I just wanted to discuss this again and looking for feedback from other members please. I posted a question about this a few months ago and others have as well. My symptoms seem to be progressing though.
Up until this tongue issue on the right I have had ATN on my left side only and it is being controlled very well with Amitriptyline.
I have had numbness, tingling and sort of achiness on the right side of my tongue for a few months. It does come and go and the location seems to change slightly. Some weeks it hasn't been there at all, I don't think. It doesn't really hurt, it is just very annoying and starting to cause me a lot of anxiety.
Over the past couple of weeks it seems that it there everyday. I am also getting tingling around it and on the roof of my mouth, little tiny nervy, shooting pain through some teeth, top and bottom, as well as some twitching under my lip--all on the right side.
None of these symptoms are really painful at this point but are noticeable especially because I experienced most of them on the left side. The tongue and roof of the mouth I did NOT have on the left though.
I am waiting to see a specialist and am unsure about what to do at this point. Considering going to my GP again but I know that if it is TN she will have nothing to offer.
My TN has always been on the right side and when the " unbearable strikes hit " my tongue would go numb and stay that way for several minutes after pain subsided. Tongue is def in play with TN. Carbamazepine has worked for me although side affects truly suck.
I get tongue pain but it is a very nasty, deep rooted ache, it radiates into my throat and under my jaw into my ear canal. This is a similar but different pain from TN. It's nastier if that is at all possible. Someone today pointed out glossopharyngeal neuralgia to me and I went and read about it... :( I'm not happy... my neuro should be discovering these things not me...
I also have severe tongue pain and the neuro doctor told me I had GPN (glossopharyngeal neuralgia) that was 8 years ago and I still get bad pain episodes on the right side of my tongue. Somedays I cant talk or eat. It does go in remission but i have had pain for the last 9 months. It appears when the weather changes it gets worse. I am claiming my healing and trust in God for deliverance from this pain. Dont give up!
I've been with TN for a couple of years, you can say I am new to TN. Up until the summer my pain was only on my right side, When I took my daughter to college, my tongue started to hurt. I couldn't swallow. It was terrible. With Lyrica I controlled it, until now. It started again, and a tingling feeling in my lips. I'm afraid that the pain will hit again. I hate this. I don't want this anymore. When I went to the Neuro he gave me another medicine, that I didn't buy, because Lyrica controlled it very well. Now I have to go and buy Baclofen ( first time I heard it).
Can't remember if I replied to this last time you posted this question…I use Cepacol throat lozenges that have benzocaine in them to numb the tongue burning. I think Sucrets have benzocaine as well, but it's a smaller amount, so don't use them as often as the Cepacol. It's nice to treat the pain as is needed, and treat only the part that hurts as opposed to treating the whole body for this teeny tiny area.
I have taken Baclofen but it was for my back. My pain doc stopped giving it to me, he is stingy but that's a good thing. I am going to ask for it back as it seems to be good for TN and if I have GPN well that too. I only noticed a bit of increased energy on the Baclofen but it may have been an antidepressant I was taking at the time. I really need these doctors to listen to me though..
I see people talking about the mouthwash but I dont think that will help me :( The pain I get in my tongue is not surface pain and feels deep within the muscle. I am interested in the lidocaine creme for my face though.
Yes, the tongue pain that I am feeling does feel very different from the other pain. I think you have Type 1 TN? I have had ATN on the left side for some time now. That fact that I am having problems on the right is scary. I am just trying to figure it all out as I go along.
I have never taken Baclofen but my mother has taken it for issues associated with MS and it did help her. She also didn't have any side effects from it. It would be worth a try for you.
The tongue sensation isn't really painful as much as it is REALLY annoying. I am super aware of where my tongue is all of the time and I don't know what to do with it. Driving me nutty!
My pain seems to be more Atypical. The pain in my tongue will be there for most of the day until it migrates into my teeth and jaw. It is a very numb and tingly sensation though. I am waiting to see a neuro and just not sure what to do in the mean time.
Sadie said:
My TN has always been on the right side and when the " unbearable strikes hit " my tongue would go numb and stay that way for several minutes after pain subsided. Tongue is def in play with TN. Carbamazepine has worked for me although side affects truly suck.
Your TN sounds somewhat similar to mine in that it affects your teeth. The pain in my teeth does radiate but it will stay like that all day. Do you have ATN? I am feeling the same as you right now. My left side ATN has been controlled wonderfully for the past few months. I wasn't sure what to make of this tongue thing on the right but now that it is accompanied by some very familiar tooth pain I am very worried :(
Karla said:
I've been with TN for a couple of years, you can say I am new to TN. Up until the summer my pain was only on my right side, When I took my daughter to college, my tongue started to hurt. I couldn't swallow. It was terrible. With Lyrica I controlled it, until now. It started again, and a tingling feeling in my lips. I'm afraid that the pain will hit again. I hate this. I don't want this anymore. When I went to the Neuro he gave me another medicine, that I didn't buy, because Lyrica controlled it very well. Now I have to go and buy Baclofen ( first time I heard it).
Wow, I was just looking at your profile and you have been through a lot! I will try the throat lozenges. I guess at this point I am just more worried about what is actually happening in there than how to treat it!
LyndaS said:
Can't remember if I replied to this last time you posted this question…I use Cepacol throat lozenges that have benzocaine in them to numb the tongue burning. I think Sucrets have benzocaine as well, but it's a smaller amount, so don't use them as often as the Cepacol. It's nice to treat the pain as is needed, and treat only the part that hurts as opposed to treating the whole body for this teeny tiny area.
I really don't know if I have ATN. My Neuro didn't said anything about ATN or TN. He just gave me the medicine. Im just hanging there...If I can eat and talk, I'm fine, I don't mind a little discomfort
justjane37 said:
Hi Karla,
Your TN sounds somewhat similar to mine in that it affects your teeth. The pain in my teeth does radiate but it will stay like that all day. Do you have ATN? I am feeling the same as you right now. My left side ATN has been controlled wonderfully for the past few months. I wasn't sure what to make of this tongue thing on the right but now that it is accompanied by some very familiar tooth pain I am very worried :(
Karla said:
I've been with TN for a couple of years, you can say I am new to TN. Up until the summer my pain was only on my right side, When I took my daughter to college, my tongue started to hurt. I couldn't swallow. It was terrible. With Lyrica I controlled it, until now. It started again, and a tingling feeling in my lips. I'm afraid that the pain will hit again. I hate this. I don't want this anymore. When I went to the Neuro he gave me another medicine, that I didn't buy, because Lyrica controlled it very well. Now I have to go and buy Baclofen ( first time I heard it).
No pain, thank heavens, but my tongue will occasionally feel like it is coming off novicaine: not tingly so much as having odd tastes.
I think I would want to have a neuro consult about symptoms that range below the neck which you feel are related to your TN. I feel like people know when something is related. I don't mean necessarily some spiritual connection, just that one's body is sending signals, and we are the first line of interpretation. You should be taken seriously.
We all respond to meds differently. When I was first diagnosed in the mid-90's, they tried baclofen but it didn't help the pain and interfered with ability to work. Fast forward through a successful MVD with 9 pain-free years, a 2nd MVD and then recurrence after only 9 months and I have been trying this, that & the other thing for the last 6 years. Recently I was put on baclofen for a problem with non-acid reflux and I thought hey, maybe it will help my TN pain. I have been on it for 6 days (still titrating up to the recommended dose) and I have been doing nothing but sleeping, feeling off-balance like I will fall at any minute, and nauseated with loss of appetite. The worst part is that it has done nothing to help my reflux nor has it helped with any pain relief. We are all different. You just have to try it and see what happens. Best of luck to you.
justjane37 said:
Hi Karla,
Your TN sounds somewhat similar to mine in that it affects your teeth. The pain in my teeth does radiate but it will stay like that all day. Do you have ATN? I am feeling the same as you right now. My left side ATN has been controlled wonderfully for the past few months. I wasn't sure what to make of this tongue thing on the right but now that it is accompanied by some very familiar tooth pain I am very worried :(
Karla said:
I've been with TN for a couple of years, you can say I am new to TN. Up until the summer my pain was only on my right side, When I took my daughter to college, my tongue started to hurt. I couldn't swallow. It was terrible. With Lyrica I controlled it, until now. It started again, and a tingling feeling in my lips. I'm afraid that the pain will hit again. I hate this. I don't want this anymore. When I went to the Neuro he gave me another medicine, that I didn't buy, because Lyrica controlled it very well. Now I have to go and buy Baclofen ( first time I heard it).
Yes, the tongue pain that I am feeling does feel very different from the other pain. I think you have Type 1 TN? I have had ATN on the left side for some time now. That fact that I am having problems on the right is scary. I am just trying to figure it all out as I go along.
I have never taken Baclofen but my mother has taken it for issues associated with MS and it did help her. She also didn't have any side effects from it. It would be worth a try for you.
The tongue sensation isn't really painful as much as it is REALLY annoying. I am super aware of where my tongue is all of the time and I don't know what to do with it. Driving me nutty!
Hi, Quite a coincidence that this topic has just turned up today. I presently have a 'flare-up' of neuralgia and it is affecting the right lower jaw and the side of my tongue. Painful to talk, eat or drink.
Have no helpful suggestions, but just wanted to say that you are not alone with this horrible affliction. Hope someday that there will be a breakthrough for a positive cure.
Hi Karla, I wanted too let you know you are not alone or experiencing something uncommon to us with TN. I have Atypical TN (20yrs). I have had Gamma Knife on both sides of my head. It has help a lot in that I have a 24/7 migraine and post GK I do not have as much migraine pain breaking thru the my meds.
To address your current situation I want you to know I also have the same problem. It started several years ago when I was getting a tingling/numbness on the area above my lips and then my upper lip. This was an off/on thing for weeks. Asked my neuro guy about it and he had no idea what it was. The numb/tingling then started to radiate up into my nose and become a real problem in my nose. But it was also moving down into my mouth. So at one point last year I had the left side of my tongue completely tingling/numb all the time. It would also involve the side and roof of my mouth (it would come and go). This lasted about 2 months and then one day it stopped! A few days latter it was the right side of my tongue that was feeling just like the left had. Wow. I was really puzzled. I talked to my GP, I went to a ENT and neither one knew what was up. I was sure it was ATN related.
It was last year when I found Ben’s Friends and I was reading about Glossopharyngeal Neuralgia did I realize that was what the tongue problems had to be. Also for years I have been talking to my neuro doc about the pain in across the back of my tongue and throat, and gagging problems that he always dismissed.
Note, the numbness in the lips, tongue, etc., is not painful for me. So I have not taken anything for pain. The nose pain is some of the worst I have experienced in my life and I have constant daily pain. I am just started a nose spray with lidocaine from my GP. The nose pain knocks me to my knees.
Also I have had good experience with topical lidocaine. My dentist gives to me. It is what they rub on your gum before they give a shot. I use this for breakthrough TN in the gum area…
I take so many other meds. It is the only way for me to make thru this pain, plus my great husband who is so loving…I am quite lucky.