I live on the east coast of South Africa and was diagnosed with Atypical GPN in 2013, but had been experiencing earache and pain in my jaw periodically since 2005. To that end, I went through every medication just about on the planet from paid meds to psyche meds and a whole lot of neurological stuff in between, but nothing helped to take the pain away ( a deep searing pain in my right ear as if somebody was pushing a knitting needle through my brain… it also affected my eye socket and jaw which ached a lot even though my teeth were all fine as was my eyesight with no apparent cause for the ache and sharp stabbing pain … then I began having difficulty swallowing and a kind of spasm or cramp in my neck … ) or to alleviate the symptoms for long … I did however discover a whole new personality which was both maudlin and passive to the point of not giving a fig … I am neither of these things, never have been one to allow anything to hold me back, I’m an all or nothing perfectionist and hugely passionate about my work and family.
It was not until I had an MRI in April 2013 that the ENT specialist referred me to a Neurologist with Atypical GPN … since then I’ve had two MVD surgeries and whilst I had some relief, both times the pain returned after 8 months … not quite with the same intensity, but it’s still that deep sharp ear pain and it’s still debilitating… currently I merely manage the pain with a slow release anti inflammatory which I take every 12 hours and regular schedule 5 pain tablets only available on script which I take (sometimes as many as 6 a day) when the pain is bad … 8/10 and over
My condition is complicated by not only having GPN, but I have compressions on both the Vagus nerve and the Nervus Intermedius as well … so three nerves of the Trigeminal/Cervical nerve complex are affected … the latest MVD in March last year was to “slingshot” the artery by attaching it to the lining of my brain and thus drawing it away from the areas of compression … in fact the Vagus and Nervus Intermedius were bent double and forced back on themselves by the artery … the neurosurgeon elected to write a paper on it because he had only seen it once before in almost 50 years of practice, and that patient died from a brain haemorrage.
I am absolutely fine after the two brain surgeries … yes, I still have pain, but it’s manageable and not the same relentless neverending nightmare that I had to live through before the surgeries … and, yes, I have had to give up my professional practice of 25 years because I no longer have the stamina to work till all hours to meet deadlines, nor do I have the confidence in my abilities as I have large “gaps” in my professional and experiential knowledge … but I am still alive and kicking, still here to love my family and spend time with friends, and still here to be the best I can be within the new limitations imposed as a result of two brain surgeries … that maudlin and negative “drugged” zombie/stranger is gone, and I’m very much the person I used to be without all the professional capabilities and attitude … a good thing!