Hello everyone,
I have a lot of questions and would appreciate replies. I just believe that the more we ask questions, do research, consult with professionals, the more we may all find anwers to be pain free.
Does anyone experience the pain (Geniculate?) by firstly: stabs of pain to the mastoid (bone behind the ear),then from just under the ear lobe (from that small "crevace" there) to about 5cm into the neck. The next lot are searing pains through the actual OUTER ear, usually in 2 places. Then all those "paths" of pain are joined by its monster ear stabs, finally speads to the whole side of (in my case left) my head and up to back of my jaw.
I know I'm in trouble when the searing/burning pain is already going through my outer ear. Anyone have this? Does your jaw feel like is misaligned too? On extreme bad episodes it can last days n days, never knew pain could continue to climb like that, its like there's no limit until ER administers what I call "body separation sensation!" = morphine. Scary feeling, but agreed to have this by ER, felt desperate to get to even a normal level of pain after even. I think you can all relate. The lyrica and endone at the time had no effect. I learnt about Tegretol afterwards.
Neuro said its Glossopharyngeal Neuralgia and recommended the usual MVD but...no thanks. I dont want the risks etc and that it may not work. The attacks have got closer to each other but still I have hope that there are other methods answers. For now, pain medication and whatever else lifts my spirits.
Prior to late 2011 Id been to numerous doctors,ENT's and was always given antibiotics, ear drops and pain killers. I would describe the pain as always as well as having itchy and blocked ears - Anyone have that?. Does anyone have attacks as a result of flying? I had it twice but several weeks after the flights (international). Wonder why? My ears do feel like theyre bursting and there's a lot of pain on decent but the big attacks arrive later.
The last and final ENT told me that "the ears are clear...just put a few drops of olive oil, lie down and then dab with cotton wool"! Yeah righto. In the monster-pain stages I daren't even let my hair fall on my left outer ear, never mind inserting ear drops. As you're aware, smiling is not on the menu during this either. I remember trying to find answers online for ages and came across the TN words, thinking, "Trigem...what? no thats not me! Must just be TMJ plus severe ear infection but not TN". There's a part of me (mm die hard optimist :)) that still thinks perhaps its not Geniculate, Glosso..perhaps the Neuro is wrong. I will still keep asking questions, just maybe, there are other answers for us all.
I guess you learn as you go to also watch out for those things that you know of that will trigger an attack. Drafts, cold wind, talking a lot combined with wearing a telephone headset with glasses and so on. I had to leave my job where I was required to wear a headset all day and talk for hours. Ive hated that but am job hunting like crazy.
I am grateful to those who created this site and to all who help, advise, befriend and share their stories. This is the first time I'm sharing part of mine and thank you in advance to anyone who takes the time to read or respond.
My goodness this writing of mine's becoming a blogg! Ok Im ending off now.:)
Take good care everyone.
Regards
Carol-Anne