Evening!
I had my first documented *whatever* Super Bowl Sunday night, and after it started in the middle of my palate, all the pain seemed to camp out on the right side. It ebbed and flowed for about 2+ weeks, and then sort of dulled down to where I thought, "eh, just a fluke."
This past Sunday, I caught a horrible tummy bug and in 2 days, I lost 7+ pounds. It was stressful, ugly and I am soooo glad to feel better today. But tonight, I seem to be having the beginnings of another attack, but this time it's on my LEFT side (upper cheek, teeth to lips, side of tongue and mid cheek).
Can TN jump sides?
Hi Helenann,
I don’t think TN can jump sides, since it comes from compression on the nerve, and you have on on either side. It is possible to have bi-literal TN, which is where there is a compression on the left and right nerve. This is what I have. Sorry you are going thought this. Have you been to a neurologist yet?
Best
Christine
Look under the groups tab and type in bilateral - also put in search box above -- I'm not sure if it means that it has to be both sides at once - or bounce back and forth.....
I was going to have the MRI this Tuesday, but I had the stomach flu. Not a good combination, LOL. Now it's on the 19th. I know MRI's don't show things a lot of the time. I am just lucky my doctor thought this is what it was from the beginning--that, or a herpetic neuralgia, but the antiviral didn't do anything that we could tell. Steroids did help, but I was stoned sounding, according to my AA sponsor. (I've been sober for 14 years)
I am so curious to see what is happening. Could something be compressing the nerve before it splits...? Thank you SO much for your responses!
Hello Helenann, my pain jumps around quite a bit. It can stay in one spot for a few days or weeks or it can move around several times a day. Generally, it moves around on the same side, but it has been known to leap from the bottom left to the upper right, for example. Sometimes it seems as though the pain builds to the point where it wears the nerve out and then moves on to another spot and other times it moves without any apparent trigger or cause. My doctor says that he has never seen another patient with a presentation exactly like mine and that it is highly unusual.
I have read so many different descriptions of everyone’s pain here; it does seem as though this condition doesn’t follow any rules. I’m sure it must baffle our doctors as well as us.
Your tummy bug sounds horrendous! I do hope that you are feeling better.
Take care,
Chris
when i was at the pain clinic recently i was told that pain can spread along the nerve. Though i was not told it can switch to the other side of the face, when ewxplaining some of my pain areas not from the original sirte of pain the dr explained that being in pain chronically (for me ten years) when your body has constantly received so much pain messages it affects the nervous system and you can begin to have pain in new areas unrelated just because your brain starts randomly telling you different areas have pain. I dont remebr the correct scientific term he used but he said it was about the pain center in the brain actually becoming slightly enlarged due to excess pain constantly..it is hard to describe and i shpuld not really write that here without remebering the corerct terminology..sorry bout that . But it was only dr's and specialists at the pain clinic who all mentioned this same issue to me, i had never ever been told that before. They said it can go back to normal with various treatments and therapy...waiting to recieve help from them. For once i wasnt offered a miracle cure, just help to cope and get back to living my life no matter what. anyway...erm i reallytrailed off and maybe was not so helpful..sorry :/ tegretol stole my point i was going to make..basically i hope that yours is that, your brain sending confused pain signals..as that is soemthing that can be treated apparently.that i know of tn does not 'spread to the other side' but bi lateral tn is something i have come across on this site. i really hope you do not have compression on both sides. take care x mel
Hi Mangamel, thanks so much for your input! It was so helpful. I found what your doctors had to say so interesting because I have been dealing with chronic pain for so many years myself. In particular, I have two adjacent teeth that were both fractured that bugged me for years. I told my dentist about this during my check ups, but because the fractures were tiny and there wasn’t any evidence of decay or abscess on the x-rays, he was hesitant to do unnecessary dental work. By the time the pain got so bad that I couldn’t stand it, root canals were done and pus and decay were found in both teeth. I sometimes wonder if I would have as much pain in this area if these teeth had been treated sooner, but I will never know for sure.
One doctor suggested that perhaps whatever fractured my teeth on both sides (likely being hit by a car and landing on my head) also damaged my nerves, which would explain why my pain is bilateral. From what I understand, though, damaged nerves hurt constantly, and that isn’t the case for me, thank goodness. Even though it does jump around, my pain sticks to the pathway of the Trigeminal nerve. I have also had a positive response to anti seizure medication.
Even though my doctors don’t have all of the answers, I know that they are helping me to the best of their ability. My approach has been to always be honest about what I am experiencing (even if it doesn’t fit the “normal” parameters of this condition), to look after myself the best I can and to wait for medical science to catch up and discover the cause behind my pain, and, hopefully, a way to stop it.
If you don’t mind sharing, what type of treatments are your doctors suggesting? I would love to hear more about your experiences and what you have found to be helpful.
Take care,
Chris