I was diagnosed with GPN about two months ago and have been taking carbamazepine for about 6 weeks now and seems to help a little some days but still have days where tramadol is the only thing that works. For the last month I have had this feeling of “something” in my throat that I cannot swallow. It’s right at the base of my tongue where my epiglottis is. Almost off of my GPN pain is in my ears, I so have it bilateral. I was wondering if this is something different, or has anyone else had this too? I went to an ENT when if first started and looked at me for what seems a second and said “acid reflux” but I never have heartburn or any symptom of it. Idk, but sometimes I gag the feeling is so bad and when I talk sometimes it sounds like someone has their hands around my throat.
Have you ever read anything about Geniculate Neuralgia? Please discuss the possibility with your dr. It is extremely rare. I have had Geniculate Neuralgia since 2001 and met one other person that has the same diagnosis.Your symptoms are common with GN. If you have bilateral Ear Pain I will guarantee it's GN. Is it a Deep pain or Ice Pick Stabbing Pain?
http://en.wikipedia.org/wiki/Geniculate_ganglionitis
http://www.ncbi.nlm.nih.gov/pubmed/9233495 My NS Dr. Peter Jannetta was one of the two NS's that did this study.
I have had severe GPN for a very long time and manage it with acupuncture, however I recently had a very big MS attack (I have multiple sclerosis and GPN is a very rare symptom of this) and it flared the worse I have ever experienced. Four months in total of over 100 severe attacks every single day with frequency of lasting for a few seconds to minutes. I actually worked out that after long ones I can manage to eat and drink as it takes a little bit for the brain to recover and register that I am eating or drinking before the next occurance. Basically they come every 3-5 minutes - just awful.
But getting back to your question, GPN can and does affect the throat as well. It also affects part of the tongue. My very first signs of GPN was a feeling like I had a lump in my throat which would come and go. During attacks the pain can also move around from the ear, to the tongue, to the throat and sometimes altogether. During my attacks I cannot even talk because talking triggers waves of massive attacks. So yes, it can affect your throat - the pharyngeal part of the throat.
Hope this helps to know that someone else also experiences in their throat.
P.S. I had not luck with tegretol, or other meds. This last attack I was on Fentynal, pethidine, tramal, valium, panadol osteo and nothing stopped the pain. All it need was bomb me a little in order to be able to get some rest as the pain is constant 24/7. I also had three rounds of heavy dosage of prednisone, the last round lasting for a few weeks. Prednisone is a steroid and comes with terrible side effects but I had no choice but to do it or I wouldn't be here today!!! I now have to get back into regular acupuncture as that helps to control GPN and I had ceased having it for a number of months prior to attack. So back to maintainence treatments even now I feel GPN free...
P.S.S I actually was told this time round that I have vago glossopharyngeal neuralgia :-( So I have two cranial nerves affected.
I have it bilaterally. Are you sure you do not have M.S.? A lot of the bilateral is from M.S. Acid refulx does not hit your ears.
I take Neurontin, and it works for me, have had this 18 years.
Good luck.
:)
I am going back to the doc today to see about getting some more answers, I went out to State softball tournament with my boyfriend this weekend and there was a slight breeze in the air. I almost couldn't stand it, any type of small wind that blows through my ear with set off a pain attack. I had to leave several times to sit in the car to get out of the breeze and I felt so bad that I couldnt hardly watch him play.
I am going to check with my doctor about eagle syndrome too, I have done some research and it says eagle syndrome can cause GPN and a feeling of a lump in the throat. I would have thought that the MRI or the CT scan of my brain would have caught that, but maybe since they weren't looking for that, they missed it. Its just a possibility and something I will ask him about.
I am not sure that I dont have MS but neurologist said my MRI of my brain was clear, so I assume he didnt see anything that would make him think MS.
With the ears: wear a hat. With the lips, a scarf works, but then I live up north and hats and scarfs are always fashionable.
Do not let this define you or you will go bonkers.
:)
Judy
Yes, your neurologist would have mentioned if they thought you had MS as your brain MRI would have shown up with what they call plagues (lesions). Also if MS was suspected you'd be experiencing either weakness of legs and/or arms, or difficulty walking or other sensory issues like optic neuritis etc., or symptoms that come and go randomly and you haven't mentioned any other issues other than this GPN.
In regards to Eagle syndrome a CT scan is better than an MRI scan. It all depends on the location the original CT scan was loking at. It could be likely that they didn't scan the required area which is looking at the styloid processes and measuring them.
Judy's tip on a scarf is good. I cannot go out in the cold without one.
Kaz, you are good. How long have you had this? I have had TN 20 years, GN 18 and just last year down my throat, previously in tongue and ears bilaterally. RR MS. I have had a benign course, gabapentin is all I take P.R.N., but it works. I am very active, still work and tell no one! After awhile you learn what works for you. What I miss from my physician is encouragement. I encourage myself every day. I think anyone with a chronic anything needs encouragement. Maybe thats why I am here. Trigemnial joke, do you know it? Patient goes to dentist who says: " how are your teeth as if you would know ha ha!" I tell my dentist that or "each and every one of them have hurt, sometime this year." I do not think there is any GN humor.
Funtsie
Kaz said:
Yes, your neurologist would have mentioned if they thought you had MS as your brain MRI would have shown up with what they call plagues (lesions). Also if MS was suspected you'd be experiencing either weakness of legs and/or arms, or difficulty walking or other sensory issues like optic neuritis etc., or symptoms that come and go randomly and you haven't mentioned any other issues other than this GPN.
In regards to Eagle syndrome a CT scan is better than an MRI scan. It all depends on the location the original CT scan was loking at. It could be likely that they didn't scan the required area which is looking at the styloid processes and measuring them.
Judy's tip on a scarf is good. I cannot go out in the cold without one.
Hi Judy, I have had GN badly on and off for a very long time now but only diagnosed approx. 6 years ago. ENT guy I used to see used to tell me it was in my head - hello!!! All because he couldn't see anything... He never made the connection to MS even though he knew I had MS. It didn't get diagnosed until it was really severe! In those early days it would feel like a constant lump in the throat on and off, or slight burning. The massive electric shocks and burning didn't appear until 1999 but even then no-one knew what it was. It wasn't until I started getting the continual bouts of 3-5 minutes 24/7 and became gravely ill that people panicked. My bouts are so severe that when I have long bursts of a few minutes my tongue actually feels like it is bleeding and smoking. It is awful.
I've had bouts of TN on and off also for a very long time but it isn't anywhere near as bad as GN. I also have RRMS. I can't take any of the anti epilpetics they prescribe for neuralgia as I have rare adverse reactions. I also have Sjogrens Sydnrome and it appears that has made my body highly sensitive to lots of meds. I tried Copaxone many years ago but reacted even to that, so I take the natural road and to be honest fair a lot better. Good diet, exercise when I can (exhaustion is a problem for me), good attititude and also to be able to blow off steam when needed.
You're lucky you have benign course. How long have you had MS? I just had another major attack (still coming out of it now) the last nearly 5 months. My big attacks take months to ride through. Had three rounds of heavy steroids and the last lot finally settled the GN but still having other MS symptoms. You're the first other MSer I have met that has GN - we are rare unique creatures ;-)
No, I haven't heard any GN humour, although it is far more gruesome than TN in my opinion. The only humour I find is when I win and it knicks off back to its cave ;-) Mine attacks are extremely severe. Attacks every 3-5 minutes lasting from seconds to minutes continually day in/ day out for months on end. I become totally bedridden, lose so much weight as I can only take in fluids and even that triggers massive waves of pain.
Thankfully those biggens don't happen regularly as I usually keep it all at bay using acupuncture, but stupid me had stopped my acupuncture as I was feeling ok and after a while BANG it hits me. I know the acupuncture works as two times now I have stopped and GN arises, if I keep the acupuncture up and if I feel a niggle I increase visits, the GN stays in its cave. The acupuncture also helps manage my MS symptoms better as well. Sadly I can no longer work full time and am no where near as active because of the MS. It's the gift that just keeps on giving... But I continue on and make the most of what I can do. Modify things so I can achieve my goals etc. Not easy at times, but I am not a person who gives in or up! I think that truly is the only reason I am still here...
I will add the general acupuncture points here as you may all want to try them. These are the general points I use. I do add on other points if needed depending on my presenting symptoms. Eg., if it is deep in my ear I will add an extra point for that. Any good acupuncturist will know what extra points to add. These points here are excellent to use continually as maintenance treatment as well. Once GPN is under control it is a very good idea to continue treatment say once a month or every 6 weeks, but don't leave it longer than that. I personally have learnt the hard way... So aim for monthly maintenance once under control. Then if you get a slight niggle, go and get treatment straight away.
If you are currently having an attack and want to use acupuncture to get in under control, it will take a few sessions as a rule. You need to have it done every 2-3 days for a few sessions. You should start noticing a difference quite quickly. Once under control continue with acupuncture with 2 sessions a week for a little while, then drop to 1, then gradually take it to once a fortnight. You will get to work out what works for you to keep the niggles under control. We have to remember this is a chronic condition, therefore it will take a little bit of time to get under control so be patient.
You can also google these points on ying yang house for location and try using acupressure inbetween acupuncture appointments. There also are special tools you can buy for acupressure. Points should be held for around 30 seconds, but no more than one minute at a time. http://www.yinyanghouse.com/acupuncturepoints/locations_theory_and_clinical_applications
Acupuncture is far better than pumping the body full of drugs that affect the liver terribly and come with other side effects. Over a 1/4 of diseases these days are caused directly from taking a medication ( Iatrogenic ) for another condition. So while you are being treated for one condition you may be creating a whole new disease for yourself. My personal view is I only take things if it is absolutely essential for my well-being, and only stay on them for the duration required.
Acupuncture points
I will give both English version and Chinese. Where I place an * means add moxa (moxibustion, special herb - mugwort - used for heating).
GB 34 -Yang Ling Quan
ST 36 - Zusanli
* REN 6 - Qi HAi
REN 17 - Tanzhong
* SP 6 - Sanyinjiao
GB 20 - Feng Chi (highly recommend this point)
DU 20 - Baihui
LIV 3 - Taichong (This point and the one below form the Four gates which is great for pain)
LI 4 - Hegu (part of four gates)
* KID 3 - Taixi (good for throat pain)
Hi Kaz, You are the only one I also have found who has this gruesome stuff.I have had the MS for about 20 years the TN about 20 and the GN about 18. I saw a neurologist from Mayo Clinic last April and he said I was lucky and he predicted it would not progress too much further. I was diagnosed quickly by my Family practice and neuroogist initially. I am a RN.
We moved and I have a new Family Practice, but I tell her very little as she is young and said she has had no one with GN, and her TN's have dementia. I talk with God and my husband.I did like the neurologist I saw, he was bright, encourageing and offered oprions should it progress. So he is a soft place to land should I need him.
Like you with the MS I believe if you can "just go home and live with it'. I like to sleep a lot, but have it down to 9 to 11 hours a night. Sleep is very helpful to me. That and gabapentin. And God.
I am glad accupuncture helps you. I will keep that in mind should it progress. Do you have speech issues with the MS? Sometimes I cannot control the volume of my voice and I YELL! And sometimes I will say something like "Christmas, desk grass, hi, "when I want to say something like "it is a nice day". I also cough a fair amount, guess that is the GN. I have the TN bilaterallly also and that just bangs around my head every day. If it gets above a 4 I slam it with gabapentin.
My mother had TN.
Have a good and hopefully pain free day.
Funtsie
Kaz said:
Hi Judy, I have had GN badly on and off for a very long time now but only diagnosed approx. 6 years ago. ENT guy I used to see used to tell me it was in my head - hello!!! All because he couldn't see anything... He never made the connection to MS even though he knew I had MS. It didn't get diagnosed until it was really severe! In those early days it would feel like a constant lump in the throat on and off, or slight burning. The massive electric shocks and burning didn't appear until 1999 but even then no-one knew what it was. It wasn't until I started getting the continual bouts of 3-5 minutes 24/7 and became gravely ill that people panicked. My bouts are so severe that when I have long bursts of a few minutes my tongue actually feels like it is bleeding and smoking. It is awful.
I've had bouts of TN on and off also for a very long time but it isn't anywhere near as bad as GN. I also have RRMS. I can't take any of the anti epilpetics they prescribe for neuralgia as I have rare adverse reactions. I also have Sjogrens Sydnrome and it appears that has made my body highly sensitive to lots of meds. I tried Copaxone many years ago but reacted even to that, so I take the natural road and to be honest fair a lot better. Good diet, exercise when I can (exhaustion is a problem for me), good attititude and also to be able to blow off steam when needed.You're lucky you have benign course. How long have you had MS? I just had another major attack (still coming out of it now) the last nearly 5 months. My big attacks take months to ride through. Had three rounds of heavy steroids and the last lot finally settled the GN but still having other MS symptoms. You're the first other MSer I have met that has GN - we are rare unique creatures ;-)
No, I haven't heard any GN humour, although it is far more gruesome than TN in my opinion. The only humour I find is when I win and it knicks off back to its cave ;-) Mine attacks are extremely severe. Attacks every 3-5 minutes lasting from seconds to minutes continually day in/ day out for months on end. I become totally bedridden, lose so much weight as I can only take in fluids and even that triggers massive waves of pain.
Thankfully those biggens don't happen regularly as I usually keep it all at bay using acupuncture, but stupid me had stopped my acupuncture as I was feeling ok and after a while BANG it hits me. I know the acupuncture works as two times now I have stopped and GN arises, if I keep the acupuncture up and if I feel a niggle I increase visits, the GN stays in its cave. The acupuncture also helps manage my MS symptoms better as well. Sadly I can no longer work full time and am no where near as active because of the MS. It's the gift that just keeps on giving... But I continue on and make the most of what I can do. Modify things so I can achieve my goals etc. Not easy at times, but I am not a person who gives in or up! I think that truly is the only reason I am still here...
I was bounced around since my teens back and forth to a neurologist with no luck getting diagnosed until I had trouble walking 13 years ago. I also had abnormal hearing and balance tests since my teens compatible with a brain stem lesion but no-one could put two and two together. Finally sent for an MRI and got my long awaited diagnosis.
Yes, have had speech issues at times. Have had slowed speech and also know what you means about words and order. Dysarthria, slowed, slurred or even nasal speech is common in MS. Same with verbal fluency. Sometimes my words come out back to front or even mashed together making new words. My brain knows what I want to say but it comes out all wrong. Quite common actually with MS so I have learned. I also have issues at times with typing and the same things happening where I will type the wrong word or even phrases compared to what my brain tells me and I don't pick it up until I reread and think what!?! The muddled verbal speech has happened for many years. The typing side has been the last maybe 2 years. Thank god for editing ;-) But I have never had the yelling side. It has, however, affected my emotions and also my moods to a degree.
With MS no-one can predict your course as you would well know. I have known people with clinically isolated syndrome (CIS) for more than 20 years and then bang!!! No-one knows and that is the scary part. One can just live in the moment and be greatful for now. I try to look after myself as well as I can and stick to as natural as I can. I have been taking vitamin D for years, well before the medical professionals became interested in it with MS. I also have taken lots of Flaxseed oil for many years which reduces inflammation as that is what it is all about. Reducing inflammation which in turn decreases disease activity. So if one eats a diet void of inflammatory products and supplements in areas like omega 3 and 6, inflammation can be reduced and I am actually walking proof of that. My last attack was also brought on from major stress (stress is a huge trigger and I had a cancer scare), and also I had ceased acupuncture and also my supplements as at times I get over having to swallow so many things, especially when my swallowing ability has been affected.
Anyway, back on the supplements and doing acupuncture on some points to improve my swallowing as it was affected more after this last viscious attack of GN. I do a lot of research with MS as I have access to many medical sites through uni. So I try to keep up to date on certain issues of it that interest me. Studying pharmacology at the moment and about to start studying drugs for MS, so that will be interesting for me.
You were so lucky to be diagnosed so early as it is awful walking around for years not knowing what is wrong with symptoms that come and go randomly. I got to the point where I wouldn't tell my GP because he used to look at me like I was mad... I'd have something happening with my legs and by the time I'd get to see him it would have stopped etc. Plus after you get told several times from a neurologist that it is in your head, and also an ENT specialists (about my early stage GN) that there's nothing wrong with you, you begin to clam up and say nothing. It's a lonely place to be when you feel people do not believe you and it becomes rather scary too. So for me to finally get diagnosed was such a relief as I finally was able to put a name to what was wrong and research and learn what I could do in order to help myself to stay the best that I can. Whereas when you do not know what is wrong you have no idea what you are dealing with, so therefore no real way of knowing how to best manage it. That's just the way I think about things - that knowledge is power!
Here's a really good awareness ad that our MS Society in Australia made. http://www.youtube.com/watch?v=WJFa8uJqOUU
You are right, knowledge is power.Do you have other interests? I do water aerobics, and a lot of volunteer work, and that helps me think about other things. I try not to think about all of this unless it slams me in the face. The one thing I have control of......is how I deal with it. I do the D.A.S.H. diet for hypertention ( blood pressure last was 124/62 with no medications) and have been a non meat non poultry eater for 40 years. There is a TN diet and a MS diet but the D.A.S.H. works for me. I do know what you mean through, I clam up about it.Only one of my friends know.
And now you and whomever is reading this LOL!
I haven't heard of the DASH diet but will google that. There are a few MS diets out there, the Swank diet being one of the best. I steer clear of red meat because of inflammatory issues with it. I study part-time now but even that is a struggle as I am exhausted all the time... Another wonderful side effect of MS.
I have MS, GN,TN, and I get that "something" feeling in my throat. I also get hoarseness and a cough, pain on one side and then another, and then it all goes away. I have it in my ears also. What is nice about this site is that we all have something and unlike the physicians we see, we can give comfort to each other.
Funtsie
Hi Britt. Sorry for your pain, we’ve all felt it. I too have been diagnosed with GPN and am on carbamazepine also. I have been on it for about a year. Like you, a cold breeze is my worst enemy. I have tried acupuncture as well but once an attack occurs the pain is just horrific. The only thing which gives me relief at all during an attack is a heating pad or one of those heat packs.
My symptoms have changed a bit also and is now also in my throat during really bad attacks although I have never had bilateral pain, it is always my left ear. I do think the severity changes from attack to attack and the worst does involve my throat. As others have said, I would mention new symptoms to the neurologist just in case. Good luck and stay strong.
Hi
You have my full sympathy because all this listening to consultants going round the houses telling you one thing, then making you feel guilty for wasting their time, only to tell you something else completely different, isn't particularly helpful when all you really want is for someone to take you seriously and say 'yeah I know a way to make the pain stop'.
I've had GPN now for approximately 4 years with episodes lasting from a few weeks, to several months (the longest was about 9 months). An ENT Consultant over here in Ireland had me down for acid reflux too. My symptoms are on the left hand side when an episode occurs I get pain behind my nose, right up into my ear and at the back of my throat (sometimes separately, sometimes all together - super youch!) which often leads to a gagging sensation that you describe as if I had swallowed the wrong way, if it's a really strong and painful zapping, then the choking feels as if my airway has been completely blocked and I struggle to breath - really really scary the first time this happened. After all this has calmed down, my voice sounds like I've been strangled.
My most recent episode started just last month, irritated twinges at first leading to the full blown artillery zapping that went off every few minutes (within a week had lost nearly a stone in weight) for me talking, eating, swallowing, laughing, coughing, and sometimes nothing at all will trigger the painful attacks. When I went to my local general practitioner she said that I was not actually experiencing REAL pain, that she knew the difference and that my pain was all in my head and asked if I was stressed about anything (er no, just want the pain to stop NOW please!)
Also I've noticed that severe neck pain seems to coincide with the GPN so I go to a chiropractor. I went to someone new this time and she mentioned that my hyoid bone was misaligned and one of the symptoms of that ('cos I had to look it up!) is the feeling of something in the throat and gagging. Rather than take the anti-epileptic or anti-depressants Dr's prescribe, I have gone down the chiropractic and homoeopathic route which has helped me tremendously this time round.
Good luck with discovering what works for you and remember ( as I do every single time it goes off ), this too shall pass and that pain is often the mind, body and soul's way of getting our attention to look and see if there is something in your being that could do with transforming and releasing.
Love and light, Jackie
I have GPN with My Family Practice has not treated GN, and I asked for Gabapentin which I take when I have pain. 200Mg 3x a day took care of the cough. Has any one else had the cough and what did you do? I have MS,( undiagnosed)TN,GN. I take Gabapentin only when the pain is over a 4.
Britt0517, I get that gag feeling also. And I have it bilaterally in my eyes and ears but only rarely. Sometimes the bilateral is related to MS, have you other symptoms?
Thanks,
Funtsie
Here is a link to everything GPN research wise for those who are interested.
http://www.ncbi.nlm.nih.gov/pubmed?term=glossopharyngeal[Title]%20AND%20neuralgia[Title]&cmd=DetailsSearch
Here is a link to the general information on GPN.
http://www.rarediseases.info.nih.gov/gard/6519/glossopharyngeal-neuralgia/Resources/1
Hi there,
Wanted to let to know it is common to have ear pain with VPN, but unusual to have bilaterally.
Sorry to hear you are suffering so but as time goes on you’ll find the best doctors for you who will put you on the best pain control regiment. The lump in your throat sounds different but I assume the cause is due to your bilateral GNP. You may consider finding a neurosurgeon to address your symptoms at least one side first, through mad it is a rather easy surgery only needing hospitalization a couple of days. I have had this three times on same side but for me it did not work. For many sufferers out there it is successful good luck and if you have any question about this surgery ask away. Good luck and god bless!