I am writing primarily to gather information. I have been diagnosed a few years ago with Glossopharyngeal Neuralgia, although I was told it was atypical, in that the episodes of pain that experienced can last any where from 1 hour to (worst experience) 8 hours.
The occurrence of these episodes is usually once a year, but the experience is so painful that I feel a lot of anxiety after each episode. I just had another of these episodes on Sunday and as always, it is the most excruciating pain I’ve experienced.
I have just heard of eagle syndrome, and the symptoms sound very familiar, except I have seen no description of the intensity of the pain, or the duration of the episodes where pain is present.
ES pain can be very intense, and it can come and go, but typically, once symptoms start they’re pretty persistent i.e. you would have some sort of pain or other ES symptom(s) daily. If you want to rule out ES, you should ask your doctor to prescribe a CT scan with or without contrast, specifically to look at your styloids & stylohyoid ligaments. It is possible that you have ES & it is triggering your Glossopharyngeal Neuralgia without offering any other of the “typical” symptoms. Getting the suggested CT scan is the only way to know for sure.
There’s lots of info about ‘common’ ES symptoms in the Newbies Guide- you could have a browse through that and see if anything else adds up. Often people have odd symptoms like ear pressure/ aches/ tinnitus and don’t realise that they can be ES symptoms.
Usually members have symptoms more than once a year, but as Isaiah says the only way to see if you have either elongated styloid processes or calcified stylo-hyoid ligaments is to get a CT scan. If you do have it done, make sure that it’s requested to look at the styloids, and to evaluate it for possible ES. (Sometimes members have found that it’s never been mentioned in the report!)
I have scheduled an appointment to meet with a neurologist. Unfortunately that appointment isn’t until the end of August.
I have read over the symptoms, and I do have some of those, including the sensation that something is lodged in the back of my throat,a tightness in my throat, occasional sore throat without clear reason, occasional clicking while swallowing. I also find it difficult to sleep because of discomfort in my throat.
I also have been having regular bouts of lethargy coupled with pain that feels like a sinus headache that last sometimes for an entire day… not sure if that is related.
I have always been more concerned with the symptoms that had been diagnosed as “atypical” glossopharyngeal neuralgia because that pain is so excruciating. The other symptoms, which I have just listed, I have written off as being related to anxiety, or happenstance, but never considered important.
Hopefully my discussion with the neurologist will help clear things up, I just wish the wait weren’t so long.
I had many of those same symptoms - many misdiagnosis’ later the CT revealed bilateral ~5 cm styloids. Push for a CT ASAP
I suggest you ask your Primary Care doctor to send you to an ENT and to bring the symptoms listed in NEWBIE section with yours highlights and a picture of one of our 3D CTs [you can print mine] since many doctors aren’t familiar with Eagle because it is so rare. A CT is really the next step to verify if it is your Styloid causing the problem
I finally got results of my ct. My styloids are 3.1 cm, and were noted as being minimally elongated. Have yet to have a conversation with my Neurologist regarding these results, and have not had any Glossopharyngeal Neuralgia events since May.
This is all good news! So glad you’re GN has subsided AND that your styloids are only slightly elongated. Now you have a baseline to use if your symptoms begin again (which I hope they don’t). It will be interesting to see what you neurologist thinks. If it’s pertinent information regarding ES, please pass it along to this forum.
Different doctors use different lengths as their average- many use 2.5 cms, so (especially depending on your height, I reckon) 3.1 could be a bit more than minimally elongated. Also the angle & width of the SP is important, and whether the stylo-hyoid ligaments are calcified, so if there’s anything in the report about that it would be helpful for you to know, and to bear in mind when you talk to the neurologist, & if any symptoms come back. Really glad to hear that the GPN has eased up!
