I would say, YES, they are. Otherwise, why we are in that "please somebody kill me" every second pain?
While, there's no answer to our pleading, I would think that they're wrong. No proper statistic, no new treatments, no medication that would help. Everything is from the Stone Age. And on the top of it, no one interested to change the situation.
I don't know how to finish this. I'm sorry.
Ann xx
Oh Ann! I don’t know if it will help, but please considered yourself hugged.
Oh yes. I was first diagnosed almost 10 years ago, had MVD surgery at UPMC with Dr Horowitz 5 years ago last Thanksgiving, and was free of it until April, when it returned. No doubt that's what it is. I had two arteries that were the largest he had ever seen sitting on IX and X.
I'm sorry that all of you have this, but thank you for responding, as I think it is helpful to see the wide variance that GPN can present as.
My pain is centered more in my left ear, but I sometimes get back of throat pain when I swallow, when it is bad. I get both steady pain (kind of makes that ear feel cold, which is kind of weird) and then sharp "bonus" pain when I inhale. It seems awfully erratic, too. I can't discern any triggers, just random acts of pain. Sometimes it is an icy-burn (oxymoronic, I know), sometimes it - I guess sets my teeth on edge, like the pain version of fingernails across a chalkboard.
I called my neurologist over a week ago, and would call back today, (I always seem to manage to call when he is on hospital rotation, which means not in the office), but I have a TMJ appointment (other side, natch) this afternoon. I would rather increase the odds I'm here to take the call! (I also find it rather amazing that he hasn't wanted to see me since April - all these calls, and I would imagine he doesn't get paid for them, only for office visits.)
I am hoping to get the upper hand one of these days.
No you’re not an anomaly!! I have constant pain daily, never have had the attacks other people talk of but my pain increases when it likes then decreases but is ALWAYS there. Think I’d rather have attacks tbh, but each to their own! What I would say is dont allow yourself to be told it is not GPN simply because your symptoms don’t match what is “normal” for the condition. I did, and 4 years later the offending vessel was found and it definitely was recognised as GPN despite all my protests for 4 years!
As with TN, some patients with GPN will sometimes have some non-classic or “atypical” features. GPN may then be referred to as “atypical glossopharyngeal neuralgia.” These atypical features can include
some dull, or achy, or burning components to the pain. There may also be some baseline of constant pain. Sometimes the pains are not clearly triggered. Sometimes there is no good response to medication. Nonetheless, if the patient has a major feature of sharp, sudden, severe, brief pains in the glossopharyngeal distribution, the problem is still felt to be GPN, and should be treated according to the usual GPN algorithm. "
I had 4-5 years of a thin, pulsing, pricking sensation to the left of my Adam's apple, worse when I lay down. Then in a fairly short period I developed the more classic symptoms of pain in the throat, lower jaw and ear. I only had the severe needle-stabbing attacks 2 or 3 times. After a year this settled down to a burning sensation in the lower jaw that sometimes includes the ear. Sometimes there are intense spikes of this burning sensation and sometimes there are spikes of sharp pain, especially when talking or eating.
It is still worse when I am horizontal, and lately the pulsing pain spikes have been waking me up at night. A typical day features both the burning sensation and pain spikes multiple times, sometimes going on for 30 minutes. When I get the pain at night, it doesn't go away until I sit/stand up.
And that's in addition to TN on the other side since the 1990s.
Just cycling back to this thread after a long time. Last summer, the neuro put me on Lyrica, and that helped a fair bit. Until it didn't. I thought it was just winter coming that caused the increase, and figured I would tough things out until spring and hopefully things would be better then. (I hate going on higher doses of things.) Then, this spring, it started to get worse. Called the neurologist, he upped my dose. No help. I was going for a post-op (for cervical fusion) and decided to ask my neurosurgeon for a second opinion. (The neurologist kept insisting it was atypical facial pain. Which means no help past pharmacuetical.)
The ns immediately thought glossopharyngeal, asked a few questions, sent me for an MRI - which showed a blood vessel bugging my 9th cranial nerve. Eureka! Vindication! Ditching of neurologist! :-D
Seriously, I never was so happy to have a "finding" on an MRI. He upped my dose of Lyrica further and said to come back in a month. Which I just did.
No real help. He is sending me to an ENT to make sure there isn't some ear stuff going on, and I think if that is clear, is likely to schedule an MVD. (When he said he would make a hole in the left side - all I can think was "I need that like I need a hole in the head." - after all, we DO need holes in our heads, or we couldn't breathe or eat. :-D )
So, more waiting, now for the ENT office to call and schedule me - then I schedule another appointment with the ns after that appointment.
I swear, I live appointment to appointment.
I just want to get to the bottom of this pain, and get rid of it. Or even most of it. I can tune out some. But this has gotten really old.
Hard parts are when the neuro asks when this started (no clue - I have had ear pain for most of my life, some TMJ, some probably not, but I can't remember when I started having frequent pain always on my left side, and I don't remember when I first got what I call "bonus pain" - that shorter lived sharper pain. I know when it started to be a regular thing, I know it is between 8-10 yrs since the first time, but no clue beyond that.
I have no idea how long those sharper, icy-burning pains last, don't think swallowing is a trigger (he kept asking if swallowing started the ear pain - no, but if the ear pain is bad, sometimes the throat hurts. too) - I don't time the darned things, merely endure them, and try to ignore them.
This is a really stupid thing to have, isn't it? ;-)
I think they're wrong. I am perfectly fine with getting those random, intense pains that make me wince and grab my ear or rub my neck. For me, this disease is (currently) at its worst when I have daily deep, boring pain that requires ice on my ear, jaw, and neck, keeps me from talking and dreading chewing or swallowing, and has made me beg my dentist for novocaine, just for a few hours of relief. And this is the pain that goes on for months.
I'm in basically the same position as you are ln this one. Way back when, the pain attacks may have lasted seconds or minutes, but nowadays, I've got constant pain along with random attacks throughout the day. I've been diagnosed with Atypical Trigeminal Neuralgia along with Glossopharyngeal Neuralgia. I'm not trying to say that you have that, but it is something you'll want to ask your Neurologist (or whoever it is you're seeing) about.
I feel your frustration & confusion. Every time I've tried to do research, I always find that there are similarities, but it never truly matches up to where I can say with certainty, "This is what I have", Definitely makes me wary about my diagnoses & the path my care team is taking. They have no idea what to do (which they've admitted), and at this point it's basically checking off any possibility so we can try to narrow it down, which makes me not trust their judgement even more. Although I know why the doctors are having me do these things, it doesn't make it any less frustrating or confusing. Anyways, I'll stop before I get too far into ranting & end up saying something I shouldn't. Good Luck