Flare ups - how often do you get them?

I am currently in low pain mode and have been for a week. However, after reading alot of threads here, I did not even realize that over the last year, I keep having "flare ups". I kept thinking that I was eating wrong, sleeping wrong, holding my neck wrong - you name it. I didn't realize that TN and ATN can fluctuate like a roller coaster. Since I have only had ATN for a little over a year, guess I am still a toddler in my knowledge. So, for those of you who have more experience than me, how often do you experience these awful, debilitating flare-ups? Do you increase the meds during the flare-up period and then decrease afterwards? How long do yours last? This is how mine have progressed: I start with each day (for 1 or 2 days) a mild increase in the pain spikes. Then, they start to become more intense and more often - especially the evening hours. They keep building up to day 4 or 5 until it feels like a volcano is erupting in my face and my emotions plummet. The volcano can last up to 3 days and then, suddenly, it stops. I read somewhere that the trigeminal nerve can only take so much firing, so to speak. That after a certain period of time, the nerve just stops because it can't take it anymore. Or maybe, our brain just can't take the realization of pain anymore. I have panicked during those volcano days and thought there must be something else wrong with me. Now, I am thinking that this is just part of this disorder, but no doctor has ever told me that.

Often, especially w/o Botox in the scalp helping to hold them back.

D, Does your face get red hot? I am noticing that my face gets very hot like I have been in front of a fire. No other symptoms. I take carbamazepine 1000 mg. Thanks

Oh, it can only take so much firing? That would be wonderful news to know, because I often dread the day when, even though I may be, by that time, on enough medication to kill a horse, that the pain will be incessant and unbearable. Maybe that never happens? I don't know.

That's actually good news! Do you remember where you saw, or read about that in particular, D? I've been wondering . . ..how bad can it get?

Ok, I've found something on the question I asked about the TN nerve and it's capacity to keep on "firing" and why it can only take so much "firing" before exhausting itself. It can be found in the body of questions at the following link.

My question would be as to whether, or not, this fact would apply only to the TN nerves of Type I patients, or also to Type II patients, who suffer from a more constant type of pain.

Here is the link something which references the fact I questioned above:


I forgot to add that at the first sign of the botox wearing off, about 4 weeks out from having 200 units of the injection to my scalp, I titrate up on the neuronin to 2400 — which is my max due to swollen joints from the med. I will have to live the breakthrough pain until I hit week 8 and have another round of injections. It is more than challenging to keep my heart pointed at the positive, but it is easier now that I know the botox helps and will be used in 10 days. Now I count down the days to relief. Before this med, I was out of options.

Here's a thought: If the T Nerve truly does get exhausted, has there ever been a treatment where they put the patient asleep and cause the nerve to fire over and over for hours at full bore firing — until it is over exhausted and basically poops out forever? Wouldn't that be nice to have it so exhausted that it might vibrate some, but not be able to cause pain?

LyndaS said:

Often, especially w/o Botox in the scalp helping to hold them back.