Don't even remember how exactly I stumbled on this PDF, but it was while researching more close by surgeons who may some some insight as to WTF is wrong with me and not be scared of styloid surgery.
But glad I did Case Report of Glossopharyngeal Neuralgia
I hope maybe some of this can help someone else on here get a few minuted of peace.
I know the glossopharyngeal nerve is something that comes up on here a lot, but I don't think I really grasped how meaningful it was before
I spent all day just wrecked with pain, the gags, throbbing headaches, disorientation (ya know the usual), and laying down was only making it worse. Tried some experiments with my lidocaine patch placements after reading this and was really surprised!
The patient in the PDF mentions that lidocaine patches on her neck helped manage Some of her symptoms, which were otherwise totally crippling her. She also mentions her symptoms were made worse with anything touching the back of her neck! This part really struck me since My own decreasing ability to wear clothes (heavy coats, then coats, then bras or anything with elastic, then anything with a collar) or risk gagging endlessly and be on the floor in Swirling Pain Hell has been brushed off as "mysterious" or "maybe try a different shirt" (Yeah, thanks, it's winter. I'm cold, and I still want to stand up please?).
Since it's hard to get a patch to stay on anything with a bend, I couldn't really get it right up on my hyoid. I poked around my neck a bit and decided there was a lot tension around my voice box, and my symptoms did funny things as I jabbed at the muscles (like around the thyroid tissue, which I know Kelx has mentioned alot in issues).
I cut those bad boys into little strips so I could bend with pulling them off, and slapped them on there, leaning a little to the right side where my spike is, and a small strip on the back of my neck.
Sweet holy! It took a few minutes for the patch itself pulling on things to stop making me gag, but when it kicked in I was amazed. It really took down a lot (Not all, but any little bit is massive right now) of the headache, neck pain, face pain and twitching, and the throbbing whooshing pressure at the back of my head and ear. It also helped Lower the general consuming "actively dying or having a stroke" feeling. I was able to swallow better than I have in weeks and finally ate a whole meal comfortably.
One strange aspect is with the wide spread horror gone, I Really started to notice the stuck-chicken-bone like feeling in my throat, something that never really bothered me much before. It was like someone finally turned down the tv and I could notice the radio was on in the other room.
Anyway, I know Lidocaine patches seem like they're more of a controlled substance than Percocet sometimes, but if you got them try this out!!
Again, not fixing anything, but just less terrible.
Glossopharyngeal summary
Basically glossopharyngeal neuralgia is injury, irritation, stretching, compression, or idiopathic issues with the glossopharyngeal nerve. Some people get it through surgery, neck injury, etc. It has been known to be caused by ES and elongated styloids which cause neck tissues to rub against or compress the nerve.
There's a whole host of weird symptoms, many of the very similar to ES in general (a prevalent factor in ES as a painful issue maybe?) and typically present with throat pain, headaches, gagging, tonsil pain, stabbing and Severe neck and ear pain, and can also radiate down the neck into the shoulder. It causes other weird issues like voice changes, smell intolerance, facial pain and spasms, trouble swallowing.
Because this nerve is paired with the Vagus nerve, it can also cause some weird cardiac stuff like fluttering of the heart, even more serious issues like drops in blood pressure, fainting, arrhythmia, seizures
Symptoms can be brought on by touching the patch of the nerve by the ear, pain when moving head (to affected side but can occur bilaterally), talking, swallowing, certain tastes, chewing, laughing, and in some cases touching or pressure to the back of the neck.
It usually starts as attacks of shooting or electric like pain that lasts briefly, but with time the attacks can increase in frequency and duration and develop into constant pain.
Sound familiar?
It's just as unusual a diagnoses, if not more so, than ES. However, it's not Debated as to whether or not it's real or painful like ES. Medicine seems to agree that irritation to this nerve is BAD, and sometimes the styloids are a factor.
Maybe mentioning studies like these to Dr's can take their mind down a different path and help them understand why, yes, a spike growing into your throat causes some issues.
Maybe you're not crazy after all.
This is a good suggestion SnappleofDiscord. I use Lidocaine patches on my body for some other pain and I have found the generic ones to be not nearly as good. The non-generic ones are much more expensive of course, but for me they are necessary.
Glossopharyngeal neuralgia was my first Eagles symptom and it went away about 90% after my first surgery on my left side and then 100% after my second surgery on that side. But before I had the surgeries, the drug baclofen worked the best of the many I tried for the GN. Just in case anyone wants to try a drug too.
Heidemt- first off, in impressed and flattered you made it through at least most of the long form, rant post 
Secondly, I’m very curious as to what is the brand name of lidocaine patches?
I have Terrible issues trying to get them to stay on, the and efficacy, even stickiness of the patches seem to vary from box to box. Even with a solid alcohol wipe before each application. My pharmacist is convinced they can stay in during sports and swimming but…
1- who the hell is doing sports in a mummy bandage of lidocaine patches?
And 2- these can’t even stick during a quick movement much less the beginning glisten of a sweat!
I used to just cover them in kinesio-tape to keep them from flapping around and plopping off me like a whale blubber, but my nerve symptoms are so amplified now that the pull of the tape makes things worse.
Tell me your secrets!!!
I’m also in awe, and maybe a little jealous out of desire, for your results! Yeaaaah!!!
I haven’t had the chance to read your backlog, but I Seriously hope this means you’re feeling better. Even a little.
Was is this original dx that started you down the ES path? Was it taken seriously?
Was your surgery an eventual result of this initial dx, or did you have to keep fighting and trying new key words with doctors?
Interestingly baclofen has made my symptoms worse. I know it’s a godsend for many people.
So please! Don’t be turned off trying something that may work, anyone reading this far!!
My best guess is it’s related to my injure shoulder, but I may also have worse posture when my muscles are relaxed. All I know is it takes Days to backtrack from the damage baclofen does.
Thanks for the info about the lidocaine patches- I have seen reports from people on the TN site too have had relief, I'm not sure if you can get them in the UK though for some of us. Glad it helped you; I think that you can get lidocaine as a topical cream in the US too- that might be easier to put on than patches?
I think that the difficulty swallowing/ something stuck in the throat feeling is often put down to the styloids poking into the throat, but interestingly when I've read up on GPN/ problems with that nerve, it can be a symptom of the nerve itself being irritated, not actually a literal something poking in the throat.
I will add the lidocaine patches info into the ES Info section.
My name brand patches are Lidoderm. Yes, I have a hard time keeping them on. I have to kind of bind them under my clothes for about 3-4 hours before they'll stick on their own and then they'll usually stay put for 24 hours. But sometimes the edges still bunch or curl up, so I use paper tape to keep the edges down when I need to. Paper tape is what they use in the hospitals. The nurses gave me a bunch the last time I was in the hospital. I think paper tape would be too hard on your nerves though. I don't see how the patches would stick on the neck, especially doing sports type things, unless they were bound down.
The glossopharyngeal neuralgia (GN) is what started my Eagles saga. I saw about 20 doctors to get diagnosed with GN. I live in Hawaii and when none of the ENTs here could figure out what I had, I had to go to the mainland where they told me I probably had some kind of facial pain. Then after looking at all the pictures of various nerves, I figured out that I probably had GN and then I finally got sent to a neurologist who told me I had classic GN.
After going through all kinds of medications for that, I realized that something else was going on and self-diagnosed Eagles. So I went to a local ENT and told him that someone suggested I might have Eagles and asked for a CT scan with contrast and they finally diagnosed me with Eagles in 2011. I've since had 5 surgeries for Eagles and have seen 30+ more doctors all over the country to get all the styloid taken out on both sides. I had classic Eagles on my left and vascular Eagles on my right. I'm still recovering from the last surgery, but I'm much, much better than I was. Every surgery I had has helped in some way. It's been a piece by piece process and it's been a long, long fight.
I should mention that along the way, I learned that it's often best to not tell the doctors all your symptoms because then they get scared. I personally found that I had better success in convincing a doctor to do a surgery when I only told them about my "normal" Eagles symptoms. I don't know if that's the advice I would give everyone, but it's worth considering.
I just came by here to do some maintenance and I got "hooked" on this fascinating thread! Wow, Snapple, you should write a book! LOL
I just came here from the GPN site, and I'm wondering whether they would be interested in the article you posted.
Seenie
This is my current patch pattern, with 2 thin strips on the back of my neck too. The spaces seem to keep them pushing each other off. This whole thing is getting a little Ridiculous tho.
Jules- Awesome!
I never got a chance to try them on my throat, but I was having Amazing luck with my nerve pain using my friend's Ketoprofen patches she brought back from the UK and Malaysia. When I slapped one on my shoulder (pre surgery sometime last year) It was the first time I had felt pain relief in a year! Brought me to tears.
The lidocaine cream doesn't seem to do much of anything like the patches do tho. My neuro gave me the cream to try and get areas I can't stick patches, and all it seems to do is make my skin kind of numb. Worth a shot, but it seems only good for rashes.
And this is some interesting info. I've only started getting my obsessive-researching-merit badge in GPN. It makes sense tho, the pokey feeling doesn't seem to make sense for a bone location wise.
Heidemt- Curses! Mine are lidoderm too. Binding them under clothes seems to one of the only solids solutuions but I still can't get them to stay on for 24. 12 is a struggle. I eve prep the area with alcohol before hand to try and get some better stick.
Try kineseo-tape over yours too! It's got similar stretch to the patches. worked pretty awesome for a while.
I'm glad your doctors (eventually) began to listen to what you had to say. It sounds like we're on a similar count of collected doctors tho. How exhausting. Fingers crossed this last surgery is the key.
And I think this is very wise advice. I'm still struggling with it, wanting to Spew out every odd symptom in hopes One makes the puzzle fit together (Last doctor had no interest in my stuff until I mentioned voice changes, so I never know! ARG!), but you are correct. They want to tick an obvious box an don't seem to go in for mysteries.
Thanks! Spread the word!
Mod support said:
I just came by here to do some maintenance and I got "hooked" on this fascinating thread! Wow, Snapple, you should write a book! LOL
I just came here from the GPN site, and I'm wondering whether they would be interested in the article you posted.
Seenie
It is tricky not knowing which symptoms can be the magic key to unlocking the doctor's interest- I was getting pulsatile tinnitus and mentioned that to the doctor who operated on me- and he was straight away really interested- turns out he's doing a lot of research into the causes/ treatments of that!
There's a Ben's Friends GPN site, and TN site with some resources which might be helpful, although I think they're reviewing some of the info currently on there. You can visit the sites and look at discussions or info pages on them without joining if you're interested. There's also an interesting article about cervicogenic face pain, which I have to admit I still haven't got round to reading yet... it's quite long, and haven't had the mental energy recently!! Here's a link if you're interested: http://www.livingwithtn.org/page/cervogenic-model