Has anyone else experienced ear and throat pain?

My TN pain has been bad recently. And I am also having ear and throat pain on the same side. Has anyone else had anything like this? Thanks!

I experienced both. I had my first MVD, May 2009 for the TN pain for which I was having both the atypical and typical. After that MVD was still have pain and when we went back to meet with the neurosurgeon I explained that I was having deep inner ear pain and being shocked when I swallowed. I was told it was a cross between having TN, along with genticulate neuralgia and glossopharyngeal. I just had my second MVD in June where he relooked at my trigeminal nerve but he also went in and cut the nervus intermedus which goes into ear and also he look at my 9th and 10th cranial nerves. He found an artery that was braided through all of the cranial nerves, which explains why I was having so much pain. I still am having pain but to a much less extent, thankfully.

I have never put the two together before, but I get a lot of sore throats always on the same side, and I get pain in my ear even though I am deaf that side from my operation. I have never mentioned it to my Doctor perhaps I will next time.

Hi Susan,
Before I was put on to Tegretol I too had bad sharp pains in my left ear and left side of my throat, back of the jaw and it was just hot sharp stabs of pain and I have been pain free and it has been such a releif. I do hope that you can get relief from your pain too and soon. I was with these pains for almost 6 months and went to the Dentist twice and no problems with my teeth seen my GP that I have been seeing for almost 11 years and then decided after no satisfaction to get a second opinion, the best thing I could have done, as this is where I am now…pain free, but numb on the left side of my face, neck and forehead. Keep going until you get satisfaction Susan. Now I have to see a Neuro and it will start again where I have to explain everything that has happened… so you have to repaet your yourself over and over…hang in there as this TN site is the best thing that can happen to you, there is a lot of support… Cheers Susan Carpenter

I had an appointment with an ENT doctor today. he found nothing anywhere near my throat or anything. We talked about my TN and he said that he couldn’t see any reason that the 5th cranial would cause this type of pain. He was very thourough. Then he told me to go to my neuro dr. and have him investigate the 9th and 10th cranials ! And then I read your post. So maybe that could be possible. Thank you so much. I hope you can be totally pain free soon.

Jessy said:

I experienced both. I had my first MVD, May 2009 for the TN pain for which I was having both the atypical and typical. After that MVD was still have pain and when we went back to meet with the neurosurgeon I explained that I was having deep inner ear pain and being shocked when I swallowed. I was told it was a cross between having TN, along with genticulate neuralgia and glossopharyngeal. I just had my second MVD in June where he relooked at my trigeminal nerve but he also went in and cut the nervus intermedus which goes into ear and also he look at my 9th and 10th cranial nerves. He found an artery that was braided through all of the cranial nerves, which explains why I was having so much pain. I still am having pain but to a much less extent, thankfully.

Thank you very much. I have been on several meds but they don’t help that much. The only one that really made me almost pain free was Tegratol. I had a reaction to it and got very ill. I am still so upset that I can’t take it. My husband wants me to ask the neuro if it’s possible to try it with something that would prevent vertigo and nausea.Currently on Dilantin and Lyrica. I am happy that it is helping you. And I feel hopeful that others have had the ear and throat pain. You are all so kind on this site.

Susan Margaret Carpenter said:

Hi Susan,
Before I was put on to Tegretol I too had bad sharp pains in my left ear and left side of my throat, back of the jaw and it was just hot sharp stabs of pain and I have been pain free and it has been such a releif. I do hope that you can get relief from your pain too and soon. I was with these pains for almost 6 months and went to the Dentist twice and no problems with my teeth seen my GP that I have been seeing for almost 11 years and then decided after no satisfaction to get a second opinion, the best thing I could have done, as this is where I am now…pain free, but numb on the left side of my face, neck and forehead. Keep going until you get satisfaction Susan. Now I have to see a Neuro and it will start again where I have to explain everything that has happened… so you have to repaet your yourself over and over…hang in there as this TN site is the best thing that can happen to you, there is a lot of support… Cheers Susan Carpenter

Yes go ahead and ask him. Sounds very similar to what I get. Thanks.

Margaret Gladys Mills said:

I have never put the two together before, but I get a lot of sore throats always on the same side, and I get pain in my ear even though I am deaf that side from my operation. I have never mentioned it to my Doctor perhaps I will next time.

Hi Jessy,
how in the heck do they LOOK at the 9th and 10th cranial nerves and arteries?

Jessy said:

I experienced both. I had my first MVD, May 2009 for the TN pain for which I was having both the atypical and typical. After that MVD was still have pain and when we went back to meet with the neurosurgeon I explained that I was having deep inner ear pain and being shocked when I swallowed. I was told it was a cross between having TN, along with genticulate neuralgia and glossopharyngeal. I just had my second MVD in June where he relooked at my trigeminal nerve but he also went in and cut the nervus intermedus which goes into ear and also he look at my 9th and 10th cranial nerves. He found an artery that was braided through all of the cranial nerves, which explains why I was having so much pain. I still am having pain but to a much less extent, thankfully.

Hi Susan,
Have you tried trileptal?

Susan said:

Thank you very much. I have been on several meds but they don’t help that much. The only one that really made me almost pain free was Tegratol. I had a reaction to it and got very ill. I am still so upset that I can’t take it. My husband wants me to ask the neuro if it’s possible to try it with something that would prevent vertigo and nausea.Currently on Dilantin and Lyrica. I am happy that it is helping you. And I feel hopeful that others have had the ear and throat pain. You are all so kind on this site.

Susan Margaret Carpenter said:
Hi Susan,
Before I was put on to Tegretol I too had bad sharp pains in my left ear and left side of my throat, back of the jaw and it was just hot sharp stabs of pain and I have been pain free and it has been such a releif. I do hope that you can get relief from your pain too and soon. I was with these pains for almost 6 months and went to the Dentist twice and no problems with my teeth seen my GP that I have been seeing for almost 11 years and then decided after no satisfaction to get a second opinion, the best thing I could have done, as this is where I am now…pain free, but numb on the left side of my face, neck and forehead. Keep going until you get satisfaction Susan. Now I have to see a Neuro and it will start again where I have to explain everything that has happened… so you have to repaet your yourself over and over…hang in there as this TN site is the best thing that can happen to you, there is a lot of support… Cheers Susan Carpenter

I’ve been having TN pain this week for the first time since I started taking Lamictal three times a day (about 3 weeks ago). I believe this current bout has been brought on by some stressful situations both at home and work. It’s tough to go to bed in pain and wake up in pain. Thankfully it hasn’t been unbearable (more like a 5 or 6 on a scale of 1-10).

But, this morning, for the first time, I awoke with not only pain on the right side of my face (my TN side) but along the right side of my neck. It wasn’t my throat that was sore but my neck. It didn’t feel like a muscle pull. It felt like the same kind of achy throbbing pain I get on the side of my face. Like I said, this was a first and now, 6 hours later, the neck pain is gone while the facial pain persists.

Has this happened to anyone else?

Also, the Lamictal is the only thing I’m taking. It is supposed to prevent the pain from starting but now that I have pain is there something I can take to treat the pain that someone here has had success with? I’d like to call my neurologist (who prescribed the Lamictal) to ask for something else to take only when pain presents itself.

Hi Susan,

I am sorry your pain has been bad lately HUGS But, to answer your question, most unfortunately YES. The first time the ear pain started I didn’t know what it was. It started in the left ear and I later got it in the right ear also. (my TN is bilateral) But it started so fast and hit so hard with its intensity, I fell sideways onto a lady I was walking beside on the street :frowning: that was hard to explain… My ENT couldn’t explain it and my Neuro has said possibly Occipital Neuralgia, possibly Glossophyrangeal or however you spell it, or could just be an extension of my TN as well. So I still don’t know why it happens, but it does. The mouth pain I get, had pain there tonight actually, it’s more the roof of my mouth and around the tonsils & feels like I’ve swallowed a cup of boiling water! I also feel further shock like pain then around my chin.

Wishing you pain free days Susan!

Cheers ~ Kerry

I am so sorry you are having this type of pain! I occasionally have throat pain, but have ear pain daily, sometimes multiple times per day. It is a stabbing pain, as if someone is stabbing me with an ice pick. Everything I have read says that I shouldn’t be experiencing this from TN, but as you can see from the comments below, it does happen. I have been on several meds and none of them have helped with this pain. I wish you luck in finding the right medication to bring you relief.

XOXO

Debbie

No, I have not heard of Trileptol. Has it helped you?

Jean Mikhail said:

Hi Susan,
Have you tried trileptal?

Susan said:
Thank you very much. I have been on several meds but they don’t help that much. The only one that really made me almost pain free was Tegratol. I had a reaction to it and got very ill. I am still so upset that I can’t take it. My husband wants me to ask the neuro if it’s possible to try it with something that would prevent vertigo and nausea.Currently on Dilantin and Lyrica. I am happy that it is helping you. And I feel hopeful that others have had the ear and throat pain. You are all so kind on this site.

Susan Margaret Carpenter said:
Hi Susan,
Before I was put on to Tegretol I too had bad sharp pains in my left ear and left side of my throat, back of the jaw and it was just hot sharp stabs of pain and I have been pain free and it has been such a releif. I do hope that you can get relief from your pain too and soon. I was with these pains for almost 6 months and went to the Dentist twice and no problems with my teeth seen my GP that I have been seeing for almost 11 years and then decided after no satisfaction to get a second opinion, the best thing I could have done, as this is where I am now…pain free, but numb on the left side of my face, neck and forehead. Keep going until you get satisfaction Susan. Now I have to see a Neuro and it will start again where I have to explain everything that has happened… so you have to repaet your yourself over and over…hang in there as this TN site is the best thing that can happen to you, there is a lot of support… Cheers Susan Carpenter

I hope you can find relief for that ear pain. Sounds awful. Mine comes with the throat pain usually. It is very difficult for me to eat usually because of the regular TN pain, Now when I swallow the throat pain shoots into my ear.

Debbie said:

I am so sorry you are having this type of pain! I occasionally have throat pain, but have ear pain daily, sometimes multiple times per day. It is a stabbing pain, as if someone is stabbing me with an ice pick. Everything I have read says that I shouldn’t be experiencing this from TN, but as you can see from the comments below, it does happen. I have been on several meds and none of them have helped with this pain. I wish you luck in finding the right medication to bring you relief.

XOXO

Debbie

Mine seems to go along with the throat pain. Mostly when i swallow but not all the time. The throat will hurt then kind of shoot into the ear. Kind of like a throbbing.

Linnette Lee said:

YES!! My pain began with ear pain first then progressed and now I have started to have spasms and pain in my throat. I am very scared. :frowning: Since my journey began I continually get worse as if the latter is not bad enough. To top it off I live in Kansas and the doctors just seem to not understand the disorder and are breaking my wallet doing things that give me no real results. I would love to hear more about your pain in the ear? see if there are similarities.

A few of you have mentioned having ATN. I am certain that I have that now. When I was first diagnosed a few years ago, I just had the shocking pain occasionally. Now it is pretty much a constant heavy like pain. Sometimes worse than others. Usually difficult to eat.Not that it wouldn’t hurt me to miss a few meals ! I described this to a neurologist and he just stared at me. I have actually learned more on this site than I learned from that guy.

Sabrina Ellis said:

Hi Susan, Since my ATN started at the end of 07,I have had pain down in my left ear which is the same side I have ATN on.I also have some hearing loss but 2 ENT doctors found nothing wrong with my left ear except I had hearing loss after one of them gave me a hearing test to determine how much.I also have pain on the left side of my neck but no throat pain.My neurologist started me on tegretol friday to take with the neurontin I have been on.Not sure if this will help me or not but I do hope you find pain relief soon.Good Luck!!
Sabrina

I have never had neck pain really. As far as I know there is nothing that can help the pain like a regular pain reliever does. If anyone else knows of anything , please let us know! All the meds I have taken were to keep it from happening.

Karen Brown said:

I’ve been having TN pain this week for the first time since I started taking Lamictal three times a day (about 3 weeks ago). I believe this current bout has been brought on by some stressful situations both at home and work. It’s tough to go to bed in pain and wake up in pain. Thankfully it hasn’t been unbearable (more like a 5 or 6 on a scale of 1-10).

But, this morning, for the first time, I awoke with not only pain on the right side of my face (my TN side) but along the right side of my neck. It wasn’t my throat that was sore but my neck. It didn’t feel like a muscle pull. It felt like the same kind of achy throbbing pain I get on the side of my face. Like I said, this was a first and now, 6 hours later, the neck pain is gone while the facial pain persists.

Has this happened to anyone else?

Also, the Lamictal is the only thing I’m taking. It is supposed to prevent the pain from starting but now that I have pain is there something I can take to treat the pain that someone here has had success with? I’d like to call my neurologist (who prescribed the Lamictal) to ask for something else to take only when pain presents itself.

Oh my gosh, it must have been awful for you if you fell over. Mine is more severe sometimes than others. It will move from the throat and at first is like a strong throb that really hurts. Then it is still there but not as severe…until the next time it happens. Just happened again as I was typing. I have never had chin pain but usually I cannot even touch my upper lip or nose. Hoping you and everyone else finds relief. It is so hard to explain TN to people who haven’t experienced it.

Karen, I have the neck pain also, used to go down the left side, then switched to the right hand side and since then hasnt touched the left side at all. But it is bad, and sometimes will be my first sign an attack in my face is coming. It started for me a few years ago, and I hate it, it also feels like the gland under my jaw below the ear is swollen painfully also. Doctors can’t figure it out for me, so if you get answers please let me know what it is??

Cheers ~ Kerry

Karen Brown said:

I’ve been having TN pain this week for the first time since I started taking Lamictal three times a day (about 3 weeks ago). I believe this current bout has been brought on by some stressful situations both at home and work. It’s tough to go to bed in pain and wake up in pain. Thankfully it hasn’t been unbearable (more like a 5 or 6 on a scale of 1-10).

But, this morning, for the first time, I awoke with not only pain on the right side of my face (my TN side) but along the right side of my neck. It wasn’t my throat that was sore but my neck. It didn’t feel like a muscle pull. It felt like the same kind of achy throbbing pain I get on the side of my face. Like I said, this was a first and now, 6 hours later, the neck pain is gone while the facial pain persists.

Has this happened to anyone else?

Also, the Lamictal is the only thing I’m taking. It is supposed to prevent the pain from starting but now that I have pain is there something I can take to treat the pain that someone here has had success with? I’d like to call my neurologist (who prescribed the Lamictal) to ask for something else to take only when pain presents itself.

Thanks Susan, it was awfully embarrassing to fall over and yet the pain in my head and ear left me gasping for breath it was lightning fast, excusing the awful pun there, in the time it took me to blink I was going down. And I thought it was bad before my ear, neck & throat got involved… Doctors where I live in Queensland, Australia seem to almost be dumber than anywhere else. I wish I lived in another state when it comes to my health care, I just love my home so much I don’t want to lose it by having to move interstate.