Oops I sent this as an email instead of a discussion. Sorry.
Hello,
I was diagnosed with TN on the right a year ago, then shortly after that I was diagnosed with MS. My TN started as episodes of ear pain that have now spread to other parts of my head/face on the right. I take Trileptal to help control the pain in addition to my MS treatment. Yesterday I started ear pain on the “good” side of my face and assumed it was an ear infection, which I sometimes get. I went to the doctor today…no ear infection. This is how it all started on the right side of my face. I am so upset. My question is about the nature and location of the pain: I can barely touch or manipulate the outer part of my ear…very painful! I have pain inside my ear but the worst seems to be on the outside. Just pushing on the tragus is awful. Does anyone else get pain on the outside of the ear? My right-sided ear pain presented very similarly. I’m not sure whether to call the neurologist or not.
Hi monica, your pain is different than mine, not that means anything. This is my 2nd bout with TN, it started with a feeling of a large needle being shot into my eardrum. Very sudden, then happened a few seconds later, this was about a week after my MVD, then I don't recal having it again until it started this past year, the same feeling, pluss volleys of stabbing pain right in front or slightly below my ear in front. When I have alot of these vollys of pain my ear can become tender enough not to lay on it, but that's all. My Neurologist said it was definatly TN, as the nerve runs right in front of the ear. I'm on Neurontin (Gabapentin) and Klonopin. Last visit we were considering injecting Botox behind the ear,. I probably will, we were just waiting to see if I could get a reduced rate for the Botox, but I'm hurting enough some days I don't want to wait, if it will help.
I just came across your post. I have very similar pain. Ive only just submitted my first post today under general, I shouldve posted it in here.
Anyway, mine starts in the mastoid, 5cm into my neck then the outer ear - the pinna/lobe, middle outer ear and top. By the time its reached that stage I know Im in for a big attack of pain. The "hot poker pain" goes into my inner ear too, finally spreads to the whole side of my head (left). Ive had it on the right before but rarely. Even if a lock of hair falls across my ear it causes more pain. I constantly get what I assume are ear infections - very itchy and sometimes blocked. I gave up on ENT's after seeing a Neurosurgeon. He examinded the MRI's done and thats when I was diagnosed with glossopharyngeal neuralgia. Strange how he never mentoned Geniculate yet my pain always begins with my ear.
I was just thinking and wondering if this condition is aggravated by perhaps continuously peering closer at a computer (extending the head forward too much) over a longish period of time? I have found that now I constantly check my posture whilst sitting and especially whilst on computer. Ive been diagnosed with Glossopharyngeal (neck) by a surgeon and again I am mindful of not repetitively lifting,pushing heavy things or hanging my head downwards too much (like when gardening or cleaning) I give myself little breaks in between.
To kg : I found that very interesting about botox, I didnt know that people use that to help. I wonder if they do that here in Australia, will check too.
I hope you both, Monica and kg find some if not all, relief soon.
My pain is deep deep ear. I cannot touch it no matter how much force or pressure I put in or around my ear.
Ive heard that it can progress to the outer ear as well.
I do have tingling across my skull, but I think that is something different.
The GN pain is unreachable for now. However if a cold gust of wind blows by, it can knock me down pretty fast.
Dont mock all the young kids wearing winter hats in summer
Oh mine started with deep ear pain too. I wear a hat all day long. Two and hood to go out in the winter. I sleep with an old cashmere sweater over my head and a hot water bottle under my pillow.
Bellalarke
smashagnome said:
My pain is deep deep ear. I cannot touch it no matter how much force or pressure I put in or around my ear. Ive heard that it can progress to the outer ear as well.
I do have tingling across my skull, but I think that is something different.
The GN pain is unreachable for now. However if a cold gust of wind blows by, it can knock me down pretty fast.
Dont mock all the young kids wearing winter hats in summer :-)
