Since my major attacks (Super Bowl Sunday and for two weeks after), I have only had a few twinges of pain--not the "holy shoot, a rabid porcupine is dying in my head" attack. Does this disease go into remission?
If it does, how do I deal with the whole, "okay...when is this coming back?!?"
I tried to have an MRI on Friday, but it was an old machine that has less room than a coffin; they've rescheduled me for the Imaging Center in the bigger MRI machine that isn't so Godawful cramped. I felt like such a wuss!
I have short periods of time that mine goes into remission. But it's never long enough for me to taper down on my meds. Sometimes it's a week, sometimes it's 3-4 weeks. Every time I think about tapering down on my meds.........BAM, it's back. The meds help because I KNOW what it felt like without them, but I have still had some pretty painful ones and some were bad enough that the docs had to increase my dose. I have never been lucky enough to decrease yet. I was diagnosed Aug. 28th and started meds that night. Since then I have increased 3 times and I am up to 1200mg carbamazepine xr per day. To answer your question, YES it goes into remission. For hours, days, weeks, months, sometimes YEARS. I have never gotten past 3-4 weeks. Sometimes it's just a day or 2. It's hard to deal with because you are always waiting for it to come back. I think I have PTSD from this. Don't feel like a wuss. Some people just can't handle enclosed spaces. I hope this helped to answer your question.
I have short periods of time that mine goes into remission. But it's never long enough for me to taper down on my meds. Sometimes it's a week, sometimes it's 3-4 weeks. Every time I think about tapering down on my meds.........BAM, it's back. The meds help because I KNOW what it felt like without them, but I have still had some pretty painful ones and some were bad enough that the docs had to increase my dose. I have never been lucky enough to decrease yet. I was diagnosed Aug. 28th and started meds that night. Since then I have increased 3 times and I am up to 1200mg carbamazepine xr per day. To answer your question, YES it goes into remission. For hours, days, weeks, months, sometimes YEARS. I have never gotten past 3-4 weeks. Sometimes it's just a day or 2. It's hard to deal with because you are always waiting for it to come back. I think I have PTSD from this. Don't feel like a wuss. Some people just can't handle enclosed spaces. I hope this helped to answer your question.
I have both types of TN and the TN1 went away for over two years. I reallly struggled with the questions...when, what will set it off, how can I stop it, etc.
I have wondered if I have PTSD also. I have a tiny kitchen that only has two places to stand while working. I still, over three years later, can stand in front of the counter and be back in one of the worst attacks I ever had. I wish someone would address how they have dealt with that part of this thing.
For me, the "remission" (still had numbness/burning) lasted two years and eight months. My pain came back shortly after my uncle died in a single car accident three months ago. I haven't handled things well. I am sure that the combination of stress and not being able to sleep lead to the pain I have been in the last couple of months.
I pray that you are in remission and stay there for a VERY long time.
I too had a remission early in my journey with TN--and it lasted for five months! I came to the point where I could actually go through a whole day without fearing an attack. I thought perhaps TN had been a fluke for me. And, for some people it is...for some they have neuritis, or just something else rather than true TN. Perhaps you will be one of those.
Or perhaps it is just a remission. And, of course, it will be awful when it comes back. So, you do what you have to do to prepare for it. You plan for what to do when/if it comes back--keep your meds up-to-date; don't go right back into your old schedule, but keep your life more moderated--with margin so you can be as well as possible. Simplify, say no to as much as possible, consider what stresses you can avoid, give yourself freedom to enjoy life, etc.
Not one of us knows what the future holds and what pain, crisis, disasters might come. But hope never runs dry either. God bless you.