I know it sounds foreign. It’s unlikely, unusual, and uninvited, yet I’m going to try and make it understandable.
There are a ton of different kinds of neuropathies. There is diabetic neuropathy, which usually involve the extremities (hands and feet) since the small nerve fibers are located there and it is farthest for the nerve to travel. There are neuropathies that involve the nerve being entrapped. (like carpal, tarpal, ulnar-tennis elbow & lots more) and these have multiple causes, like pinched nerves, sports injuries, blood vessels pressing on nerves, inflammation in muscles or nerves, and chronic conditions that effect nerve and muscle health, like muscular dystrophy, multiple sclerosis, lupus and more.
And then there are cranial neuropathies. We have ten cranial nerves located on each side of our brainstem, These control specific nerve & muscle functions. They look like THIS:
The Glossopharyingeal Nerve is Cranial Nerve 9 and it is in very close proximity to Cranial Nerve Ten- The Vagus Nerve. Many people have heard of the Vagus nerve, especially that overstimulation of it can cause syncope or fainting, and possibly heart flutters, pain on one side following path from brainstem to jaw and down one side of the body, it can affect abdominals, ingestion/constipation/metabolism and other autonomic functions as well as peripheral nerves and muscles.
The Glossopharyingeal Nerve, Cranial Nerve 9, controls function of the throat, taste, skin sensation, salivation and can affect the area with pain from inflammation or entrapment. (It’s a nasty nerve) When it is angry-it can feel like lightning bolts or burning in the ear, jaw, back of throat and neck.
Occasionally the two cranial nerves get together and go whack. This is what has happened to me. Two days after one of my regular radiofrequency ablations in my cervical spine (for radiculopathies, disc herniations and damage) it started. I’ve since had about a half dozen flares, all of different intensities and time lapse. I will attempt to describe it here:
I was minding my own biz, watching tv & commenting with hubbie when “ZAP ZOWIE WTH is THAT, STOP STOP STOOOOOOOOP..happened. A burning zapping pain hit me in the back of my throat, to my ear, and traveled to my right jaw, my neck and down the side of my chest, over my chest to the left side and would NOT let up! At first I thought it was a TN attack in the ear (which is actually called geniculate neuralgia), but I knew it was different. I grinned and beared it for about five long minutes that felt like an hour, grasping my jaw and my ear and my chest..but it would NOT let up. I started to get scared…I said to myself “it feels like a nerve but its pulling and burning at my heart”. I was in a deep sweat and could not lift my head from the pain. Hubbie said LET’S GO. Practically threw me into the car and he hightailed it to the ER. I was still slumped over holding my chest and neck. It had NOT stopped! “What’s wrong with you” the nurse asked..Heart attack? I answered. More of a question than an answer.
They took me in, did my vitals, hooked me up to an IV & heart monitor, sent me in for cat scans and because of my lupus did a dozen tests I didn’t need- $13,000 worth. The pain finally subsided (I assume it was thanks to the morphine drip and the nerve letting up) but Boy Oh Boy Oh Boy was that scary!
What tipped off the docs finally that it was the Vagoglossopharyngeal Neuralgia? I had a much lowered blood pressure than my usual. It stayed at 75/55 for the first hour in the ER. I had uncontrollable sweating. Both autonomal system fails. I had (tmi) superfast metabolism & bowels.
After the initial attack I had 4 more of varying degrees in the next ten days. None were as bad as the first. This time I knew what it was and promised myself and hubbie that if it lasted more than five minutes I’d go to the ER. They let up in time. Thank goodness.
Things to keep in mind: Docs don’t go from zero to rare diagnosis very well. They don’t “think rare”. They didn’t go there even when I gave them my history of cranial neuropathies I’ve had flares of. (trigeminal neuralgia, geniculate, temporal arteritis, burning mouth syndrome and repeats of bells palsy). So bear with the doctors, but make your history known-
I have no idea if this will happen again. My doctors suspect that the cervial radio frequency ablation of nerves caused inflammation to the nearby cranial nerves-specifically the vagus nerve and glossopharyngeal. In two weeks I go for the other side radiofrequency ablation. Let’s see what happens!!!! (mind you I’ve had these procedures for last six years without much incident)
In my case, I already have mononeuropathy multiplex (fancy for multiple nerve entrapments) so we know I have flare ups in blood vessels that press on nerves. If you are experiencing any of these symptoms I’d see your doc, don’t assume anything, and get a referral to a neurologist who can do MRI’s and MRA’s to confirm and prescribe anti-seizure meds that may help you. (& get a good pain mgmt doc!)
Here’s some info on Vagoglossopharyngeal Neuralgia from http://www.medscape.com/viewarticle/780441
Glossopharyngeal neuralgia, or vagoglossopharyngeal neuralgia, is a cranial nerve hyperactivity pain syndrome leading to severe, transient, sharp pain in the ear, base of the tongue, tonsillar fossa, or beneath the angle of the jaw corresponding to the distributions of the auricular and pharyngeal branches of cranial nerves IX and X. Swallowing, chewing, talking, coughing, or yawning commonly trigger this pain. These painful attacks are neuralgic and therefore paroxysmal, lasting for less than a second and as long as a few minutes. Recently the International Headache Society proposed a subclassification of GPN that includes classic and symptomatic forms. In the classic type, the pain is only intermittent with no underlying cause or associated neurological deficit. The symptomatic type includes the same characteristics of the classic form; however, the aching pain can persist between neuralgic episodes, and sensory impairment can be found in the distribution of the above nerves due to structural lesions. This classification does not take into consideration associated syncopal events. Neoplastic processes causing symptomatic GPN are usually malignant and tend to affect the nerve at its extracranial segment, in contrast to TN caused by benign tumors in the cerebellopontine angle in 5%–8% of cases.
Infectious and inflammatory processes may also lead to GPN. Multiple sclerosis is rarely the cause of GPN, but is the cause in as many as 3% of cases of TN. The pain syndrome of GPN can be very similar to that of TN, leading to a misdiagnosis if a thorough history is not obtained. The tracts of trigeminal, glossopharyngeal, and vagus nerves have an intimal neuroanatomical and functional relationship, and overlapping symptoms are not uncommon.[33,38,50,65,71] However, GPN and TN do not usually occur simultaneously.
Glossopharyngeal neuralgia is a rare entity, representing only 0.2%–1.3% of facial pain syndromes.[8,16]The overall incidence of GPN in the population is estimated to be between 0.2 and 0.7 per 100,000 people per year.[29,36,44,54] This incidence is probably underestimated due to insufficient awareness of this condition. Glossopharyngeal neuralgia is more common on the left side (left:right ratio of 3:2), but TN is more common on the right (right:left ratio 5:3). Bilateral involvement (usually sequentially and not simultaneously) is more common in TN (4%) than in GPN (2%). Glossopharyngeal neuralgia can lead to bradycardia and loss of sympathetic tone, and therefore syncopal episodes and even seizures occur in as many as 10% of the cases. In rare cases GPN can present as syncope with no associated pain syndrome, making the diagnosis even more difficult. Like TN, GPN is treated using anticonvulsant medications, but this latter condition tends to be more refractory to medical therapy, especially in patients with vascular compression. Pain refractory to medical therapy and poor tolerance of drug side effects are common indications for surgical intervention.
And from http://www.umanitoba.ca/cranial_nerves/glossopharyngeal_neuralgia/
Glossopharyngeal neuralgia (GPN) is also called vagoglossopharyngeal neuralgia. It is characterized by brief but intense pain on one side of the throat, which may radiate within the mouth or into the ear. Attacks are described as sharp, stabbing or burning in quality. They may occur spontaneously or be provoked by talking, chewing, swallowing, coughing and yawning. Some sufferers also describe other sensations in the throat such as clicking, scratching or a foreign body sensation. In rare cases the pain may become associated with fainting (or syncope).
This disorder is similar to trigeminal neuralgia, but involves the glossopharyngeal and vagus cranial nerves (also called the IXth and Xth nerves). Like trigeminal neuralgia, GPN initially includes periods of remission that over time decrease in duration, while the severity and frequency of painful attacks increases with time. A diagnosis of GPN is also established on the basis of a clinical history and normal neurologic, dental and MRI findings. Unlike TN, carbamazepine and other medications are generally less effective in controlling pain and are not typically used as a diagnostic test. Applying anesthetic solution to the affected area of the mouth or throat which may temporarily alleviate the pain, and has been proposed as a diagnostic test for GPN.
Three forms of GPN can be distinguished: Typical GPN, Atypical GPN and Secondary GPN. Typical GPN is usually caused by vascular compression of the IXth and Xth cranial nerve rootlets entering the lateral medulla. Atypical GPN involves a prominent associated aching or burning pain in the involved side of the face. Secondary GPN is caused by a tumor injuring the glossopharyngeal nerve in the neck or base of the skull (see Cranial Based Tumors). GPN is rarely associated with multiple-sclerosis.