Medications: Kel

Medications
How you made the decision to take the medication: Lack of sleep was a big trigger, as was stress and anxiety, so I decided to take something that would cover the sleep issue as well as the anxiety issue.  I also had restless leg syndrome, so I started taking a medication for that...which just so happened to lessen the severity of my eye wonking.
What was prescribed: Lorazepam and neurontin.
Dosage and frequency: Lorazepam 1mg at bedtime (twice daily if needed) and neurontin 300 mg at bedtime initially, now twice daily.
Length of time you took the medication: I have taken these for about 3 years now.
Benefits you experienced: Sleep better, legs don't twitch, neither does the eye (as much).
Duration of benefits: Started almost immediately, still having good luck.
Side effects you experienced: none noticable.
Duration of side effects: not applicable.
Experiences when medication was stopped: I have not stopped, although I can tell if I forget a dose too often.
Your feelings about your experience with the medication: It helps, so I take it. 

 

I have taken a lot of different meds.  The ones specifically prescribed for SOM have been: 

 

Tegretol  (no effect on eye, side effects.)

Neurontin (Remission for one month.  Sudden return of symptoms.  Took it again two other times for back issues--no effect on eye.  Discontinued, again due to side effects.)

Baclofen  (no effects on eye, discontinued--very difficult side effects)

Betoptic Drops (some mild reduction of the degree of torsion and the severtity of the spasming.  It was some help. No side effects.)

Diazepam  (Generic Valium.  Used for back pain and for SOM.  I think again, there was some mild lessening of symptoms, but it was more effective for back spasm.  No side effects.)

 

I have taken other meds that are often used in an attempt to treat SOM, but they have specifically been for back pain.  I have been interested to see if they have had any effect on the eye.  They have not, except for some help with Clonazipam.  They are:

 

Gababtril  (Not helpful, side effects.)

Lyrica  (Not helpful, side effects)

Clonazipam  (Similar to Diazepam)

Amitriptiyline (Helpful for back pain, not for SOM.)

Cymbalta (Didn't give it a fair chance since it made me too sick.  Might try it again for back.  Don't know.)

 

Side effects from any of the anti-seizure or anti-spasmodic medications have been loss of attention, memory lapse, slowness of response, disorganization and sleepiness. These problems have been to the degree that I couldn't function.  Most of them reached what should have been therapeutic doses, but had no effect on the eye. I had to stop upping doses so I could continue to  work, drive, or get anything done.  The SSRI type of anti-depressant has the same issues for me--tricyclics don't, but you have to fight through a two or three week period of extreme fatigue. 

 

It may sound kind of hopeless, but I really am glad I tried these medications.  When it came time to make the final decision about surgery, I knew that I had tried enough other things to be sure that medications were not going to be the correct course of further treatment for me.  They DO help some people. 

 

Surgery:  Best description in "Annie's Surgery" thread.  That is, if you don't mind settling down with a nice drink and a good reading light.  I was going to try to keep it brief, and couldn't.  It does tell the whole story, though.  And I do mean the whole story.

 

My doctors have been very helpful and informative.  And they have answered my several hundred questions with great patience.  I feel I clearly understood the  procedure, the risks and potential benefits, and nobody pushed me.  When I was ready, they were right there with me.  It was totally my decision.

 

In late October of 2007, I had a tenectomy of the superior oblique and a myectomy of the inferior oblique.  I healed very well.  Am now free from SOM movement, and only experience some slowly lessening pressure and sensation behind the eye.

 

My resulting diplopia is well-corrected with prism lenses--patience is required to stick with it and seek the proper correction.  It takes time.  I just recently (late May, 2008) got the final prescription and it works well for far, mid-range and near vision. I probably don't see quite like the rest of the world, but it's very good; vision is excellent.  The right eye will always feel as if it has been fixed, but isn't painful.  It just feels different.  I am able to wear blended trifocals which are also corrected for astigmatism--with two prisms in each lens.  The glasses look "normal" and aren't heavy or peculiar-looking.  Nobody would ever know how much correction there is in each lens.

 

The surgery itself took only an hour and a half, and was only minimally painful.  It was done by a pediatric ophthalmologist specialist who is also a professor of optical surgical technique at a University teaching hospital.

 

It is a very successful outcome, and has made major changes in my life.  It took me about 15 years to get to this point, and I only reached it when the SOM became constant and intolerable.  I feel very fortunate to have had this type of result. It is nothing short of wonderful.