Yes it does help. The tongue pain I am experiencing is driving me crazy. It brings me comfort (and sanity) to hear of other people that have had the same thing. Although, I am so sad that all of these people have had to endure this and all of the other TN symptoms.
I am glad that your surgery was a success for you :)
brownkat said:
justjane37,
When I saw this, I had to reply. My TN pain started with a burning sensation on the right side of my tongue. I went to the dentist because every time my tongue touched my teeth I had pain. It wasn't until I had two healthy teeth removed that I realized the pain was coming from my tongue and not my teeth. The pain would come and go. Sometimes it really hurt to eat because of the food temperature setting off the pain in my tongue. Eventually (about 6 years later), the pain was unbearable. I had my MVD about a year ago and the pain disappeared immediately after surgery.
As you can tell from all of the stories on this site, TN manifests itself in many ways, depending on which branch of the nerve is involved. Hope this helps.
I am so sorry Aunt Nicki you had such a horrible and insensitive visit with your neurologist. I would call their office and demand a referral asap, if you have waited 2 wks, you probably fell through the cracks of the system, hate to say. I was just at a dr apt yesterday because I am searching for a new primary care physican and I did the same thing as you did. I started to cry and then I was embarrassed and I told him , if we would have met a year ago, you would have met a totally different person, a person who would be smiling and joking around instead of crying like a desperate , helpless woman. I was lucky in that he at least listened and looked like he cared.. I have had to educate the people around me so that I can feel like they really understand. My roommate who is gone for 4 months in florida, I already know he will never understand, he is basically selfish and I wont have any unrealistic goal to make him understand... but my mom... has listened and listened and I know she understands as much as anybody can who does not have this. Can you try to find just one person in your life , who is descent , whom you can Make understand??? Perhaps, when you do walk into your next pain management dr's office, you can walk in with assertiveness and say, I can tell you right now, I will not take any medication that is potentially addicting so, I hope we are on the same page as this is concerned. I don't know about others, but I have really changed through all this suffering. I am more compassionate to those who deserve it, and I am also a hell of a lot more assertive to people who don't know what they are talking about or to dr's that I can tell don't care, etc... I know as great as this support group is online, it still is online, and you really need to get atleast one person in your life who can understand and support and care about you. Perhaps, you can join a local support group with folks who have chronic pain issues...
paddy said:
Nicki, don't be scared about the pain clinic... in my experience the last thing pain management doctors want to do is get you hooked on narcotics. They are all about getting you off drugs and managing the pain through mind/body techniques. I am off all meds now because they were doing nothing for the pain, and ruining my life into the bargain. With a few strategies and techniques, I can manage the pain. If you want to cry and talk, do it here, honey... few neurologists are much good for support emotionally.
Aunt Nicki said:
I also have tongue pain. I recently told my neurologist about it and he just says i's part of my TN. I told him the way it feels to me that if when he was a child did he ever stick a 9 volt battery on his tongue and that well it feels like I have a thousand 9 volt batteries on my tongue all the time. It is quite annoying and is usually followed with teeth pain. I'm so tired of feeling like I have a mouth full of rotten teeth and have no bad teeth. This is the 1st time I went to the neurologist and I felt like he couldn't get rid of me fast enough even though I was crying and telling him i'm not the same person I used to be and that I need to talk to someone. It's been 2 weeks and his office hasn't contacted me about any referrals. He wants to send me to pain management doctor which i'm scared about because a friend told me all they'll do is get you addicted to narcotics which is something i've tried my best not to do. I feel so lost right now. I feel like I just exist in a world of pain by myself that no one else in my life understands. They don't see a wound so they just don't get it :'(
I doubt you are "Just Jane"… but Hi anyway. I looked up where all the branches and sub-branches of the trigeminal nerve run in our faces, and there are some that serve our tongue, as well as our teeth and our lips. I researched this because I began to develop burning, tingling pain in these areas after a TN surgery--always a risk--but it helped with my huge strikes so it was still worth it. I get relief for a few minutes with very cold foods and drinks--frozen yogurt is a regular part of my diet!
It worsens, like all pain, when I am tired, stressed, too hot, too cold, thirsty, hungry, or overly emotional. I have found Lamitrogene the best med for mine, however, that won't likely be the same for you. I also take Topomax because I developed severe migraines early on in my TN journey.
You are never alone, Jane. There will always be another door to walk through.
Yes! Frozen treats have become my favorite menu item! Milkshakes, ice cream, frozen yogurt or juice pops!!!
I am sorry that your surgery left you with some pain but glad that it helped overall.
Red has suggested the possibility of GPN with the new symptoms on my right. Time will tell I guess. Apparently there is never a dull moment with TN and my journey continues...
I am researching medication at this point and getting set for another MRI.
Rest is certainly the most important thing right now and I have noticed that my pain intensifies under all of the circumstances that you describe. Trying to remain calm above all else.
Thanks!
Judi from Virginia said:
I doubt you are "Just Jane"… but Hi anyway. I looked up where all the branches and sub-branches of the trigeminal nerve run in our faces, and there are some that serve our tongue, as well as our teeth and our lips. I researched this because I began to develop burning, tingling pain in these areas after a TN surgery--always a risk--but it helped with my huge strikes so it was still worth it. I get relief for a few minutes with very cold foods and drinks--frozen yogurt is a regular part of my diet!
It worsens, like all pain, when I am tired, stressed, too hot, too cold, thirsty, hungry, or overly emotional. I have found Lamitrogene the best med for mine, however, that won't likely be the same for you. I also take Topomax because I developed severe migraines early on in my TN journey.
You are never alone, Jane. There will always be another door to walk through.
I get tongue troubles too, burning on the right side middle to the front constantly 24/7. Some days I get the sensation of broken glass and hairs stuck on that area plus the burning. I can't even remember what a normal mouth feels like anymore. On bad days I take a thermos of crushed ice if I go out anywhere. I was scared to try the ice because of the random shocks in my teeth everyday but out of desperation I tried it and ice does gives me a little relief and doesn't make the tooth pain worse. My neurologist said it's because it gives the nerves something else to process. I kind of rely on it now, even though it's not very convenient to go out with, but hey its cheap! If I have to talk I'll suck on an ice chip and it makes talking less painful for me. "Normal" is gone so I'm learning to adapt, even if in strange ways :)
Hi Jane, So what exactly is GPN?? I am so struck how so many on here have seemed to accept the situation and have found successful ways of coping and adapting. It is giving me hope that one day I too may be calm and cool about everything. Right now at only one yr into this, I am still wanting to kick and scream no, no, say it isn't so kind of thing... I want to go back to my "normal" self.
GPN stands for Glossopharyngeal Neuralgia. You can look it up. It is a different nerve that affects part of the tongue, throat, ear and tonsils. I was thinking the same thing about how people have learnt to cope with this terrible pain. The tongue pain I have been experiencing is horrendous compared to the tooth pain I am used to now. I have been in utter panic mode over this whole thing.
I have had a horrible and very scary few days! I have been to the ER three times this weekend. I haven't slept or eaten in four days and feel like I have fought a war. I want to go back to my "normal" self too, Elvera. I am having all of these new symptoms on the right side and having breakthrough pain on the left. My blood pressure has been through the roof, which is certainly exasperating the whole thing. I am starting on a new medication and the doctor gave me some Lorazepam to calm me down a bit so hopefully I can get some sleep. Not fun!
I am not able to make much sense about what is going on either. My tongue pain really moves around a lot. All on the right side but other than that it seems to jump all over the place. I am having intense bilateral symptoms, though.
Cleo said:
My right side tongue has been numb in the v3 area of the tongue since my mandibular nerve was damaged in my lower right back jaw. My type of numb in the tongue doesn't move around or go away. For some reason I never had any 24/7 burning flame torch attached to an electrical outlet in my jaw or the damage site like I did in my tongue. But my right side jaw feels like I had a vice grip installed on it about 4 teeth up from the damage site. None of it moves around in my case. I don't have constant burning or shocking in my tongue 24/7 anymore possibly due to having scar tissue removed during an external neurolysis of the lingual nerve at 9 months past injury. I spent many years busting ice with my teeth and banging my fingertips on this keyboard trying to figure out this trigeminal nerve thing! The trigeminal nerve only exists in a portion of the tongue. any unusual symptoms outside that area of the tongue is indication of another nerve involved.
As others have told you, my neurologist told me the tongue is controlled by a different nerve than that in TN which causes the pain in the face. I was also warned by my neurosurgeon that the MVD I had 15 months ago may not resolve the tongue pain since that is symptomatic of atypical TN as opposed to typical TN. For me all the pain was on the left side.
The MVD surgery was a great success and I don't have the face pain, however, I did still have tongue pain. The tongue pain is gradually improving post surgery, but I don't know if that is just because it could be going into "remission". I am praying for the former. In the meantime, I can tell you that since I'm not dealing with the face pain it is much easier to ignore the tongue pain. People also say I'm back to my "old" self. While brain surgery is an extreme and you can't possibly be 100% either with TN or after surgery I am grateful I went that route.
I am glad that your surgery was a success for you. I am just learning about all of this as I go and it is quite the journey. I think the tongue pain has freaked me out so much because I didn't have it on the other side and it is very different from the tooth pain.
I hope that your tongue pain continues to improve :)
Grandmasdream said:
As others have told you, my neurologist told me the tongue is controlled by a different nerve than that in TN which causes the pain in the face. I was also warned by my neurosurgeon that the MVD I had 15 months ago may not resolve the tongue pain since that is symptomatic of atypical TN as opposed to typical TN. For me all the pain was on the left side.
The MVD surgery was a great success and I don't have the face pain, however, I did still have tongue pain. The tongue pain is gradually improving post surgery, but I don't know if that is just because it could be going into "remission". I am praying for the former. In the meantime, I can tell you that since I'm not dealing with the face pain it is much easier to ignore the tongue pain. People also say I'm back to my "old" self. While brain surgery is an extreme and you can't possibly be 100% either with TN or after surgery I am grateful I went that route.
ER three times?? They have a hard time knowing what to do with us. I would suggest, if I may, that you work with the physician who most helps you with your facial pain, to develop some kind of "emergency response kit" for these awful times of breakthrough pain. I am glad you started on an anti-anxiety-- this kind of pain requires it! At least 80% of people I have worked with who have such pain, also suffer from either depression or anxiety--although I don't know where one starts and the other ends. I have both!
Even if you have GP, the treatment isn't any different…anti-seizures, anti-anxiety meds, sleeping meds, from docs; alternative therapies and other complementary. So, don't think you have to start all over looking for treatment options!
I consider Red the biggest source of info about all things related to cranial nerve neuropathies! SO GLAD he developed this site!! I've known him for years and have great admiration from him. Never hesitate to ask for his help.
You might also gain help from my site, www.GreatPainGreaterGod.com. It's all about my experiences of journeying with severe pain…now in my ninth year. You can do this!!
justjane37 said:
Elvera,
GPN stands for Glossopharyngeal Neuralgia. You can look it up. It is a different nerve that affects part of the tongue, throat, ear and tonsils. I was thinking the same thing about how people have learnt to cope with this terrible pain. The tongue pain I have been experiencing is horrendous compared to the tooth pain I am used to now. I have been in utter panic mode over this whole thing.
I have had a horrible and very scary few days! I have been to the ER three times this weekend. I haven't slept or eaten in four days and feel like I have fought a war. I want to go back to my "normal" self too, Elvera. I am having all of these new symptoms on the right side and having breakthrough pain on the left. My blood pressure has been through the roof, which is certainly exasperating the whole thing. I am starting on a new medication and the doctor gave me some Lorazepam to calm me down a bit so hopefully I can get some sleep. Not fun!
Thanks for this CLEO!!
I too experience an “irritation” (pain) along the left side (middle to front) of my tongue.
I tend to bite down on it as a result of the irritation…weird, but I guess I do this to change/ react to the irritation.
Seeing the diagram of the nerves that affect the tongue confirms to me that it’s all just my mandibular division… I often wondered if it was GN.
Learning something new all the time…appreciate the diagram.
Mimi
Cleo said:
The tongue has several different sections controlled by different nerves. Knowing which part is abnormal can help diagnosis.
I know. The doctors in the ER were actually very sympathetic and knew about TN. There was not much for them to do though. I was definitely freaking out, having a lot of anxiety and not sleeping. This whole right side explosion just took me completely by surprise. My left side has been well controlled with Amitriptyline and has become like an old friend in a way. I know its triggers and its patterns. I never had pain in my tongue on the left side so I've been freaking out about it.
I saw my GP today and I am having another MRI, blood work, trying a new med, have to wear a heart monitor for a couple of days and have a referral to a specialist. She is understanding and I think we are taking the right steps.
The pain in my tongue is not excruciating but my mind is freaking out about it. About what it is. I can deal with the pain but have health anxiety, cancer phobia for sure. I think once I have the MRI I will be able to relax a little about it.
I have been talking to Red about it and, yes, he is very helpful and insightful.
I am very disheartened with these new symptoms. As bad as the left side pain was I thought it was under control. I am only 37, a single mom and own my own home so I do have a lot of pressure on me. I have a 5 year old daughter to care for and need to be with it and functioning. Seeing how quickly this can spiral out of control has really frightened me.
I will definitely check out your website. And thanks for your concern and direction. I would be truly lost without this website and all of the wonderful people on it :)
Judi from Virginia said:
ER three times?? They have a hard time knowing what to do with us. I would suggest, if I may, that you work with the physician who most helps you with your facial pain, to develop some kind of "emergency response kit" for these awful times of breakthrough pain. I am glad you started on an anti-anxiety-- this kind of pain requires it! At least 80% of people I have worked with who have such pain, also suffer from either depression or anxiety--although I don't know where one starts and the other ends. I have both!
Even if you have GP, the treatment isn't any different…anti-seizures, anti-anxiety meds, sleeping meds, from docs; alternative therapies and other complementary. So, don't think you have to start all over looking for treatment options!
I consider Red the biggest source of info about all things related to cranial nerve neuropathies! SO GLAD he developed this site!! I've known him for years and have great admiration from him. Never hesitate to ask for his help.
You might also gain help from my site, www.GreatPainGreaterGod.com. It's all about my experiences of journeying with severe pain…now in my ninth year. You can do this!!
justjane37 said:
Elvera,
GPN stands for Glossopharyngeal Neuralgia. You can look it up. It is a different nerve that affects part of the tongue, throat, ear and tonsils. I was thinking the same thing about how people have learnt to cope with this terrible pain. The tongue pain I have been experiencing is horrendous compared to the tooth pain I am used to now. I have been in utter panic mode over this whole thing.
I have had a horrible and very scary few days! I have been to the ER three times this weekend. I haven't slept or eaten in four days and feel like I have fought a war. I want to go back to my "normal" self too, Elvera. I am having all of these new symptoms on the right side and having breakthrough pain on the left. My blood pressure has been through the roof, which is certainly exasperating the whole thing. I am starting on a new medication and the doctor gave me some Lorazepam to calm me down a bit so hopefully I can get some sleep. Not fun!
I just want to thank everyone for the sage advice. It's sure more than I have received anywhere else. I iwll definitely take it all into consideration. I am also so glad to hear that pain management is not as scary as I was told. I will try my best to find that someone to trust and be there for me but I also think in some ways I have trust issues and either don't trust someone cares that much or I just can't see that they really do. I know my husband loves me but he just doesn't show his feelings very well. He never has so why should I expect him to start showing them now?
paddy said:
Nicki, don't be scared about the pain clinic... in my experience the last thing pain management doctors want to do is get you hooked on narcotics. They are all about getting you off drugs and managing the pain through mind/body techniques. I am off all meds now because they were doing nothing for the pain, and ruining my life into the bargain. With a few strategies and techniques, I can manage the pain. If you want to cry and talk, do it here, honey... few neurologists are much good for support emotionally.
Aunt Nicki said:
I also have tongue pain. I recently told my neurologist about it and he just says i's part of my TN. I told him the way it feels to me that if when he was a child did he ever stick a 9 volt battery on his tongue and that well it feels like I have a thousand 9 volt batteries on my tongue all the time. It is quite annoying and is usually followed with teeth pain. I'm so tired of feeling like I have a mouth full of rotten teeth and have no bad teeth. This is the 1st time I went to the neurologist and I felt like he couldn't get rid of me fast enough even though I was crying and telling him i'm not the same person I used to be and that I need to talk to someone. It's been 2 weeks and his office hasn't contacted me about any referrals. He wants to send me to pain management doctor which i'm scared about because a friend told me all they'll do is get you addicted to narcotics which is something i've tried my best not to do. I feel so lost right now. I feel like I just exist in a world of pain by myself that no one else in my life understands. They don't see a wound so they just don't get it :'(
