Hey, Tere, nice to hear from you.  Not so nice is that I am only the first to share with you that where SOM is concerned, there simply isn't any likely.

 

Not only is SOM unique to each person, but your experience is going to continue to be as unpredictable as anything is ever going to be.  The chances, I am sorry to say, of you being able to expect regular cycles is remote.  On the flip side, you may be one of the lucky ones (if anyone having SOM can be thought to be lucky, and I do, but that's another thread) who does have fairly regular cycles of  symptoms.  There are a few of us who had that in the early days of our SOM, and some who continue to have fairly reliable expectations on when their symptoms are likely (there's that word again) to worsen or improve.

 

For me, one of the reasons that I was reticent about seeking medical help over twenty years ago was that my symptoms were only a problem in the spring and autumn.  Looking back, it is bittersweet that some of my theories were so childlike.  The first one to which I clung for many years is that there was a direct connection to the angle at which the sun entered the atmosphere at different times of the year, according to the cyclical rotation of the earth.  It still resonates with me, but now I am able to see it for the comfort-inducing exercise that I needed it to be.  Now it is amusing; then it was all I had.

 

Whatever else happens, you did have a wonderful summer and we are all very happy to hear that, as well as hearing from you.  You know, you don't have to be drowning in symptoms to write; we'd love to hear from you about any old thing.  I've been in the UK, and it would be nice to be reminded of how interesting an experience that can be.

 

Don't be such a stranger.

Hi Tere

I'm one of the lucky ones. I have been in remission for a long time. My som gradually started to get better until it stopped altogether. I can't say what triggered the remission, only that I'm very glad it hasn't started again. I hope yours will stop all together too. Meanwhile, know that I pray every night for something that will help everyone with som. Hang in there and enjoy the good days.

Pat

Thanks for popping in, Pat.  As one of our true elder members, you know wise and all that, not only is it nice to hear from you, but your decades of SOM experience and your long duration remission make what you have to share very important, especially for our newer members.

 

Remission does happen, and everyone needs to hear about your journey.

 

Please don't be such a stranger.

Juds,

ELDER!!!!!!!! Oh well I guess I'll still pop in if these poor old bones can handle it. LOL I don't know how much wisdom I can impart but I do know that remissions do happen. I had about 1 1/2 years of pretty constant episodes. Then they started to get fewer and fewer until they stopped all together. The doc had me on clonasapam ( not sure of spelling). It is one of the seizure meds. The 2 side effects I had from it were sleepiness and a a slightly upset stomach. I did find chewing gum helped the nausea. I've been in remission for about 10 years. I hope some of you can say the same thing someday.

If you have any questions or just want to talk, I'll be popping in more often.

Pat

 

Yes, ELDER!  I was referring to your wise wisdomy aspects, but (it must be said) that you are up there in years, just like me, although I will admit that you are probably a few weeks younger than I am.

 

I know, from past postings of yours on our previous and now lost sites, that you have tons of important things to share.  Some of them may even be interesting.  I'm just not sure about the interesting part as I'm old and my memory is unreliable.

 

You better keep your word and be more active here.  If you don't, I'm driving down there for pork steaks (shudder).

Hello,

That must have been such a pleasant 4 hours for you Tony!! Happy for you!  I actually had a little bit of haapiness myself yesterday.  I had perfect vision for about 10 minutes.  Very brief but I was so grateful for every second!  It has been months since I have had even 10 minutes.  Could it possibly be that this increased dosage of the Topamax is starting to work?  Fingers crossed!!  Kerry

Kerry, we all hope that your med is beginning to work for you.  But, whatever causes the remission (no matter how brief) they are wonderful things, aren't they?  Even a few moments of no movement is precious.  Enjoy every single one of them. 

 

I always had so many theories (my term for fantasies ) about how my vision problems worked, what caused them, what the triggers might be, how I could affect them, and on and on.  I would try all kinds of weird things, many of which are too weird to share, sad to say.  Like Tony (thinking that actually thinking about symptoms makes them happen), I was certain that my symtoms were my fault somehow and that any relief from them must be my doing as well.  My, what a powerful person I believed myself to be, practically a super-hero, with all my super-duper vision altering powers.  Sigh.  We're such human beings, aren't we?

 

Whatever causes our symptoms, we have no influence over how they manifest.  The only effect we can have on stopping them is limited to our pathetic experiments with medications, noodling around with calming and meditative techiniques and the like.  Sometimes the best that we can do is to try to ignore them.  Hah!  Like that works.  Sometimes I just crack myself up.  We are so willing to take responsibility for the less-than-pleasant things that happen to us.

 

So, just let yourself go and enjoy your remissions, no matter how long they last.  Eat lots of chocolate or hamburgers loaded with jalapenos or whatever makes you feel better.  Perhaps not lots, but enough to alter your mood.