I was wondering if any one else here suffers the way I do. It affects my throat. MY throat hurts with every swallow. At times my tongue hurts and burns. Some days when its bad my head gets all foggy and hurts. It feels like I have an ear infection. My Doctor told me that I had a virus and it damaged my trigeminal nerve. It's been 2 years this September that I am suffering with this. I hate the person that I became. I often feel sorry for my self. I used to be so happy and carefree until this monster came and stole my life. I often have to push myself to go out and do things, the meds make me tired and give me a fuzzy head. I get moody all the time. I am thankful my family has been very understanding and supportive of me. I feel like I let them down!
Hi,
I can't confirm that my symptoms were TN related but I can tell you that I went to two different ENT's because I could swear that I had a sore or growth in my throat and I was thoroughly scoped by one of them to find nothing wrong. Then I did go to an instacare because I was certain that I had an ear infection but again nothing was wrong. My tongue was one of the first places that the burning started in but just the right side of my tongue. I've been dealing with these kinds of things for years now and the more I learn the more I can tie things together. So for me anyways I feel confident that all of my invisible ailments in my head over the years are because of this but that is just how I feel about it. I too have experienced the despair of loosing who you once were before all of this. So many of us have to go through this personal transformation because it is extremely difficult to accept that this may be your life now. That's a pretty hard blow but there is always hope for remission or good treatment and for me right now I just embrace the days when the pain is tolerable...in fact I consider those to be my pain free days. I too struggle to want to do anything outside, I can barely get myself to the grocery store but I know I will adapt to this eventually. I still have my pity parties but I try to pull myself out of them as best I can. Try to go easy on yourself, this is a huge cloud to see through. The craziest thing is that it's not a bad knee or bad hip or something that can be massaged or do physical therapy with, it's our FACES! What do you do with a completely messed up face? Good luck and I hope you can feel better soon...
Hi Bells, Thanks so much for replying, I have not met or heard of anyone else that has my symptoms. I am very greatful that I found this support group. I only wish I came across it much sooner. Good luck to you and I wish you well....
jasmine,
sounds like you may have glossopharyngeal neuralgia (GPN). It causes pain in throat and ear and sometimes also tonsil and back of tongue. GPN involves 9th and 10th cranial nerves
like TN it causes HORRIFIC pain.
hope you find lasting relief soon.
.
Hi there, My pain started deep in the left ear and spread across the left side of my face 3 years ago. I went to the doc and he said it was an ear infection. I asked him why the left side of my face hurt as well and he said that happens sometimes. The thing was, it kept coming back and I kept telling myself it was just a real bad ear infection, why even go back to the doc so he could tell me that. About a year later, I went to another doc after the city changed our insurance. Guess what he said, ear infection. He said I could go to a specialist, but they cost 100$, so I didn't go. Three months ago, I had enough, it was getting so bad I couldn't think straight. My ear, the left side of my nose, the left side of my face, and above my left eye hurt four to five times a week sometimes all day long without a break. I paid the 100$ to see an ent. She chk'd me out and said there was nothing wrong with my ears, throat, or nose. She did say that she thought she knew what was wrong with me. She said she thought it was something called, Trigeminal Neuragia.
1 month later I got to see a neurologist. He checked me out and did an mri. He confirmed what the ent said. Its nice to know we're not nuts. And yes, sometimes my throte hurts too. It feels scratchy when I swallow. I go see a surgeon in a week to talk about an MVD. I would really like to do that instead of these nasty pills. I'm on 600 Gabitpentin 3x's a day and hydrocodone when I need it. Good luck, don't let the world get you down. When I was young there was this doc on the show MASH. He always said, "When the world gets you down, just pull down your pants and slide on the ice."
I guess that means don't let the stupid stuff get you down, and in the end it's all stupid stuff....:)
Hi Jasmine,,,how weird, I had totally forgotten about the ear pain I went through, I went to a few Dr.'s and told them of this incredible pain in my ear and that I had had a broken eardrum when I was little. They checked it and said no, and no, and no, I thought I was going insane, they looked at me that way too. I bought over the counter ear stuff and it did help a bit, but I couldn't tolerate any loud noise at all!! I didn't know that a year or so later I would be diagnosed with TN.
I don't usually get a sore throat,though I smoke so it's hard to tell, lol.
I know it totally does change your life! It's been 41/2 years for me and it took me at least 21/2 years to settle down with acceptance! I'm new too and I think if we had of found this site earlier.....but better late than never.
I have cried and yelled and prayed and begged and of course been depressed. I live alone and that has it's upside and downside, I crave to go do fun things in the summer but I can't. I have back/neck/knee/shoulder/ankle osteoarthristis too.
It's super hard but I have found new interests that keep me going in between sad days.
Best to you,
Cheryl
As my TN progressed prior to my MVD in April, I would get the shock like pain of TN 1 down one side of my throat.
This side of my bilateral TN was always just TN2, but as it progressed and became resistant to meds I experienced TN1 shocks as well.
My symptoms began with what I now call my choking feeling which included pain down the right side of my throat. I had MVD in July but I still have that feeling in my throat, just not as bad. I also can’t swallow anything really scratchy like nacho chips or really dry toast. That pain progressed to the entire right side of my face before MVD and also included a terrible pressure that made me feel like my head was going to explode. A few months before my MVD I also had the shooting pains in my ear. I still feel that too but not as bad. I can put my finger right on the spot and it’s sore all the time. The ear pain felt like an ear infection. When I went to my neurosurgeon and told him about the pains in my ear and I showed him the spot he knew exactly what I was talking about.
When I had my MVD, 4 nerves were padded because of compression and scar tissue the neurosurgeon found. The trigeminal nerve was the worst but the other three that were rubbed with scar tissue were the glossopharyngeal, vestibulocochlear, and the vagus nerves. After hearing this, my symptoms made sense.
I felt just like you did before I had MVD. I was so sad my life was changed so much. I had been very active, hunting, fishing, gardening, camping, riding horse and hiking. After TN hit, I didn’t want to do anything besides sleep and the fogginess from the meds left me feeling incompetent at work (and I definitely was incompetent). I was very fortunate to have an understanding supervisor and I am so thankful to the members on this site for pointing me to Dr. Casey for my MVD. I also researched nonstop the entire time until I felt so comfortable with my decision to have MVD, I never second guessed my decision once. I think the researching helped take the focus off my pain and the side effects of the meds. It really helped my depression. MVD isn’t for everyone but keep researching, reading on this site and talking to doctors. At least then you can feel you are taking an active role in feeling better and getting your life back. It helped me feel had at least some control over it.
My pain started in the ear almost four years ago. I went though the whole misdiagnosis of ear infection etc. sometimes I felt like a red hot bolt was being twisted between my ear and throat, or that I had a foreign object in my throat. But I also had all the facial issues as well. Then HFS. It was hard to figure out what was what. I finally had MVD four weeks ago. Fifth and Seventh nerve decompressed. Ninth nerve was inspected. A vessel runs along side it but there was no obvious indentation like with fifth and the vessels that looked problematic were entwined right at the root entry zone. It was decided preoperatively not to cut this nerve. I’m still have some ear/throat pain and swallowing issues. Will discuss this at follow-up. I’ve had fibromyalgia since '95 so this could be part of the issue.
I have been to hell and back but feel optimistic now that I am in good care. I have also accepted that this is my life now. Some days are better than others. There is always change.
It is important to find a neurologist you trust and can go forward with. Also consultation with a neurosurgeon for possible MVD. Find someone who can advocate for you. And if you can’t, be that person for yourself.
I did a lot of researching too but sometimes that just got to me and I couldn’t get out of the pain at all, it became all of me. This is dangerous. So what I did, was take on something totally new and absorbing. I borrowed my daughter’s electronic piano and learned how to play a few pieces. This was extremely absorbing and gave me pleasure. Please find an absorbing, pleasurable task, even if it’s really hard. It will interrupt the viscousness of pain. It won’t take it away, but it will help.
Keep Heart
Bellalarke
Hi ithurts, love your name by the way!! Thanks for the info, I'll look into that. Stay well
ithurts said:
jasmine,
sounds like you may have glossopharyngeal neuralgia (GPN). It causes pain in throat and ear and sometimes also tonsil and back of tongue. GPN involves 9th and 10th cranial nerves
like TN it causes HORRIFIC pain.
hope you find lasting relief soon.
.
houston man said:
Hi there, My pain started deep in the left ear and spread across the left side of my face 3 years ago. I went to the doc and he said it was an ear infection. I asked him why the left side of my face hurt as well and he said that happens sometimes. The thing was, it kept coming back and I kept telling myself it was just a real bad ear infection, why even go back to the doc so he could tell me that. About a year later, I went to another doc after the city changed our insurance. Guess what he said, ear infection. He said I could go to a specialist, but they cost 100$, so I didn't go. Three months ago, I had enough, it was getting so bad I couldn't think straight. My ear, the left side of my nose, the left side of my face, and above my left eye hurt four to five times a week sometimes all day long without a break. I paid the 100$ to see an ent. She chk'd me out and said there was nothing wrong with my ears, throat, or nose. She did say that she thought she knew what was wrong with me. She said she thought it was something called, Trigeminal Neuragia.
1 month later I got to see a neurologist. He checked me out and did an mri. He confirmed what the ent said. Its nice to know we're not nuts. And yes, sometimes my throte hurts too. It feels scratchy when I swallow. I go see a surgeon in a week to talk about an MVD. I would really like to do that instead of these nasty pills. I'm on 600 Gabitpentin 3x's a day and hydrocodone when I need it. Good luck, don't let the world get you down. When I was young there was this doc on the show MASH. He always said, "When the world gets you down, just pull down your pants and slide on the ice."
I guess that means don't let the stupid stuff get you down, and in the end it's all stupid stuff....:)
Jasmine said:
Hi Houston man....Seems like we all had to go through a few Doctors till we found one that knew what TN is. Doctors need to be more educated on this. I wish you lots of good luck, Thanks so much for replying. Stay well
houston man said:Hi there, My pain started deep in the left ear and spread across the left side of my face 3 years ago. I went to the doc and he said it was an ear infection. I asked him why the left side of my face hurt as well and he said that happens sometimes. The thing was, it kept coming back and I kept telling myself it was just a real bad ear infection, why even go back to the doc so he could tell me that. About a year later, I went to another doc after the city changed our insurance. Guess what he said, ear infection. He said I could go to a specialist, but they cost 100$, so I didn't go. Three months ago, I had enough, it was getting so bad I couldn't think straight. My ear, the left side of my nose, the left side of my face, and above my left eye hurt four to five times a week sometimes all day long without a break. I paid the 100$ to see an ent. She chk'd me out and said there was nothing wrong with my ears, throat, or nose. She did say that she thought she knew what was wrong with me. She said she thought it was something called, Trigeminal Neuragia.
1 month later I got to see a neurologist. He checked me out and did an mri. He confirmed what the ent said. Its nice to know we're not nuts. And yes, sometimes my throte hurts too. It feels scratchy when I swallow. I go see a surgeon in a week to talk about an MVD. I would really like to do that instead of these nasty pills. I'm on 600 Gabitpentin 3x's a day and hydrocodone when I need it. Good luck, don't let the world get you down. When I was young there was this doc on the show MASH. He always said, "When the world gets you down, just pull down your pants and slide on the ice."
I guess that means don't let the stupid stuff get you down, and in the end it's all stupid stuff....:)
Bellalarke said:
My pain started in the ear almost four years ago. I went though the whole misdiagnosis of ear infection etc. sometimes I felt like a red hot bolt was being twisted between my ear and throat, or that I had a foreign object in my throat. But I also had all the facial issues as well. Then HFS. It was hard to figure out what was what. I finally had MVD four weeks ago. Fifth and Seventh nerve decompressed. Ninth nerve was inspected. A vessel runs along side it but there was no obvious indentation like with fifth and the vessels that looked problematic were entwined right at the root entry zone. It was decided preoperatively not to cut this nerve. I'm still have some ear/throat pain and swallowing issues. Will discuss this at follow-up. I've had fibromyalgia since '95 so this could be part of the issue.
I have been to hell and back but feel optimistic now that I am in good care. I have also accepted that this is my life now. Some days are better than others. There is always change.
It is important to find a neurologist you trust and can go forward with. Also consultation with a neurosurgeon for possible MVD. Find someone who can advocate for you. And if you can't, be that person for yourself.
I did a lot of researching too but sometimes that just got to me and I couldn't get out of the pain at all, it became all of me. This is dangerous. So what I did, was take on something totally new and absorbing. I borrowed my daughter's electronic piano and learned how to play a few pieces. This was extremely absorbing and gave me pleasure. Please find an absorbing, pleasurable task, even if it's really hard. It will interrupt the viscousness of pain. It won't take it away, but it will help.
Keep Heart
Bellalarke
Jasmine said: Hi Bellalarke, So sorry to read about all you went through. I hope your surgery was a success and that you will be feeling much better. I am not a candidate for surgery, As I mentioned my Doctor told me that mine was caused by a virus that damaged my trigeminal nerve. We are trying to heal the nerve with the meds. I was told some people recover and some don't. My pain did get a lot better since I started the meds last October. But as you know every day is a battle. Thanks so much for replying, it helps a lot to hear from other sufferers. I wish you well. Take care
Bellalarke said:My pain started in the ear almost four years ago. I went though the whole misdiagnosis of ear infection etc. sometimes I felt like a red hot bolt was being twisted between my ear and throat, or that I had a foreign object in my throat. But I also had all the facial issues as well. Then HFS. It was hard to figure out what was what. I finally had MVD four weeks ago. Fifth and Seventh nerve decompressed. Ninth nerve was inspected. A vessel runs along side it but there was no obvious indentation like with fifth and the vessels that looked problematic were entwined right at the root entry zone. It was decided preoperatively not to cut this nerve. I'm still have some ear/throat pain and swallowing issues. Will discuss this at follow-up. I've had fibromyalgia since '95 so this could be part of the issue.
I have been to hell and back but feel optimistic now that I am in good care. I have also accepted that this is my life now. Some days are better than others. There is always change.
It is important to find a neurologist you trust and can go forward with. Also consultation with a neurosurgeon for possible MVD. Find someone who can advocate for you. And if you can't, be that person for yourself.
I did a lot of researching too but sometimes that just got to me and I couldn't get out of the pain at all, it became all of me. This is dangerous. So what I did, was take on something totally new and absorbing. I borrowed my daughter's electronic piano and learned how to play a few pieces. This was extremely absorbing and gave me pleasure. Please find an absorbing, pleasurable task, even if it's really hard. It will interrupt the viscousness of pain. It won't take it away, but it will help.
Keep Heart
Bellalarke
I want to say thank you to all of you that took the time to reply. Your comments and concerns have been very helpful. Feel good everyone!! Thanks Jasmine
Hello,
How long did you take the Lyrica before you got relief? Also, was your throat, tongue, and ear pain constant? I'm struggling with this pain and had multiple biopsies done for throat cancer. All came back inconclusive. I have pain in back of throat, ear, tongue hurts and burns, and back molar pain. I'm so worn out from this. Please tell your experience with Lyrica and how long it took to get relief.
LJ said:
Hi Jasmine, A year after getting told I had TN, I had a really sore ear, I went to doctor who sent me away as he could not see infection. Once the pain got worse I went to the walk in clinic and she said "I cannot see and ear infection"...However I will do another test*. They called me the next day to say I basically had Shingles in my ear. She has seen a small lesion and it triggered her to do the test. It is often missed and as an ear infection is not seen, you are sent away. I was put on anti virals and it did the trick, HOWEVER, not before it messed with my already messed up face. I was left with problems swallowing. and what felt like permanent sore throat, and back of the tongue, but only on the right side of my throat!
One day I had a huge flare up of TN and went to the doctors where I was in tears asking for something more than Tegretol. He gave me Lyrica. For ME it has been a godsend it has been amazing and no negative side effects. Only positive ones, it has caused so many symptoms to be diminished. One of the side effects I actually got was the elimination of my hot flashes ( due to my age) AMAZING. Apparently Lyrica has been used to reduce these in some menopausal women, In my case they vanished!
I have twice had breakthrough pain, and it brought me to my knees, and I don't know why, but each time I had the breakthrough my throat hurts again and I have trouble swallowing The whole right side of my head hurts, in so many ways. All I know is Lyrica and tegretol helped me, I use the minimum dose that dulls the pain and stick with it. Keep on until they really look at what works for you.
I also was choking every time I ate. The nerve damage caused my left vocal cord to become paralyzed. It was terrible, even while drinking I was choking. It got much better now. The Gabapentin helped with that. Thanks so much for your reply!! All the best to you, I wish you well.
Deej said:
My symptoms began with what I now call my choking feeling which included pain down the right side of my throat. I had MVD in July but I still have that feeling in my throat, just not as bad. I also can’t swallow anything really scratchy like nacho chips or really dry toast. That pain progressed to the entire right side of my face before MVD and also included a terrible pressure that made me feel like my head was going to explode. A few months before my MVD I also had the shooting pains in my ear. I still feel that too but not as bad. I can put my finger right on the spot and it’s sore all the time. The ear pain felt like an ear infection. When I went to my neurosurgeon and told him about the pains in my ear and I showed him the spot he knew exactly what I was talking about.
When I had my MVD, 4 nerves were padded because of compression and scar tissue the neurosurgeon found. The trigeminal nerve was the worst but the other three that were rubbed with scar tissue were the glossopharyngeal, vestibulocochlear, and the vagus nerves. After hearing this, my symptoms made sense.
I felt just like you did before I had MVD. I was so sad my life was changed so much. I had been very active, hunting, fishing, gardening, camping, riding horse and hiking. After TN hit, I didn’t want to do anything besides sleep and the fogginess from the meds left me feeling incompetent at work (and I definitely was incompetent). I was very fortunate to have an understanding supervisor and I am so thankful to the members on this site for pointing me to Dr. Casey for my MVD. I also researched nonstop the entire time until I felt so comfortable with my decision to have MVD, I never second guessed my decision once. I think the researching helped take the focus off my pain and the side effects of the meds. It really helped my depression. MVD isn’t for everyone but keep researching, reading on this site and talking to doctors. At least then you can feel you are taking an active role in feeling better and getting your life back. It helped me feel had at least some control over it.