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When my symptoms began 1985-ish
When diagnosed 2000
My symptoms
Shimmering, twitching, twisting up to 40 degrees, fatigue, pain, nausea, stumbling, whining
Symptom triggers
Sunlight strobing, stress
Affected eye (right or left) Right
Wear glasses? Yes, since age 8-9
Is SOM eye vision weaker/stronger than 'good' eye? Weaker and getting worse at much faster rate than my other eye
Meds I've tried Tegretol, Neurontin, Zonegran
How meds worked (or didn't) Too sedating, no beta blockers because of asthma
Other treatments Chocolate
Current SOM status Not currently taking anything, thinking about surgery
Current age 58
Gender Female
Name Juds
Additional thoughts
Creator juds
Updated 7/17/2005
 
When my symptoms began 1983
When diagnosed 1983
My symptoms Constant shimmering, double vision, pain from eye twisting, eye & and facial fatigue, whining
Symptom triggers Staring, Strobe light, Looking right, Stress, Fatigue
Affected eye (right or left) right
Wear glasses?
Is SOM eye vision weaker/stronger than 'good' eye?
Meds I've tried Tegretol, Neurontin, Zonegran, Topamax
How meds worked (or didn't) Worked briefly, got loopy, quit
Other treatments Head stand in bath tub on full moon.
Current SOM status Slight shimmer, much double vision
Current age 52 today, 53 next week!
Gender Female
Name Ms.JB aka Jeanie
Additional thoughts KEEP Posting! It works best!
Creator MSN NicknameMsJB2
Updated 4/17/2005
 
When my symptoms began 2000
When diagnosed 2001
My symptoms
eye twitching, double vision
Symptom triggers
symptoms present all the time with the exception of an occasional calm period
Affected eye (right or left) left
Wear glasses?
Is SOM eye vision weaker/stronger than 'good' eye?
Meds I've tried Tegretol
How meds worked (or didn't) didn't stop symptoms, too sedating
Other treatments
Current SOM status status quo
Current age 60
Gender female
Name Tissi
Additional thoughts
Creator MSN NicknameTistn3
Updated 4/17/2005
 
When my symptoms began January 2005
When diagnosed February 2005
My symptoms
Vision jumps - inability to focus.
Symptom triggers
Nothing concrete yet.
Affected eye (right or left) Left
Wear glasses?
Is SOM eye vision weaker/stronger than 'good' eye?
Meds I've tried Trileptal
How meds worked (or didn't) Perhaps
Other treatments Exersize
Current SOM status on/off
Current age 33
Gender Male
Name David
Additional thoughts
Creator MSN NicknameMordy003
Updated 4/18/2005
 
When my symptoms began 2003
When diagnosed Not officialy,yet. Mostly self diagnosed. (Neuro said it was caused by earwax!)
My symptoms
Shimmering, jumping, double vision.
Symptom triggers
Not sure!
Affected eye (right or left) Lefty
Wear glasses?
Is SOM eye vision weaker/stronger than 'good' eye?
Meds I've tried None
How meds worked (or didn't)
Other treatments None
Current SOM status shimmering (double vision subsided)
Current age 25
Gender Girly
Name Specialkay951(Kay)
Additional thoughts Just started working @ eye clinic, hope to get more answers! (and it's not caused by earwax!)
Creator specialkay951
Updated 4/23/2005
 
When my symptoms began 1985 I think
When diagnosed 1999 - Check out the UK's fast diagnosis (sigh)
My symptoms Wobbling, twitching, twisting and pulling every 11 seconds (double vision) followed by 15 seconds of normal vision.
Symptom triggers None but tiredness and illness definitely makes it worse. I think I got it when I had glandular fever at 11 years old - my first recollection of it.
Affected eye (right or left) Left
Wear glasses? Yes = short sighted
Is SOM eye vision weaker/stronger than 'good' eye? Weaker
Meds I've tried Tegretol
How meds worked (or didn't) Terrible allergic rash so didnt try for long.
Other treatments Sleeping - a good 9 hours EVERY night really keeps the wobble to a minimum.
Current SOM status Ongoing wobbling, no remission. Read with right eye only. Drive with head permanently tilted!
Current age 30
Gender Female
Name Jo
Additional thoughts Keep in contact, it helps.
Creator MSN Nicknamejoblob28
Updated 7/21/2005
 
When my symptoms began 1999
When diagnosed 2000
My symptoms
Begins with progressive "numbing" of right eye, followed by rapid twisting motion of eye.  All results in inabillity to focus,double vision, vertigo and rarely nausea.  If symptoms are bad enough, I get intense pain behind right eye.  The twisting motion of eye causes a movie-projector-like flickering of vision and in some instances a stacking of horizons (instead of side-by-side).
Symptom triggers
Not sure of all, but definitelly bright sunlight and reflections off of snow.  I have never found that stress and/or caffeine affect it whatsoever.
Affected eye (right or left) Right
Wear glasses?
Is SOM eye vision weaker/stronger than 'good' eye?
Meds I've tried Tegretol, Betoptic, Topomax, Neurontin, Zonegran, Namenda
How meds worked (or didn't) Best meds in order: Namenda, Zonegran, Neurontin
Other treatments Dark Chocolate
Current SOM status Rare symptoms and mild if they occur
Current age 40
Gender Female
Name Jen
Additional thoughts
Creator MSN Nickname_DoubleVision_
Updated 4/26/2005
 
When my symptoms began Spring 2000
When diagnosed May 6, 2005
My symptoms
A slight tugging sensation in the left eye which signals an episode in which the eye will not focus for up to 10 seconds...sometimes longer.  The right eye struggles to compensate but the only way I can focus at these times is to close the left eye.  I regularly experience headaches from the strain of trying to focus.
The symptoms began around the same time as I had Bell's Palsy.  At that time a neurologist ordered extensive blood work which revealed low B-12 and it was later determined that this was due to pernicious anemia.  The doctors who diagnosed my SOM suggested that it may have been caused by the B-12 deficiency but it was unlikely that it was a result of the Bell's Palsy.
Symptom triggers
Light and sometimes movement of the eye.  Being sick, overtired or stressed or any combination of these.
Affected eye (right or left) left
Wear glasses?
Is SOM eye vision weaker/stronger than 'good' eye? stronger
Meds I've tried zilch
How meds worked (or didn't)
Other treatments close the eye
Current SOM status 4 to 8 episodes/minute - constant
Current age 50
Gender Female
Name Zeeada
Additional thoughts Doctor is in the process of ordering an MRI before considering medication. This will take forever!
Creator MSN NicknameZeeada
Updated 7/24/2005
 
When my symptoms began 1997
When diagnosed 1999
My symptoms
Right eye jumpy and it was difficult to see while driving and using the computer.
Symptom triggers
Stress, stress and oh yea the now ex-wife!  Seems as though now that she is gone life is less stressful.  The newer improved wife is much less stressful and understanding.
Alcohol also triggers the symptoms
Affected eye (right or left) right
Wear glasses?
Is SOM eye vision weaker/stronger than 'good' eye?
Meds I've tried B-12, B multi, Bilberry
How meds worked (or didn't) 1000 grams of B and Bilberry work.
Other treatments Spinal manipulation and massage in the c1-c4 area.
Current SOM status Remission for the most part (if symptoms act up then I mega-dose with B and Bilberry **** Not recommended until you talk to your physician *****)
Current age 35
Gender Male
Name Jason
Additional thoughts I tend not to stress over the little things and life seems to move smoothly.
Creator Jason
Updated 5/23/2005
 
When my symptoms began 2004 (after a line drive to the head with a softball)
When diagnosed 2005
My symptoms
Vision "jumping", double vision, eye pain, headaches, constant neck pain from tilting my head to the right, bouts of depression and whining.
Symptom triggers
Staring, sunlight, holding my head up straight instead of the tilt, stress, fatigue
Affected eye (right or left) left
Wear glasses?
Is SOM eye vision weaker/stronger than 'good' eye?
Meds I've tried Tegretol, neurontin, topamax, trileptal, dilantin, lamictal, currently taking baclofen
How meds worked (or didn't) Nothing has worked so far, most make me tired some make me agitated and they all effect thinking straight and my memory
Other treatments I wear my eye patch alot cause I get tired of trying to keep my eye closed.
Current SOM status Symtoms going strong, currently taking baclofen which is a muscle relaxant, it's helping with the double vision
Current age 40
Gender Female
Name Lisa
Additional thoughts I'm currently off work on medical disabilty (since April) trying to find a drug that will work. Does anyone know.....is surgery really an option with SOM?
Creator MSN NicknameFrustratedLisa1
Updated 7/7/2005
 
When my symptoms began Summer 2004
When diagnosed Spring 2005
My symptoms Right eye shaking - intermittent shaking of visual field Infrequent migraine type visual disturbances. Migraine headaches. Continuous upper and lower eyelid spasms (right eye)
Symptom triggers SOM is sometimes triggered by looking at patterns of lines or by driving for extended periods of time.
Affected eye (right or left) right
Wear glasses? yes
Is SOM eye vision weaker/stronger than 'good' eye? not that I have noticed
Meds I've tried none
How meds worked (or didn't) none
Other treatments I close my eyes and it MAY go away for the time being.
Current SOM status Intermittent
Current age 35ish
Gender F
Name Tracy
Additional thoughts My mind is blank!
Creator MSN Nicknamelevtra
Updated 7/18/2005
 
When my symptoms began 1993
When diagnosed 1993
My symptoms
A sudden slight twitching of the eye...eventually led to full blown spasms with double vision.  My eye doctor had told me it would only last 6 weeks...I had full blown attacks daily for an entire year and then it just stopped. Have had symptoms since, although not for as long a period.
Symptom triggers
Stress, lack of sleep, stiff neck, bright sunlight at times.  Also, had an episode after my gall bladder surgery. 
Affected eye (right or left) right
Wear glasses? Since age 11
Is SOM eye vision weaker/stronger than 'good' eye? stronger, my good eye is now my bad eye due to glaucoma
Meds I've tried imipramine, clonazepam, diazepam, gabapentin, lorazepam
How meds worked (or didn't) imipramine(felt very uneasy), clonazepam(terrible headaches), diazepam 5 mg qhs works very well during full blown attacks. gabapentin 300mg/bid works great to stabilize, lorazepam 1mg/hs to help with sleep works too.
Other treatments chiropractor every 8 weeks
Current SOM status remission, with slight quivering at times, stress leads to bad spells.
Current age 48
Gender female
Name kelbel59
Additional thoughts Of all the things I've lost, I miss my mind the most.
Creator MSN Nicknamekelbel59
Updated 7/20/2007
 
When my symptoms began November 2005
When diagnosed August 2005
My symptoms
Double vision, right eye vision vibrating. Double Vision is not all the time but sometimes bad enough to make me nauseous.
Symptom triggers
None that I can find yet, but I am looking.
Affected eye (right or left) Right
Wear glasses? Yes
Is SOM eye vision weaker/stronger than 'good' eye? It seems to be weaker but I can't tell. Because of the vision vibratring
Meds I've tried Tegretol
How meds worked (or didn't) The Jury is still out I just started yesterday.
Other treatments Prayer
Current SOM status 3 to 4 episodes a day.
Current age 41
Gender Male
Name Troy
Additional thoughts
Creator MSN Nicknameciwsmk15
Updated 8/15/2005
 
When my symptoms began 1998
When diagnosed 2001
My symptoms
started with double vision, then turned to wobbling, twisting and jumping of images in my right eye
Symptom triggers
stress, lack of sleep, bright light, reading for a long time, tilting my head to the right shoulder, alcohol (even a glass of wine), sport like riding a bike or aerobics
Affected eye (right or left) right
Wear glasses? yes
Is SOM eye vision weaker/stronger than 'good' eye? weaker
Meds I've tried Tegretal, now Carbamazepin Sandoz (200 mg)
How meds worked (or didn't) sedative, perhaps damaging my liver in the long run, but better than taking nothing
Other treatments sleep
Current SOM status Ongoing wobbling, better after Carbamazepin. Sometimes (esp. in the evenings) read with my left eye only
Current age 43
Gender female
Name Lena
Additional thoughts trying to enjoy life in spite of SOM, hope you'll help me!
Creator MSN NicknameLena1402
Updated 8/22/2005
 
When my symptoms began 1998
When diagnosed 1998
My symptoms
Double vision; vibration and torsion in right eye; severe neck/upper back pain from constantly tilting my head to the left to see straight!
Symptom triggers
Maybe stress and lack of sleep; most of my bouts seem to occur in the spring/fall when I am also dealing with sinus pressure from allergies
Affected eye (right or left) Right
Wear glasses? Yes (contacts)
Is SOM eye vision weaker/stronger than 'good' eye? About the same
Meds I've tried Tegretol, Neurontin
How meds worked (or didn't) Minor improvement but significant side effects, so I stopped taking them
Other treatments Plenty of sleep, stress reduction, patience
Current SOM status Bouts lasting about 2 weeks, then remission for 3-12 months
Current age 29 (a few weeks shy of the big 3-0)
Gender Female
Name Ashley
Additional thoughts It is SO nice to interact with people who understand this rare condition. After 7 years, I am very happy to have found you!
Creator MSN Nicknamecarolina_girl_1998
Updated 9/7/2005