Who diagnosed you
An ophthalmologist in my town, to whom I had gone for one, final attempt at finding out what was wrong with my vision.  This was in early April, 2000.  If this appointment had a similar result to the last one with the other doctor four years previous, I was determined to find a way to live with the disability that was taking increasingly greater parts of my life away from me.

How you found/was referred to that person
I found a listing for the clinic in the telephone book and just took the first appointment that was available.

Proposed causes, i.e. head injury, illness
None, although I was in two major accidents before the age of eight years old.  Both involved head injury, but did not cause any continuing problems.  My doctors do not see them as the cause of my SOM.

If you have been diagnosed with nerve compression
I had an MRI that showed possible nerve compression.  Because I would never consider nerve compression surgery, this is a non issue for me.

How SOM was explained to you
I was told about how the muscle and nerve interact inappropriately and all the rest.  It was bewildering and scary during the testing periods that eliminated all the other, much more horrible things that might possibly be wrong with me.  There was very little information available about SOM then, and my research was not as fruitfull as I would have wished, but I continued, nevertheless.  You know what they say, hope springs eternal, and it certainly does for me.

Your feelings and response to your diagnosis
I was thrilled to have a diagnosis, but not sure what any of it meant.  I went through a short (not short enough!) period of anger towards the ophth who was so unkind to me in 1996.  I've since gotten over that.  Mostly I just sort of pity him now, so I clearly still need to work on that whole anger thing. 

The first treatments suggested to you
The pediatric neurologic ophthalmologist to whom I was referred started me on carbamapezine/Tegretol. 

Your response to those suggestions, how you felt, what you did or did not do
I have tried that medication several times, finally having to quit it when my effective dose was too sedating.  In the following years I tried other medications, without relief.  I was unable to try beta blockers because I have asthma.  The medication route was so frustrating for me.  Trying and  experimenting with expensive medications, hoping that they would work, sticking with them long enough to reach effective levels.  Makes one so weary and frustrated.

Remissions
In the beginning, my symptoms were random and infrequent, but I hadn't any idea that they were actually remissions.  As time and the torture went on, I knew that the absence of symptoms were remissions, and I learned to appreciate and take full advantage of them to do things that were difficult whilst experiencing my SOM symptoms.  I had surgery in July, 2007, but prior to that I had been without any remission since early in 2001.

Research that you might have done on your own
I went online as soon as I got home from that first appointment, searching for anything about superior oblique myokymia.  There was a handful of abstracts and similar document links, but also one of Jeanie's that she had posted a year or so prior to my finding it.  I've always thought that that happened in January of 2000, but I recently found a file of e-mails (absolutely fascinating!!!!!) from that time, and my first contact with her was on April 18, 2000.  That first group had twenty members and it was all via e-mails to one another.  The first informal group were begun shortly after that  When it was lost in early March of 2002, one of our members started another online group, but just in case we lost contact again (horrible, horrible and very horrible experience) I began this group as a back up.  Around that time, another of the members of that first group began a forum at his university, which is still in operation.  Since then, I have scoured Internet resources, medical college libraries and my own physician resources.  I have hundreds of documents, which is nice, since there was scant information available even fifteen years ago.  The distillation of the best of those documents can be found on this site.

Current SOM status
I had a radical tenectomy type of surgery in July, 2007. I have been left with permanent diplopia/double-vision, that is taking much longer to resolve and heal than I had hoped.  The movement of my eye has stopped aside from the occasional pulling of my eye in an attempt to have some kind of binocular vision.  Time will tell if symptoms return, but I seriously doubt that they will because of the large piece of SO muscle that was removed.  I am hoping to begin experimenting with prisms in my eyeglass lenses by mid-summer of this year, 2008.

Your age 61
Your gender Female

I have a few extra thoughts.  This is not the history that I would have written about myself and SOM ten years ago, nor even a week ago.  Trying to keep to just the facts helped, of course, but time changes how I view what happened to me, and this is aside from the issues with memory.  I know that I will continue to remember things that I want to add here, and will do so when I am so inspired.   Writing this was more emotional than I would have thought, and that is why it is chock full of awkward sentences and misspellings.  But, I don't care because writing this was also comforting in a weird way.  And, let us not forget to thank Molly for stimulating this new aspect of information gathering.  OK, thanks, Molly!!!!!!

Hi.  It's Annie.  Will take these topics one-at-a-time because I think it's a fantastic way to gather information into an easily acessed place.

 

I'll check for accuracy, but it was about 16 years ago--around 1992.  Might have been earlier with symptoms I couldn't pin down since they were mild and infrequent.

 

Symptoms began as a rotating flutter and twitch in the eye with pressure above and around it, and a prodromal feeling similar to a migraine.  At first I thought that's what it was--kind of an odd headache with bizarre eye things happening. I began to recognize the odd tugging in my head and tender area around the eye as the beginning of an episode. There was tortion right from the first with the eye sometimes "locking" into diplopia before the twitching started again.  Early symptoms were spaced into widely-separated episodes, each lasting a few days.  I didn't run to the doctor at first because I thought it would go away, and that possibly I might be considered nuts if I described such peculiar symptoms. It goes with being the Queen of Denial.

 

Right

 

Again I must check, but it was after this had been going on for about a year.

 

  First doctor I asked was an optometrist.  He looked puzzled and suggested I was probably stressed.  But then, he had also tried to fit me with contacts without discerning that I could not possibly wear them due to an irregularity on my cornea. 

     Second doc was a very good ophth. but I had a long remission before I saw him, and didn't say anything.  (Reason--I haven't the faintest!)  Later, had to see another ophth. and I did tell her about it.  She was kind of testy about the whole thing, pretty much discounted it-- "If I can't see anything, then there's no way I know what you are talking about".  I remember that statement very clearly.  She sent me for a Lyme test and dismissed me--again somewhat crabbily.  Whacked my confidence to the floor.

       Somewhat later, it all started up again with worsening symptoms.  I felt as if the twitching was accompanied by confusion and a feeling of panic--and there was pain developing around the eye and in the middle of my head when a bad episode happened. I got worried, and I made an appt. with the nice ophth.  It seemed like it took forever to get in--and I was fearful that again, there wouldn't be anything to see and I'd be dismissed.  But he was keenly interested in my description, and did a complete exam.  He was able to see the twitching, called everybody in to look, and there was an on-the-spot conference.  I was lucky--had picked him out only because somebody said he was good, and he had a cute name. (Really.)  He explained that I could have a brain tumor, MS, or this SOM thing that was benign but troublesome.  It scared me that he wanted an MRI done ASAP.  When it was negative for awful things, I was sent straight to the pediatric ophth. who wanted me to see a neurologist (who, it developed,  knew diddly about eyes) and the pediatric ophth. confirmed the diagnosis. He is still my doctor, and he has been very helpful and interested in this whole journey.

 

 

No

 

As I recall, it was a pretty clear explanation about a muscle that twitches and what it controls.  The ophth. showed me where the muscle was on a model of the eye parts. I was reassured that it wasn't going to become a progressive illness and that my actual vision wouldn't decrease--at least as far as anybody knew.  I was told that treatment is limited, that it is not hereditary, that it rarely affects both eyes (all worries I expressed) and that it might go away and might not.  The doctor was interested in whether it was possible that the strabismus in the left eye had possibly caused undue stress on the right eye.  Later, it was determined that most likely, that was not a factor.  I was told that having SOM made me a rare bird and a person-of-interest, and that most ophths. never even see it during their careers.  Also, he told me, unfortunately, not a whole lot was known about the condition.

 

Well, there was relief to know what it was, that it wasn't fatal, that I was not crazy, and that nobody--this time--was going to be crabby because I had something unusual.  But I also remember thinking sarcastically, "Oh, lucky me".  Already, I was experiencing that helplessness of not being able to make anybody understand what was going on, or even finding anyone who was remotely interested in this peculiar thing that had begun to cause me a LOT of trouble, much more frequently.  I remember sensing that the doctors were kind of apologetic about not being able to help much and I experienced the start of the "being out of control" things that we all go through.  I was told to continue with the neurologist, so, dutifully, I did.

 

I had several appointments with the neuro.  Nice man, but slightly autistic, I thought.  He prescribed Tegretol, explaining that it was an anti-spasmodic, and that he had checked to see what the possible treatment for SOM was, and this was it. 

 

Being fairly well-behaved at the time, I went dutifully to appointments with the neuro, and had periodic appointments with the ophth. Took Tegretol until I had too many side-effects and absolutely no effect on the eye.  After I had my third car accident--a more serious one this time-- and realized that my thinking had slowed to a maddeningly sluggish and disorganized state, I begged off the Tegretol.  I also begged off seeing the neuro and asked my ophth if he would prescribe anything that might help in the future.  He agreed to do that--and I felt better about not having to see someone who gazed curiously at the eye and obviously had no treatment plan in mind.

 

I am in the category of those who start small, and eventually end up big.  Initially, remissions were frequent and complete.  I would believe that I was done with this, and just as I would begin to believe myself, another episode would start up.  They became more frequent, more severe, and lasted longer.  Finally, I realized that most days involved a degree of active SOM--but that there were better days and bad days and really bad days.  I remember about twelve years ago, I had an unexplained whole month of no symptoms whatsoever--and was amazed.  When the SOM returned very suddenly, I recall a lot of anger and helplessness.  Over the past five or six years, there has never been a day without symptoms.  It was the severtity of the last "really bad" spell, and the ongoing nature of it that propelled me toward surgery for sure.  But that is a story for another category.

 

Lots and lots and lots.  I think I know about as much as a non-doctor could know about my condition--without spending more time on the computer than I do living my life.  I have borrowed greatfully from the abstracts collected by Juds, so I didn't have to re-invent those wheels.  This is not a chore for me since I'm very curious by nature, and can get swept up in informal research just as long as I don't have to write a term paper.  It helps me immensely to know as much as I can about a conditon I may have.  Some people don't like to do that--I do--it's a matter of choice and personality.  I still keep searching.  Happily, there is MUCH more to be found now.  Years ago, it was so frustrating--a little sentence here, a paragraph there, a locked medical journal article someplace else.  Things have improved a lot on that front.

 

I had a tenectomy of the right superior oblique and a myectomy of the right inferior oblique in late October of 2007.  This was done by a specialist who I had consulted twice previously on the advice of my doctor here.  I have just had adjustments made to the right lens in the glasses prescribed post surgery--may have one more tweaking in the left lens but will wait to see how this latest adjustment works.  I am free of any SOM movement, my diplopia is well-controlled, and I've have had a very satisfactory result.  My vision is probably not totally "normal" but the improvement is beyond description.  I think "surgery" is a later topic area, so I will save details and share them in the appropriate place.  Now, I'll continue with my pediatric ophthalmologist here--the one I have been seeing for years.  At some point, , the entire journey needs to be told in its emotional and social totality--and I think there is a place for that, too.  This is just the facts--only the facts.  There is so much more to this condition than the clinical summary!

 

65

 

Female

 

 

Hi all~