Coming out of remission?

Just out of curiosity, does everyone know when they're coming out of remission or is it just bang! you touch your face and OWWWW! Because I've had increasing stabs and aches and today my front tooth feels like it's in a vice but it's not fully back. Thanks guys. ♡

There’s remission? LOL.

It varies, generally for me it starts slowly and builds though occasionally will be more forceful.

Everyone is different, but my remission is slowly ending. More attacks with increasing pain.It's emotional draining to dear the pain coming back after it being gone for a while. When the pain starts, you wonder if it will get to level 10 like it has before.So sorry your remission is ending too Catwoman.

I never knew there was remission?!?!

Yes there is remission! Don't give up hope! I have had it multiple times. I hope you get it too.

Stephanie Rudin said:

There's remission? LOL.

I have Type II, and I find myself rubbing my scalp or my ear. Then it just sort of dawns on me that it's back. It's always a bummer because when I'm in remission, I get lazy about my meds, and then I wonder if I made the whole thing up. But then it returns, and I'm faced with reality. I'm sorry you're experiencing pain again, Catwoman.

Mine slowly increases as well over the course of a couple of days and every time the fear and anxiety of the level 10 pain comes back the moment the pain comes back.

I have JUST been experiencing this. I've been off meds for the last 4 months. About a month ago, I started getting a "pressure" feeling on my face so I started putting on topical lidocaine. Over the next three weeks it slowly started to get worse and the shocking pains started. It's gradual for me and I am peeved because I was losing weight and now I'm back on the meds that makes me gain weight. I am almost at my usual dose because I want to get ahead of the pain and keep the TN from going into crisis. What a b****!.

After a pause in my face-Taser electrical jolts, my TN will signal it's coming back with mini-jolts at my left gum line at first and then Watch Out!!! Level 10 coming soon! It's awful, but I don't have to tell you folks that.

My TN: (Regular, old Type 1. Left side gum-line, cheek, behind eye & nose)

God Bless & stay pain-free!

Rick Bruce

I had a blessed long remission of 2 years and thought maybe I dreamed the last round but when mine came out of remission 2 months ago, it came out of the blue. Jolts in the right canine while eating butterfingers at the movie theatre. Well hello! I guess you're back!

I was always under the impression, that you are in remission when you have gone without medication and have not had any pain for at least 3 months. If you are on anti-seizure meds for a long time and then the pain starts breaking through, thats not remission, that's the medications not working anymore and the dose either has to be changed or more meds added, etc. This is just what happens to me.

I wouldn't say there is a remission lol
Its just there....waiting to awake when you least expect it.
I've always got 'something' there to remind me but its so little pain one can learn to live with it as being 'normal', then wham the 'big' pain starts for a week or two and then settles down for a while.

Is there ever “permanent remission”? (Fingers crossed) 7/4/13 was my last pain.

Hi there! In my experience, I have had warning pains before a full attack. Sometimes, the warning pains can be as long as 2 months in advance before a flare up. It gives me a sinking feeling in my own stomach to say those words, because it makes me think about my own next attack. I hope that I am wrong in your case, but get prepared with any medication ready to go and whatever else you have used in the past.

Wishing you the best!


What a great question Catwoman, I am so glad you asked this and there are lots of interesting responses. A similar question that I have is, is it progressive? I had an initial visit with a neurologist the other day and he says it isn't progressive. I thought it was. As Aus kind of alluded to, it is always there, waiting to come out when you least expect it.. So, does each time this Beast comes out, does it get more and more painful over time or not necessarily??

I have had 2 periods of 2-3 years without pain however was on medication all through this. If I reduced meds I would get symptoms. The TN would resurface and be worse than previously. I had surgery last year and am pain free and no meds.

I am just starting my third remission of type 1. I am going to be 74 years old in June. Each time I thought it was all over and I can't tell you why it came back. The remission was only for a few months, and I am just starting on my third year of having TN. I have cut back on my Neurontin to 600 mg/day from 2400 mg/day. Think I will stay on the 600 mg/day and see if maybe that keeps it from coming back this time. I also have done something interesting - and whether it is the reason for remission is a mystery. I read that our myelin sheath is made up of cholesterol and my cholesterol has been in the high range for most of my life. (above 200). So I have been on a statin drug to lower my cholesterol for many years. My experiment has been to stop the statin drug, and now that I have stopped statins, my TN is not bothering me anymore. It would be interesting if anyone else out there has ever had a similar experience, or has any information on how cholesterol maybe effects TN. It is also so interesting to me that no one in the medical field seems to know why remission happens with TN. Mayo Clinic has wanted to operate on me for the last year, and I have held off and plan on hoping to live the rest of my life without having to have the MVD operation. I have also worked hard to get back to optimum weight for my age and height, and wonder if maybe that has helped. I am taking a blood test next month at Mayo Clinic and it will be most interesting to see those results, especially as the blood test relates to not being on statins.

No to patients are alike, however, I have yet to hear that this is not a progressive illness. You may want to find a neurologist that specializes in TN or Face Pain.

My TN started out with zaps or stabs of pain and progressed over 5 years to a recent full blown attack that left me on the floor screaming and crying in pain.

Maybe other people don't have such experiences, but, I think everyone's pain progresses relative to their first episode.

Do lot's of research (as it sounds like you are) and find a good neurologist!

Best of luck!


I apparently had a remission of seven years! I was diagnosed with ATN and stayed on medication for two years. When I went off it was gone until last year. I am now on the same medication. I am wondering if it is a rare for it go away for that long?

Mine came on very slowly this time over a period of a few months. I have been pain free on medication now for about six months. About two months ago I tried to slightly reduce my medication and it was still there. Went back up to where I was and all is good again.