GN and Glossopharyngeal N

Hello everyone,
I’m so grateful for this site and to the kind people who’ve welcomed me.

I’ve never had the opportunity to discuss this other than doctors. I would just like to ask if anyone has experienced additional pain in other areas such as: actual outer ear- sort of “slicing” through the top and the lobe/pinnacle? Also, part of the neck - just under the lobe( in the groove) in front of the mastoid? And then spreading to the bottom and upper side of the head ?
I’ve spent many years of costly and frustrating visits to GPs and the ENTs thinking this was severe ear infections! as I’m sure many of you have encountered. I was diagnosed with shingles, a small patch above mu eye of all places in Nov 2011 and had monster attacks for several weeks after that. I’ve been relatively ok for a few months until the past 7 days, first vertigo twice- weird, or is that the norm? I never had that before.

Anyway, I would appreciate any comments or advice, suggestions.

Carol-Anne

Sorry that typo “pinnacle” should be pinna - of the ear : )

Hi Carol-Anne,
When my TN came back a few years ago after being in remission, it started as a deep severe pain in my ear. I actually thought I had an ear infection…and then the electric shock pains started and I knew TN was back. :frowning:
I have bilateral TN, right side is type 1 left side is more Type 2 but recently have experienced a few shocks…I feel pain deep in my ear on the left frequently.
I also have vertigo, my Neuro thinks its a side effect of my meds, my GP has been sending me all over for a year to test for other reasons just in case. I still have no answer.

Have you checked out our sub-groups yet? Located under the Groups tab ( upper left in black header bar) we have a GN group there…

Welcome to the Group! (( hugs )) Mimi

Hi Mimi

Thanks for your reply. I feel for you that the pain has returned. I’ve had attacks on the right side but not as frequent as the left has become. I will go and have a look at the sub groups thanks very much. I wonder whether stress also brings the attacks I have. I’ve become aware that a draft or fan blowing on me constantly is s big “no-no”, its really weird as to why this is one of ghd triggers. Hugz back and I hope you have a lovely day.

I have atpyical GN. One of the symptoms is a tingling / electic pain that starts at the ear and apreads to the center of my scalp. It is not constant like my GN is, but it does frustrate me.
I had a nerve block at the pain clinic that did stop the tingling pain for several hours. You might want to check that out.

Smash

Hi Smashagnome, how are you doing? thank you your reply and the info on nerve block pain, I will ask at my nearest clinic.

I often get intense burning on my left cheek as part of my TN and it almost always creeps over to my ear and turns my whole ear red. It gets so red and hot it looks like its going to blister. I have had the redness go down my neck some also but not as often. I always figured that was more of an anxiety attack about the pain since the trigeminal nerve doesn’t serve that area and I’m prone to anxiety attacks. I don’t know if that is anything similar to what you experience or if it helps at all. I’m glad you’ve found this site. I only found it a few days ago and its helped me immensely.