Glossopharyngeal neuralgia

I am looking for a Glossopharyngeal neuralgia support group or group discussion. I've been recently diagnosed with this condition. Thank You!

[kreshbuck]

I have been diagnosed the same. I am ready for discussion

[elantra2006]

I have changed my nickname from mag4160 to elantra2006. If you wish to contact me, please do.

[elantra2006]

Hi,

I am familiar with this ailment as I have suffered with it for two years. I started with a sore throat that went away for a brief period then came back. Went to my PCP with the complaint and therefore tried anti-biotics, allergy medication & testing for thyroid. Everything came back normal so I said enough! Send me to an ENT doctor. Upon my first visit, he diagnosed me with nuralgia. I then looked to the Internet for help and low and behold there really was an actual disorder. I had all the symptoms stated. I was put on gabapentin and it worked for nearly a year (did have pain on and off throughout). Then the pain came back and the ENT said there was nothing else he could do for me and sent me to a nerurosurgeon. They wanted to do surgeyry but I wasn't ready so they increased the dosage of the medication and I was good on that for another year (did have pain on and off again). Then the pain was back again with no relief with another increase of medication. They also added tegretol and the combination of medications were making me sick and my quality of life was being interferred with so I opted for the surgery. I had the microvascular decompression done June 2008 and so far so good, no pain. Was stated that the ninth cranial nerve was being compressed by a blood vessel.

Good luck and I hope you find relief for yourself. Be assertive with your doctors!

MaryAnn

[LisaMichelleFine]

I was just diagnosed with Glossopharyngeal Neuralgia yesterday.  I turn 40 on November 15th.  The pain is unbelievable when it comes on, and unfortunately I have a very difficult time taking pain medications as they make me very ill & drowsy beyond belief.  I have had 2 MRI's, a Fine Cut CT Scan, met with an Otolaryngologist and a Neurologist.  We now know that I have this rare neuralgia condition.  I am just now trying to figure out my plan and ways of dealing with this, so I am researching as much as I can. I have only had my condition for less than two weeks since it came on suddenly on Oct 27th.  I thought I had a tumor or aneurism (aneurysm) because the pain was so severe and it came in waves.  I know surgery is an option and I will consider this if my pain continues at the severity I experienced when it first came on.  For now my pain has slowed to a dull ache in the right side of my throat, ear area, and upper head with sporadic shooting pains every once in a while.  I have been prescribed Nortriptyline which I am to take daily.  I am concerned about the negative side effects with any medication as there is dizziness, and they make you really tired among many other things.  My life is altered and now I need to learn all I can on how to deal with this.

[nwiebe36]

My  17 year old son was diagnosed with Glossopharyngeal neuralgia in July 2008, and totally stopped responding to his medication last week. He had emergency surgery to decompress the nerve on November 01, 2009 at Dell Children's Hospital in Austin, Texas. A discussion group about this rare nerve disorder would be great.