There is a summary article in the Singapore Medical Journal 1999; Vol 40 (10 ) that discusses pain radiation to atypical sites for the Glossopharyngeal nerve .
Dear Portland,
Yes, for me too the upper back molar tooth (last 2) pains every now and than and I also feel swelling around that area. First it use to bother me a lot but gradually I'm getting use to it.
I got the GNP in July 2012. Its been 16 months. The pain is on and off during the day. Its a weird feeling. 100s of visit to various hospitals - ENT, Dentist, Neuro. Now learning to live with it.
Take care!!!!!!!!1
Hi Preety, if you get swelling with the pain it cannot be from cranial nerve neuralgia as it does not cause swelling. Trigeminal neuralgia can cause pain in teeth but not GPN. The nerve does not go to the teeth.
However, regardless no neuralgia causes areas to swell, rather inflammation of the nerve can cause neuropathic pain. But nerves in the teeth are not directly associated with the cranial nerves. You can get a sensation that something may be swollen where neuralgia strikes as it can alter the way the body percieves something. But it does not cause actual swelling.
So I would suggest if your gums are swollen to go see a dentist again while they're swollen as it may be gingivitis, or you may have a problem with the nerve in those teeth as you can get nerve pain that way.
Who diagnosed you with GPN? What other pain do you get?
Thanks, had a read of this. Quite a good article. I read a lot of journal articles on this and a few other conditions.
Former Medica said:
There is a summary article in the Singapore Medical Journal 1999; Vol 40 (10 ) that discusses pain radiation to atypical sites for the Glossopharyngeal nerve .
Dear Kaz,
Thank you for your response and a wonderful article. I first experienced the pain on 15th July 2012 in my tonsil area (right side only). It was like someone poking needles - sharp pain. It was continuous but the degree of pain fluctuating to severe to less. Than the pain was in lower jaw in Mandibular and middle of my external ear and lower tongue (only right side). I took Neurontin 400mg for 4 months which helped me and since Feb 2013 I stopped all the medicines. Again lately I feel the pain in my lower (back) tongue and on n off in the middle of centre of the external ear.
I did BRAIN MRI ( 2 times). It was found all normal. I've visited hospitals every week as I was so worried and wanted to find out what was going wrong in my mouth. ENT, NEUROLOGIST, DENTIST (many of them) but none could find anything. Drs. don't know what is wrong, it is only the symptoms gives the doubt of GNP.
First was very panic and use to spend whole day in reading and research on net what this could be? but that drove me crazy worrying more by reading more each day. Everyday I was going to different hospital and Dr. to see if someone can conclude what is wrong and why I'm having pain in my tongue?????? Now, I've decided not to go on net and do my own research, as lots of medical terms are difficult to understand.
Kaz, what do you think this could be? all my MRI and other medical reports are normal. Can you suggest any test to find out? for me my tongue (lower back part of the tongue and centre of the ear externally)
I will appreciate your response.
Kaz said:
Hi Preety, if you get swelling with the pain it cannot be from cranial nerve neuralgia as it does not cause swelling. Trigeminal neuralgia can cause pain in teeth but not GPN. The nerve does not go to the teeth.
However, regardless no neuralgia causes areas to swell, rather inflammation of the nerve can cause neuropathic pain. But nerves in the teeth are not directly associated with the cranial nerves. You can get a sensation that something may be swollen where neuralgia strikes as it can alter the way the body percieves something. But it does not cause actual swelling.
So I would suggest if your gums are swollen to go see a dentist again while they're swollen as it may be gingivitis, or you may have a problem with the nerve in those teeth as you can get nerve pain that way.
Who diagnosed you with GPN? What other pain do you get?
I have atypical GN and TN from MS. I have had this for 20 years and I live with it ,kayak, snow shoe and work.......... deal with it. TN,GN come early with MS I have read.
Anyone have MS with it?
Thanks.
:)
Hi Preety, Actually the article was posted by someone else - Forma Medica ;-)
The tonsils sounds very GPN. The ear pain as well. With GPN the pain can be referred even to the mastoid bone at the back of the ear. When you say lower tongue, which area of the tongue. Front or base of the tongue? If you were to put your finger in and feel your tongue, is it were the lumps (tastebuds) are smaller at the front or the base of the tongue where the bumps feel a bit bigger?
The tooth pain I think is separate issue but you haven't mentioned that with this latest attack, although possible referred pain but generally linked to TN, but TN does not cause soft pallate pain.
With GPN the area is very distinct, and where you have stated does fit that and it can be burning sensation, tinglling or stabbing, or sometimes can just feel like there's an irritating lump.
Ok you mentioned brain MRI, I assume this was just looking for lesions for MS or signs of other autoimmune diseases? A normal brain MRI won't show the styloid processors. I would ask your GP to send you for a CT scan to look specifically at your styloid processors (Eagles Syndrom) as the next step, as enlongated processor is the most common cause of GPN. A lot of GP's have never heard of Eagles Syndrome so you probably will need to take a print out of information with you. Once you rule that in or out then depends on the next step. But that would be my next step.
Print these out and take to your GP.
http://emedicine.medscape.com/article/1447247-overview
http://www.ncbi.nlm.nih.gov/pubmed/19284231
If that comes back negative for Eagles syndrome, then I would ask for a CT or MRI scan with contrast to look to see if you have anything that may be causing a compression - small tumour or artery pushing on the nerve. That would be step 2. If nothing comes up from that you may want to see an immunologist and have some other autoimmune tests done eg: Sjogrens Syndrome as that can also cause GPN, as can diabetes type I and other autoimmune diseases.
You could ask your GP to run some blood tests for you to check for inflammation in your body and signs of autoimmune diseases:
ANA, DNA, RF, CRP, ELISA, SSA, SSB, ESR.
You can probably rule out MS as they would have told you if you had any lesions in the brain or on the brain stem and/or if the brain was inflammed. Do you suffer from any other symptoms that you have never had before - extreme dry eyes, dry throat, dry skin or other things you never had before? Have you had any blood tests at all?
Yes, searching on the net can actually make someone think they have something they don't, or one can sometimes find something they actually have. But it tends to end up frightening people more. I can absolutely understand completely being frightened and searching to find out what this is as ANY neuralgic pain is awful and often can be misdiagnosed simply because it is something that isn't actually seen.
When you saw your ENT person, did they spray your throat with local anaesthetic and then gently touch your throat with a cotton pad in the tonsil area where you feel the pain? If they haven't done this, it is good to get it done while you are actually going through a period of attack as they can then see if it is a trigger and it is one of the quickest ways to get a diagnosis. If you're not having an attack (it's in remission for a period of time) then when they test this area it may not trigger it. So that is another option in order to try and get a diagnosis. However, you need to find the cause.
One thing to try is to purchase a vial of vicsous xylocaine. I used this on my last attack in order to allow me to eat. It so far, besides acupuncture, is the only thing that offers some sort of relief. I bought a small syringe and would squirt a small amount as far back as I could to the right side (mine is also right sided) of the throat, and then allow a small amount to spread through my mouth. Really deadens everything. It doesn't stop ear pain, but it helps to just give some relief so one can eat. Although you do need to wait half hour from memory to eat or drink after having it. Very important to only try small amounts first and follow instructions with it if you do try this.
Hey Funtsie, I think we've discussed this before. I have MS and have GPN and TN. It is rare to have it with MS but one can. We are just rarities ;-)
Yeah, I guess we have had this discussion before. Do you see a neurologist? I am well managed and see a Family Practice but she has never treated this before and is not too much of a comfort.
Kaz said:
Hey Funtsie, I think we've discussed this before. I have MS and have GPN and TN. It is rare to have it with MS but one can. We are just rarities ;-)
Gosh, I have just found this discussion. It is wonderful as its not long since I was diagnosed with GN and all I have been told my the Doctors is that normally there is no reason for it ( eg it affects healthy older persons which I am so that is it),or it could be MS or a tumour which is my case they have not found.
I had no idea whatsoever that so many other things could casue it.
I had an autoimmune disease some years ago ,which I was told was called lichenplainus ( could have spelt the incorrectly) which was essentially a rash over my arms and legs. It was treated with steroids, cleared up then came briefly back a couple of years ago and again cleared as a result of taking steroid medication. Could my TN be in any way connected to that as you talk about being checked for autoimmune disease and I wondered how an autoimmune disease could case it. I would be so grateful for any information you could give me on this please Kaz. Thank you
Yes, Funtsie I am under an MS specialist neurologist. See him every 6 months and MRI's every year. Speak to him inbetween if there are any issues or see him if the neuralgia plays up. Just went through a nasty flare which started in March after contracting the flu. The flu took me months to get over and it triggered an MS attack which triggered the damn neuralgia - worse attack yet pain wise. Once again same pattern every 3-5 minutes with no reprieve, other waves triggered if swallowing etc., over hundreds of attacks daily. Just when I thought after last time this could not possibly get any worse, it did. Three rounds of heavy duty steroids for weeks on end and finally it stopped in around September.
I am not a huge fan of steroids (don't know if you've ever had to take them oral or IV with the MS?) as they have nasty side effects short term and long term. However, if the neuralgia coincides with an MS attack it is imperative to get into the steroids very quickly. I probably would have only needed maybe one lot except my GP didn't order a stronger enough dose or long enough - the joys of the being treated for things they don't really understand. She has learnt now through this experience that I know what I need.
GP's tend to order a 3-5 day dose of steroids of 50mg daily. However, IV 1,000-1,500mg daily for 3 days is better if you can tolerate it. If not, oral steroids prednisone 50mg x 5 days; 40mg x 4 days; 30mg x 3 days; 20mg x 2 days; 10 mg x 1 day; 5mg x 1 day. That helped settle mine down and the other MS symptoms, but as mentioned had 3 rounds of them during this period of time, however, the first round was not strong enough , or long enough as my GP was very reluctant to let me take more, and my neuro was away so I couldn't get him to talk to my GP. So the beast started to settle just a little and then wham!! came back with vengeance.
If your neuralgia just niggles for a few days but you know it is a sign that a big attack is looming a dose of 50mg x 3 days would probably be well and truly enough to knock in on the head. Talk to your GP about trying that. However, do bear in mind that one round of steroids per year is usually the acceptable amount because of the nasty things it can do. But taking calcium tablets while on steroids and for a few weeks to months, depending on the dose and length on them, can help to counteract the bone leaching side which leads to osteoporosis. Plus using them too often can lead to Cushing Syndrome. But it is sometimes necessary to use them if other MS symptoms arise at the same time.
The joys of living with GPN and MS, plus Sjogrens. I have just been diagnosed with yet another rare disorder which explains a lot of things the neuro could not work out. It comes with its own bag of not so nice goodies... Seeing another neurologist who specialises in this area next week and having more tests. Had a high res CT a few weeks ago but now need a 3D CT scan done to evaluate even further.
Hi user idsandy, I have to go out now but will be online later tonight. Please let me know which diseases if any, they tested you for blood wise. Also what tests they did for MS.
Lichen planus itself is still yet to be identifed as an autoimmune disease - they think it can be on its own but no conclusive evidence is what I understand. However, it does occur on its own at times in middle aged women predominantly. That makes me wonder whether hormones may play a role somehow.
It also can occur as part of other autoimmune diseases too, which some are linked to TN and GPN. Example: Sjogrens Syndrome can cause both types of neuralgia and causes skin issues of which lichen planus is one that can occur. Sjogrens has a primary and a secondary syndrome pattern.
Do you suffer from dry eyes, dry mouth, dry skin etc? Also how long ago, if they did an MRI for MS, was that? Do you have any other symptoms that you know are not normal for you?
Please know that I am not a doctor. I merely know alot about the conditions I have as I have lived with them a long time, plus now I study health science so I do alot of research for uni and out of interest.
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Dear Kaz,
Thanks for such wonderful response.
It was 15th July 2012 when the pain in my tonsil area was felt first and after a week or so, I remember one afternoon I felt as if a sharp hair (horizontal) in my throat for couple of seconds, and from than on the problem geared. I've never felt anything like this ever in my life, I don't know how to explain.
Base of the tongue, where the bumps feel higher n bigger, near and behind the Vallate Papillae.
And I’ve already done CT or MRI scan with contrast, which again was all normal.
Some blood tests were done (full blood counts) – all normal.
The pain in the base of the tongue is like tickling for 30-45 seconds, 1-2 times a day/once a week.
The ear pain, as I told you is in centre of the external part. Very short and tickling for 10-15 seconds.
ENTs, NEUROLOGISTs, DENTISTs. All of them, have no answer. Last week I went to my ENT and he says stop looking inside your mouth, everything is normal!!! so sometimes when it pains I try to ignore, forget it. Like to go for long walks, watch TV, do my prayers and have a drink and try to go to sleep........don't want to read on net to increase my worries...
I will appreciate your comments, my English is not so good so just ignore....
You're lucky the pain only comes that often. When my bad attacks come they are 24/7 for many months and the pain is extreme and comes ervery 3-5 minutes and last between a few seconds to over a minute. The pain comes on even more often if I swallow etc. I get niggling at times which is every now and then a few short stabs of pain. I lose many kilos of weight and end up gravely ill. Last attack started March and didn't end completely till Oct, and that pain was relentless.
I had the pain for quite some time before being diagnosed. As mentioned one can only diagnose this if the ENT actually touches the area and the pain triggers, so best to do it when your having days when it occurs. I will find a link to some information for you to take and ask them to do the procedure.
============================================================================
This is from the Merck Manual which is a well respected medical manual. This is the test the ENT needs to do.
In glossopharyngeal neuralgia, swallowing or touching the tonsils with an applicator tends to precipitate pain, and applying lidocaine to the throat temporarily eliminates spontaneous or evoked pain.
============================================================================
CT scans and MRI's are targeted to specific areas. So if they were just looking at your brain, they will NOT see the styloid processors. It is a specific CT scan on that area looking for Eagles syndrome. When they did your CT and MRI what were they looking for - Brain lesions? With Eagles CT no dye is required as it is looking purely at those bones.
As for blood tests full blood count will not pick up autoimmune diseases. It's just looking at your white and red cell counts to see if there are signs of infection, or signs of aneamia etc.Plus it look at your platelets. But it will not indicate if you have any sort of autoimmune disease. You need specific tests for that.
I would strongly recommend you ask your doctor to run these tests on you. These are the best baseline tests for autoimmune diseases.
ANA, DNA, RF, CRP, ELISA, SSA, SSB, ESR.
I also suggest you try a mouth spray like Difflam Forte and see if that gives you relief as your pain is intermittent.
Please also try not to look at the internet further as you will only create yourself more stress, and stress may be a trigger for you. All you can do at this stage is rule out possible causes, get a CT to check your styloid processors looking for Eagles syndrome. Have the blood tests done. You've already had brain MRI and CT, so obviously no brain lesions. You would need a MRA or CT angiogram to check for obstruction of arteries.
Plus you NEED your ENT person (go see another one) to do the touch test as that is best way to diagnose this.
Given your condition is not chronic (I do not mean any disrespect here as the pain is bad no matter how often), but I mean more as in every day, or 24/7, there would be little point in trying antiepileptics (they come with nasty side effects for some) although you could discuss it as an option with your doctor. You just need to weigh up the benefits and risks.
The other thing you could discuss with your doctor is low dose antidepressants like Amitriptyline or nortriptyline. Both antiepileptics and low dose antidepressants are thought to block the messaging system, or dampen it so that the pain is not so great.
These work well for some, however, over time the anti-epileptic medications tend to stop working so well. Only you can decide how badly this is impacting on your life and whether you want to try medication.
At the moment it sounds like the stress of not truly knowing what is causing is actually more of a problem for you. This is why I suggest you see another ENT person and ask for the to do the cotton touch test in the trigger region so that you can at least get a diagnosis.
Then once you have one you can work on finding the cause. Sometimes people never find the cause, but as mentioned before Eagles is probably the most common cause, followed by blood vessel compressions. Then autoimmune diseases be the least cause, but some people never ever know what causes theirs.
Don't apologise about your English as I can understand it fine :-)
I checked into all this after a friend sent me the link asking if this was real as they were panicking because they had root canal.
Sorry Icepick but this is a load of absolute rubbish!! This is nothing more than a marketing scare mongering campaign. There are NO scientific studies that even remotely indicate what this ONE man is saying who is in collaboration with others selling their wares. If you click into any link you will find you need to BUY their books.
Even their reference list is a complete joke! It's people like this man that cause people on the internet searching for answers to panic! It should not be allowed. If this was legitimate it would have references to actual scientific data showing people the rate of incidence! Instead it links back to their own merchandise.
BUT anyone suffering from unexplained pain needs to try to find the source of their pain. But this sort of stuff that gets circulated around the net is just rubbish...
Sorry do not mean to offend in any way, just one needs to look for certain details to check the validity of these sorts of claims. If they are genuine there would be a PROPER reference list with links to actual studies and other data that can be checked and verified. None of this occurs with these claims. It just refers basically to each person involved selling their books. It's simply a money spinner praying on the vulnerable!!
One has to be very careful about snake poison peddlers on the internet. They prey on the vulnerable knowing they are desperate to find answers.
There's another piece of rubbish floating about at the moment that noodles contain WAX causing all sorts of health issues - another scare campaign which is untrue!!
KAZ, I took down the link. But have a friend who had an infection in a root canal tooth that for 9 months her dentist said was nothing to worry about. She now has a chronic sinus infection. So I would like to see or find a better study. GPN cause ? But inflammation is your body trying to fight something.
Glad you took that link down. I truly hate seeing those scare campaigns out there that have absolutely no scientific data to back up sweeping claims like that ;-)
There's autoimmune inflammation where the body's T cells are thinking there is an enemy and it attacks itself, or there are bacterial or viral infections. Sinus infection may not have any link to the root canal, or it may be caused from a bacterial infection.
Was your friends root canal upper jaw? Was it perfomed by an endodontist? Do they have GN now, or they think they have?
Sinus infections can occur. Does she have a fistula (like a pimple looking thing on the gum near it that may come and go?)
I am assuming she was put on antibiotics? Truthfully she should be seeking out another opinion from an endodontist. If someone has recurrent issues and they're not happy about what they're being told they really should consider making an appointment with another professional and seek advice from them. She should also see an ENT professional. Had she had CT scan of the sinuses done?
Are you looking for information about causes for GPN?
Icepick, here is a very recent systematic review on GPN. It's very informative.
Funtsie, here is a very recent article about all neuralgias and MS which you may well be interested in. GPN and TN are discussed.
Thanks Kaz, this was the best article I have ever seen on these issues. You give a lot of wonderful information to this forum. I hope you get some sleep, you seem to be up all hours. We MS'ers are not the best of sleepers.
:)
Kaz said:
Funtsie, here is a very recent article about all neuralgias and MS which you may well be interested in. GPN and TN are discussed.