Hi Sam

 

I've been using the eye drops for about 6 weeks now.  I can't say I've noticed a huge difference (although it might have something to do with having to look after a 10month old & not getting much sleep!).  I'm back to see the consultant this afternoon to discuss taking something systemic (carbamazepine?).  Not sure how I feel about this yet!

 

In answer to your question, I can say that I do feel pretty dizzy/disoriented (particularly if I go to a busy shop where I don't know the layout) a lot of the time.  Luckily I haven't experienced any bad headaches (just neckache from tilting my head all the time!).

 

Hope that helps & I hope the drops work well for you.

 

Tere

First of all, "Hi!" to both of you.  Nice to hear from you, although I'm a bit conflicted on offering you congratulations on your recent diagnosis, Sam.    I'm glad to hear that you finally know that you have SOM, but sad that you actually have it, even though there are much worse things to have received as a diagnosis.

 

You will find yourself in good company regarding all of the dizziness and disorientation you are experiencing.  It is difficult to feel comfortable in time and space when your eye is twitching, jumping and jerking all over the place and sending such conflicting messages to your brain.

 

I do caution you to be careful when walking, because it is easy to misinterpret exactly which floor, step, curb, etc. is the "real" one and which is the double image.  Jeanie used to, probably still does, use the Memorex commercials as a reference; you know, which is real, which is Memorex?  And, yes, most of our jokes are that ironical.

 

Another important safety concern is the placement of something which you are holding or attempting to grasp, as in cooking, cleaning and the like.  You might find that you completely miss connecting with the object, resulting in your coffee mug crashing to the floor, the pot of spaghetti not draining into the strainer and tipping over onto the floor, or any number of things making it to the floor instead of the intended surface. 

 

Most of us are highly decorated with battle wounds, the scars from all of the burns we received whilst trying to cook, the scrapes from trying to clean the bathroom, and the rug burns from tripping, the scabs from falling whilst walking to get the mail or walk the dog or go shopping or any of the gazillion things that one has to do in the course of a normal day.

 

As time goes on, you will become more accustomed to the disability caused by your SOM, and will move more carefully, albeit much more slowly, through your life's tasks.  You will truly become more adept at all of this, more tolerant of the pain (headaches, neck/shoulder/back strain from your head-tilt) caused by your headaches.  It comes, honestly it does.

 

I hope that you will receive some relief from the drops, as have several of our members.  I had always wanted to use them, as I perceived them as being the least intrusive of the treatments available to us, but could not because I have asthma. 

 

Whatever happens...or doesn't...just keep in touch.  There will always be someone who will chime in with some information and support, just like Tere! 

 

Oh, and Tere, lots of luck and fun with your toddler.  My grandson just turned a year old and has been walking for more than five months, so I know how exciting and exhausting having a little one around can be.  Whilst you are taking care of him, make sure that you are taking care of yourself, as well.  Not easy, I know that, but you deserve a bit of pampering once in a while.  Let the house and all that work go when you can, and sleep when your little one sleeps.  If he/she has given up naps for a while, be assured that those respites will return!

 

Nice talking to both of you!!!!!!!!!!!

 

 

Hello, Sam,

    

Too bad about the diagnosis,but there are more of us out here than you'd think, and if you ask questions, someone is bound to respond with some helpful stuff.  And if we can't really help, we sure can listen.

    

I didn't get a whole lot out of the drops (Betoptic) but I thought they did calm the eye a little and even that small bit was a help.  I keep meaning to fill out the "medication" part of our information-gathering effort.  I will.  Just not a lot of time lately, for some reason.  I hope that will become a resource for people--especially those who are newly dignosed.  And I also hope more people will enter their information as time passes because we could become quite a nice "encyclopedia" of information and experience.

 

Being dizzy, disoriented, and off-balance does get to be an every-day thing.  It isn't fun, but, honestly, you do learn ways to cope.  It takes awhile.  I always need a railing for stairs, use a cane in infamiliar territory when there aren't sidewalks around, and when  I reach for something, I have my own rule of "look once, feel twice, and THEN reach".  I really think my neighbors may think I work in my yard in a state of total drunkenness because lurching and wobbling is not unusual for me.  Nor are falls.  Since surgery, there is much improvement, but I still don't have quite the correct prescription in my glasses so I'm not as steady on my feet as I'd like to be, yet.  It will happen!  (Though yesterday, I was trying out a new recipe for soup and made such a mess it looked as if a five-year-old had been experimenting in the kitchen.  The soup was great, though, and there are always paper towels.)

 

 Some people think the SOM causes the headaches, and some (like me) are more on the side that says that SOM just makes a headache worse.  I don't think there is a right answer.  But it's a good thing to talk over with a doctor since nobody needs extra problems if they can be helped and treated.

 

    I hope when you talk to your medication person, you will get some good ideas about meds to try.  If one thing doesn't work, don't give up!  Lots of people have been helped by medication and sometimes it took a lot of patience to find the right one and the right dose.

 

Glad you are with the group, hope you check in often.

 

By the way, Tere, I surely do remember those toddler days.  Precious!  But I wonder now where the heck I ever got the energy to work full time and chase those little rascals around!

It's worth it, though, to find that eventually your adult children are also your best friends.

 

Annie 

 

 

 

hi thanks for the reply , carbamazepine is off the group of medications that control epilepsy from what i understand the idea is that it is eye or this one nerve is spasming or fits and this can be controled with medcation but it dos have some side effects as do all that group. i. have been told if the eye drops do not work then this would be the first medcation they would try . does everyone with this have glasses as i wondered if they help ? any way good to chat to you and to know that i am not going mad  . the dizzy spells i find harder to cope with hate feeling like that and because it cant be seen people think you are not experanceing this.