Hi there, I really appreciate reading all these posts as I am very confused about facial pain in general. I was told in June of 2017 that I had TN after experiencing some very intense pain in both my ear and my teeth (left side). I was put on Carbamezapine and after about 3 weeks it did start to take the pain away. I was not able to eat or talk or brush my teeth for those 3 weeks because of the intense pain. I have had 2 MRI’s which both showed no damage to the nerve of any kind. I am now on 900mg of carbamezapine and only experience aches and some shocks in my ear occasionally. What I don’t understand is if I don’t have TN than what is it? Does anyone else experience the ear pain? thanks for reading.
Dear Canadian Friend,
I am a fellow TN sufferer, and I also take carbamezapine. I do experience stuff in my ear. the one side where the TN is. As I understand it, and please someone correct me if I am wrong, the problem is in the brain sometimes, and not in the nerve itself. That part of the Trigeminal Nerve which starts in the brain is caused to misfire somehow, and causes the intense pain we feel. I understand that all of this is very near the auditory nerve, and that is why the ears sometimes get involved. Maybe there is no damage to your nerve at this time, but the misfire is why you feel pain.
I am not a docctor, but this is what I think my doctor told me.
For eating, when I am symptomatic, I use non-chunky soups, smoothies, etc. Pleas do not give up. You may have periods where you feel no, or much less pain
Thanks for your reply. This is very helpful, however, I have been told that sometimes carbamezapine will stop working and you have to keep increasing the dosage to get relief. How long have you been on it and have you noticed this with your dosage? The side effects are not fun!
I have had the same diagnosis, had my first MVD - due for another, and have had some nerve blocks done as well. I am also a sufferer of Geniculate Neuralgia. I have permanent ear discomfort with regular shocks or stabs of pain lasting random lengths of time from a stab to hours!!
We have found that oral morphine or dope put me to sleep quickly and I awake, relieved. Take your chances Hang in there, and don’t give in.
It’s my understanding TN doesn’t show on MRI and other scans. Those are to rule out other possible causes like tumors and blood clots. TN is typically figured out after everything else has been ruled out simply because it can’t be seen. I was diagnosed 10 years ago and at that time was put on trileptal with the statement from my neuro that there should be some relief within a hour of the first dose and if there wasn’t to call her immediately. I had immediate lightening of pain on a very low dose! Since then I have had to experiment with treatments but right out of the gate I had relief. No three weeks. No upping doses quickly. No major side effects. This makes me think your current med isn’t working so well for you and you should look at options.
I have been on carbamezapine for 9 years. No, I do not find that it stops working. I have increased it at times, when the pain increases, and decreased it when the pain was less. I started with a much lesser dose than you are on. The side effects I have are sometimes sleepiness and mild nausea. The first is taken care of obviously by rest, and the second by snacks. My liver scan showed that it was completely normal a few months ago. Recently I have been in a lot of pain, and have increased the dosage to almost what you are at now.
Bad, bad day for me pain-wise.
I hope you are having a better one.
That is great to hear, sometimes the ear pain is really the worst part and my neurologist told me that if there is ear pain involved than I don’t have TN but he didn’t seem to know what it was. I feel like a lot of neurologists here have no idea what this is or how to fix it!
I will look into that and thanks for the advice. The most recent MRI I had is called a FIESTA and apparently can see blood vessels very clearly. I’m not sure if this is new or true but according to that, none of my blood vessels are causing the issue.
That is great news! My main problem with the carbo is the rash but I take Claritin during the day and Benadryl at night which seems to help. I will try eating softer foods for the next few days, as my jaw has been sore this week.
In my experience, carbo has been a life saver for me. Of course, it’s not a recreational drug, and it’s only for a serious purpose. It usually takes getting used to it, before the side-effects fade a lot. I have had friends who had side-effects which probably would have faded somewhat, but these friends gave up, saying that they were unable to take the drug. Then, they kept searching for the right combination to get pain relief, and have not found it. Carbo works best for me.
Hang in there, this is an awful disorder that we have. You can master it with patience and courage. We are here for you.
Thanks again, I really appreciate your insight and information.
Hi Megara11, thanks for sharing your story. I initially had minor pain around the top & rear of my ear whenever I touched my skull there, or put gel in my hair & feathered it back over my ear. Then weeks later came the shooting stabbing pain in my throat when I swallowed, and eventually severe pain in my jaw & teeth area. Long story short, I had Glossopharyngeal Neuralgia but it went misdiagnosed for a long time. But in my case it all began with ear pain. I have detailed my history, treatment & subsequent successful surgery in previous posts if you want to read those. I was taking 200 mg of Carbamazepine for 10 months which seemed to work, until the pain suddenly broke through one day bringing such intense pain. I upped my dose as high as 3,000 mgs per day just to mitigate the pain, but it made me really drowzy at times. My Neurosurgeon told me that was the highest dosage level he had heard of & then decided to do the MVD surgery. So if you end up with any throat pain, think of the potential of GPN
Hi Chetty, thanks for the information. I will take a look at your prior posts. It is nice to hear from others who have had similar problems.
Yes, I do experience randomly severe ear ache pains. But it goes away and comes back… I also have this pain in starting behind my right eye working its way hurting throughout the right side of my brain.
I don’t take any of those pills even though I do have them. They cause my heart to skip and do weird things to me, like anxiety. Since I also have chronic AFib.
God Bless you, I pray that you get better. Peace.
Hi Megara, I do get the severe ear pain it is my trigger point if I wear glasses or a headband or something touches in or around my ear it causes the TN pain I know sometimes my jaw and teeth area will start to hurt then I know the pain is coming but I do know my trigger point is my ear some people there trigger point are eating or chewing, brushing their teeth anything in their mouth can trigger the pain different people have different trigger points in different areas but I do get like a knife going into my ear and somebody turning it very severe pain and I’ve been dealing with this since 2005 but they didn’t diagnose it till 2007 I’ve also had the brain surgery, gamma knife, blocks and stents put in my face. I’m waiting to see if there’s anything new to try otherwise I’m on oxyContin and oxycodone which have worked for me great. I have tried 4 to 6 different medications before I went on oxyContin they gave me severe side effects even after 6 to 8 weeks. I hope the best for you and keep up your spirits it is one of the worst pains people can go through.
I think you and I are related. Everything you mention, is what I’m going through too!!
I’m on 600mg Pregabalin, 1200mg Tegretol per day and a 15microgram patch changed weekly.
The cutting through of my Glossopharangeal Nerve has made no difference to my ear condition though. I’m due for another procedure soon.
All the best to you. I’m thinking of you.
Chetty not Cherry
Hi New Canadian Girl,
Yes, I have had ear pain such as you describe in association with trigeminal neuralgia. Remarkably, stereotactic radiosugery (gamma knife) dramatically reduced the pain. Wouldn’t recommend that you get this surgery, just reporting what happened to me. Surgeon said that wasn’t supposed to be an outcome, but great! Anyhow, here is something that helps me a lot. Earmuffs. Ear Mitts Black Velvet Bandless Ear Muffs, Black Regular
Touch the image to zoom in
EarMitts Fashion Ear Muffs For Men & Women, Bandless Winter Earmuffs , 2 Sizes
You can buy Ear Mitts off Amazon. Thay are comfortable. Several types are offered. Mine aresimple, gray, and on the inside tag, they are called, Ear Mitts. I wear one on just the ear that bothers me on my tn side. It warms the ear and a good part ofthe side of my face. I just wear them indoors.
Thank you for the suggestion and I will look into that for sure.