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What treatment is avialable for oculopalatal myoclonus?

2 answers | Last updated: Feb 13, 2014
MamaLovesPapa asked...

My husband is 51 now and had a cerebral vascular stroke 3 years ago. Although he has made significant recovery with being able to walk again and the right facial droop is pretty much gone, he still suffers with a latent and rare side effect called OPM (oculopalatal myoclonus). Is there any treatment for this? He's been to see a top-notch neuro ophthalmologist but it is hard to accept there is no treatment other than meds that can make you feel even worse, because he has tried many meds out there...Cymbalta, Neurontin, Clonopin, Lyrica, Nortriptyline and they have all either not worked or made him too dizzy and drowsy so he does not take them. He is such a young 51, he does have some balance chalenges and he does work on balance exercises at home but the OPM really gets him down. The worst thing is his vision...OPM has caused the vision in both eyes to bounce, not only does the vision bounce but the vision in each eye bounces at a different angle and rate. This side effect has forced him to take an early retirement from a great job, limits his ability to enjoy outdoor activities, to read, to write, to have normal balance and gate as well as restricts him from driving. Obviously he is bored staying at home while I am at work, he's tried to pick up some hobbies, but again the vision issues make it difficult. He is also depressed, he sees a psychiatrist and takes a low dose of prozac, but he still gets moody, sometimes down right nasty, but it never lasts long and I understand where it comes from so I am patient with him and I love him more than anything in the world. Amazingly, OPM must be pretty rare, because most physicians have never even heard of OPM...any suggestions for treatment?

 

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CARLAMAE5 answered...

I SUSTAINED A BRAIN INJURY FROM CLOSED HEAD TRAUMA WHERE I SUFFERED COMA, BRAINSTEM DAMAGE... AMONG OTHER THINGS.. MY LEFT EYE BOUNCES UP AND DOWN AT ALL TIMES. I HAVE BALANCE ISSUES, I WALK WITH A CANE AND DO NOT DRIVE. I SEE EVERYTHING IN MOTION. I GET MONTHLY BOTOX INJECTIONS IN MY LOWER LID (PINK AREA INSIDE) THE BOUNCING DOESNT STOP BUT THE BOTOX MINIMIZES THE RANGE OF THE BOUNCE. TO WEAR ITS BEARABLE. ITS THE ONLY THING I KNOW OF. IM STILL SEARCHING FOR SOMETHING MORE IT LAST 13 WEEKS IN THE BEGINNING BUT NOW,,, I GO EVERY MONTH TO MY NUERO ophthalmologist EVERY MONTH. JOHN HOPKINS DR REPKA BALTIMORE MD -PS....IM 49 YEARS YOUNG

 

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An anonymous caregiver answered...

I had a brain stem bleed in 9/2011 and I was doing great except a year after I developed OPM but it took another year for a neuro ophthalmologist to diagnose. I have been looking for a cure because I feel like I went backwards in progress. I was just given Nuerontin but have not tried it yet. I hate taking medication.