| | Glossopharyngeal or Geniculate Neuralgia
After 40 years of agony, I was finally diagnosed in 2001. It took a few months of evaluation for the Neurologist to determine the cause of my terrible earaches and mini black out spells, but finally his diagnosis was Neuralgia. He said that it was not essentially Trigeminal, but that it was either Glossopharyngeal or Geniculate Neuralgia. He wasn’t quite sure which one, but would pull my old charts out of the archives and we’d talk about what could be done on the next visit. He also made me an appointment with an Electrophysiologist.
I looked it up on the internet when I got home. They were almost identical to what I had been going through most of my life, and it seemed that both types fit my long standing problems. I didn’t really care which one. FINALLY my torture had a name. No cure, but a diagnosis meant a lot. Somehow, by knowing what was happening to me, it finally made it bearable.
On my next visit we discussed meds, plus he told me that it had probably been my problem all along but was over looked because it was so unusual.
My problem: I was assigned a new Neurologist because mine moved. And now the new Doc can’t seem to see anything in my chart about the diagnosis of Geniculate Neuralgia or Glossopharyngeal Neuralgia and sent me to a neurosurgeon. After a catscan to see if I had a tumor, the Neurosurgeon said except for a lot of old scaring he didn’t see anything. He asked why I was seeing a Neurosurgeon, and I told him about the deep pain in my left ear being either Geniculate or Glossopharyngeal Neuralgia. He said he never heard of such a thing, Trigeminal Neuralgia is Trigeminal Neuralgia and that I needed to go to ENT for an earache. I said that ENT sent me to Neurology………… He walked out.
I felt like square one.
Question: Is having Geniculate or Glossopharyngeal Neuralgia really so rare that even neurologists don’t recognize it? I can’t find my old Doc to find out why it is not in the chart records. All I could think of is that My first Neurologist was only guessing and didn’t have the proof, so he left it off his notes…….
How do you prove that you have the condition?
My ear pain history: It started in 1963, when I had my last Cleft Palate surgery. I was 13. I started having unexplained sudden and ‘horrible earaches’ deep in my left ear. Most of the time they would hit unpredictably, but they were guaranteed to strike after I was exposed to a very high pitched noise or extra loud noises.
- In 1985 the ‘occasional’ horrible earache spells suddenly became relentless. And even when the stabbing ear pain would ease off after a few minutes; the painful residual soreness throbbing and pressure didn’t ease off. This was accompanied by extreme tinnitus, migraines, dizzy spells, chest pain, and mini blackout spells, (I fell a lot). This lasted for four years and then they eased off. I still had the occasional stabbing earaches, loud tinnitus, and throbbing ear and head ache, but I could live with those.
- It returned in 1994 for a couple of years, and then eased off again.
- Then in 2000 the incessant spells begin again. This time they came with added dizziness and more mini black out spells, plus I was having more chest pain, (I found out later that I was having mild heart attacks). I went to a Doctor for help but my regular PC Doctor said it was probably fibromyalgia or it was all in my head; so in 2001 I went to an ENT, thinking inner ear. They sent me to a Neurologist who diagnosed me with migraines and Neuralgia (either Geniculate or Glossopharyngeal). The Neurologist sent me to an Electrophysiologist, who quickly gave me a Pacemaker when they found out that my heart was stopping for 8 and 9 seconds at a time. They also said that the top heart chamber beat separately than the bottom chamber and gave me Flecainide to help. My Neurologist also tried me on several meds, but when the antiseizure meds had too many side effects and the Nimotop was too expensive, he gave me Plendil and T#3 to help with the pain. I’m not sure but it seemed that the Plendil helps some; and T#3 knocks the edge off the pain.
- In 2003, after open heart surgery, the terrible earaches, migraines, and other symptoms started to be even more frequent. I also started having facial pain on my left side. My Neurologist said it was Trigeminal Neuralgia. He upped the Plendil and gave me Relpax for migraines, but said that because of my heart problem he was afraid to do more.
Note: I also have Marfan traits; plus Chronic Dresslers from several undiagnosed heart attacks.