Changing pain patterns

Does your pain change from day to day?

One day its in my cheek bone, then perhaps my temple.

Tonight after a practically pain free day, it settled in the muscle of my upper jaw. Drove me nuts. Hadn't taken anything for bad pain in a few days. had to breakdown last night and take some fioracet. I just have to wonder why mine jumps all over the place. Its been a month, and I am ready to forget about this. I still have hopes that it goes away, and never comes back.

Yes, mine moves all around. Almost like it its alive, i can understand how people thought they were possessed by demons many years ago. Sometimes its my teeth then maybe behind my eye, my ear, half my nose…never know where or when out will strike next.

Well, its actually good to know that I am not alone. I guess you never know what these nerves are going to do.

Go figure.

Yes my pain moved around, although it is centered around my mouth. And yes, I have named my pain demons.

Yes, it moves by the day, by the minute. Who knows where it is going to be. You are not alone!!!

Mine moves around too. I have several areas that are the most common and others that hit inbetween. Somedays only behind my eye will hurt, then by evening, molars cheekbone area, side of the nose, eyeball and areas of the scalp will hurt. Three areas I can almost count on hurting everyday.

My pain changed anywhere from more than once a day to maybe weeks between times. It changed from type 1 to type 2 or vice versa and to having both at the same time. I have found that I can usually find that by pressing or rubbing a spot (which also changes even if the pain is in the same place) that I can relieve or lessen the attack most of the time. It does seem that the pain figures out that I can lessen the pain so it changes to make it worse. We all hope that it goes away forever and that a cure can be found.


Any theories of why this happens?

None that I can put in print....

Maureen said:

Any theories of why this happens?

Mine moves around although my teeth seem to be the primary area of pain. It used to be the roof of my mouth but had all but disappeared. It is strange and I get freaked out every time there is a new area of pain.
At the moment I’m doing much better on my cocktail of meds but I still get breakthrough pain but it is at a level that I can withstand.

Take care

Mine pain jumps around all day long. I seem to have it in all the areas that the trigeminal nerve runs. For all the years I was undiagnosed it stayed in my left jaw. I don't know why after it all blew up in January that it's everywhere and bilaterally. I'm so concerned about my future with TN since I still have so much pain with all the medication I'm on. I see here that another even feels it in their scalp. I do too. I was starting to worry that there might be something else wrong with me. I feel like the best thing I can do now is keep as normal a schedule as possible to keep my mind off of it.

Hi Everyone,

I call my pain "my dragon" because that is exactly whaat it feels like, a dragon blasting fire on my face. I have the lightning shocks for sure, but mostly this terrible burning pain and yes, it does move around.

Sometimes in the morning, I think I am going to have a pain-free day. I get through breakfast, no problem. Brush my teeth, no problem. Head out and this is the worst, while driving down the road the dragon strikes. This has happened a couple of times now and I am scared thaat one day the pain is going to be so severe that I have a wreck.

The side where I had my MVD still has pain, but it is bearable. However after 1 month, the other side started up and it really hurts. Almost like the right side is compensating for something which was going on at the left side. Really not sure where this is going or what the future holds.

I am sure that everyone has questions just like I do, which at this point in time don't have an answer. I still believe there are answers out there, waiting for someone to discover and hopefully find a cure for all patients with TN. I live in hope.

Cheers for now,


mine started in what I THOUGHT was a single tooth....little stab here and there for months. when it went full-blown last august, it was horrible electrical shocks. at first I would cry, then I learned that if I could breathe through it, it was easier. after meds, it subsided except for tingling/burning type feeling in my cheek. then I had breakthrough pains & had to get med increases. the pain wasn't as bad as before diagnosis though. THEN in mid-December my pain broke through and it was worse than the electrical! at least I could breathe through the electrical shocks! this was awful..........STABBING in one area over and over really fast, like a sewing machine needle going in and out of my face really fast. I could NOT breathe through that, I would have rather had the electrical shocks! after several days of this, I went back to the doc and got my last med increase. this dose has worked for me since. I tried a few weeks ago to taper down because I was doing so well, but symptoms started coming back, so I am back to full-dose. my TN is in my left side third branch (jaw). I was obsessed with this disease for a while, always researching, etc..... I finally decided that I was going to do what I wanted to do and have fun and if it comes back, THEN I will deal with it. I am not going to let it take over every breath from now on. and if my pain comes back and I can't tolerate more meds, then MVD here I come!

That's a great attitude tiger4nikki. I feel the same way. With the pain under control with meds most days. I enjoy the ride on those days and try to do all the things I love to do. I just wish I wasn't so lethargic from the drugs, but I try to push through it.

Yes, I HATE the tiredness and forgetfulness! But I have been dieting and exercising lately and it seems to be helping me get through the day with less caffeine, LOL!

Hope said:

That's a great attitude tiger4nikki. I feel the same way. With the pain under control with meds most days. I enjoy the ride on those days and try to do all the things I love to do. I just wish I wasn't so lethargic from the drugs, but I try to push through it.