not always
|
|
None, since I refuse to take anti-seizure drugs like Tegretol or to have the surgery recommended.
|
|
Having an exascerbation (return of symptoms) presently which began in November 2005. Again, I have had Left sinus congestion off and on since that time too!
|
|
51
|
|
Female
|
|
Patrizia
|
|
|
|
Patrizia32855
|
|
7/30/2006
|
| |
|
September 2005
|
|
November 2005
|
|
Double vision, bouncing/shaking and twisting right eye. Pulling, twitching area below eye. Also, dry painful right dizzyness or light headedness, loss of balance, ringing/roaring in the ears, nauseau, tension and anxiety
|
|
Flickering/pulsating lights such as in a Flourescent Light or a computer in need of repair. Seems like lack of sleep, distress, worry and fear make symptoms worse.
|
|
Right, but have had some pulling and twitching in left eye without the other symptoms (double vision etc.)
|
|
Yes
|
|
Stronger (somewhat)
|
|
Timolol Maleate Ophth. Sol., Betaxlol .5%
|
|
Timolol didn't seem to do much other than cause my affected eye to burn when taking the medicine. Betaxolol seems to reduce the pain, dryness and double vision but doesn't stop the twitching or shaking right eye completely
|
|
Self prescribed Mindful Meditation, exercise, Sacrocranial Massage, Neuro PT--special exercises for the eyes to prevent nystagmus
|
|
Improved but still having symptoms. Hardly ever have double vision and the medicine seems to reduce the pain and dryness of the SOM Eye
|
|
62
|
|
Male
|
|
J.E.D.
|
|
I am intrigued and helped by the SOM ongoing discussions. Maybe I will not have to re-invent the wheel in terms of finding a permanent solution to the SOM. I would like to see more discussions about alternative approaches such as Acupuncture, Massage, and more about why the folks who take medicines are getting symptoms reduced. Was it the medicines that helped or did the SOM simply go into remission. If I understood more about what helps others and why, I might be able to believe more in some of the medications for SOM (become convinced that they will work and gain from the Placebo Effect if nothing else.
|
|
ambothered2much
|
|
8/23/2006
|
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