I was diagnosed with TN around ten months ago and have pain on a pretty regular basis. I mostly get the pain in my left jaw and as a result talking can be very difficult.
However I find that a gentle walk will completely take the pain away. My partner and I will set off on a walk and by the time I have walked 200-300 yards I will be pain free and talking normally. This will continue all the time I am walking but as soon as we get home and I sit down within around 10 minutes the pain will be back again.
I mentioned it to my neurologist a few weeks back who said that he thought it was very unusual but only really commented that I was lucky that I have a way of relieving the pain.
Does anyone else find that walking has this effect?
In some ways it is great that I have a way of being able to be rid of the pain for a while and be able to talk but it also frustrates me that I don’t understand why this happens.
I have experienced the same thing. I get pain releif when I go to the gym and work out. It goes completely away and then when I hit the showers it would return full force. I thought maybe it was the warm water so I started waiting to take my shower to see if that helped but the pain came anyway. I found that if I was just sitting it came on worse but If I kept moving around a lot during the day if was less intense. I also got relief when I was sleeping. So exercise and sleep became my escape from pain. I am now on a low dose of tegritol (100 twice a day) and am pretty much pain free. I wish I could be of more help. The Doctors couldn’t explain my symtoms either.
I can understand that vigorous exercise can help but it happens for me at a gentle stroll. The only other thing that 'always' works for me is standing in a hot shower for at least ten minutes so that's different to you. Seems we all have different triggers.
For me being upright eases the pains so I can only think that there is something that makes my symptoms worse when I sit or lie down. It's frustrating not knowing but there is much that is annoying about this condition.
What I really need to do is to find a way of sleeping standing up as that would solve my nightly battle to get to sleep!
It's so good to hear that you are nearly pain free - I hope that continues for you. :-)
I have almost the same thing happening to me. I can cut grass, trip around tree, and work with the horse and be almost pain free. When I sit down after supper the pain starts and stays with me almost all night. It seems when I moving around the pain stays away. Also when the pain starts if I stand up, and bend my head make the pain will go away for a while. Sometime if I wiggle my nose a lot it will help also, I know that sounds funny, but it helps me.
Lots of people seem to be affected by atmospheric pressure. Do you think we are also affected by vascular pressure? When you think of it, excercise gets the "blood pumping" so it might make sense there would be a change in our pain levels one way or the other. Very interesting.
I'm going to start wiggling my nose a lot and see if it helps me Don:) Seriously though, I'm glad it works for you. If I exercise too hard my face starts to hurt. Walking is fine though.
i've been speaking with a researcher in australia who suspects TN and subsects of the pain are due to a starvation of oxygen to the nerve. the theory has merit, it could explain why pain is worse lying down, but there are anecdotal stories of people who are caused great pain by exercise. so, take it with a grain of salt.
a researcher in boston (where i live) thinks stories like yours are due to the brain diverting its attention from the pain signals to whatever activity you are engaging in; walking, yardwork, etc. once a person is quiet; lying in bed, sitting in a chair, etc. the brain is tuned into the pain signals again. again, the theory has merit (i definitely can tune out the pain when i'm busy), but i'm always open to other possibilities.
i've been speaking with a researcher in australia who suspects TN and subsects of the pain are due to a starvation of oxygen to the nerve. the theory has merit, it could explain why pain is worse lying down, but there are anecdotal stories of people who are caused great pain by exercise. so, take it with a grain of salt.
a researcher in boston (where i live) thinks stories like yours are due to the brain diverting its attention from the pain signals to whatever activity you are engaging in; walking, yardwork, etc. once a person is quiet; lying in bed, sitting in a chair, etc. the brain is tuned into the pain signals again. again, the theory has merit (i definitely can tune out the pain when i'm busy), but i'm always open to other possibilities.
Hello Vesper..Any chance we can get a look at that research?...I grew up in Boston (Allston)..I worked at Mass General years ago ( EW Clerk).I read recently that MGH has specialists and research re TN...Know anything about it?
Walking up hill, exercising or strenuous activity often decreases pain, Before I was diagnosed and didn't know what was going on it was bizarre, When the Shock Attacks occurred, ( I was still in the I must still have a dental problem) I gritted my teeth, went through some facial contortions and said lots of words not allowed on this site.
At night, I had to keep my head as straight as possible to avoid pain. I do understand the desire to sleep standing up. Call the Star Trekkers. They can do it
There are times when walking down hill is very uncomfortable. There are also times I have to walk on my tiptoes because the vibrations cause pain..A ride in a car on a bumpy road can set it off..
I was feeling pretty good the other day.( gabapentin/lamectil). Acting against that little mental behavior warning, I bit into a bagel. I hadn't eaten one in awhile..ZAP ZAP ZAP!. Thunder in the brain and lightening in the face..
Wow, do I know how you feel. I sometimes hope I could sleep standing up. I doctor has lower my meds, we will see tonight if I have problems again. I know all about the thunder in my brain, and the lightening in my face and eye area.
i can ask the boston researcher if he has hard data to support his theory. regarding mass general; there are a few notable doctors who treat nerve pain and damage; Anne Louise Oaklander (good luck getting an appointment under a year) for one. there is a neurosurgeon who is reportedly excellent for TN, Emad Eskander, but i have never met him.
