My name is Nikki and I’m 41 years old. I have currently been diagnosed as possibly having GN and ES. Over the last six months I have been to over 20 doctors including ENT’s, dentist, oral surgeons, GP.
About six months ago I had a sever sinus infections which was pretty normal for me. I took antibiotics, Allegra-d, medrol dose pack and a steroid shot from the doctor. My sinus infection cleared up but my sore throat didnt. I have had a severe sore throat on right side along with SEVERE ear pain and tongue pain. I’m worried most about the tongue pain. I’m so scared I have tongue cancer. The pain is mostly in the back. The pain varies. My tongue has throbbed, burned as if I had eaten something spicy. I’m so scared I cancer. Two weeks ago I had a tonsillectomy and tongue biopsy which was inconclusive. The doctor believes this is GN. I’m not so sure. My pain is not electric feeling and the burning isn’t like the burning I had in my neck with herniated disc. The pain in my tonsi or lack there of is throbbing. My tongue is sore and just hurts. My back molar hurts and so does my jaw.
Does anyone have this type tongue pain? Is your tongue actually sore? Like to stick out. Are your pains non-electric feeling. My quality of life is awful and I can’t help but think I have cancer. I will see a neurologist soon and if he find nothing then PET scan will be done to check for cancer.
Any input would be great. Currently I’m on neurotin and it takes the edge off, but doesn’t do anything for pain completely. My earache is so intense and excruciating. Nothing helps it but a hearing pad. Is does any nerve pain actually heal the nerve. I was prescribed lyrica but couldn’t afford it. Is if better or what does it do differently from neurotin?
It sounds like my GPN. I get it in the throat, tongue and ear. You can feel specific areas of the tongue when it strikes. My tongue feels like it convulses when the pain strikes. The pain varies - sometimes sharp electric shocks like someone has attached a TENS machine to my tongue, other times burning. After big attacks with my tongue it actually feels like it is bleeding and smoking. It is the weirdest feeling I have ever had. The GPN nerve actually affects the taste buds in the area at the back of the tongue and YES, spicy foods is a trigger. So is articifical sweeteners. Everything where it strikes hurts like crazy during big attacks. My tongue gets so sore it's not funny, so to me your symptoms sound GPN as I can relate to them. Also the intensity of the ear pain as well.
As for the drugs I can't take any of them. Have tried with very bad side effects. There truly isn't a great deal of difference between lyrica and neurontin. The first drug of choice is Tegretol, then usually neurontin then lyrica.
Try not to be too scared about cancer as your symptoms sound so much like mine and mine is GPN. It sounds like yours are severe as well like mine when it strikes. Some people only have minor irritations with it where they have an attack here and there but not bad enough that it stops them from eating, functioning, working etc. I can relate to the interferes with quality of life.
I had written some acupuncture points to use so I will post them separately for you. Also try to keep your mouth moist using Biotene gel and spray. A nasal gel is also really good to use. Dry air will trigger attacks more so ensure you have a humidifier next to the bed when you sleep. I am assuming you are living somewhere at the moment where there is not much humidity in the air??
You haven't mentioned how often these attacks are, or whether you can eat or not at present. Stick to a more liquid diet of soups and mushy foods during your attack, also look out of flavours that trigger it. So if you drink something and get a violent spasm try drinking water to see if the same thing happens. Try to figure out your triggers and then eliminate them. Also I personally found (my attacks come every 3-5 minutes when it is in full swing and last between a few seconds to minutes - the ones that last for minutes tend to be the ones where my tongue feels like it is bleeding and smoking) swallowing xylocaine viscous gel a little relief, especially to try to eat. It would take me over an hour to drink a cup of soup but with the gel could drink it in half the time.
Have you noticed more pain after your surgery? Have you had an MRI yet?
These are the general points that I use for GPN. Other have also found relief with them. You may find the acupuncturists may add one or two other points depending on your presenting symptoms, but these points are the general ones to use. When I have it badly in my ear I add another extra point below my ear etc., but any good acupuncturist will know what extra ones to add.
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)
Thank you for your response. My pain is constant 24-7. I have had this pain for 3-4 months. My pain doesn’t feel electric just painful and I know what nerve pain feels like. My pain is at the back of my tongue, tonsil area and excruciating earache that certainly never leaves. My tongue burns when I eat spicy and citris foods, but it is all over burn. My concern is tongue cancer. My tongue is also sore and hurts to stick out as well. Now, my jaw has started to hurt as well as the way down my face. Still just pain but not electric. Constant throb like a bad toothache wood be. Does this sound at all like any sufferers. I have no problem swallowing whatsoever. Nothing triggers this pain. I do think it gets worse as the day goes on. I’m on neurotin after a tonsillectomy and biopsy come back inconclusive for cancer. I’m not convinced at all. These symptoms are identical to tongue cancer so I’m scared to death. I’m desperately seeking others experience. GN seems to be more ‘episodes’ and electric or jolting type pain. Mine is not like that…more severe ache type. Please any help would be appreciated from anyone.
Nerve pain can come in many forms, it just isn't electric shocks. It can feel like burning, stabbing, tight pulling sensation, aching, tingling or electric shocks. It can also change from attack to attack or during an attack. It is unpredictible and extremely hard to control. The burning of the tongue eating spicy foods and drinking citrus suggests the taste buds are affected. Here is a diagram showing the locations the glossopharyngeal affects. It is always the back of the tongue as that is where the nerves run. This diagram may help for you to see the areas affected which are the same areas you have mentioned. However, if you fear it is tongue cancer, go and seek a second and third opinion. Get some other tests done. Have an MRI, CT scan, or better still a PET scan if you can.
Yeah that’s how I feel like I chewed or bite the back of my tounge only on the right side ,more like a mild burning sensation no electrical feeling I had eagles syndrome had the surgery 2 years later went through the Mvd doc saw a compression on my MRI but nothing once he popped me open,I’ve been to a cancer center to it feels like something is wrong which there is who know what it is ,same as you mine started as the flu went a away but the strep throat feeling on my right side has been there since it started in 2001 I think you have eagles I think burning sensation is the difference between eagles in Gpn I never had a electrical feeling and Mvd didn’t work
Are you the person with the youtube video? lol That's how I found out about these conditions. Which imaging is the best for Eagle Syndrome for the doctors? Also, did you have a constant earache? My earache is severe and truly debilitating. My tongue hurts, burns, sore to stick out, and my throat hurts. I just had my tonsils removed 4 weeks ago, but that didn't help. Can I palpate my styloid? I have no idea how or where this is located. I have looked at pics, but I can't figure it out. Got a video for that? lol
Lol yeah that’s me I need to make a update video kind of depressing since the Mvd was unnecessary in the video after my Mvd I show how to find it on a panoramic from a oral surgeon it was the fourth oral surgeon who spotted it,but you need a 3d MRI I think also called a tomography if you had a MRI done already most places can get it changed without having to take another one
The normal length of the styloid process is approximately 20-25 mm. So anything larger than this is regarded as Eagles. It is a simple CT scan that lasts a short time to get an answer. It is the first thing that you should rule out. Then if Eagles is ruled out ask then to have MRI with constrast to look at your blood vessels etc., to ensure you do not have constriction or something pressing on the nerve.
I should note in Australia (and assuming this is International diagnostic criteria) to be diagnosed with Eagles Syndrome they need to be greater than 3cm. This is information straight off my scan report. Hope this helps.
Did you have surgery for the herniated disk? My Ent says my GPN was caused by either the nerve being over stretched during disk surgery or it is trapped in scar tissue. Feels like an “ice pick” is being stabbed through my right ear to my throat. or the worst strep throat and inner ear infection ever, + ringing in ear. Has progressed to right side of face (parotid gland area) upper back molars, jaw, side of head, neck and shoulder. All are there all the time and increase in intensity with lifting. Tried Neurotin and Lyrica and had bad side effects. Just started Trileptal. T4 and Valuim 2x daily saved my life over the past year. But not meds that are going to “calm” it down, so doctors want to get me off.
I haven't had surgery for herniated disk, but I do have herniated and bulging disc in my neck. I have a relentless earache that never leaves. Then a couple times a day I get a throbbing across my tongue and tonsil area. Also, I have molar, jaw and pain in what seems to be my parotid. I'm petrified I have cancer. Does anyone know if this neuralgia causes the neck to swell?
Never heard or read it causes swelling. The Glossopharyngeal does “communicate” with other cranial nerves so can cause intense wide spread pain and even affect the heart. My GPN was from opening the neck for surgery.
Icepick - No, GPN does not cause swelling of the neck etc. Do you suffer from dry mouth, dry eyes, dry skin etc? If you do I would suggest you ask your GP to be screened for Sjogren's syndrome (SJ). SJ causes moisture glands in the body to dry up (basic explanation), it causes parotid gland swelling and sections of the neck. So given you have GPN you should have this looked at. Ask for a referral to an eye specialist for a Schirmers test, and Rose Bengal test. Plus ask your GP to run the following blood tests: ANA, RF, SSA, SSB, ESR and IGs. Also ask them to do a full blood count. If nothing shows up you need to investigate further as GPN cannot cause swelling.
In regard to affecting the heart, yes GPN can when the attack are strong enough. The glossopharyngeal nerve runs into the Vagus nerve. The vagus nerve controls our heart rate and blood pressure, respiration plus more. In my really bad attacks I have issues where I literally cannot breathe. It is like someone suffocating me - very scary!! I have been reclassified with vago glossopharyngeal neuralgia because how badly mine affects my heart.
As mentioned in previous posts GPN pain is like other nerve pain where it can be experienced in many different forms, not just an icepick feeling. Some people can just feel as if they have a lump in their throat that irritates them. It can be burning, tingling, stabbling etc. It is not a one size fits all. Also it can be caused from many different things: Eagles and entrapment of nerve are the most common. However it can also be a result from autoimmune diseases such as MS, SJ and diabetes to name a few.
Thanks Kaz, it was Portland 72 asking about swelling. I just have pain in parotid gland area of my face. When I kneel and reach for things-like a pan in the back of a cupboard I feel like I have a noose around my neck and am being “hung”. My heart sometimes skips- flutters- stops(very brief)- I become lightheaded- then heartbeat returns to normal. I am getting very discouraged by this disorder. My life is nothing like before my surgery. I do not feel like I had a surgery but more like I was the victim of a violent beating/stabbing. I read this blog and seems some people get relief from surgery if they can find the right doctor who can find where the nerve is being compressed. Research that I have found and my neurosurgeon and ENT doc say it usually does not show up on MRI or CT because the nerve is too small. Glossopharyngeal nerve avulsion I guess is an option but risky. Meds have “taken the edge off some” but I have not been pain free for 17 months, just can’t imagine another 30 years or more of living like this. Surviving one day at a time.
I am seriously at wits end with whatever I have going on. Does anyone on here have daily pain that doesn't seem to have any triggers. The only thing I have noticed that causes me any bit of pain is if I'm outside and maybe it's a little windy and cold. Then possibly my ear starts hurting and then spreads to spasm of tongue and tonsil. I am on neurotin, so these spasm are less intense. I don't have ANY pain when eating whatsoever. I do notice that back on the base of my tongue that the side my tongue hurts on is more prominent and swollen. Does anyone else have swollen tongue on same side as pain? I do feel sometimes that my brain forgets how to swallow for just a small second but that could be anxiety. I do have spasms in front of my neck also. Is this common in GN? Any more help would be appreciated. I go to work every day, but I always have this pain. No real triggers, and it doesn't send me to the ER, but would if I didn't take neurotin. Any help would be appreciated. Thank you
GPN does not cause swelling of the tongue, so you need to go and have your tongue looked at while it is swollen. Yes, GPN can affect swallowing but there are also other things that can also affect that as well. You mention spassms at the front of the neck. I am not sure which location you mean but at the front would not be GPN if it is where I am imagining.