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General General TN & GPN (Old Site)
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About a month ago I started out with what I thought was an ear infection. I was hoping it was going to be a ruptured ear drum because the pain was so bad and it was the weekend. Finally on Monday I went to the doctor, because now I had a sore throat and an ear infection (or so I thought!) I'm self employed so I don't have insurance, so it was $100 to have the not so nice doctor tell me that I was congested and that's why my ear hurt. He didn't even look in my throat. I was getting more mad as the appt. went on. As the pain got worse throughout the day I decided to do the neti pot that the Dr. had mentioned. It didn't help at all. I had been planning on getting a second opinion because, I've never heard of congestion causing so much ear and throat pain, clearly I was sick! I just wanted some antibiotics and be done with it! My son has been to a wonderful ENT, so I thought I'd go to him. I called early in the morning and never got a response back. Then while eating lunch, the swallowing was hurting and giving me stabbing pains in my ear and throat so bad that I started crying! (I'm a 31 yr. old mom of 4 boys...I don't cry much!) So I went into the ENT, I called and got to somebody that time so I didn't have to leave a message. This doctor is pretty great, we've had a couple things with my son and each time he's been awesome! I'm talking to the Dr. and as he's doing all these things, looking in my ears, throat, nose, touching my neck, jaw, head, etc. He says, "You have glosspharyngeal neuralgia." I thought, "awesome! A diagnosis, now I can get some antibiotics and be feeling better in a day or two!! Hooray!" As he's telling me what I should do, "take 800mg Ibuprofen, 3x/day, for 30 days..." I say, "Oh...so, uh...this is a long time thing??" He said, "Yep, unfortunately it is, wish I could just give you some other meds and you'd be done with it." He also mentioned after 30 days if it isn't better, then I need to go to a neurologist. So, I get home and start googling, which can be great, but also so bad! ;)

Anyway, I have some questions.

What is your pain like?

Does this sound like it's gpn?

I was able to eat a whole piece of pizza tonight for dinner! It didn't even hurt that bad! I've barely eaten all week because it causes so much pain. Is it going away? If it's going away, it isn't gpn, right? (There's some dull aching in my ear and throat right now.)

My husband's uncle is a chiropractor, so I called him and I'll probably be seeing him tomorrow. He said not to believe most of what I've read online because a lot of people are misdiagnosed. He also said that he has some things to try (or something) to clear our my nervous system, and he also said that if he can't help me he'll tell just flat out tell me.

Any thoughts are welcome! After reading online I've been hoping for a wrong diagnosis, and maybe just a bad ear infection, but it has been a while...Thanks!

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It sounds like GPN, and if it is, you're lucky to get such a fast diagnosis. (see my story) My advice? See a neurologist. An ENT isn't trained to treat a nerve problem. You will likely need an MRI to rule out any other diagnoses.

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Agreed...see a neurologist. GPN pain can lay dormant for days or weeks and WHAM! I really hope you were misdiagnosed and you have the flu or a cold.

To answer your questions, yes, it could be GPN. However, it is not the same for everyone. For example, I never had pain in my ear. Only my throat, and tongue. I have the pain under control with meds, so I will speak in past tense.

It hurt so much when I swallowed, the fear of swallowing prevented me from eating. Water went down okay. The pain was different from a sore throat. Even a bad sore throat. More of a shocking (electrical) pain. There is another support group on facebook you may want to check out..."GPN really Sucks!". There is a lot of info there as well.

Hopefully the ibuprofen works for you. It is an anti-inflammatory so I think it could release some pressure from your nerve. I'm no doc tho.

The best of luck to you!

-mike

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Cweeks,

You are very fortunate to have received a diagnosis so quickly. My hat is off to the ENT to even know what GPN is!!! Read around and you will see that people go to numerous doctors for years usually before anyone mentions GPN. It is extremely rare!! You mentioned that the pain was getting better. That is a symptom of GPN...you will have "episodes". As it progresses for some people, it eventually comes and stays. But most always, it comes and goes at first. Doctors do not say that there is a genetic link, but I completely believe that it's inherited in at least some of the cases. My mother's father had TN (neuralgia of the cranial nerve that runs to the jaw). And she has GPN. I've asked people here and many have nueralgia in their families. But, there are also many who do not know of it being in their families.

Find the best neurologist you can find. Best of luck.

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Welcome to the battle my friend…now is the time to arm yourself with as much knowledge as you can to combat the frustration you will undoubtedly face in the coming months. Mine too started in the ear, and over the next 6 months slowly trickled down to my throat on my right side. My best advice is to request to joins GPN really Sucks on Facebook,it’s a completely private group of awesome people with GPN…you can spend the next week scrolling down thru everyone’s posts to learn what you can, these folks are seasoned veterans of where and what to do. I am in California, I am going next week to see Dr. Alksne in San Diego for a consult…you need the MRI, and a neurologist who knows what they are doing. Ask for a copy right then and there of every scan you get, then start a folder to take with you…because you will be going to several doctors…most are clueless to GPN…that is good that you have a chiro in the family…some people have had some relief from a technique called Upper cervical treatment…there is a gal on here named Sherie that has that treatment all the time, she knows great advice for what helps with the chiro. I haven’t tried it yet. good luck!!
Jill

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Thanks for all the replies! One reason I was hoping it isn’t gpn, was because of having such a quick diagnosis, after reading that it has taken a very long time for most everybody! I love the ENT I went to, he was an army doc, he’s old, and right to the point. One of the times I took my son in it was for his tonsils, they were huge! The first time we went to him my son had a bump behind his ear. We had gone to the ped. Twice for the bump, first being told it was an abscess, second time antibiotics. Then he sent us to an ENT that took pictures of him, said he’s a mouth breather, gave us some nose spray and told us to come back in a month, and we’d go from there. My husband and I didn’t like that idea so I went to the ENT I said I loved. He walked in the room, looked at it, touched it and said, “I don’t know what it is, but it needs to be removed. Schedule a surgery date.” Exactly what we had been thinking!! Turns out it was a teratoma tumor…you know the joke about eating your twin? Yeah, that! Lol it had hair and cartilage! When I went in he asked what I was there for, before I could answer, he said, “I hear ya got pee in yer ear!” He’s hilarious!

Thanks again!

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Hi, was diagnosed with trigeminal neuralgia about 7 years ago but this was later re diagnosed as GPNa couple of years ago.

My very first pain was so intense it sent me across the room and felt like a red hot poker being shoved down my ear!!

Now I have problems talking and swallowing when it flares up. It is very intermittent, I can eat a whole meal and be fire then take a sip of drink and wham!

Regrettably it is not something that goes for good. I had a couple of years pain free, then it flared again. It was severe for several weeks then just bearable for months then I was pain free for a few months. Now it is with me most of the time and I must admit it gets me down.

I think those of you in America probably get better treatment than those of us in Great Britain but while in the UK I did have a fantastic GP who read up and actually studied the condition in a bid to help me!

I wish you good luck and if you want to chat - just say :)

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Hello there.

My symptoms started about 7 years ago. At first it felt like something stuck in my throat. Had a scan of my thyroid, went to ENT several times, had esophagus checked for tumors, then MRI's and c-scans. Went to spine doctor, because I have had several neck injuries over the years. All MRI's have shown nothing pressing on the nerve. I do have a pinched nerve and flattening of vertebrae. But doctor said it couldn't possibly be that, although an independent doctor (outside of my health provider) told me otherwise. When the spine doctor told me "good-bye", I broke down in tears and told him I wasn't leaving that day until he sent me to another dept. Thus, I ended up in Neurology, where they diagnosed it as GN. Over the past 7 years, symptoms have been mild to severe, episodic at first, now almost constant. The pain and closing of the throat can happen when I talk, laugh, cry, swallow and sometimes even breathing is painful. I have coughing/gagging episodes and severe pain in right ear, throat, and a tingling sensation on right side of tongue. Sometimes the pain is sharp, stabbing or aching. If pain has a color, some days it is hot red and other days it is cold blue. (I know that sounds weird) It moves from ear to throat and sometimes it feels like I have a really bad sore throat. I have been on three anti-seizure meds at once, am now just taking Trileptal. But it doesn't seem to be working either, as I keep having to increase the dosage. I also take valium at night to keep my neck and shoulders from aggravating the situation. I go to acupuncture, which if nothing else, helps overall. I work full time and currently doing three people's job. Honestly, it has really been getting me down. I'm in tears frequently, I don't sleep well. Sometimes the pain is worse at night, or not. In desperation, I told my neurologist I wanted whatever surgery was appropriate for GN. He sent me to a neurosurgeon where I heard about MVD, but I'm not able to even entertain that until my job situation hopefull changes. After spending three days in a row, buried under the covers, hiding from life, my doctor thinks I'm depressed. Having never felt this way before, I am inclined to agree. Husband, family members, and friends thought I ws exagerating everything or going through PMS until the doctor put a name on it. It is difficult for others to understand the level of pain, even if they experience chronic pain.

The best thing to happen to me was finding this web site. Just know that you are not alone, I thought I was for the longest time! Keep finding out as much as you can. Knowledge goes a long way to dealing with this. I wish you and everyone else the best.

9

Hi CWeeks. GPN is a crummy disease. Information is critical. Join the Facial Pain Association (FPA) online to get access to great information, and buy the book “Striking Back” (handbook on all kinds of facial pain including GPN) written by the best known experts in the field. You can get it from FPA or Amazon. It will answer most of your questions and explain how to proceed, including finding a doctor, getting the correct MRI, ruling out tumors and MS, medications, surgeries, and alternative treatments. If it is GPN you will have many decisions to make and “Striking Back” will help you and your family better able to make those decisions. My GPN is controlled through an alternative treatment called Upper Cervical Chiropractic (atlas orthogonal technique) but I also have a wonderful neurosurgeon at UCSD, Dr. Alksne, who is on the board of directors of the FPA. I’m an excellent candidate for an MVD but since my alternative treatment is working I’m putting that off as long as possible. Learn as much as you can and turn to the online communities for support.

PS - mine started with the stabbing shocks in my ear too. Then it began to include shocks under my jaw. It’s a pain that is just not understandable to others. Include your husband in all of your medical appointments and have him read “Striking Back” too, it will really help him to understand and better support you. Best wishes.

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See a Neuologist that is VERY experienced ith GPN. Not all are. This is definitely NOT a chiropractic issue!!!

Don’t waste time…see the right people.

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Hello - I'm new to GPN too. I first noticed an earache in October. I went to a general practioner and he told me to take a decongestant because there was no infection. On Decebmer 21st, I couldn't take it anymore. I noticed that I felt more pain in my ear when I yawned. That afternoon I saw an ENT. He, too said that there was no infection and sent me home with no advice. The next day I was at home when I experienced an excrutiating pain in my ear and jaw. I immediately started cyring because it hurt so bad but I quickly realized that my sobs made it hurt even more! My husband took me to the ER. They performed a CT scan of my head and jaw. It was normal. The ER doctor literally said that he had no idea what could be causing the pain and said that he didn't even know who to refer me to see. He did give me some hydrocodone but that was it. As soon as we got home, I googled my symptoms and the very first hit was for GPN. I knew that's what it was and that I needed an MRI. The next day, I went to a hospital that reportedly performed emergency MRIs. After waiting for hours, they said that they agreed that I had GPN but would not order an MRI. I was given a prescription for Carbamazapine. Since this was 2 days before Christmas I knew that I would have a difficult time seeing a doctor. On Christmas Eve, out of nowhere, I had the most intense pain I have ever experienced in my life! (I have had 4 children and have multiple surgeries for breast cancer - all of that was nothing compared to this pain). The medication made me extremely nauseaus and dizzy. I saw another ENT on Dec. 26. He confirmed that my ear, nose and throat were fine. Fortunately, he called a neurologist who I saw later that same day. The ENT dr also gave me a steroid to take for 21 days. He suggested that I stop taking the carbamazapine because it was making me so sick. The neurologist switched my medication to Elavil (an old anti-depressant). On January 2nd, I had an MRI and an MRA. The good news was that there wasn't a tumor or anything pressing on the nerve but the bad news was that there was nothing that could be "fixed". I was taking the Elavil everyday but it made me tired and left my emotions feeling "flat". I have now reduced the medication to every other day.

I still experience pain in my ear intermitantly. I notice it most when I swallow. At other times, I feel ok.

Does anyone recommend any other medication that has been effective?

I was excited to find this support group. It makes me feel like I'm not "crazy" and that others have experienced the same things that I did. I'm a bit discouraged that people have reported that the intense pain has returned.

Best wishes to you all!

Jen

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One thing I have learned from my own scenario as well as others is that you need to see a neurosurgeon with a great deal of experience with GPN. Many times the MRI is read incorrectly. Even if nothing can be seen it doesn’t mean you are not a surgical candidate.

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I had moderate stabbing pains for about a year when I ate anything. It was in the tonsil on the left, radiating to the ear. Sometimes I had a triggered pain which would last 5 to 10 minutes and there was nothing I could do to make it go away, I just had to ride it out. That was what got me to my MDs, and in a month I was diagnosed with GPN at Duke ENT. I had various studies (CT and MRI) and nobody back then saw anything wrong. The pain came and went for 6 years before it got so bad last year I was losing weight rapidly, I was starving so I went to Duke pain clinic, they tried seizure meds and it helped but not enough..I saw a neurosurgeon Ilast summer who looked at my MRI from 2007 and he said the problem was from compression of the glossopharyngeal nerve by the PICA artery, and he showed me a slice from the MRI. I had microvascular decompression (MVD) 11 weeks ago and the pain was gone when I woke up. However, it is a mountain to climb back from the weak state I was in and not quick. I would do it again if the pain came back, that's how bad it was. If I were to go back in time I would have seen the neurosurgeon in 2007 and had the surgery when I was younger and better able to recover. As it is I am thinking of retiring. Good luck, hope it goes well with your treatment, medical or surgical if you need it.

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Vicdoc said:

I had moderate stabbing pains for about a year when I ate anything. It was in the tonsil on the left, radiating to the ear. Sometimes I had a triggered pain which would last 5 to 10 minutes and there was nothing I could do to make it go away, I just had to ride it out. That was what got me to my MDs, and in a month I was diagnosed with GPN at Duke ENT. I had various studies (CT and MRI) and nobody back then saw anything wrong. The pain came and went for 6 years before it got so bad last year I was losing weight rapidly, I was starving so I went to Duke pain clinic, they tried seizure meds and it helped but not enough..I saw a neurosurgeon Ilast summer who looked at my MRI from 2007 and he said the problem was from compression of the glossopharyngeal nerve by the PICA artery, and he showed me a slice from the MRI. I had microvascular decompression (MVD) 11 weeks ago and the pain was gone when I woke up. However, it is a mountain to climb back from the weak state I was in and not quick. I would do it again if the pain came back, that's how bad it was. If I were to go back in time I would have seen the neurosurgeon in 2007 and had the surgery when I was younger and better able to recover. As it is I am thinking of retiring. Good luck, hope it goes well with your treatment, medical or surgical if you need it.

15

I hope you are all doing okay! I went to the chiropractor (Husband's Uncle) yesterday and he said it's TMJ, not any nerve issue. By the end of the appt. I was feeling pretty good, but the day before I had felt pretty decent too. I didn't feel much pain, if any when I left, but when the cold air hit my ear, I could definitely feel the pain again. Although, definitely not too bad! I looked up TMJ symptoms and it doesn't sound like that, but the gpn symptoms definitely describes it! I have been able to eat the last couple of days and I feel great, but from reading up on gpn and reading your responses, I guess I'm just waiting until the next episode!

I look forward to continue reading and thanks for all the help!