Here's a new one - chronic mastoiditis

Greetings and Happy New Year to everyone! I know I’m the only one who KEEPS LOOKING FOR ANSWERS to this crazy, freakin pain - even though I’ve had a “diagnosis”. I know my glosso nerve is compromised. There is NO DOUBT. I have had a few MRI’s that show the PICA (artery) is laying on top of the glosso nerve (well, in close proximity). The nerve is compressed, and I am not questioning that I have GPN. But things keep getting more and more interesting for me. I have “classic GPN” symptoms and progression, diagnosed in 2007, but symptoms have been with me for more than a decade. Well over two years ago, things shifted for me in terms of pain and symptoms. The pain changed from just ear, throat and neck to a pain that travels from my neck (under ear lobe) wrapping around to my spine. I have been very uncomfortable because of this…I know, I’m singing to the choir!! The “new” symptoms (last couple of years) are: right ear drains, terrible positional vertigo, tinnitus, hearing loss, ear ache (not new), terrible post nasal stuff, and posterior tongue and palate have a HORRIBLE taste. A lot of this is common with GPN. BUT, I knew something else was lurking…like the ear draining, vertigo, tinnitus…I felt something else was going on. I went to see my regular ENT in August. He completely blew me off. Went to see my family doc and begged for an MRI. MRI showed mild chronic mastoiditis (not to be confused with acute mastoiditis). Needless to say, I have a new ENT who got a closer look at my mastoid bone and a CT shows that I do have chronic mastoiditis. I received the radiology report in the mail today and I will talk to him on Monday - today is Friday and it’s about 8:00 p.m. Tucson time as I post this. I am simultaneously freaked out and relieved…it’s not a great diagnosis, but it might explain a whole lot that goes beyond my GPN. Anybody else out there with anything like this? I have googled chronic mastoiditis A LOT!!! I have all of the symptoms AND the GPN symptoms. Is it a coincidence that I have BOTH…? I think one or the other would have been sufficient. Geeeeeez!!!

Meant to say “I know I’m NOT the only one looking for answers”!!!

Nikki, that's just being greedy now ;-)

You poor thing. I've just had a confirmed diagnosis of GPN and that's bad enough. I have a lot of vagus nerve involvement too giving me loads of weird pain signals in areas away from the head.

When you say ear drainage, do you mean it's literally fluid coming out of the ear?

I'm so sorry Nikki :( my symptoms are worsening too , . I'm going to look into this. Are you on the private Facebook group gpn really sucks? it's more active than here, maybe you can find answers there to help, they are a great group.

Yes, Jeffina, my ear has stuff draining…either wet or “crusty” stuff. And Jill, is the Facebook group now private? Last time I posted on that, my entire family and friends became aware that I take a periodic narcotic pain med. I didn’t want to share that with anyone but you guys. Do you know of a way to make it private? I see lots of posts from people on it. Let me know when you have time. Thanks.

gosh I hope it's private, . it says it's a closed and private. I post a lot and no one on my regular fb has said anything. Email the moderator to check? . or create a fake Gmail to make an account only for that .

Geeeeez!!! Nicki,I really do feel for you. I have always thought something else was going on with me too. At present I am taking Antibiotic's for a very painful dilated parotid duct and just about to get another referal to an ENT or Oral specialist. I am new to the computer and find all this a little confusing.Its so strange that I mentioned mastoiditis to my local GP last week and he just ruled that out very quickly. Food for thought. Thankyou and will be thinking of you.( Lisa) Warrior Woman