Dear all,
My ATN (TN II) is somehow strange. The symptoms are in branch 2 and 3 of the right nerve. The strange thing is that I have complete loss of sensation in the same area that I have the pain. Although the pain is triggered by stress and anxiety, but the loss of sensation is permanent. The times I am free from pain I usually experience silly numbness in the same area, this numbness usually converts to pain after the stress trigger.
Have you experienced something like that?
I have TN1 so I don't experience anything like that. Question: Have you had surgery? I was wondering because some people get Anesthesia Dolurosa from surgery.
Yes, I have ATN - V2 and 3. mostly ear, upper and lower gum/jaw, and side of tongue at very back, some tonsillar area. Mine is idiopathic (they don't know why). But yes, when there is no pain I still have a strange numb heaviness...which I would take as a trade off and I always think...ooohhh, maybe it's going away/healing up. But then....pain always comes back. It's tiring and crazy making and I live with a looming fear of what's really wrong with me, and what I should be doing to find it out.
I'm 40 and this started when I was 38. I take Lyrica and amitryptiline and it makes it bearable...I tell my doctors roughly 40% pain relief.
If you don't mind...do you know cause of yours?
No tiger4nikki I haven't gone through surgery before. I have read about Anesthesia Dolurosa before and It was really strange that some similarity exists.
tiger4nikki said:
I have TN1 so I don't experience anything like that. Question: Have you had surgery? I was wondering because some people get Anesthesia Dolurosa from surgery.
No Purple74, It seems idiopathic also for me. No apparent reason, at least no evidence for organic reason. Some doctors have had theories abut it is psychogenic or psychosomatic but , although I have both anxiety and depression, I think the reverse. I mean that my ATN is a major contributor in my anxiety/depression.
I am also 40, but it started with me when I was about 20, and it increases though time till now.
Purple74 said:
Yes, I have ATN - V2 and 3. mostly ear, upper and lower gum/jaw, and side of tongue at very back, some tonsillar area. Mine is idiopathic (they don't know why). But yes, when there is no pain I still have a strange numb heaviness...which I would take as a trade off and I always think...ooohhh, maybe it's going away/healing up. But then....pain always comes back. It's tiring and crazy making and I live with a looming fear of what's really wrong with me, and what I should be doing to find it out.
I'm 40 and this started when I was 38. I take Lyrica and amitryptiline and it makes it bearable...I tell my doctors roughly 40% pain relief.
If you don't mind...do you know cause of yours?
I have bilateral ATN. I have had chronic diminished sensation on my right side for a long time, but attributed it to another condition. The TN on that side has been around for 10 years, but I did not seek a diagnosis until the pain became constant and unbearable about three years ago. I did have MVD, and now the sensation on that side is back to almost 100 percent.
I have a lot of anxiety...diagnosed OCD prior to all this pain. I do believe that my OCD is exasperating my symptoms, or more likely my anxiety. HOWEVER, if this pain would go away my anxiety would be at a level close to nothing. I had all the OCD tendencies somewhat in check. But there is nothing I fear more than not knowing and poor health. So now, here I am faced with great pain - which to me indicates poor health. However, the dr's say I'm in fine health just have this nerve pain...maybe it will go away, maybe it won't...who knows what caused it. Well, I just can't seem to wrap my mind around that. So I drive myself nuts searching physically and outside myself for a cause. When a person opens their mouth as wide as I do, and sticks their tongue out as far as I do, as many times a day as I do...I have no doubt that physical pain is increased. Such a nasty cycle. My doctor has been suggesting that I have two issues going on...one being the real and atypical trigeminal neuralgia and the other being my OCD. He says he is actually more concerned about the OCD. Whatever...if the pain went away I wouldn't be sitting in his office obsessing about it.
Hi Christine, I am happy to know that youe sensation went back, so was it pressure from a blood vessel on the nerve? and was it diagnosed diretly by MRI or was it theorized by doctor?
I have bilateral ATN. I have had chronic diminished sensation on my right side for a long time, but attributed it to another condition. The TN on that side has been around for 10 years, but I did not seek a diagnosis until the pain became constant and unbearable about three years ago. I did have MVD, and now the sensation on that side is back to almost 100 percent.
I see it is a cylcle between the OCD and the pain, so may be the best practice it to break this Cycle from both sides, in other words, to treat OCD as well as ATN at the same time.
I have the same ugly cycle but between. GAD/depression and Atn.
The main problem i see for both of us is the absence of real diagnosis for what is behind the ATN cause the Atn is not a diagnosis but it is any facial pain which is not typical trigeminal neuralgia.
hopefully we find better solution soon.
Purple74 said:
I have a lot of anxiety…diagnosed OCD prior to all this pain. I do believe that my OCD is exasperating my symptoms, or more likely my anxiety. HOWEVER, if this pain would go away my anxiety would be at a level close to nothing. I had all the OCD tendencies somewhat in check. But there is nothing I fear more than not knowing and poor health. So now, here I am faced with great pain - which to me indicates poor health. However, the dr’s say I’m in fine health just have this nerve pain…maybe it will go away, maybe it won’t…who knows what caused it. Well, I just can’t seem to wrap my mind around that. So I drive myself nuts searching physically and outside myself for a cause. When a person opens their mouth as wide as I do, and sticks their tongue out as far as I do, as many times a day as I do…I have no doubt that physical pain is increased. Such a nasty cycle. My doctor has been suggesting that I have two issues going on…one being the real and atypical trigeminal neuralgia and the other being my OCD. He says he is actually more concerned about the OCD. Whatever…if the pain went away I wouldn’t be sitting in his office obsessing about it.
The numbness started when I began having symptoms from a Chiari Malformation, which was surgically corrected in 2003. The numbness remained, and at the time it was thought to be a residual affect that would not resolve. My initial diagnosis of TN , in 2012, was based on symptoms, as the MRI was normal. I did have another MRI when I saw the neurosurgeon, and this one was high resolution, which did show vein compression. I can only assume the MVD helped with the numbness, as it know resolved.
Christine
PainFighter said:
Hi Christine, I am happy to know that youe sensation went back, so was it pressure from a blood vessel on the nerve? and was it diagnosed diretly by MRI or was it theorized by doctor?
Christine said:I have bilateral ATN. I have had chronic diminished sensation on my right side for a long time, but attributed it to another condition. The TN on that side has been around for 10 years, but I did not seek a diagnosis until the pain became constant and unbearable about three years ago. I did have MVD, and now the sensation on that side is back to almost 100 percent.
I agree with you, Painfighter, on the whole interplay between OCD/GAD and ATN. I think if I could quit checking my mouth and looking at my tongue (which I swear has a spot on it...and they tell me is normal anatomy - amazing how things can be seen so differently. But hey, they are the ones with the fancy letters - I hope they know what they are talking about). But anyway, I think if I could trust them, and let my obsessions and compulsions ease up...maybe some of the pain that I may be causing (like sore muscles or whatever) may ease up. So, anyway...gonna give the Prozac a try, I guess. Even if all it does is help with my fear, it will be a super improvement!
I hope, though, that the pain goes away for both of us...whether it is coincidental related to lessened anxiety, or whatever it is just heals up.
How have you dealt with this for 20 years...I feel like it is consuming me, after just 2!
Yes, Purple74, I hope Prozc helps in your OCD, this family (SSRI) should help in ll kinds of anxiety including OCD.
Really it was hell for me those past 20 years and what worsen the situation more and more is the absence of awareness with ATN in my country at this time,so I tried dozens of classical TN medications without improvement. The pain started to respond with medications only when I tried bromazepam, and it got me lot of time to be under good psychiatrist supervision to write for me a "relative" relief in the pain. The other factor that worsen my case is that no one of my family, including doctors, was feeling really with my pain, and most of them underestimated it and thought that I a exaggerating. All these factors helped a lot in pushing me into another hell which is "the major depression". I have major depression from bout 7 years. The current situation is that I am still depressed chronically and the pain is in daily basis plus the GAD. The medications are only suppressing this triangle (pain, depression and GAD), so I am on the medications for ever till something else, I don't know it, happens. I am working tough work that needs great concentration and thinking (electronics design) and have family from a wife and 2 daughters, so it is somehow luxurious to live as patient! I have to pretend all the time I am OK! and this increases the stress more and more.
I hope you get fast and final relief from your pain.
Thanks for paying listening.
Purple74 said:
I agree with you, Painfighter, on the whole interplay between OCD/GAD and ATN. I think if I could quit checking my mouth and looking at my tongue (which I swear has a spot on it...and they tell me is normal anatomy - amazing how things can be seen so differently. But hey, they are the ones with the fancy letters - I hope they know what they are talking about). But anyway, I think if I could trust them, and let my obsessions and compulsions ease up...maybe some of the pain that I may be causing (like sore muscles or whatever) may ease up. So, anyway...gonna give the Prozac a try, I guess. Even if all it does is help with my fear, it will be a super improvement!
I hope, though, that the pain goes away for both of us...whether it is coincidental related to lessened anxiety, or whatever it is just heals up.
How have you dealt with this for 20 years...I feel like it is consuming me, after just 2!
I hope you also find relief, and soon. Glad to listen and glad to have you listen :)