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Hi Dr JP
I was wondering ig you remembered my problem from last week? My extraocular muscle continually tensing up and spasming from eye muscle strain? You said you were convinced I had superior oblique myathsnia. What made you think that and what are the symptoms?
Myokymia, is an involuntary, spontaneous, localized spasm of the superior oblique muscle. Commonly described as involuntary eye muscle contraction, typically starts and disappears spontaneously. It can sometimes last up to three weeks. Frequent contributing factors include too much caffeine, high levels of anxiety, fatigue, stress, overwork, and a lack of sleep. Usage of certain drugs and alcohol may also be involved but none are specifically identified. Treatment with carbamazepine can be helpful.
It does sound abit like what I have but my symptoms seem much worse. I've never heard of anyone with that who is funcionall blind most of the time and in constant discomfort.And I also have to close my eyes all day to avoid moving them and aggrevating the symptoms. My problem has also lasted 10 months and is unbearable at times.It has also got generally worse rather than better. It can feel like someones pinching my the top of my nose really tightly at times and at others its just so tight that the eye seizes up. I've never heard of anyone with the condition who has symptoms like that. Mine are rreally severe. I have tried medication like:diazepam,pregbalin,anti-depressants and baclofen but nothing has really helped. Does it still sound like that condition? And what specific medication would you reccomend for superior oblique myokmia?
Thank-you for your time
Well if it is superior oblique myokymia, mind you i'm not completely sure it is after what you've written, carbamazipine is the treatment. However, not all patients respond to this treatment. It is very difficult for me to tell you what's going on with out an examination. I really wish we cound get an exam so we could sort this out. It may take several exams but eventually we should be able to figure this out. If your lids spasm as well you need to consider Meige syndrome or server blepharospasm. These conditions are effectively treated with botox. I really urge you to find a way to see a neuro-ophthalmologist who I know would be able to sort this out. I'm an ophthalmolgist who specializes in orbital reconstruction and oculoplastics but I'm well versed in the field of ophthalmology.
Thank-you for your response,
I do not feel it is this as the symptoms are much more severe and I have seen two opthamologists but they only perform external examinations which only tell me that my eye ball is healthy, my eye sight is not affected and I can move my eyes in all directions but there doesn't seem to be any techniques for looking at the muscle and how it is mis-firing. The condition is not blephospasm as it only affects the exta ocular muscle (superior oblique I am sure) and I shut my eyes to prevent them from moving and exasperating the conditon. I also shut them as the muscle becomes so tight I cannot open them.
I feel myself it is functional and something that went wrong after the healing process in which I severely strained the eye muscles. For the first month after the severe eye strain it felt as though there was a knot in the muscle as my eye felt "heavy". After a month the muscle loosened but I;ve been left with spasms ever since. This is why I feel the condition is unqiue to me and why I would be willing for an opthamologist to try botox in the muscle as an experiment as I need to try something drastic considering how badly this is affecting my life.
In America, would someone try this? I have an appointment down in England but I seem to get the same response everytime.
Also, is there any techniques for watching the muscle so you coule see it going into spasm?
There is emg's (electromyography). Try to be persistent and have the ophthalmolgist send you to a neuro-ophthalmologist. They are trained additionally in neuro aspects of ophthalmology and have more knowledge than your comprehensive ophthalmologist. They are pretty impressive when it comes to the neuro aspects of eye disease.
Yes I have seen a standard opthmologist and a neuro-opthamologist but they just did standard tests the way they always do and told me it was "localised and functional" with no known cause rahther than a specific dis-order with a name. I wish they would use emg but they told me it is not used diagnostically,only as a guide for the muscle when botox is injected for squints. So I am very frustrated as I keep coming up against a brick wall everywhere I turn with doctors unwilling to experiment or help me. The condition has destroyed my life which is why I just want to someone to take a risk considering I would take full responsibility for it and am willing for someone to try. I just wish I lived in America!
I understand your feelings. Just remember to tell the doctor that u want botox and that you'll take full responsibility and sign all disclosures that it's against medical advice. More importantly, botox is temporary and only last for 3 months so at worst the problem with botox would be temporary. be understanding with the physician and understand his/her situation. What you have is not explained by our current body of knowledge. Be persistent and you'll eventually find someone who'll work with you. The ophthalmologist in UK, America, Canada etc are all very well trained and have a breadth of knowledge. Be encouraging to them as you have to me. I wish you well
thank-you fo your help, I really appreciate it