I think I am getting to the bottom of the main cause of my flare ups. I think it is some form of neuralgia/neuritis/neuropathy. Any suggestions would be appreciated
Quick run down:
Diagnosed with cerebellar tumor in 2013. The tumor was removed successfully, but I felt much worse after the surgery and had a terrible migraine/facial pressure continuously for over 6 months. Over the years this sensation flared up less often. However, it always sets me back for days, and sometimes weeks, when it does. I experience severe dizziness, vertigo, facial tension and thinking issues when it flares up.
The neurosurgeon always said you’ll get better, blah, blah. I have consulted with other docs, such as the renowned Dr. Hain, and they think my flare ups are migraine related. Semicircular Canal Dehiscence was ruled out.
However, I’ve always noticed that the weather seems to influence my symptoms. Recently, I have been seeing a vestibular physio who performed gentle massages around my ear and face, which I never tried before. The physio says it is “cranial sacral therapy”. I’m not sure about that or a believer of CST but whatever she is doing seems to have some truth behind it. She claimed she could feel tightness/stiffness. I felt soreness and mild pain. After I first saw her I began to suspect I have some sort of nerve issue or muscle issue.
These symptoms were never an issue before the surgery and I wonder if the trauma from the surgery caused some nerves to become impacted.
Recently I have noticed what feels like a nerve directly above my left ear (where the ear meets the head). I think this nerve may be one of the chief culprits of my flare ups. When I try to do gentle massage around the area close to this suspected nerve, the nerve moves. Interestingly I do not feel this nerve on my right side. I probably should avoid touching this specific area because I think doing so makes me feel worse.
So I also get migraine related vertigo/dizziness, and general dizziness (from picking up boxes, climbing ladders, watching TV) too but generally they’re more tolerable!
Sorry for the long post. I just feel like I need to see a neurologist who specializes in cranial nerves. I would greatly appreciate recommendations or suggestions.