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 Trigeminal Neuralgia the only Neuralgia? 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?
An extra question: After open heart surgery in 2003 I developed Trigeminal Neuralgia also.
Is that common?
The following user gives a hug of support to enie: thesedays1 (02-15-2011)
You need to contact the University of Pittsburgh Medical Center,Neurosurgery Department's Center for Cranial Nerve Disorders. My sister had surgery for trigeminal neuralgia there and it was very successful. Good luck.
Well, I will offer you two other suggestions then. One, they have trained many surgeons who are now located elsewhere. One of the neurosurgeons here in Birmingham trained under the doc who invented this procedure there at U of P.
Perhaps they can tell you if one is in your area.
Two, find out where your old doc went. If they won't tell at his old practice (and they should and you should tell them that!), then contact your state medical association. If he's still in state, they will know. Or you could call the other neuro practices in town and ask if he's moved to one of them...or see if his home number is listed and call him there.
I have been diagnosed with glossopharyngeal neuralgia by a neurologist in June, 2007. I am 64 years old and female. I have been told it is a rare condition, my neurologist said he sees one patient every three years or so. My brain MRI showed nothing as did my CT scan. I have been prescribed Gabapentin and Tegretol, not at the same time, of course. I have had symptoms for three months. I am an RN and never heard of this condition before being diagnosed. How are you doing now? I have left ear pain still but the head pain has stopped mostly along with the throat pain.
I have had severe ear pain when sleeping on my side at night...for at least 30 yrs. Doctors have responded with such suggestions as..."Take Niacin", "We can find nothing wrong", and other such dismissing answers.
I also get the pain sometimes from the stems of my glasses. Years ago a dental student mentioned the possibility of facial nerve problems.
Do these symptoms match either of your symptoms? I've also been told that since I grind my teeth at night, a night guard might be helpful...
I feel you pain ladies
I don't have your symptoms, my ear pain was part of shooting head pain and throat pain. I was also hospitalized on two occasions for nausea and vomiting which resulted in dehydration along with the above mentioned pain. I am discovering that neuralgia takes many forms, however.
The surgery someone was thinking of is called Micro Vascular Decompression Surgery. Dr. Janetta, who has since retired from the University of Pittsburg was the neursurgeon who pioneered the surgery. It is a good treatment for Trigeminal Neuralgia. It is a cranoitomy and has it's risks but, it is the only surgical treatment for Trigeminal Neuralgia that deals with the underlying problem vice just cutting the nerve so the pain signals do not get through.
Trigeminal Nerualgia can cause ear pain but, it is importaint to have a MRI done to rule out all causes first.
Hey it is ok. I found when my Trigeminal Neuralgia relapsed I could not spell Trigeminal Neuralgia for nothing. I think it was a case of wishful thinking on my part. The reason I know about the surgery is I am going to have it done. Dr. Janetta is loved deeply by many of us with TN. He is a wonderful man and it was a sad day when he retired. Still, there great doctors out there treating TN.
I just found out that i have Geniculate Neuralgia. The worst pain i have ever experienced. I just starting taking Tegretol. I just do not like the way it makes me feel. Taking this to combat the occasional pain attacts. Who else has this and what are you taking ???
Question: Is Trigeminal Neuralgia the only Neuralgia? Is having Geniculate or Glossopharyngeal Neuralgia really so rare that even neurologists don’t recognize it?
There are quite a few different Neuralgias. I know there is one that hasn't been mentioned in this thread, and that is Occipital Neuralgia. I have Occipital Neuralgia, and I get a burning pain in and around my left ear. When it is at it's worst, I get a burning and throbbing pain over the whole left side of my face, including my ear. Occipital Neuralgia affects the Occipital nerves at the back of the head, and the pain can travel over the whole head in some cases.
It's a pity that some Neurologists don't know enough about the different Neuralgias, and what they do, and the pain they cause...
My dr does not have any other patients with GN. I stopped taking the Tegretol, it just wasnt me. I have not had an occurance since. But, I will at some point I'm sure. What meds are others taking? Do you take it daily? Do you feel like you are in a fog? How irritating is all this? It could be worse for sure. ~laura