superior oblique myokymia

Hello. Have posted earlier regarding transient episodes of binocular vertical diplopia, which comes on during morning change in position, straining, and most dramatically morning exercise. Sudden onset 8 years ago. Imaging tests and bloodwork, LP, and VEPs all normal. Referred to neuro-ophthal. far away, who diagnosed me with superior oblique myokymia. Had episode of diplopia while med student was doing my history, fortunately, so they could document it (my blood pressure had been quite high, because anxious). They were also able to induce some phoria (?) with Maddox rod after I hyperventilated (I saw the red line beneath and clearly separate from the spotlight). This specialist also ruled out congenital 4th.
My local neuro left me a phone message that this is "complicated diagnosis" and she can't help me further. I can't find much information on it. In particular, I don't understand what caused/causes it? I have no history of significant head trauma. In my case, seems to have a vascular trigger of some sort. Is this indeed rare? What is its general course? Why did hyperventilation bring out the deviation? Specialist mentioned some meds that might help but said was up to me and if I could live with it, fine. I liked the specialist, but he is very far away and it would be difficult for me to follow up with him. I also don't think he is accepting new patients. I'm not sure where to go from here. I had hoped my local doc could help and consult with specialist if necessary. Thanks for any advice or references on this disorder. I appreciate this service!

[CCF-Neuro-M.D.-CS]

The exact cause of superior oblique myokymia is not known. What is known, is that it is do to intermittent contraction of the superior oblique muscle. In normal adult patients it can come and go over the span of their life. It has been assocaited with other more serious conditions (lead toxicity and vascular anomalies to name a few), but you would have many different symptoms. There are many medications which you could try to control the symptoms, but you need to decide if they are severe enough to merit taking a medication everyday. I would recommend contacting the specialist on the phone, and explain your situation. He/she can then advise you on physicians in your area who can help. Good Luck.