Hi everyone-
I was just wondering about remissions and if most people have had them.
Can you tell me how many/ how long they have lasted?
Did you have any warning when it was back or did it just nail you all of a sudden?
When did you start back up on meds-- at first twinge or full-blown attck?
Getting nervous--have been having some tooth pain and hoping the nasty tn devil is not planning on returning soon...
Thanks!
Hi Tacocat,
Speaking from my personal experience, remssions can last for two or three months, or even years, and remissions, for me, have been complete cessation of pain. When the pain has returned, it has started up small, little twinges becoming big twinges, until finally one big zap and you know it's back. The amount of time between the first little twinge and the first major zap can vary hugely, plus if a major flare up is approaching I can usually feel my cheek/jaw area pulling and tightening - usually, but not always.
Having an intense dislike for the side effects of the meds, I have tended to put off starting on them again in the early stages, figuring that the longer I can delay taking them the better I feel. But with hindsight I really don't think that's the right thing to do, for me anyway, and I think there are others who would agree with that, especially remembering that with some meds (Tegretol, for instance, which is what I take), when you first start taking it, it can take three weeks of regular dosing before you start to feel the benefit of it. If you start taking it right away, maybe you can calm and settle the nerve before it flares up into the major zaps - and I think it's worth trying for that reason.
It is roughly 15 years since TN first found me, I am currently in remission, and these days when I feel the slightest twinge, I make a conscious and decided effort to RELAX, physically, mentally, emotionally, spiritually, as I believe stress (inner or outer) to be a major trigger for fresh cycles of TN. The first thing is to unclench the jaw; we all tend to clench up, often even when we're not stressed, and I think that has an effect on the nerve, so I am always, always unclenching whenever I catch myself doing that. Plus, when feeling twinges, keep mouth slightly open all the time, even when sleeping, so that jaw really is relaxed. This helps to keep you from unconsciously clenching the jaw. Lie down, meditate, or even medicate a little, take a hot bath, play relaxing music - whatever it takes for you to just lay everything down and focus on not stressing - in effect, find a happy space. Hopefully this will help, but I assure you that we all struggle with worrying about that awful pain returning, it's a constant theme, so you're not alone with it, you just have to find what works for you. All the very best.
Hi! I asked pretty much exactly the same question several months ago and got widely varying responses! For me, I've gone into remission twice in the two years since diagnosis for a few months at a time. During the blessed months I would have the odd day when I'd get twinges but that was all. When it cane back it would come gradually and then pow! it was back.
I stopped medication when I was pain free which I think was a mistake. At the moment I don't have any stabs or shocks just a deep, hideously uncomfortable numbness which alternates with aching. I think I can handle that better!
I hope you're wrong about it coming back! Hang in there :)
I'm very new to this as it seems but mine has been in remission since taking my first lot of medication and I have my old life back again, if nothing else I don't take one minute for granted.... In saying that I too often feel nervous waiting for the next attack.
Thanks for your response Maur-- it is actually really encouraging to hear remissions can still happen even 15 years down the road! I had my first major attack last June ( at age 56) and the tegretol worked to stop it. Thankfully, it hasn't come back yet...but as I said some days there are slight twinges and tooth sensitivity....it is hard not to think about it even so long after the attack...seems like whenever I plan something for the future I am always wondering...what if... what you said about clenching, etc, is very true-- I feel like that played a role in my tn attack...I had stopped wearing my nightguard and I am a clencher/grinder... and as with any pain...stressing out and panicing makes it worse--(think childbirth..lol) It sounds like you have been able to still have a life with this disease...that is encouraging as well...thanks!!
Maur said:
Hi Tacocat,
Speaking from my personal experience, remssions can last for two or three months, or even years, and remissions, for me, have been complete cessation of pain. When the pain has returned, it has started up small, little twinges becoming big twinges, until finally one big zap and you know it's back. The amount of time between the first little twinge and the first major zap can vary hugely, plus if a major flare up is approaching I can usually feel my cheek/jaw area pulling and tightening - usually, but not always.
Having an intense dislike for the side effects of the meds, I have tended to put off starting on them again in the early stages, figuring that the longer I can delay taking them the better I feel. But with hindsight I really don't think that's the right thing to do, for me anyway, and I think there are others who would agree with that, especially remembering that with some meds (Tegretol, for instance, which is what I take), when you first start taking it, it can take three weeks of regular dosing before you start to feel the benefit of it. If you start taking it right away, maybe you can calm and settle the nerve before it flares up into the major zaps - and I think it's worth trying for that reason.
It is roughly 15 years since TN first found me, I am currently in remission, and these days when I feel the slightest twinge, I make a conscious and decided effort to RELAX, physically, mentally, emotionally, spiritually, as I believe stress (inner or outer) to be a major trigger for fresh cycles of TN. The first thing is to unclench the jaw; we all tend to clench up, often even when we're not stressed, and I think that has an effect on the nerve, so I am always, always unclenching whenever I catch myself doing that. Plus, when feeling twinges, keep mouth slightly open all the time, even when sleeping, so that jaw really is relaxed. This helps to keep you from unconsciously clenching the jaw. Lie down, meditate, or even medicate a little, take a hot bath, play relaxing music - whatever it takes for you to just lay everything down and focus on not stressing - in effect, find a happy space. Hopefully this will help, but I assure you that we all struggle with worrying about that awful pain returning, it's a constant theme, so you're not alone with it, you just have to find what works for you. All the very best.
Yay-- mine, too. Let's hope it stays that way.... how long has your remission been??
Busy said:
I'm very new to this as it seems but mine has been in remission since taking my first lot of medication and I have my old life back again, if nothing else I don't take one minute for granted.... In saying that I too often feel nervous waiting for the next attack.
Hi ya, I've been in remission for close to three months now and I'm positive telling myself it won't be back anytime soon. A couple of tiny twinge but nothing really.
Hi Tacocat,
I first had ATN when I was 29. After three months of excruciating, frightening and non-stop pain I was started on Amitriptyline 25mgs. It took ALL of the pain away. I stayed on that med for two years and only went off of it when I wanted to get pregnant. The pain was GONE. 100% GONE.
Eight years later, March 2013 it started to come back, very slowly. Presented again in a tooth. Over six months and many dental visits it got worse and worse. I so badly wanted it to be dental and even had a root canal in hopes of getting rid of the pain. Well, it didn't. I started Amitriptyline and was pain free at 40mgs in September 2013.
November 2013 decided to go down to 30mgs to see if it was still there. I was fine for about a month. Then it starting coming back. This time it was coming in on the other side too. I was so upset. Now have bilateral ATN in bottom two branches with some small twinges in the top branch too. Increased again in January 2014. To 60mgs this time and that is where I will stay. I am not pain free but am doing REALLY well. I get flare ups about once a month--the weather and my cycle seem to bring it on.
So, remission is possible. Seven years for me. I wish that would happen again :)
I had a remission ( no pain, no meds) for 8 years on my right sideTN1 and 10 years on my left side TN2.
My right side is controlled (rarely have shocks) with the meds.
My left side does not want to cooperate at all…it is progressive pretty much med resistant,and only responds to the meds to a certain extent. I did have 4 months pain free after my left sided MVD last year, but had to remain on one med to achieve that…and then it got worse again and I had to increase meds and doses and it’s still out of control. I’d be so much worse without the meds.
I hate meds, always have, but sometimes despite every effort, there is no choice.
(( hugs )) Mimi