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Old 05-19-2003, 11:51 AM   #1
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ngd59 HB User
Unhappy vagoglossopharyngeal neuralgia

Is there anyone out there that has been diagnosed with VGN? I feel I'm on a deserted island. So far MRI's and EEG have shown nothing beside swollen lymph nodes and a bulge between the C5 and C6 vertebra. Dr. put me on Neurontin 300mg/3times a day after trying Tegretol and having disturbing side effects. My worst pain has subsided but the right side of my throat and neck feel swollen or like there's pressure on it. Feels like I should be choking but I'm really not. Hate the sensation I get when I swallow. The deep ear and tonsil pain is maddening without the meds. And I have this vibration feeling inside from my throat down thru my chest and abdomen. Talk about anxiety ridden. This also affects my heart rate and breathing. The dr. said the meds would take care of that too. Some of the past episodes have been bizarre. I've had symptoms for many years but, just in the last year has it become constant, painful and scarey. Finally the Ear, Nose and Throat doctor diagnosed it. Am now seeing a neuro but am not pleased with his impatient manner. Seems all the dr's are overwhelmed with patient loads these days.
Anyway, just looking for someone who can relate and share weird symptoms!!

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Old 05-19-2003, 02:46 PM   #2
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I am guessing that you from the uk right? if you a re then go private.. i got to wait till april next yr to see an ent... i am going private just sorting out some insurances then i am off to a private doc..

 
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Old 05-20-2003, 07:20 AM   #3
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No, I'm not from the UK, in USA. Why can't you see and ENT until next April?!!!! Are there that many sick people there? or just one doctor? No, I know that in some other countries with government health care systems people have to wait a long time to be served. Only if your life is in eminent crisis will you get seen sooner. I hope you get in quick. You did'nt say what your symptoms were or if they were similar to what I describe mine as being.

 
Old 05-20-2003, 01:57 PM   #4
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O sorry.. thought only the uk were bad with the health service.. yes its free on the nhs BUT it is also along time to wait.. where i am in the uk theres only one hospital on the nhs and only one ent specialist who only works 4 days a week.. and i am at the bottom of the list as i aint got a tumour or anything like that.. BUT i do suffer bad with my ears, titinus, nose bleeds, sore throughts, and alot of dizzyness... i am 27 and sounds like a 12 yr old with a cold constantly always have.. ? Everytime someone rings me i get, is your mother there? lol ? I had seizures when i was younger cus of ear infections all the time.. it is rediculous.. but i am sure you will be fine... weird diagnoses.. have you tryed searching in google? what ever the name is you got, sry forgot, lol.. and then chat next to it... be surprised who got it.. i dont know anyone..

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Old 01-14-2004, 09:55 AM   #5
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Re: vagoglossopharyngeal neuralgia

i was diagnosed with neuralgia at the er. they gave me some neurontin meds and it seemed to have done the trick. it still lingers and gets worst in the eve. i have constant ear ache/pressure behind my ear along the bone area that leads to my throat neck area down my chest and stomach. some head tingles/pressure. when the pain is real bad i feel the stabbing pain radiating to my jaw, sinus, and eye. this is all occuring on my right side. it feels as if i have a hard time swallowing. mri's, bloodtest are fine. don't know what to make of it but at least the meds give me relief (although makes me tired).i have an appointment with a neurologist. would love to hear from anyone who has similar symptoms.

 
Old 01-14-2004, 10:20 AM   #6
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Re: vagoglossopharyngeal neuralgia

smason, sorry to hear of your pain but, it sounds o so familiar. Mine is pretty much the same as you describe. Seems it is related to an enlarged tonsil on the right that has had ongoing infection and irritation of the glosso nerve. All the docs i've seen that last few years did not see this for some reason, guess it took it getting this bad before they realized. In Nov the primary doc put me on augmentin xr 1000mg 4x a day. Then I saw the 3rd neuro that said there was still infection and put me on cipro for 2 weeks. That has helped tremendously but i'm still on neurontin 600mg 2x daily. I am to see a new ent to see about getting the tonsils removed. The neuro feels sure that will take care of the nerve pain. As the tonsil rests up against the glosso nerve. With mine so irritated and inflammed it just made the nerve overly sensitive and very painful. I'm hoping this recomendation will help. Hope you don't have to go thru as many docs as i have to find out what is causing yours. keep me posted and let me know what they find. I'd rule out a ear, nose or throat thing first before getting into the expensive. simple sinus xray series 1st, then ct of head and neck, then mri. course that's just my opinion and i'm not a doc.

 
Old 03-07-2004, 12:55 AM   #7
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Re: vagoglossopharyngeal neuralgia

thank you so much for your help. glad to know i'm not alone. i've been to doctor and after doctor and still haven't found any reason for this pain. i'm still suffering and it seems like its worsening. this past week i've had headaches, sinusitis, major earache, throat pain and pain under my tongue. and its all on my right side. i've receive a mri of the brain, mri of the c-spine, cat scan of my sinus and a cat scan of my head and all show nothing except sinusitis. bloodtest are fine. negative for lupus. i also have gerd and cold patches on my arms and legs. don't know if they are related. i'm quite a mess... any idea what's going on or how to proceed?

 
Old 03-08-2004, 05:41 AM   #8
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Re: vagoglossopharyngeal neuralgia

Sorry to hear about your pain as it sounds oh so familiar. Wish there were simple answers to our pain problems, at least to as why?
I am currently recovering from a tonsillectomy. Seems the 3rd neuro I saw reconized the enlarged ulcerated right tonsil and asked if any other docs have suggested I have them removed. And of course none had but, she feels 95% sure that having this one removed and off and away from the glosso nerve will stop this agonizing pain. However, the ENT that did the surgery says there are no guarantees. If it is in fact true glossopharyngeal neuralgia, removing the tonsils will not remedy the problem. I am only a week into recovery and I'm sure I have a few more weeks to go before being able to tell anything. I never dreamed I'd be this miserable from the surgery. I just hope the doc plans on a refill for the pain meds because it just gets worse every day. Today is day 6. Surely I should start feeling better anytime now. Ughhh!!!!!!!
Here is a weblink that you should check out and read up on the glosso. This is the most definitive research I've found on the subject.
Good luck in your search for releif. My thoughts and best wishes are with you.
[url]http://www.sma.org.sg/smj/4010/articles/4010ra1.htm[/url]

 
Old 03-12-2004, 01:24 AM   #9
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Re: vagoglossopharyngeal neuralgia

I am sending good thoughts to you for a speedy recovery. You've gone through so much. It can only get better. Is this recovery process par for its course? What about a second opionion?

My pain continues. My General Practitioner thinks I need to mediate the gastritis problem first since it seems that the aches and pains I feel are somehow related indirectly. I'm on Nexium for a month and in the meantime I'm getting a neck, chest and ab ct scan. I'll let you know what the outcome is.

Take care and rest up. You're on your way to a pain-free life!

 
Old 03-15-2004, 04:00 PM   #10
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Murphy HB User
Re: vagoglossopharyngeal neuralgia

ngd59 r u still there? Yes u have a very bad condition & I too have some symptoms
& experience to share. Many ent's/neuro's don't know what u have or how to treat.
No time to think or lack of knowledge. You may get help w/ a Neurotologist however,
I received no dx until severe infection ocurred & yrs. passed with 4 surgeries. I do
think we're on another planet! Cranial nerve 5 is `Trigeminal Nerve'. Refers to 3=tri.
It msgs. 3 directions in a triangle from temple to nose to jaw, then back up (ear).
A spasm in any 1 of 3 of those branches causes symptoms in severity. Ear was full,
popping or deep pain. Then throat pulls mild to choke. Nasal tissue swells like internal
allergy yet neg. Get copies of MRI, CT reports & blood wk. You are entitled to these
& many are screaming a symptom they filed away. A `Coronal CT' is different. This
will be a `nose-in' CT to ck. for infection of sinuses. Brain MRI might show a lesion
hinting a problem they'll dismiss. Took me 8 yrs. of multiple symptoms & then a big
tantrum before I was taken serious & now doc is retired. Sounds like U have Neuralgia
but the ? is what type & what extent. Tegretol so so. Neurontin is a big promo-
campaign? Expensive & dose-up is required. Did nothing for me yet many use it.
Please write. We have alot to share.

 
Old 03-15-2004, 06:04 PM   #11
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Re: vagoglossopharyngeal neuralgia

Hi Murphy...thanks for your input. I am on day 13 of recovery from tonsillectomy. Had an enlarged right tonsil for several years and seems it became ulcerated and was possibly causing irratation to the glosso nerve and vagus nerve. The ENT does not guarantee this will stop the pain, however, the tonsil needed to come out due to the size, shape and ulceration. But he says if it is true VGN, this probally won't solve the problem. Today I had my recheck and the pathology confirmed infection but thankfully no lymphoma or other cell dsyplasia. I never had a sore, red throat or such. It was really weird. The doc says we really have to give it a few more weeks of healing before I can make an accessment of the pain. I am still very tender and the ear pain in the right ear is pretty intense, especially at night. I've been off the neurontin since the surgery and have only had the nasty hydrocodone liquid for pain. That helped the throat pain but does not touch the deep ear pain. Neurontin worked pretty well for me at 600mg. twice a day. I know about the having to dose up with neurontin but it is a relatively clean drug compared to tegretol. It does'nt have the residual build up or many side effects like tegretol. But I know I could not take tegretol and stay upright. I tried it for 3 months. It worked for the pain but I was totally vegetated and non-productive. Neurontin did not leave me feeling as drugged and kept the pain bearable.
This ENT seems very knowlegable and I am confident that he knows more than I about it and beleive me I've done some intense studying on this and other cranial nerve disorders. I searched him and the neurologist out based on their experience and knowledge of such. The ENT is #3 and the neuro is #4 I've seen for this.
I even went back to college and resumed my education in biology and molecular genetics hoping it would keep me functioning and give me more up to date knowlege and info on search tools, and it did. But, I had to lay out this last year because I was in too much pain to concentrate or study. I am hoping to improve enough this summer and feel better so I can began my internship this fall.
I posted an address in another post on here for samson. You might want to click on it and check it out. Most all the articles I read on VGN came from this guy's research. He seems to be the most knowledgeable on the subject.
Tell me more about your symptoms and what surgeries you've had for your pain. Has anything helped you feel better yet?

 
Old 03-16-2004, 04:33 PM   #12
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Re: vagoglossopharyngeal neuralgia

ngd59, The problem w/ VGN & TN etc. is they change directions over time or the
surroundings. In `92, went to ENT after rt-ear wouldn't pop from flight. He was up for
`Top Doc' award & dismissed me. Several were seen after & soon it was a cover-up
protecting colleagues or just lacked knowledge or empathy. `94 the pain shot to my
temple from my ear. Massive head prssr & severe under-eye prssr. All refused CT's.
MRI from Neuro's = neg. No fever so no infection, wrong! Int. MD thought I was in
gd. hands w/ Neurotologist he sent me to. Wrong. He said I had a mental problem &
stress was causing symptoms. Then bloodwk showed up w/ Hi-ANA suggesting auto-
immune dx & focus shifted off head to fibomyalgia, rashes, aches. 8 yrs & 16 docs, I
bot MD bks & rented disks . In `99, my thoughts were reversed. Dyslexia in words
& +/- switched. Dbl-vision & stabbing temple pain. Went to Int.MD who was still
trying to figure me. I had closed my Bs. & told him I was going to die. He had thought
it was TN. Told him I needed a Coronal CT. Shocked when he heard 0 done. I had 3
ear-tubes earlier by ENT's & his reports all mentioned clear CT's. Cover-up! He sent
me to lab & called me that night. A `rare' tumor filled my entire maxillary & infection
had melted bone @ temple extending from ear, behind eye, affecting nerves to brain.
Sent priority to a surgeon. `What you see isn't'! I saw the films! 2nd surgeon said
same. Weeks passed & face swelled huge. I insisted on endoscopy surgery for some
pathology atleast. Big oops! Sent to special surgeon & 4th was a Caldwell-luc proc.
Bone was drilled, stripped, polished. Cancer cells had not quite made it to brain yet.
I survived w/ lifetime fo/up. When some ENT's retired I requested files. 1st Top Dr.
notes appeared. `Middle Ear Effusion' w/ fluid & (vent) w/ culture. He got his award &
I got this. Nerve damage & inflammation now offers new things. I believe I have TN,
w/ occipital neuralgia w/ palatal myoclonus. PM is a jerking in the throat that causes
choking spasms & rapid ear-popping. This triggers neuralgias. No Dr. has heard of it.
Won't read my info. Xanax helps sedate it + Ambien for sleep. I'm almost out & ready
to panic. I have no doc & the major US clinics don't treat it. Germany & India use
botox. I now have essential tremors. VGN can evolve into severe problems. Cascade-
affect. If you sedate the nerves & control inflammation, you get relief. Nerves stopped
sending & autonomic areas shut dwn. Or if over firing, spasm strts pain. Anxiety drugs
work but they're afraid of abuse & time to monitor you. My story is extreme, yet goes
on alot. Weather-shift makes me feel like I have ADD & ear-fluid bubbles noise like a
bad allergy. Histamines do zip. You have a miserable condition I relate to. It's a
neuro condition also involving msgs from the C-spine. You know all this though. Make
sure you get copies! What state is your ENT in? He's a keeper if he dx VGN. Any
symptoms match? Feel like I just wrote `War & Peace'.

 
Old 03-17-2004, 06:40 AM   #13
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Re: vagoglossopharyngeal neuralgia

Murphy...you poor soul. You really do have the extreme case here. I hate that you have had to suffer so at the hands of the great and ignorant. We have to remember that medicine, even at it's best and most high tech, is not an exact science and docs are not the almighty. However, we pay them enough, they should be!!! My situation has not been as harrowing as yours, yet it has been very similar. The cranial nerves are a very complex and a close talking bunch. It is hard to tell which the pain originates from but, it is very obvious where all the pain messages surface. I have bought anatomical charts of the nerves and books and studied all I could understand. Emedicine.com is cool because you can right click on words and a handy dandy glossary pops up and gives you a definition. I've found some other online med glossaries that are very good too. Sometimes even with that it is still difficult to understand and follow all. I just know that the glosso and vagus nerves are the main affected ones in my case and that's enough! I have had the MRI's of head, neck and abdomen, CT's of the same areas and ultrasounds too. Nothing, except for a slight buldge at the C5 vertebra and that does cause pain thru the neck and shoulder and I also have the carpal tunnel crap starting on the right side. Seems all my ailments are right-sided. And like you, fibromyalgia was one of the first diagnosis from the first neuro I saw. I got really upset with him and argued his opinion and he basically told me that he was the one with 12yrs. of education and degrees, not me. I just knew that was not right either. I got to the point that I was finally willing to try the Xanax the primary doc keep wanting to give me. He didn't know what else to do. That worked for keeping me from totally panicking but I was very careful with it for fear of becoming too dependant on it. Then the docs get worried and don't want to give you any more. I have a few left I keep on hand just in case the throat really starts to spasm. That was the scariest part besides the misery of the constant throbbing pain in the ear and throat and the vibrating feeling down into my gut. I can really understand the fact that the people that suffer most severely from facial neuralgias wish to or try to commit suicide. My life has changed dramatically in the last 4-5 years as a result of this pain. I do not talk to anyone anymore that I don't have to talk to. It's hard not to whine about my misery and I know that no one wants to hear it. They can't help anyway. I'm just not good company or any fun any more. I really had big dreams and plans of all the things I'd like to do when I reached this age and point in my life. I'm still trying to be patient and hopeful that this will get better and I'll be able to enjoy life. My husband took off work today to go on a school field trip with our daughter. I used to do all that stuff with the kids and volenteer for school functions but, not these days. I do good to make their sports games. I know that everyone thinks I'm a whimp cuz I can't handle the pain. My husband has chronic back pain and injuries he suffers from but he does'nt let it stop him very often. He will not even take Tylenol for pain. He refuses all pain meds because he does'nt want to become a druggie. And does'nt want the surgery to try and help him, I don't blame him, cuz it's a 50/50 thing, might help, might make him worse. Well you can imagine how this makes me feel and what I look like to the inlaws and his friends. I just avoid them all and try not to imagine what they must say or think. It does'nt matter anyway.
Sorry, I've whined too much, I know. It's not as bad as it could be and I am thankful for that. I figure if it gets really bad enough that I want to die, I'll just become a poppy farmer and grow my own pain meds! Ha!

 
Old 03-17-2004, 04:35 PM   #14
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Re: vagoglossopharyngeal neuralgia

ngd, Thanks for writing. Sorry to say, it's gd. to have found someone to share this
Island. No one can understand us unless they've been inside this problem. I too have
thought of all your comments of life & being a `crop-farmer'! I'm so glad I put in alot
miles before this happened. I was a real athlete & loved outdoors/travel. Now I'm hm
& have to be driven. Brain-fog from swelling or fear of pain attack, keeps me off the
road & others safe. It's also nice to find someone of knowledge & not having to
detail terms. Do you know of any cause of your VGN? Trauma, infection, stress?
Usually, if no injury, then it might be chronic infection/inflammation for spasm. I also
have C5 cyst + dwn to T1. Always had gd posture. I found many posts that when
hd-pain, neck, or migraine was present, C5-6 was a problem. I think it has to do w/
cradling our heads in our hands from aching & praying for relief. That hunch-over can
cause nerve impingement. I use traction, collar, massager, when fingers numb or pain
zings. I use a hot/cold gel pk dropped in a wet sock & micro'd for hd/temple/ear pain.
It steams deep & quick grab. Sometimes, ice-pk on back of neck will freeze pain. I
also found relief from OTC analgesics. I use 2 Vanquish containing aspirin, acetamen.,
magnesium. It gets me off Lortab. The weather-shift is the biggy. I can predict a
storm even if asleep. I have no support system either. Sometimes glad abt that too.
You don't want to talk w/ an attack. Yet you wish they'd `get it' while you're suffer-
ing. They think you have a bad hdache! The pulling in the throat may be yanking
on E-tube causing inflammation of the inner ear. Have you ever noticed that laying
dwn causes more events & walking-it-off lessons it? I jump up frm sound sleep &
walk thru hse & spasms stop. Very strange but think it's gravity. Sitting too long at
the computer causes severe hd-prssr. (Bad posture) frm leaning. Like now. Need to
take a break. Wish we could figure out how to talk w/o jamming up this board but not allowed off-line contact. Stay in touch. I do understand. Happy St. Patty's Day.

 
Old 04-03-2004, 07:24 PM   #15
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Re: vagoglossopharyngeal neuralgia

Hey everyone. Recently, I have been expieriancing a pain with similar symptoms to the ones you guys are talking about. The pain I feel is in the front of the right side of my neck. It feels kinda like a needle stabbing my throat and I feel it every 5-15 seconds. I feel other abnormal stuff to stretching from the right side of my neck to the right side of my ear.

I know the obvious way to find out is - "See a doctor!" However, i'm a extremely poor college student who can barely afford rent. So if i'm going to dish out money that I don't have to see a doctor, I was hoping I can find on the internet if its just a temporary condition. Sad thing is every "Google Search" leads me to "vagoglossopharyngeal neuralgia" or just plain "neuralgia".

Anyways - I was just hoping to get some opinions if this (symptoms I mentioned above) sounds like "vagoglossopharyngeal neuralgia". I wish you guys the best of luck, especially if your dealing with what i'm dealing. Worst part is, I got toothaches and wisdom teeth that haven't been pulled out. I learned to deal with the toothaches and wisdom teeth.. but this new pain is 10x more annoying.

Thanks a lot.
Lans

 
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