My symptoms don't match classic GPN at all, so it was a surprise when I got a GPN diagnosis (after ~2 years of having very bad pain). It's constant throat pain mostly on one side and feels exactly as you would expect a sharp globus to feel. Pain can radiate around most of the throat when at its worst.
There are only a few things that help reduce the pain, albeit for a few seconds and by a few pain points.
- swallowing bulky foods
- swallowing ice water
- stretching the throat downwards
This almost seems like the opposite of classic GPN, so I'm pretty confused. Has anybody else experienced this?
Without going into lengthy detail about my own challenges, swallowing, if you can get over the few seconds of paralysis does stop it.
I had a moment (after three years of jaw pushing, throat stretching etc etc) whereby I was determined to eat properly, like a human being again; I was on the verge of a breakdown and had got to the point where I was damned if I was going to be defeated. I sat down to eat and sure enough, an attack came on - I just kept eating and forced my self to swallow - totally against what I'd become accustomed to and to my surprise the attack stopped.
Swallowing against the attack is one of the most difficult things you can do, after all, it's often swallowing that can bring it on but if you can be strong and brave, swallowing (for me) brings the attacks to a short, sharp halt.
Oddly, I've found that tugging my left ear lobe and tilting my head to the right, has also stopped it in the past... I'm going to see my Doctor tomorrow to see if he can have a good look in my ear and see if there's anything in there that may be connected!
I wouldn't even begin to try that. I've had the problem for nearly seven years now and have tried everything possible to deal with the attacks (though it's medically controlled now) and the thought of cold water against it - no thanks!!
I've learned to swallow down the right side of my throat, control my head movements, alter my speech, even adjust the way I sit so that movements don't trigger it.
I sometimes suspect that there is no such thing as "classic" GPN. Neuropathy of the 10th cranial nerve can present with quite a range of symptoms. My wife initially thought she had a fishbone caught in her throat. Only later did the pain migrate into her palate, then jaw and cheek, then "behind" her eye, in a mixture of classic and atypical Trigeminal Neuralgia.
MWI, what medical treatments have you experienced that helped you control the GPN pain?
I take Tegretol slow release carbamazepine but then I supplement it with Ibuprofen (when it's getting to it's worst point) and I also take Vitamin B12 capsules when it's active.
I don't suffer with it all the time now but I know when it's coming on; I get a slight tickling in my throat and that, historically, is when I'd start to take the Tegretol. That usually prevents it from getting to the attack stage albeit still painful but the ailment can still last for months. It's only recently that my Doctor and I have decided to stay on the Tegretol permanently so it can be kept at bay. If it does start to come on, I can increase the dosage to ward it off.
Ibuprofen is pretty good for relieving the pain but I try and take as little as possible (although that can still end up being a large amount) and only when I absolutely have to. I like to try and let the Tegretol work alone rather than disguise the fact with Ibuprofen.
On three occasions, I've taken Vit B12 capsules and have an almost immediate effect - with in 24hrs. I don't know if this is placebo or truly does work but as I go on with GPN I experiment!
MWI, your response to Ibuprofen is unusual. Very few GPN or TN patients get positive results from over the counter anti-inflammatory meds. I've also heard from a few patients who believe that Vitamin B12 may have helped them -- but never immediately. In the 20 years I've been talking with facial pain patients, however, I've come to accept that there is a very wide range of experiences in this population, and a wide range of responses to medication.
As you may anticipate, I must caution you not to exceed recommended 24-hour doses of Ibuprofen. This med can cause gastritis in a few patients, which is no fun at all on top of face and throat pain.
I also get relief from swallowing-- hot or cold liquids, sucking on throat lozenges, etc. I also have atypical GPN-- I have constant pain on one side that feels like a sharp knife point lightly pressing into my right tonsil area. It gets worse from talking but fortunately I do not have "attacks." So maybe some of us with constant pain get relief from swallowing vs. those of us with attacks get triggered by swallowing? Just a guess.
Also, I just got a diagnosis as well. My doctor started me on Tegretol (Carbamazepine) but it led to uncontrollable vomiting so it will be on to the next medication to try.
Rachel, when I used to get the attacks, swallowing actually stopped them. It's the hardest thing to do; it's like running towards the danger but it really did work. It takes a lot of strength to compose yourself whilst having the attack and then forcing two, three, maybe four hard swallows, but it did used to work.
Pulling my left ear lobe also works sometimes! Strange but true!