Has anyone ever went into "full remission" ? Can this happen Can the nerve ever heal/stop hurting or is the pain just going to keep getting worse with every episode? How can someone go with out pain for months and months without taking meds and then bammm it comes back and seems to be worse then the last time!!!!!
Hi Ayre,
My TN when first diagnosed last almost 9 months and then I was able to wean off the Tegretol and be TN-FREE for 8 YEARS!
I didn’t know it could come back…
Well 2 years ago it did. And it is progressing fast, meaning the meds aren’t controlling my pain for long before I have to increase the meds. My neuro said this would happen but I chose not to believe him…unfortunately he was right.
I have no idea why I was able to go 8 yrs without it, nor do I have a clue as to why it returned.
I have been researching my brains out, trying to get a better understanding of neurosciences…
Never my forte.
I don’t think anyone has really figured out what really causes TN and/or why it can go to remission. Everything I read is mostly guessing on researchers part. The nerves are very complex .
I think the time has come for way more research!
((hugs))
Hi Ayre,
I have no pain at all for four months and now I am tapering down my medicines. Whether I am having full remission or not is not my main concern , but I feel really blessed . Life is great and I am happy.
I hope everyone here goes into remission , at least once. We need the respite and enjoy living a normal life that many people take for granted.
Best regards.
the biggest problem is no one is helping me find the cause all i know is the mri showed no tumor??? i guess........ i am in the process of getting my mri papers and finding a neurologist i good on I have been through 2 my pain is in th right lower jaw towards the front and radiates back of the jaw towards the ear sometimes....
shindig said:
I think it's more likely to stop if they find a physical cause and relieve that.
But there are literally more than a thousand different causes for TN. Everything from compression caused by blood vessels, tumors, cancer, inflammation, lesions, to damage from other procedures, dental, etc.
I recently saw a neurosurgeon and asked him the same question. He said that full remission (permanent) was very unlikely. Apparently periods of remission are far more common with TN than ATN. He called ATN "the end stage" of the condition, meaning that remission is very unlikely to occur. I'm not sure if anyone really knows for sure though. I agree with others in that much more research is needed on trigeminal neuralgia.
I began with Classic TN which went into remission, I then developed TN2, this has gradually improved and is now very mild. ( I think mine was caused by trauma to the face) There is hope out there. I also like to think I am not alone, but others once they are in remission stop coming onto the site and others may not join as their remission means they do not need it in the first place. I have spoken to a few people who tell me they have had an episode of TN in their lives but it then stopped. You may doubt that they ever had TN but as this is also my experience i accept what they tell me. Mimi, has a compression yet been found? I wonder if that is responsible but it separated naturally for all that time? I wonder if that is possible?
what would be atn??? Im still figuring this all out the symptoms have changed i do get the lighting like shocks and burning it usually starts with the shocks then the days to follow r more the burning
GinRebekah said:
I recently saw a neurosurgeon and asked him the same question. He said that full remission (permanent) was very unlikely. Apparently periods of remission are far more common with TN than ATN. He called ATN "the end stage" of the condition, meaning that remission is very unlikely to occur. I'm not sure if anyone really knows for sure though. I agree with others in that much more research is needed on trigeminal neuralgia.
i was the same way no pain for 5 months no meds then bam?????
Seow W said:
Hi Ayre,
I have no pain at all for four months and now I am tapering down my medicines. Whether I am having full remission or not is not my main concern , but I feel really blessed . Life is great and I am happy.:-)
I hope everyone here goes into remission , at least once. We need the respite and enjoy living a normal life that many people take for granted.
Best regards.
ATN is atypical or Type 2 trigeminal neuralgia. Here's a description from the Face Pain Info tab on this website:
Type 2 (“Atypical” TN) is characterized by constant, searing, burning, crushing, throbbing, grinding pain, in the eye, ear, sinus, palate and/or upper and lower teeth and jaw area. ATN attacks may last for days, weeks, months or years.
ayre said:
what would be atn??? Im still figuring this all out the symptoms have changed i do get the lighting like shocks and burning it usually starts with the shocks then the days to follow r more the burning
GinRebekah said:I recently saw a neurosurgeon and asked him the same question. He said that full remission (permanent) was very unlikely. Apparently periods of remission are far more common with TN than ATN. He called ATN "the end stage" of the condition, meaning that remission is very unlikely to occur. I'm not sure if anyone really knows for sure though. I agree with others in that much more research is needed on trigeminal neuralgia.
Hi,
I had both TN1 and TN 2. My MRI showed that my artery is compressing the nerve. Therefore I know that my remission is temporary. I had been in pain for the past few years and had forgotten what it was like without pain. I am feeling great now, leading a normal life and doing things that were once impossible. Like what you have mentioned: 5 months no meds then bam is worrying. I have no choice and cannot control that. However , a respite is what I need now. Meantime , I try to do more exercise , eat healthily , hoping to prolong my remission . I do not know whether it will work, I try my best.
Best wishes to everyone here,
Seow
I've read that people often experience just one episode of pain and then never again, for what ever reason. My MIL just had one time and it lasted seconds. Perhaps the artery just touched nerve one time.
elstep said:
I began with Classic TN which went into remission, I then developed TN2, this has gradually improved and is now very mild. ( I think mine was caused by trauma to the face) There is hope out there. I also like to think I am not alone, but others once they are in remission stop coming onto the site and others may not join as their remission means they do not need it in the first place. I have spoken to a few people who tell me they have had an episode of TN in their lives but it then stopped. You may doubt that they ever had TN but as this is also my experience i accept what they tell me. Mimi, has a compression yet been found? I wonder if that is responsible but it separated naturally for all that time? I wonder if that is possible?
My GP and myself thought trauma to my face had shook up the nerve, She said TN can happen for a variety of reasons and then calm down again. I am hoping this is what happened to mine. (My Neuro disagreed that my sort of trauma could have done this) but I think it did. Doctors do disagree about what can cause TN. Although my Neuro did agree that many circumstances can cause it.
It then it left with me mild after effects ( TN2). Some peoples TN2 is very bad through dental trauma or other serious trauma which I think causes damage to the nerve.
What does confuse me is TN2 ever due to a compression or is it always nerve damage? And how come TN1 due to a compression can stop for so many years and then return? What happens to the compression during that time? Does the book Striking Back explain this or does anyone else know?
My TN1 has stopped for 16 months now and I have come off the medication with my Neuros permission, but I do live in fear of it returning, if it does, then I guess I will then know it is down to a compression which has returned?
Tkal,Good news for your MIL, I do not have my dog yet, but when I retire will be the time
Seow I am so happy for you, reduce but do increase as soon as you feel any of the effects coming back, I did this for a little while. xx
I have had 4 major flare ups in 3 years have been through 2 neurologist that have told me nothing the last two episodes have been the worst I am not giving up i am going to research research find someone to help me all I know from the first neurologist is that I dont have a tumor on the nerve ????? I am to young and have to small children to live this way!!!!! I will not let this disorder win!!!
Seow W said:
Hi,
I had both TN1 and TN 2. My MRI showed that my artery is compressing the nerve. Therefore I know that my remission is temporary. I had been in pain for the past few years and had forgotten what it was like without pain. I am feeling great now, leading a normal life and doing things that were once impossible. Like what you have mentioned: 5 months no meds then bam is worrying. I have no choice and cannot control that. However , a respite is what I need now. Meantime , I try to do more exercise , eat healthily , hoping to prolong my remission . I do not know whether it will work, I try my best.
Best wishes to everyone here,
Seow
so if the mri shows nothing on the nerve is it nerve damage causing the pain? and r u not a candidate for surgery
Ayre, from what I have learned from this site, is that an MRI does not always show up the compression, and when the surgeon operates he finds that it is touching. I think surgeons are more reluctant to operate if you have TN2 but will if you have the symptoms of Classic TN. Has anyone had an MRI and the surgeon found that there was indeed nothing touching the nerve?
My MRI came back clean but when I had my MVD, they could not believe how much the nerve was damaged and how many places I would need the teflon/felt. I have not met anyone with this illness that had did not have something touching the nerve. I had so many veins, etc. wrapped around my nerve so it was amazing that none of this showed up in an MRI.
Have went 1.5 yrs without a episode, and yes the pain does and will get worse, but sure does feel real good after the pain goes away and you get some sleep!!!!!!!!!!!!
Yes, it can stop. No one can answer why it comes back or why it goes into remission. Have hope. Hundreds of people on this site have experienced remissions. Some stick around to help others with their TN journey, some stay awa y because they don't want to be reminded of this part of their lives again. I have had remissions of months and years. The most amazing remission I've seen here is of Stef, a moderator, who had some of the most intense pain a person could have, she was a career woman and had to give that prt of herself up. Then in April, she announced she was going back to work, in high finance, no less. She had a remission.
TN is not caused by a tumor. True type 1 TN is caused by a blood vessel compressing a nerve, and every time the blood vessel pulsates, it irritates the nerve. In an MRI, IFFFFF the radiologist even knows what he's looking for (my local radiologist didn't know), they would be looking for a blood vessel and nerve on top of each other and somewhat enlarged blood vessel. That's only for type 1 though. Type 2 TN or Atypical TN has a number of causes and can't be seen in an MRI in the same way as type 1.
Across the top of each page here, you will see tabs with different words like MAIN INVITE MY PAGE. etc. Look for FACE PAIN INFO, then look for the title "Atypical or type 2 TN" and click on it. It will take you to the desccription about it. Sadly, few doctors know as much about TN as this website has, thanks to our researcher, Richard "Red" Lawhern. He keeps finding new information for us, and it's absolutely more than any one Dr. would know, so I had to find a Dr. who was willing to learn from me and from this website. I would take him printouts of pages of info here, of various treatments, etc. I also learned that I had another nerve involved in my ear, that no Dr. taught me about. It's called Geniculate neuralgia, and there is a group here for "ear pain" and a lot of people were surprised at how many others also have it, and that it's separate from TN. Some find they have MANY nerves on their skull involved. This site is the best site on earth to learn more than you'll find from any Dr. It's hard work to do the research and tell the dr. the new research, but they seem to busy and too indifferent to want to do the research, so we have to be our own advocate, and a partner with the Dr. in our health. He is not God, he doesn't know everything, we need to help him and work with him (if you find one willing to learn something new.)
DON'T STOP HOPING! I hope you wuill find a kind Dr. who will be willing to help you try different combinations of medicines that will help you. One medicine often isn't enough.
Kind thoughts, Sheila
I wonder Sheila if anyone has ever intended to have an MVD and found that there was not a blood vessel pressing onto the nerve and why some MVD do not work?
yes Elstep, absolutely, many here on LWTN have had MVDs fail, and surgeons have found patients with no nerve compression once they operate. It happens so often that my province stopped paying for the surgery. (Socialized medicine here.) MVD has a high failure rate when doctors use it on type 2/atypical TN.