"In many patients, TN is a progressive disorder..." What does "MANY" mean?

Since I got TN in 2001 I have countless times from countless sources seen the dreadful prognosis: "In many patients, TN is a progressive disorder which may become resistant to medication over time..." as well as the phrase "more intense, with fewer, shorter beaks in between..." Yet neuro doctor matter-of-factly says that if meds work now, they ought to keep working. So I'm sorry, I'm an engineer - I need relative terms! Is "many" 5% or 95%?? 50%?? I'm a failed MVD getting wicked breakthrough pains despite ten million milligrams of the Cadillac medicine Tegretol, looking for reasons to have hope and with THAT prognosis everywhere I turn, this is NOT cool. I'm only 46. This leaves a LONG time for stuff to get worse!

I know... I feel like I've been sentenced to remission/PTSD/remission/PTSD for life

I've had to come to the realization that whether active or not - its still there.

We are ONLY 12 in (100,000) so there have not been alot of studies on us.

You can find a top surgeon and go for a 2nd MVD perhaps to buy more time -- many many have (don't know how many)

How recent was MVD and was it closer to 2001 or now?

Have you tried anything topical like lidocaine patches? there is a whole group under the group tab - just for topicals

Keep posting - we're here! This place is the ONLY constant in my TN journey!

I wonder the same thing.

Just don't know the answer. I peaked out pain wise about 4 years in, and my meds still work. And I know of many who are still pain managed after 20+ years. Don't give up hope. And I worry only about today, the future can seem overwhelming at times and for all we know, the worst may not happen.

Im 38 and wonder the same thing. I have been diagnosed with atypical GN, and have had a little luck with meds (carbamazepine and butrans patch). My concern is this, what happens when I no longer get relief from carbo? I am already at 1600mg per day. What happens if MVD doesnt solve my problem?

I just try to stop thinking about the what if’s for now. Right now I just live life as I can.



I am still at work. In fact I sit at work right now 7/10 and cannot do a thing about it. I know that in 8 hours I will be free to sleep, this sucks as I will miss my family tonight. I just need to stay at work to make the money to pay the bills. No choice, even if I can barely stand being alive, we were not given a choice.
It is either live, or not. I choose to live. Albeit in extreme pain, and little to no relief, we must push forward.
My two little girls depend on me to “make the bacon” so to speak.
I HAVE to work. If I didnt buy this huge house in the burbs… Ah well.

I hope you all have one day of peace this week.

Smash

I agree Scott...that phrasing everywhere one reads about TN is disheartening. It's stuff like that..that makes me consider things i shouldn't. Another 45 or so more years of this continuing to GET WORSE is not something i can face. So i don't...maybe that makes me a coward or whatever...but i can't look at that possibility. But yes, it would be nice to know what percentage is considered "many".

So i live today. If i can handle the pain today...if my meds work today...that's all i can focus on.

@Smash...i feel you. Most days my pain is handled well with my meds, but somedays (like today) it is not. BUT..off to work i go because bacon don't make itself. And the house ain't free, nor is the food, or the electric lights..and so on. So know that you are not alone working in pain. Too bad we don't get bonuses on "pain days" eh? lol

~Mistee

I love to hear from people like Jackie who's pain has not worsened with time. I think there are many out there who have experiences have been the same. The internet paints such a bleak picture which worries us all, but maybe its not a forgone conclusion after all and we do not have to fear our future in such a terrified way.

Yah, sometimes the internet is a wonderful source of information. Sometimes the internet scares the living hell right out of me.
I hope you can filter out the things that scare you, and keep the information that helps in the forground.

Smash

The doctor at a&e wrote the condition on a piece of paper gave me the meds and told me to google it. Got home and frightened myself to death. This must be one of the worse ever conditions to read about, I am so pleased that people stay on here to share their positive stories with us all so we just dont hear the worse. I have also found that although lots of people come on here very desperate they often improve with time,either because of meds, surgery or remission, there is hope for us all.