Symptom questions

Hi All-

I have suffered with right side ear to neck pain for some years now. I have a nagging pain as if the nerve is irritated sometimes it hurts more than others. I often find myself looking at my throat to see if my tonsil on that side is swollen. I also often feel like I have an earache but it always checks out fine. I went to the dr for the tongue, jaw, under ear pain. They told me it was an infected salivary gland, gave me antibiotics but you know didn't work. I have gone to ER's an they have told me nothing but heat and ibuprofen because everything was fine and it must be a spasm. I get them (spasms) all the dang time throughout my body and take Zanaflex for it. I have had to stop drinking or eating cold things. The pain I experience when I ingest something ice cold is unreal knee dropping pain. I also get this pain when I eat things of a certain shape or texture. I never thought this was something real. I just assumed it was a crazy quirk to me getting older. My husband used to laugh at me because he said that I would get a throat freeze instead of a brain freeze. I tried to explain to him the pain but of course you all are familiar with trying to describe a pain to someone that they can't feel or understand. Anywho has anyone else had these symptoms? Tried to get a slushy from Sonic the other day with the kids hadn't tried to drink one in 7 months or more and on the first sip the pain. I had to throw it away. Thanks in advance for you input. I want to bring this up to my Neuro but I want to make sure I am presenting it properly or he won't give it the proper attention.

Hi Zeezee -

It sounds like cold drinks could be a trigger. The GN nerve does pass along the surface of the throat. My symptoms were different, but chewing and eating can be classic triggers. From my humble experience, explaining the triggers should be very meaningful to your neurologist - if they aren't search for someone who does have a sub-speciality in neuralgias.

I took many medications on the route to my final diagnosis - but a nerve block injected into the glossopharyngeal nerve (by an ENT referred to me by my neuro) gave me the best relief and confirmed the diagnosis. It was the biggest relief I had had in 18 months of pain and it was a simple in-office injection similar in discomfort to getting novocaine injection.

Keep up the search for a diagnosis - you're not crazy :-)


Thanks Jessica. This is so comforting knowing that this severe pain isn't all in my head as I am currently seeing a Neuro to rule out MS. He is an MS Specialist. He told me since I suffer from PTSD that ultimately all of the neurological issues I have going on could be in my head. I felt so deflated when he said that. Thanks for the encouragement.

ZeeZee -

I would find another neurologist if your current one dismisses your pain. There are compassionate doctors out there who will listen to your symptoms. Perhaps you can find a neurologist in your area that specializes in treating neuralgias.


I will start looking. Thanks again Jessica.

Hi zeezee,

I can message you the name of the neurologist I saw in Charlotte if you would like. He seemed competent and compassionate and was the one to diagnose me with gpn.

- Aethlstan

Hi-Thank you that would be awesome!

Hi ZeeZee,

The 9th cranial nerve runs from the base of the brain through the ear and into the throat. This is why you feel the pain in your ear and throat. Some triggers for my attacks are cold drinks or weather, swallowing, yawning, laughing to much, or turning my head to the side quickly.

I take medication which keeps me pain free, but it does have side effects. My attacks occur in the right side of my throat. It feels like the worst Charlie Horse anyone can imagine multiplied by 100. I cannot talk, swallow, cry, or move my head. My last attack without medication was 17 1/2 hours. I have a firm diagnosis of GPN. I have been medicated for 7 years now and it is better than the ER trips I used to make. I hope you can get something from my story.

I was recently diagnosed wit gpn about about a month ago and now it’s bilateral. It is aweful and I now get l my drinks room temp, sometimes even that doesn’t work. Sad that you all have gpn but also glad I can talk with others who know what I’m going through.

Hi Chrisie! I spoke with an ENT Dr about the pain and he said it’s either TN, GPN, or both. He doesn’t handling caring for it so I have to find someone. Oh what you explain sounds so familiar. One day I triggered it with a piece of steak that nerve was volatile for 2 days. I’m just glad to know I’m not going crazy for starters. Britt0517 hopefully the diagnosis will help with your pain management.

My GPN pain I had before my surgery was about as bad as any I have ever experienced including kidney stones. I had an MVD procedure with great success from the moment I woke up. That said it was a rough recovery and MVD doesn’t always work for everyone. The GPN pain was so horrible, I still feel the terror when I think about it, even nine months postop. I’d do the surgery again, medications just didn’t do it for me. I have my life back. Hope you improve!

You are not crazy! My neurosurgeon who did C6-C7 fusion for herniated disk had no idea what was happening to me. He just said my MRI looked good and everything was "fine". Well as anyone with GPN knows neuralgia pain is not being "fine". My family doctor looked in my ear and throat and told me everything look "good", nothing he could do. I went to the ER when my pain hit a crisis level and I felt like a wood vice was on the right side of my neck. The neurosurgeon had started me on a course of steroids so after a CT scan the ER thought I was having a phycological reaction to them. I decided to go to an ENT in my area that had finally helped my mother-in-law with a disorder no other doctor had helped her with. He numbed the back of my throat at the location of that branch of the GPN nerve and it felt a little better . A couple of hours later the pain came back much more intense. But at least I had an answer. He was sure it had been triggered by the over stretching of the nerve during surgery and/or scar tissue pulling on it. Prognosis was it would self heal. Now 17 months after surgery I still have severe pain every day. Valium and Tylenol #4 have helped take the edge off but I now have asked to see a new doctor who might know more. So I just started seeing a neurologist who started me on Oxcarbazepine (because he said it is safer than Carbamazepine). I am an RN so know I have to keep being my own advocate. If you are not having ear branch pain, the throat surgery is easy so my ENT says.