There have been threads on this topic from a few years ago, but I wanted some more updated feedback (Red, I hope you can address this with your expertise). I am in the midst of an episode that will likely last another week or two. That’s how it’s been in the past anyway. I add Neurontin to my daily Lamotrigine and it tends to make me drowsy enough to fall asleep.
I have no pain while I sleep. I have Type 2 so I don’t get the zaps that might interrupt my sleep. It’s such a relief and I look forward to being able to nap. When I wake up the pain returns within minutes of standing up and it’s at the same intensity it was before I went to sleep.
My question is: Does the Trigeminal Nerve “sleep” too or does it calm down when the body calms down? Does the pain subside because there aren’t other factors that can exacerbate the pain? I find that stress makes the pain worse and, of course, there is no stress while sleeping.
I appreciate anyone with thoughts or who can share similar experiences.
Hi. This is something that I have noticed as well. It is almost like sleep somehow resets things. Where one day I might have a flare up and then the next day nothing. I don’t understand that.
But I am also pain free if I wake in the middle of the night. Generally I am also pain free in the morning. My flare ups tend to start late morning or early afternoon and build throughout the day. Late afternoon and early evening tend to be the worst time of day for me.
That’s how mine are. I also describe it as a reset. I don’t hurt while sleeping and if I wake up in the middle of the night on average I don’t hurt. Mornings I don’t hurt right when I wake up but as the day goes on the pain builds. I have made the mistake of skipping the pain meds with my morning meds cause I wasn’t hurting. Then it really started to hurt. Not sure why sleep soothes it except for your not moving as much. The blood vessel isn’t pumping as hard? Haven’t really found a explanation but some educational guesses.
Our body shuts off a lot of sensations while we’re asleep. I am pain free when I first wake up as well, but the symptoms restart within minutes.
During my worst attack I had no pain while sleeping, but getting to sleep took forever and I had to hold my head perfectly still. I wake up a lot at night so just a few hours later, I woke up and all it took was moving my head or standing up (to go pee) and the attacks would come back in full force.
Wish that somebody could just inject us at night with a magic sleep potion while we’re in pain.
I have TN and GPN, though my TN has been I remission for a couple of years, and my GPN is largely controlled with medicine at the moment. Generally, I sleep without pain, but I have started waking up with an earache that lasts the day. Usually, if I take a tramadol, it knocks down the pain and I can function. I hate that it’s starting to wake me, though. It’s kind of like when I used to get migraines, which always started in the wee hours of the morning.
I also have no pain while I sleep. I thought maybe blood pressure is lower or something.
I may have type 2 but don’t get huge zaps just constant pain. Your second paragraph sounds just like me. Can’t help you much but it sounds similar to what I have.
Well I have had the following: Started out on gabapentin and it took a way all my pain for a couple of months. Now it has come back and I am up to 2400mg daily. I was not hurting at night now I do when I move so I am not sure what to make of that but it appears my TN is getting worse.
Hi Karen looks like we have something similar, I have Trigeminal nerve trauma, I sleep very good but when I stand up the pain and the bad sensations starts and constantly continue all day. I am taking Gabapentin 300 mg 3 times a day. It helps 60% of my pain. I do not have yet any sides effects except that I urinate big quantities (not very frequently).Last week the Dr. gave me 3 shots to the nerve its really heart. I don’t know what he injected, He didn’t want to tell me. It does not help. the same pain. Nira