Remissions are great, no matter how long they last.  It gives living in the moment an entire new dimension, doesn't it?  I always held out hope, in the latter years, that I would have even a small one, and I did, but they only lasted an hour or so.  Once, for four hours.  It was a lovely afternoon, but not nearly long enough.  I don't think that any remission is ever long enough.  We have a member who has been in remission for years.  She doesn't post, so I can be brave and just guess that it's been around five or six or something years.  But, that's just a guess.

 

Still, I'm very sorry to hear that you are back to your usual, twitchy self. 

Well, if that's the case, you better make sure that you get all the uninterupted sleep that you can.  It's interesting that you would share this right now, as I am working on the new message board and just decided to stop after crafting the thread about triggers.  Gosh, I would have given anything to have something on which to pin my symptoms.  I was never bothered by stress or lack of sleep or caffeine or anything.  Just bad symptoms all the time, all day, all night.  Whilst the movement is gone since the surgery, the constant diplopia is, well, that's for another time.

Karlman,

 

I’m sorry to hear that you’re out of remission.  When I was diagnosed 10 years ago I went into remission for 10 years.  However, my Doctor never told that it was a remission.  He just said that it had gone away.  So you can imagine my disappointment when it came back.  Especially since I never gave it another thought.  I just thought I had some funky eye problem that was cured.

 

I seemed to be slowly slipping back into remission now.  The “episodes” (as I call them) started coming less frequent and now I’ve actually gone almost 3 weeks without one.  Of course I’m still on my medication, but my Dr. wants to start weaning me off to see if they’ll come back.

 

Now that I know it only goes into remission and doesn’t go away all together, I guess I’ll never quite relax completely.  Especially since he said my remission periods would be less frequent as time went on. But, I like you, have noticed that stress and lack of sleep really do affect me.  (I’m becoming a fan of Ambien.)

 

I don’t feel like I have any room to complain though, when I read how bad some of the members here have it.

 

Hang in there, we’re all with you.

 

Cindyloowho

(Cindy)

Cindy, I am just guessing here, but I think that your ten-year-ago-doctor advice was what he believed or knew about SOM at that time.  Doesn't mitigate your frustration upon the return of your symptoms, but there are uncounted doctors, right this minute,who believe the same as your doctor did.

 

It is true that many persons with SOM do experience remissions that are shorter and closer in occurance as time goes on, but this is such a differing experience for each of us.  And, it troubles me when someone, you in this case, feels such helplessness when comparing your experiences with those of other members.  Your journey with your SOM is going to be totally and completely unique to you.  Your SOM is as bad as it can possibly be for you.  Just like mine is as crummy as it is for me.  And, every one else.  And, yes, you have every right (maybe even a duty ) to complain your little, twitchy head off.  As often and as vehemently as suits you.  As long as you're hanging, just let it all hang out, baby!!!!!

Cindy, it's like Klarman said, "It was fun while it lasted".  If you get a remission,  enjoy the heck out of it.  It might end and it might not. Who knows?  Been there.  With a remission, it seems better to live in the moment.  You probably can't help worrying--at least a little, but you can let the time-off be fun. (Like Juds' Golden Afternoon.)  I was never totally successful with that, but surely did get better as time passed.

 

 I tried to keep temper tantrums private when the SOM button got turned up to "high", but they helped.  You are allowed to have one here whenever you need to.  If you check, you'll see plenty of on-line melt-downs that were therapeutic in the end.

You guys are amazing!!  I still can’t understand why Molly didn’t want to be a part of this wonderfully supportive group.

 

I have lots of remissions with occasional quivering and even less full blown events at the moment.  Thank goodness for my regimen of lorazepam and neurontin, and sleeping more.  I am concerned that my new job might effect things, since I sit in front of a computer all day typing.  We shall see how this develops...well, time to trim my nails and go to work!  hard to type with long nails...they keep hitting the keys in front of the ones I mean to hit.  Oh...I tried nortriptyline in the beginning and it made me feel very  nervous and agitated...so that was a big negatory for me.  You all have a wonderful weekend!  Kel

Thanks Juds,

 

You’re always so sweet and know just the right words to say!!  Have a great weekend.  They’re calling for snow flurries here.  Really! In Montgomery, AL.  Don’t they know this is the South and this is why we “Yankees” move down here, to get away from that stuff!

 

Cindy

 

Thanks, Cindy, but I'm not as sweet as you think, just ask Jeanie or Jen, or any of the other members that I've met in person.    Anyway, I just write what I would like to hear, what I wish that someone, someplace had said to me when I started this crummy journey.  Escept, it really isn't all that horrible anymore, hasn't been for some time.  The past couple of decades with this changed me as a person, just as it changes all of us.  Except for the days that my nerve-damaged face brings me to tears, I manage to live comfortably with my SOM.  If the twitching never returns, then so much the better. 

 

However, the single, most significant reason that I manage so well is because of this group.  I know it's sappy and sentimental, but having just survived ten days of total stress and other unpleasantness, I have earned the right to be as sappy, schmaltzy, corny and emotional as I like when it comes to all of you guys.

 

We're getting more snow tonight and tomorrow, as well, but we expect it, living in the northern part of the country.  Every once in a while there is a day that makes living up here worth it.  A lovely moment when the sun is shining on the snowflake decorated landscape makes me feel so much better about just about everything.

 

Kel, good luck with the new job, we're all rooting for you, and don't take home any paperclips.  Do you want us to hold a little memorial service for you nails?

 

oh, now, that's funny!

TOO CUTE!!!!