Just wondering how long some of you have went into remission for.
Hi Barberchick. Being only 5+ months into my TN journey, I've wondered too what some people have experienced from a remission standpoint. My definition of remission is no symptoms, no drugs. And how does one know that they might be in remission? In other words, are the symptoms just completely hidding behind the drugs or might remission actually be occuring? Hope that made sense. A cloudy brain is definitely a side effect of my dosage of Trileptal.
Hey Barberchick:
I was in remission from January to June, but after an ER visit with an Dilaudid IV and then Trileptal 300 mg 2 X day, Lyrica 100 mg 3 X day. Got pain back in June...going through new drug regimen and considering MVD.
Have a pain-free day!
Mollycule
I have heard up to 5 years in my in-person support group I believe - after an MVD
I'll take a poll with them next time!
Anything from a few hours to a couple of years have I read on here. As Brad points out, if we are medicated successfully, how do we know or care, for that matter if the pain is not present! I wish eternal remission for all of us!
I know that the meds put us out of pain when they work - BUT your brain still knows to pulse the pain centers
SO your brain is signaling the shocks of pain - but the meds are blocking it
So TN is forever -- even if clamped off - it can come back - it can develop another place - remission is key
It can all depend.... I have been pain free for 3 days now since my last episode... I am so paranoid about it coming back because of the severity of the pain I still haven't been eating right in these few days.
Unfortunately I always have my side effects that include not being able to focus, concentrate or think well enough to be able to return to IT consulting or play sports (lack of coordination & balance side effects). I did go 4 consecutive days last week without any pain, which I don't consider remission since I was still on the drugs. Unfortunately those 4 days were followed by 200+ ice pick stabbings to my left forehead on Friday and well over 500+ on Saturday. As my wife says, I just have to treasure the pain-free days when I can get them. I suppose we are all in the same boat. Good luck to everyone.
Brad, that must be so exhausting for you,I have had 80 in a day and was wrung out, utterly worn out with it. I feel for you mate.
Olmeq, I hope you can eat soon. When mine is bad I always swear I wil chew on a steak when able. I long for it and a good tooth brushing session 
I am only 4 months into my TN journey and recently tried going off my meds to see if I was in remission. I was able to go down to one dose of 100 mg if Carbamazapine for about a week. I was cautiously optimistic I was in remission but now am back to nearly what I was taking prior to decreasing. I can appreciate your hopefullness. Be strong, with this fine community behind you living with TN isnpossible.
Your journey sounds so similar to mine. I too was pain free for 3 days and was almost giddy with relief. Then like the stealth and unwelcome intruder, it was back. My episodes of electric jolts have only been a few at the time, but they are more powerful and then the residual pain of a mouth full of hornets lasts for hours. I will meet my new doctor on Monday morning, (now that I officially have Medicare) and plan to initiate a good and beneficial relationship with him. I will let him know that I plan to attempt to live without meds or surgery for absolutely as long as I can. I pray for wisdom to know when the time for intervention becomes necessary. Blessings to you on your journey.
OLMEQ said:
It can all depend.... I have been pain free for 3 days now since my last episode... I am so paranoid about it coming back because of the severity of the pain I still haven't been eating right in these few days.
My very first attack lasted for 3 weeks and I thought it was a tooth but looking back I know now it was really a TN attack. I didn't have another attack for three years. Now I have daily pain. Not nearly as bad as that first attack and trileptal works mostly.
Thanks Jackie. Yes, it is exhausting. My wife asked me the other day how it was possible to have 500 stabs in a single day. She has been wonderful throughout my 5+ months of TN, but to people who don't have TN it just seems like that number couldn't be possible. I remind her that it is pretty easy to estimate since I can get a stab every few seconds for 5 minutes and that is 100 right there. The weird part is that I have yet to determine a single trigger...they just happen when TN feels like torturing me. Fortunately with Trileptal only about 10% are what I call "knee benders" and the other 90% I can hide from other people. Wishing you a pain-free day. So far I have only had 2 stabs in 3 hours today and that makes it a wonderful day!
Jackie said:
Brad, that must be so exhausting for you,I have had 80 in a day and was wrung out, utterly worn out with it. I feel for you mate.
Olmeq, I hope you can eat soon. When mine is bad I always swear I wil chew on a steak when able. I long for it and a good tooth brushing session :)
I've been about 3 months without attacks, and during that time I've gradually gotten off my Carbamazepine with the help of my doctor. Every once in a while I have a slight "twinge" letting me know it's still lurking in the shadows... I'm counting my blessings for now. Since I have hemifacial spasms on the other side, which are pretty intense, I'm enjoying only coping with one thing. I feel that if I can give my body a rest from the meds when I'm in a "dry spell" it will keep me from building a tolerance to them and having to increase the dosage all my life.
It's worth a shot!