My Symptoms

Fullness from fluid, constant tinnitus, crackling & popping. Constant dull, aching pain in the ear, intermittent sharp pains. Exterior ear, mastoid pain, dull ache behind ear, feels like it is in the bone. Often feels itchy and burning inside ear canal. Pains can increase with sharp movement.

Shooting, ice-pick, knife like pain from occipital region, radiates over temporal/parietal area through to behind left eye. Burning, blinding pain when attacks occur. Sometimes following an attack the left side of my mouth becomes raw and inflamed. The roof of the mouth on the left side only will peel along where the tooth meets the gum. Mouth becomes painful. Have had shingles in 2022 in mouth on left side and many recurrent cold sores on left side of mouth.

Pulling pain down from just in front of the external ear, is this lymph or possibly the external jugular vein? Dull ache. Pulling, tight pain from the mastoid bone down to shoulder. When press in area below occipital bone, approx. 2 cm below on neck, I can feel the post nasal drip increase and its is extremely sore to touch. Physio does not relieve. A slightly bigger than pea sized nodule has been present on this side of the neck post middle fossa repair. Pain in back of neck, like a deep bone ache at the base of the skull, like my head is too heavy for my neck.

Deep aches inside the head on the left side temporal bone area, the skull and skin hurt. Radiates towards and includes the occipital bone. Radiates up to parietal bone. Bones feel raw, like freshly sawed.

Constant jaw pain - TMJ area. Flutter like nerve pains across cheek under eye, jaw and above eye. Temple pain, sore, throbbing.

Constant congested sinus on left side, cannot clear. Post nasal drip been present for around 15 years, left side only, constant. Sinus often sore and feel infected but they are not.

Pain between shoulder blades, this went away after the middle fossa repair but returned around a year later. I have had this for many years and didn't think much of it until it went away. It feels like when you are about to come down with the flu and your joints/bones ache. Specific area between shoulder blades.

Over the many years I have had dizzy spells, the feeling of the floor falling away from me and months of involuntary swaying before the fistula repair. At present, when sitting or standing I feel slightly off centre, like I am about to sway but don't.

When a fresh leak happens I will have an escalation of pain in the whole left side of head, I know when they are coming. The nerve pain intensifies and I will suddenly feel fuller than before. The increase in pain happens around 24 hours before a fresh leak. The fluid doesn't move, I cannot 'pop' my ears, sometimes there is a creek in my ear and sometimes an ocean. Taste in mouth when actively leaking is metallic, swamp like.

General feeling of being unwell, fatigued, do not feel rested after sleeping. Immunity is low despite a balanced diet and regular exercise. Have tried many supplements, lifestyle changes etc. but no improvement. General body aches, like fluey feeling.