For the last year my mother has been nearly incapacitated by episodes of pain and pressure in her face and neck along with a group of strange symptoms. It's troubling because it's affected her ability to cope with daily life.
She's in her late sixties and has osteoarthritis. Her doctor sent her for a head neck MRI which showed moderate cervical arthritis and stenosis. She also had an ultrasound of the arteries in her neck and they were normal. An orthopedic consult claimed that her symptoms are unrelated to the arthritis in her neck, and a neurologist suggested they were psychosomatic. She saw an ENT who observed nystigmus and explained that he's seen people with problems like hers but says there's no commonly accepted medical diagnosis for it.
An episode starts from posture; she will trigger it if she spends a lot of time bending her neck forward or turns her head "the wrong way". Her main symptom is pain and pressure in the right side of her face that extends along the side of her head to the back of her neck. She gets vertigo and stumbles and falls quite often. Her sinuses begin producing mucus and her right eye reddens (but not her left eye), and sometimes she says it feels as if the eye is being squeezed out of its socket. Occasionally she will say that her vision in that eye is very "like looking through gauze". She gets very tired and sometimes feels tingling in her extremities. She looks awful. The first time I saw an episode I thought she was having a stroke. Lying down and heat applied to her neck help. Pain relievers, muscle relaxers, anti-depressants do not.
Episodes come in clusters and there are times when her symptoms are consistent for weeks or months. Sometimes they abate and she becomes more functional.
I have been searching literature and was excited to read about Barre-Lieou Syndrome which seems to match her symptoms, only to read that it had been discredited and is now falls under the territory of naturopaths and chiropractors as "cervicogenic vertigo" or other diagnoses.
Her quality of life is poor and it's difficult to encourage her to seek medical help because she feels there is nothing that can be done for her. Her experiences with the neurologist and primary care physician were poor in that they both believe the symptoms are caused by vague things such as stress. But from what I have observed, her health issues are the source of stress rather than the other way around.
Is there anything type of specialist she could see? Are there any currently accepted diagnoses that fit her symptoms?