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!!!!!!