Right now my ATN will hit me and stay for a day or a week or even a month, but it will go away for a good 3 months and come back for no reason. I never know how long it will hang on. But this is my 3rd year and the attacks are a little worse. Will there be a time when they stay longer than go?! Has anyone been where I am now and had it get worse or stay the same?
I don’t think any one will be able to give a defiant answer in this. Just for the fact that each case is so different. What I can tell you is some cases progress more quickly than others, while other cases of tn are more steady rating. Don’t let this scare you. For example mine progressed pretty rapid. At the first few months it was only pain once a week, then every couple of days, then daily, and now it seems every few hours (on super bad days it is hourly and it really stinks). Until I stumbled on this site I thought this was the norm, only to discover that everybody is different; some people have pain once every few months (with the duration different) and others have pain all the time. So it really all depends on the individual and not the disease it’s self. Does that make sense?
Have you keep track of the pain episodes? That will help you to know the progress or decline of your tn. Other things to watch for is the degree of pain changing, are the triggers to set pain off changing, and have you notice a pattern of when the pain comes back ( are stressed out, have you gone through a major life ever). Keeping track of theseay help see or your doctor see if your tn cases is getting worse. Sorry I could not give you a better answer, and that the darn tn is giving less breaks or short remission periods. Hope it goes away quickly for you and stays away longer than ever.
Mine came on slowly over 3 years, with only two main attacks. But I do have pain everyday if I wasn't on my meds but they are not yet the main attacks. They are managable but when I have breakthrough pain I can't forget that this might be just the beginning. Off meds I was only having 10 to 20 shocks a day. But there was no day without them. Just not the horrific, please cut my head off pain that I had experienced twice before. I'm trying to get ahead of the pain and treating it now rather than later. I don't seem to have to many triggers. The just come.
Thanks for the input. I do keep track of every bit of pain in what used to be just a "headache" journal. Now its my ATN journal. Yes I do see the progression. Last 2 yrs. I only had 4 bad episodes that landed me in an ER. Since the begining of 2012, I've had 7. Scary. I am on meds and like Tkal, if I don't take them the attack is just that, an attack! Its ugly. I am a pretty positive person so I will make it either way. Thanks guys.