Mine almost always comes on slowly, but occasionally I get the “Surprise… guess what?”
I'm not sure what constitutes remission, but after being diagnosed over a year ago and taking gabapentin and neurontin with great success (no significant episodes since starting treatment) I just started having minor attacks yesterday and a major episode this morning. I assume that remission means that you've been episode free for a significant period of time and stop medicating. How do you know the difference between remission and the meds controlling the condition?
For me it starts with random, minor indications over time then escalates to eleven in a sudden, consistent, relentless attack. Right now controlled with meds; however lately been experiencing breakthrough sensations. So I don’t know when its going to change, only that it will. Hang in there
Yes Srenatee, there is permanent remission. I know a lady who has that and she thinks she's cured/healed. I hope you get cured too!
srenatee said:
Is there ever "permanent remission"? (Fingers crossed) 7/4/13 was my last pain.
Well remission means a temporary time without symptoms. A cure would be when it's gone forever, so there are remissions and even some who are cured.
Aus said:
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.
I have read that some have problems with teeth or ears pain around the eyes. Itching feelings
That is very interesting about the cholesterol. I do not have high cholesterol or I would try stopping the statins and let you know.
As I write this, the last few days I have been having a lot of ear pain and now tonight teeth pain. Bad teeth pain. It feels like somone is snapping rubber bands in my mouth and off of my teeth and if I remember correctly (which is hard to do with these meds) that is a precursor to a full blown TN attack that will last several months until the meds get straightened out again. I don't know if I can take it again. The last time I had a full blown attack, I had another failed MVD. For the past 1 1/2 years I have been doing fairly well on this dose of meds but this disease really sucks.
How did anyone get into remission? Do you still take meds? I had relief for about 9 months after my 2nd MVD and then WHAM...it was back and affecting yet another branch of the nerve. And it has been non-stop every day for the last six years. Now I have been having stomach problems and I wonder if it's from the daily meds. I had a scope and pH monitoring and it just showed mild gastritis and dysfunction of the esophageal peristalsis with non-acid reflux. Anyone else develop stomach problems?
My TN was very progressive, quickly but like someone said before, no two people are the same. I believe this disease is progressive its just takes its time in some people and hurrys along in others. If you don't have the book, STRIKING BACK, you should order it. It is like the Bible for a person with TN. You can order it from
http://www.fpa-support.org/2011/01/striking-back-the-trigeminal-neuralgia-and-face-pain-handbook/ or amazon.com
It has really helped many of us with TN and related diseases.
Hi
Usually you know due to the build up of those familiar signs, (which can also sometimes just stay there at that level, and you can tackle that through lots of rest etc, some people start up their meds again at this point, and it's possible to avoid or delay the onset sometimes) but the first big bang then usually confirms it, but again, everyone is different and people have been known to have a few big bangs and then have it calm down again.
That said, I always think if the pain starts at a particular tooth, maybe get the tooth checked out, because it could just be a bad tooth - if you delay the dentist at the onset of pain, if it is actually a tooth then you'll probably end up having to see the dentist later when you might be suffering full blown TN - NOT the most fun thing.
All the best
If and when I get a remission (they are spontaneous) I go off all meds as soon as possible, just gradually reduce dosage over a period of time. If pain starts up again, I build my dosage up again.
All the best
Not Again said:
How did anyone get into remission? Do you still take meds? I had relief for about 9 months after my 2nd MVD and then WHAM...it was back and affecting yet another branch of the nerve. And it has been non-stop every day for the last six years. Now I have been having stomach problems and I wonder if it's from the daily meds. I had a scope and pH monitoring and it just showed mild gastritis and dysfunction of the esophageal peristalsis with non-acid reflux. Anyone else develop stomach problems?
You know, Golf Nut, brought up a good point. No one in the medical field knows why remissions occur in TN. I guess if they could figure that out, they would be closer to either curing it or making a medication that doesn't have to have all these dang terrible side effects. Do remissions occur in other nerve injuries in the body, like the back or the foot>
Here’s my two cents…
My neurologist always explained that …
Remission from TN= No pain, No meds.
So if I was at least 6 weeks pain free on meds we would slowly start decreasing the meds.
( remember the meds we take for TN are not good for us long term and can cause a number of other problems so it’s always wise to try and decrease with your Doctors instructions IF you are well managed pain wise)
After having bilateral TN for 9 months ( in 2002) I was able to become med/pain free…
My “remission” lasted 8 years for right side TN1
and 10 years for left side TN2.
TN is known to be progressive, but of course we’re all different and our experiences with TN are uniquely our own.
My right side TN1 has remained manageable and fairly quiet.
My left side TN2 progressed rapidly after remission ended and started experiencing worsening TN1 as well.
Left side also became med resistant.
Not enough studies have been done on the progression of TN.
There is still much that remains unknown.
If you haven’t already read the discussion “Everyone with TN should read this” I highly recommend it. Whether you’ve had TN a few days or for many, many years…
Cat woman keep what I call a TN diary, it can be helpful to see patterns or notice potential triggers.
There are so many variables for us ALL to consider like dosing/timing of meds, dietary factors, talking too much ( using mouth muscles that trigger the pain) different combos of meds, stress levels, depression,anxiety, physical activity, procedures.
All the above and more influence or have a role in how our TN affects us individually…SO much more needs to be learned…
Sorry I ran on and on…
(( hugs )) Mimi
Hi Mimi
Wow, an 8 yr and 10 yr remission, that is awesome and gives me hope. I am at about 1 yr since this started. Do you remember which medication and what dosage and for how long you took this medication way back in 2002? Lol, I am always looking for the magic recipe here, even though I know intellectually we are all individuals and it doesn't work that way. Sounds like you were fortunate in that you had a knowledgeable neurologist right away after your first symptoms of this.
S&A gal,
I was fortunate, but didn’t know it, until remission was over…
I hesitate to go further because it’s important to remember that HOPE is so important and yes we all have unique journeys with TN.
Remissions of varying lengths are possible and do happen!!
Unfortunately in my case TN has been progressive .
The last 3 years my life has changed dramatically, sadly not so fortunate anymore.
But… HOPE remains alive …
I had Bilateral TN for 9 months on varying levels of Tegretol CR prior to remission, no magic recipe unfortunately.
(( hugs ))
Thank-you for asking the question about remissions & how to know it's coming back. it's back or cranking up the pain meter to that horrible number 10 pain range. In reading the responses to your post you have provided me with reassurance that the anxiety I feel whenever my teeth have an unexplained (5/10) pain for a few hours in 'that area' & hold my breath whilst for the electric shocks pierce the back of my eyes is normal... Or should I say, our type of normal. Thank-you for the small gift of being one in a crowd. It gets tiring trying to explain trigeminal & all it's many & varied gifts. kind regards Jacl
I don’t know what remission is but I had my last major attack almost a month back .Since then I am always worried when it will come back .I keep having electric jolts in my ear few times everyday. what does that mean? I had major skin allergy because of the medicines so my doc stopped the medicines and now I am only on Gabapin 100mg twice a day. I have gained a lot of weight which causes more depression.
Totally blown away by the response my innocent little question got! How frigging different are we all? Same condition but totally different experiences. It's no wonder then that it's so hard to diagnose.
In the almost 2 years that I've had this I've had two major flare ups with periods of relative quiet in between. From your responses I'm kinda getting that I'm fairly lucky!!
Thank you all so very much for taking the time to tell your stories. I love you all, Cathy.
I had tmj surgery in '86. I had ATN before and after the surgery. The surgery did resolve deep screw driver ear pain but the ATN continued for 3 or 4 years. Then it was gone. Sometimes I would get a slight feeling of pain in my cheek area if I was under an AC vent or ceiling fan. So I have been saying for awhile I was in remission for over 20 years, actually 30 years! A little more than 2 years ago I started to get the pain in my face back gradually and was full blown pain in about 3 months. 9 months into this I started having new pain with my ears, not tmj, but atypical GN. I have the bitter taste, actually that started along with the face pain. I am on meds, gabapentin, baclofen and amitryptiline. I also take narcotics, 7.5 mg. percocet and time-released morphine. I have other chronic pain issues from failed back surgery and neck surgery. All my meds are low dosed, unable to tolerate tegretol, lyrica or cymbalta. The ear pain, presssure/fullness has improved with adding baclofen and the amytriptiline but I also get botox for my neck and the neuro goes into my scalp for ON sites and that may be helping the ear pain.
You bet I am waiting for remission unless the tmj surgery has caused arthritis in the joint which is 1 mm away from the TN nerve. At 58, with my spine riddled with arthritis I may not see it. I am looking into PNS to treat the pain as I am not a candidate for surgery being atypical. Remission would be wonderful, maybe there is a chance. I really feel for all of you that get the 10 stabbing electric-shock like pain. Anxiety is something hard to control with that kind of pain. Sharon