My neurosurgeon says that the trigeminal nerve can repair itself somewhat from the damage the compressing blood vessels cause and this results in remissions or pain free periods. However, eventually so much damage is done that the nerve cannot repair itself and the result is constant pain. I have had TN for about 12 years. Right now Tegratol is working a miracle for me and I am mostly pain free but am fearful of too much nerve damage happening and have a MVD scheduled for Feb. I would be happy to be on tegratol for the rest of my life but am afraid of what will happen if I don't have a MVD. I would like to know other peoples thoughts on this.
I have that problem too....when I'm pain free and doing things people remember that so when I'm in terrible pain they don't get it, especially when it keeps happening. And yes any frustration does make the pain worse. Sometimes I feel bad when I have to tell my Son or Daughter that I can't talk over the phone because it hurts too much. Then when I'm pain free I talk and talk, lol. But too much talking and laughing always brings on some pain.
It's so nice to have this site where can share all these things and get excited for others when they are pain free!!
shadow2 said:
Not to mention that when we are not feeling well enough to socialize, having to explain why we cannot participate takes so much effort that it is nearly impossible at the time. For me, when I am trying to explain and getting questioned, I get frustrated, which increases the pressure in my jaw and makes my pain worse.
Nora, my life with TN has been unusual as well. Nearly 2 years ago I had months of frequent pain.... nearly an entire day of it prior to my diagnosis, then a few each day for nearly two months. I became very stressed and busy as my mother was diagnosed with a brain tumor and I added "caregiver" to my usual job (teaching). My siblings, husband and children (19-27 at that time) were very supportive. I had fewer episodes and in the last year (Mom passed 5/2012, Dad 4/2013) I have worked very hard (practicing yoga, drinking more water, watching my food intake very carefully) to become healthier in general and lost 30 pounds. Since Dad's passing I have headaches nearly every day, however they are controlable... I concentrate, medidate, and they never crest the hill of uncontrolable pain as they did in the beginning. Has enyone else had this sort of path with TN?
It is so true, excessive chewing and laughing can bring the pain on...I remember a year ago singing so loudly in church "The Twelve Days of Christmas", sections of the church were competing on who could be the loudest and oh my, jaw pain, more face pain. I also find if I am in mild to moderate discomfort doing something I enjoy like painting, or being with my grandchildren, singing and rocking them to sleep has a positive effect on my overall pain. Must be those natural endorphins we all have...when I am alone with my pain I too try to meditate and go to a quiet place in my mind. Wishing everyone a Happy New Year and hopefully more pain free days! Sharon
I am taking 50 mg. Elavil and 20 mg of Baclofen per day. Seems to work so far. Don't want to be stupid and try to stop the medicine if I'm feeling good BECAUSE of the medicine. Wondering how many people are able to stop the medicine and continue to feel good?
Nora, All I can say is take this blessing and run with it! My Neurologist told me that I could cut my dosage back if I was 4-6 weeks without pain. It is either going to be gone or not. It is really up to you as to if you are willing to take the chance.
The singing must send vibrations like an echo through to the nerves because I find it hard to sing now, but like you said Granny when ever I rock my grandsons to sleep it doesn't bother me, must be because the singing is low and soft. I love doing that, especially when they go to sleep right after.......
Granny said:
It is so true, excessive chewing and laughing can bring the pain on...I remember a year ago singing so loudly in church "The Twelve Days of Christmas", sections of the church were competing on who could be the loudest and oh my, jaw pain, more face pain. I also find if I am in mild to moderate discomfort doing something I enjoy like painting, or being with my grandchildren, singing and rocking them to sleep has a positive effect on my overall pain. Must be those natural endorphins we all have...when I am alone with my pain I too try to meditate and go to a quiet place in my mind. Wishing everyone a Happy New Year and hopefully more pain free days! Sharon
Nora,
I too am in my first remission since diagnosis. I am also guarded. I stopped all meds but am cautious. I always bundle up my face in the cold. I went off meds for a few reasons. First. I want this med to work again in the future. If I keep it up I'm afraid I might stop responding to it and want to keep it my arsenal. I checked with my neuro and she agreed that it was a good idea. I'm on nortriptyline and at least in depression it stops working. I did it gradually and for the first few months, if I felt any twinge, I took one right away. I also kept up my prescription so I have backups in the future. Second, of course the side effects. But it's been 4 months off meds and 2 months without one twinge. I know from reading the first remissions last the longest and gradually shorten in duration through out the disease. But right now I am so relieved. But I keep my whole pain kit with me at all times, just in case. Also my migraines stopped as well. TN and migraines often go together. I hope we both are in remission for a long time.
This makes me happy. Maybe I will try stopping it gradually and seeing what happens. I hadn't thought about the fact that we could be building up a tolerance for it and it won't work when we really need it. Glad to hear that someone had tried it and it worked. I have had migraines for over 40 years, so not sure if mine have anything to do with the TN. Would be nice if one went away and the other tagged along. :)
Nora, have you tried acupuncture for migraines? I suffered terribly with migraines about a year ago and was able to get it under control with acupuncture. In full disclosure, I do take gabapentin but it was not helping with migraines. After a few months of pretty regular acupuncture I have very few and less severe headaches.
Nora said:
This makes me happy. Maybe I will try stopping it gradually and seeing what happens. I hadn't thought about the fact that we could be building up a tolerance for it and it won't work when we really need it. Glad to hear that someone had tried it and it worked. I have had migraines for over 40 years, so not sure if mine have anything to do with the TN. Would be nice if one went away and the other tagged along. :)
Hi, Nora
You have posed the great mystery! I'm sure we all wonder whether we could get off the meds that make us feel depressed, unenthused, spacey, tired, out of it, etc. But, withdrawal is a slow and serious process, and each medication has its own nasty side effects through withdrawal. I, too, have enjoyed weeks in between episodes, whereas they were coming in constant waves. I still catch myself fearing the possibility of pain, when I detect that little pressure, dizzyness, and other symptoms which lie just "under the surface" and threaten a grandiose attack. I'd love to think I could go without chemical intervention, but I also know that neither my Tramadol nor my Baclofen are fast and effective in a sudden crisis, so I coward out and make sure they are both in my bloodstream at all times. I have Gabapentin, but it makes me sick and often seems to escalate the pain. I am thankful that it has been months since I just prayed to die...worrying about how I will care for my daughter and handicapped sister if this demonic ailment gets the better of me, and worrying about the possibility of living without any respite. So, it might be a wonderful, re-creative miracle that has graced you, and you could, indeed, chuck those meds and be able to just pop an Advil like "normal" folk -- I would be genuinely happy to know that you have escaped this hideous dis-ease. But, research the withdrawal protocol, including how long before the drugs are completely cleared from your system, so you can begin counting the days from that time, that you continue to experience freedom. All the best to you! Kimberly
It is all about possibility. It took me a long time to discontinue nortriptyline but I did not go off Tramadol and have been on it for years. And have never built up a tolerance to it so that's at least on drug you could stay on. Nortrip works pretty quickly and I always have it with me so at the first twinge, I take one. The other drugs do take a while to get into your blood stream and I probably would stay on at least a low dosage just in case. But while the nortrip works I want to use it since it has less side effects than the other drugs. I was on trileptal but had to off of it because I couldn't stop vomiting. But I would go on it again if that's all I had that worked on this pain. I haven't escaped this disease, just in remission. I'm 45 and if I live to 85 that's 40 years having to deal with it so I need to keep as many drugs that I can working because it will come back. And if the literature is correct it will be worse and last longer. I am planning on MVD in the future as well. Even though it's not a cure and I'm in remission now. One problem I have is dental work wakes it up and if I need it, I'm pretty sure my remission will end.
Isaiah54Woman said:
Hi, Nora
You have posed the great mystery! I'm sure we all wonder whether we could get off the meds that make us feel depressed, unenthused, spacey, tired, out of it, etc. But, withdrawal is a slow and serious process, and each medication has its own nasty side effects through withdrawal. I, too, have enjoyed weeks in between episodes, whereas they were coming in constant waves. I still catch myself fearing the possibility of pain, when I detect that little pressure, dizzyness, and other symptoms which lie just "under the surface" and threaten a grandiose attack. I'd love to think I could go without chemical intervention, but I also know that neither my Tramadol nor my Baclofen are fast and effective in a sudden crisis, so I coward out and make sure they are both in my bloodstream at all times. I have Gabapentin, but it makes me sick and often seems to escalate the pain. I am thankful that it has been months since I just prayed to die...worrying about how I will care for my daughter and handicapped sister if this demonic ailment gets the better of me, and worrying about the possibility of living without any respite. So, it might be a wonderful, re-creative miracle that has graced you, and you could, indeed, chuck those meds and be able to just pop an Advil like "normal" folk -- I would be genuinely happy to know that you have escaped this hideous dis-ease. But, research the withdrawal protocol, including how long before the drugs are completely cleared from your system, so you can begin counting the days from that time, that you continue to experience freedom. All the best to you! Kimberly