Dystonia Bulletin Board

I will try to keep it short. After reading the BB daily for the last 6 months I very rarely read about anyone who has the facial pain and neck pain that I have, and think that maybe the diagnosis is wrong.

My symptoms are:-
a. Sore red eyes - treated with eyedrops 4x daily
b. Blinking, light sensitivity and mild spasming of eyes - treated with Botox (I don't get complete eye clamping like others)
c. FACIAL PAIN - mainly on the left and it is constant. It starts from next to my nose to my cheek bone. It is like a cramp, which grips and pressures the area to push up and affect the look of my left eye. I also get facial tingling, like pins and needles, on both sides of the face. My left eye brow is now higher than the right eye brow. My pain eases to a tingling when I am horizontal.

d. Headaches - I have not been pain free for the 10 months since this first started. The headaches are usually down the sides of my head but can also come from the back of the head and into the forehead.
e. Neck/Shoulder pain - this is progressively getting worse but my head/neck don't seem to spasm or cramp in a tilted position.
f. My mouth and tongue make some 'interesting' movements. My tongue doesn't protrude - just moves alot - and the roof of my mouth gets sore. My mouth/lips do a sort of rolling movement with the mild facial spasms. I also do some chin thrusting with the spasm but this is not too obvious to others (I think).

Sorry - I didn't keep this short - too much to say! I read about others having pain associated with Dystonia in the neck, limbs, etc., but I haven't read about anyone experiencing the facial and head pain like I do on a daily basis. Is this common? Should I be looking for another diagnosis?

I have currently been diagnosed with a form of Blepharospasm and a form of Facial Dystonia and have been treated by a very competent Neuro-Opthamologist. I have now been referred to a Movement Disorder specialist.

Thank you for taking the time to read this and respond. I value your advice and answers.