do the symptoms of TN2 have to progress? meaning over time does the pain and longevity of that pain have to increase to a constant? i know everyone is different ! i read the face pain page but im not seeing anything about this. unless i missed it. do many people with TN2 respond well to meds for the remainder of their lives? does being treated early on have an impact compared to people that werent? if you have TN2 and get the symptoms of TN1 [ lightning bolts etc. ] other than the meds are the surgical or non-surgical techniques still an option for you? i have a lot of questions and more to come!
I'll start with the progression -- most/many/all TN is progressive = it can go in and out of remission, but you can be on a med for 6 years, every day, and boom - med no longer works.
You can have an MVD and 3 months later - TN is back--or you could be in remission for 12 years! TN is inconsistent and we all have same type stories - but there is no one "clasical case of TN that is normal TN"
You always have TN -- it's just is it actively hurting or not.....I don't know if it ends up in a constant - some have constant pain right out the gate.
MVD stats show the sooner the MVD - the higher the success rates -- best if in the first 3 - 7 yrs.....Unless you have a nerve damaging procedure - like gamma - then lowers your rate of success with MVD because it damages nerve.
TN 1 is traditionally easier to treat the strikes -- compared to ATN
Keep Posting!
Fuzzy I had TN1 followed by TN2, after meds I went into remission of TN1 and am now in remission of TN2, there is hope for everyone. xxx
well from what i have been reading about ATN or TN2 people rarely go into remission . i understand its a progressive disease.and i understand everyone is different. but i guess im looking for answers from the people who only have ATN or TN2! pain fluctuations i understand. but because of the progression of the disease does that mean some,most or all will have more pain constantly along with the fluctuations of that pain if at the beginning you only have pain say 50% of the time.?again im asking if people with ATN or TN2 [i understand that a med or meds will stop working for you. but that doesnt mean all meds. but that could happen as well. or some just may not work for you at all. ] can respond to meds [ at a functional and somewhat productve level for the remainder of their lives? basically if your not in pain 100% of the time in the beginning does that mean some where down the road your destined to be in pain constantly and with increases in the pain?
Hi Fuzzy,
I have bilateral TN.
Right side TN1, Left side TN2.
After initial onset both sides went into remission at the 9 month mark.
TN 1 was in remission for 8 years.
TN 2 was in remission for 10 years.
When TN1 came back, it was managed at 800 mg Tegretol.
TN 2 came back and has worsened, it has become resistant to meds.
I’m on a lot of meds, high doses, no relief.
AND now about 8 months after TN 2 returned it is also presenting as TN1 .
I’m having an mvd on my TN2/1 left side on April 9th.
This is just my story.
((Hugs)) Mimi
so you are getting this mvd i know for both but mainly because you have become resistant to the meds?
Mimi said:
Hi Fuzzy,
I have bilateral TN.
Right side TN1, Left side TN2.
After initial onset both sides went into remission at the 9 month mark.
TN 1 was in remission for 8 years.
TN 2 was in remission for 10 years.
When TN1 came back, it was managed at 800 mg Tegretol.
TN 2 came back and has worsened, it has become resistant to meds.
I'm on a lot of meds, high doses, no relief.
AND now about 8 months after TN 2 returned it is also presenting as TN1 .
I'm having an mvd on my TN2/1 left side on April 9th.
This is just my story.
((Hugs)) Mimi
i meant resistant to the meds for TN2 is mainly the reason for the mvd?
FUZZY said:
so you are getting this mvd i know for both but mainly because you have become resistant to the meds?
Mimi said:Hi Fuzzy,
I have bilateral TN.
Right side TN1, Left side TN2.
After initial onset both sides went into remission at the 9 month mark.
TN 1 was in remission for 8 years.
TN 2 was in remission for 10 years.
When TN1 came back, it was managed at 800 mg Tegretol.
TN 2 came back and has worsened, it has become resistant to meds.
I'm on a lot of meds, high doses, no relief.
AND now about 8 months after TN 2 returned it is also presenting as TN1 .
I'm having an mvd on my TN2/1 left side on April 9th.
This is just my story.
((Hugs)) Mimi
Yes Fuzzy.
Because of the resistance to the meds issue for TN2 as well it is progressing and getting worse going from tn2 only to now also having tn1…more triggers and less days of main under 7/10.
When my neurosurgeon agreed to perform the mvd, I was only TN2.
i truly hope it gives you some relief!!!and you did give me a specific answer. but im still looking for more answers to my questions. such as do some people with ATN or TN2 manage [ on meds ] to lead out a semi productive life! i know each persons case may be different. and i understand its the unknown.
go up to the groups tab --- there is an ATN group /TN2 group that should help --- you can read and lurk, or join the group and ask questions!!! : )
Fuzzy...i have both TN1 and TN2. My TN1 is well controlled on meds...very rarely do i get shocks anymore. My TN2 is moderately controlled on meds. I get the burning debilitating pain now and then...but for the most part i am ok. I have a full time (and very physical) job that i hold down, plus i have a family, dogs, and a house that i take care of.
Except for the extra precautions i take, like making sure i always have a scarf with me or teaching the dogs not to ever lick my face, i live a relatively normal life. Every day is not great...but MOST days, are fine.
So yes, i lead a relatively productive life. (with loads of pills...lol) I am not in pain everyday, and most days you'd never know i had TN at all. Well...except for the twitching hands and my new habit of not being able to speak the word i'm trying to say. but that's because of the meds, and i'd take that anyday over pain.
Mainly, in my opinion and experience...you just have to make a decision within yourself to not give up. Really, it is that simply...you have to decide that you are going to live as close to normal as you can, and do whatever you have to do to achieve that.
Have hope and be determined that having TN1 and/or TN2 isn't going to break you. It will if you let it. I say that because it did almost break me. I got to a point that i was seriously considering suicide..to the point that i was making actual plans. But luckily, at that time, i found a dr who believed me and helped me..and afterwards, when i was feeling better. I looked at the little pills he was giving me and decided that i would NOT end my life over something that could be helped with just those two little pills of medication.
So for me it's all about mindset. Most days i just take my pills and go on about my life.
I hope this helped some.
Wishing you peace and answers,
~Mistee
Thanks, appreciate it. 
Here’s what I know to be true based on my own research over the last year Fuzzy in relation to your questions…
As we all experience TN 1 or 2 differently, we all respond to meds, therapies and surgeries differently, there is no way to generalize on the course of TN or progression.
I had a long remission…why?
It came back…why?
It’s bilateral…why?
TN1 is controlled by meds, TN2/TN1 side is not…why?
No one can answer those questions for me…YET.
That being said.
Here’s my philosophy…
Listen to your body.
Find a doctor/Neuro who has some experience with TN (and/or willing to learn, research) someone who is willing to work “with” you and support you to function well.
Try medication(s) ( give them time to work, a fair shot, before stopping and adding something else )
Advocate for yourself, read and research all that you can about TN, but remember to keep an open mind and DON’T believe everything you read.
Be willing to try alternative therapies within your comfort zone.
Be a part of a place like this LwTN for support and sharing of info, therapies etc.
Our thoughts can and do influence our health, so we must be mindful to take care of ourselves emotionally as well as physically.
Try not to look too far ahead as TN is not cut and dried.
One day at a time, and hope.
(( hugs)) Mimi