Those of you who have experienced a remission, could you describe how it began for me? Was it waking up one day and the pain was gone? Did the pain slowly change and then disappear? I have had a few good days this week and am hoping it is the beginning of a remission. I guess we all hope for a remission whenever we have no pain. I know that TN is such a fickle beast that remission will look different for each of us but I am really interested in hearing about how your remission was. Please be detailed about how it felt and when you were sure it was actually had arrived. Once again, I thank you for sharing parts of your journey with me.
I've had two remissions. Unfortunately I don't know if they were true remissions, or that the gabepentin was working well. I do remember that it would start with a few pain free days, then seesaw back and forth for awhile. Then all of a sudden I realized I wasn't being shocked every day. I don't know this for sure, but I think I ended the second remission from crying so hard when I had to bring my greyhound in to be put to sleep. During both remissions I continued with the gabepentin, but got a little sloppy with dosing. (in other words I wasn't watching the clock to make sure I didn't miss a dose) Also weird to me, the day I went into TN2, I've never had another shock.
Remission can last from just hours, to days, weeks, months, or even years. For me, mine are only from a few hours or days. I have never really had one long enough to taper down on my meds. I had a whole week with NOTHING this last time & decided to taper down on meds. I went from 1200mg carbamazepine to 1000mg and after 3 days, I started having a few twinges and tingly/burning sensations so I knew I had to go on back to 1200mg and I still am having those sensations.
After seeing Dr Kaufmann and asking about remission he said that in order to qualify for a true remission you would be off meds for at least a month. At one point last summer I suspected I was heading towards a remission and was able to get done to one half pill of 200 mg Carbamazepine a day when the demon reared it’s ugly head. I was so discouraged. That is as close as I have gotten.
TN1 is the sharp shocks and TN2 is the gnawing ache right? Readers digest definitions