glossopharyngeal neuralgia/trigeminal neuralgia

[Guest guest]

Hi,

I have a severe sinus infection and then my ear started throbbing.

I thought the IV antibiotics were helping with the throbbing,

because the ear throbbing and right eye pain went away for 2 weeks.

Now they are back. While I went to one of many ER visits a few weeks

ago, because of the ear throbbing, a doctor suggested trigeminal

neuralgia. I didn't believe it because this is continuous

throbbing, first for 3 solid weeks then, now this time, so far 3

days and going.

Is there anyone I can talk to who has either glossopharyngeal neuralgia or

trigeminal neuralgia? When I first did research, the reason why I didn't

believe it, was that usually it says that trigeminal neuralgi8a is usually

characterized by sharp electrical type pain lasting a few seconds, minutes, or

hours.

So, I was sure that I have a severe infection. But after numerous MRI's and CT

scans they found nothing. But yesterday I read about glossopharyngeal neuralgia

and it said it is usually characterized by

throbbing ear and throat pain, which is exactly what I have, and ,

that it can last weeks or months. If this is what I have, I know it

was caused by my second sinus surgery. Somehow because of the

severe infection, the main nerve got damaged. If this is what I have, it would

actually put me at ease, because at least there is a name for it.

I can finally stop insisting to my ENT doctors that I have a major ear infection

that, somehow, every medical test is missing. And then I can get proper pain

management for it. Please, if you have this condition, give me some advice.

[Guest guest]

asked: " Is there anyone I can talk to who has either glossopharyngeal

neuralgia or trigeminal neuralgia? When I first did research, the reason why I

didn't believe it, was that usually it says that trigeminal neuralgia is usually

characterized by sharp electrical type pain lasting a few seconds, minutes, or

hours. "

I've been diagnosed with atypical trigeminal neuralgia. Atypical because

instead of the sudden, shocking pain, mine is constant. And I mean CONSTANT. It

began on August 18, 2005 (yes, I remember the exact date), and I've had pain on

the right side of my face ever since. Pain management helps for sure, but the

pain never goes completely away, just waxes and wanes.

I had a hard time getting diagnosed, too. Seven dentist visits (it started

with what I thought was a toothache), and then a horrid neurologist who, after

two MRIs and a CT scan, told me there's nothing wrong with me because the tests

came back normal. By this point, I was ready to tear my hair out, not to mention

have that darned tooth pulled. My pcp sent me into pain management, and in

conjunction with a new neurologist, the PM doc and the neuro diagnosed the

atypical trigeminal neuralgia (which I'd already figured out for myself by

researching the Web).

I've never heard of glossopharyngeal neuralgia, but then again, I'd never

heard of the trigeminal nerve until mine acted up. I have a long history of

peripheral neuropathies, so it was no surprise to me when I was finally

diagnosed. The pain of TN is excrutiating, so I sure hope you don't have it, as

it sounds from what you've written that the glossopharyngeal will resolve on its

own in time. Once TN starts, it doesn't stop unless you have one of the

surgeries available, and I'm not a candidate for any of those for several

reasons.

I don't really have much to add, but if you'd like to ask any questions about

TN, feel free to contact me off-list.

Hugs,

a

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