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Trochleitis and Orbital Myositis

Hi, Thank you everyone for your posts of orbital myositis.  It started in March 2014 with right eye pain and pain when moving the eye. The ophthalmologist diagnosed me with scleritis and put me on Naproxen. A couple of days lated the pain had been radiated to the right orbit and then to the left orbit and gritty feeling in the right eye. In May the same doctor diagnosed me with dry eye and put me on Restasis. i've developed headaches and sinus pain in my forehead, nose and cheek bone and also ear, jaw and teeth pain. When I stopped Restasis some of the sinus pain disappeared. I've done brain MRI and CT, Brain arteries and veins MRI, CT of sinus, blood tests of all kinds, All tests returned negative. I have been in several doctors, neurologist, internist etc for 5 months and still I do not have a diagnostic. At this moment I have mainly a gritty feeling and pain in my right eye and in the orbital bones around the R/L eyes, eyebrow headache in my temples. I've found by myself, just reading medical articles about "Trochleitis".
I believe my symptom match with that disease.
I really think that it could have already radiated from the eye trochlea to the muscles of my face because I feel pain in my cheeks when I smile and I feel pain in my jaws when I talk. If that is true it would be orbital myositis.
The ophthalmologist has suspected of trigeminal syndrome, but my type of pain is different. Then the neurologist suspected of "atypical facial pain" that it is a diagnostic when the doctor do not find the cause of your disease. I brought to the doctor my findings of trochleitis and he said he has never heard about it but he agreed that it fits my symptoms and prescribed 5days 60 mg oral prednisone and then star tapering 5mg per day until zero. I did not start yet because I do not have any confidence in the doctor. My family doctor told me to try advil 400 for few days before steroids. I have a 2nd appointment with neuro ophthalmologist next  wednesday August 27 and I will ask him about orbital myositis, trochleitis etc. My eyes are swollen only a little. I am 62 canadian recently retired and ready to enjoy life after so many years of hard work. Now I found myself trapped in this everyday all day terrible pains. Please let me know how much prednisone is enough and any other details that may help. I really hope that you all have recovered completely. Thank you for your kindness taking the time to read my post.
2 Responses
Avatar universal
Hi, did you have any progress with your treatment?
I have similar symptoms for years and the doctors i´ve passed seemed to ignore this disease (Trochleitis).

I hope you are feeling better.
Avatar universal
It sounds very much like my pain. I've been diagnosed with trochleitis myositis oblique superior. I've had this for 14 years now and it's very painful. I've had NSAID treatment and injections near my eyes (steroids). I find that warmth can be helpful (I heat up a gel eyemask and press it on the painful areas). I understand that you must be desperate. I recognise that feeling and still haven't found a treatment that keeps it calm.
I hope this might help you: http://en.wikipedia.org/wiki/Trochleitis
All the best.
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