Trigeminal Neuralgia Support Group

Back from the weekend. Went home to see the fam and get a break from the daily routine of work/school.

I feel where you're coming from on your mom, newton. A best friend of mine lost his mom to the exact same scenario- only it doesn't stop there for him. Then his little sister (only 4 yrs old) got was unsupervised a couple days after his mom passed away and she ate a bunch of the painkillers and also died. He lost his little sister days after his mom, both from narcotics... YIKES!

I have noticed the same thing about eating and temporary relief. That brings up an interesting topic about how I think about trigeminal neuralgia and "cures". Some cures are temporary and some (fewer) are longterm.

I think of TEMPORARY relief like this:

Imagine our neuralgia is like a noise or sound you can hear. If you have ATYPICAL neuralgia like me, then that would be like having Tinnitus. Tinnitus means the perception of Sound within the human ear in the absence of corresponding external sound. Some people hear noise constantly when other people are able to relax between sounds. Sound familiar (no pun intended)?? I have Feeling within the face in the absence of corresponding external stimulus. Just like tinnitus, my brain hears something that isn't really there at the moment.

Temporary relief is like drowning out a background Sound with some other noise like music. Remember I'm comparing tinnitus with neuralgia. When someone suffering from tinnitus turns off the background music, their annoying constant noise starts to come back. Eating food is like background music. It temporarily drowns out my neuralgia by swamping my mind with "louder" stimuli. I get similar relief from other things like playing catch with a ball and massages. I try to do anything I can fit into the schedule that involves not doing nothing while my trigeminal nerve sends messages to my head. Most people can enjoy sitting still and feeling nothing, but it's more complicated for me.

Not sure about the low sat fat diet. But I'm always open to possibilities. Maybe I'll try cutting back and looking for a difference over a couple months. I don't eat much sugar, but my fat intake is probably above what's recommended.

And now you have sensations in both sides of your face, newton? Having it on 1 side is called unilateral or one-sided. If you have bilateral feelings, it could be important. Just wait and see if anything definately starts happening on the other side, and maybe it will help you tell what's really happening in the long run. There are all kinds of things that cause this, like being in an accident or MS. I think the leader of our group found out later that she had MS. Apparently, TN (trigminal neuralgia) can be an early sign of multiple sclerosis (MS). And many other people have no other thing going on.

Think we should try to get some other people into a discussion. Tomorrow I'm going to start a new one that invites more people in hopefully.

That's good. I'm glad you had time to relax. How was it by the way?

That's horrible, i couldn't even imagine having that happen to me. It's very hard to deal with.

I agree with you about the temporary relief. It's like you either eat, or listen to music and focus on work or school and it seems to be in the background. It works, at times. It's very odd, but sometimes when you really need it, it's amazing.

I too, have atypical trigeminal neuralgia. it's a burning, stabbing, piercing pain with every now and then quite often with the traditional electric shocks. It's unbelievable to deal with.

I always try to do things that make me focus too so i don't have to listen to my nerves being interrupted if you know what i mean. Filling in any boring, uneventful moments does help.

Well about the low fat thing, i read it in an article here on mdjunction.com So i wasn't quite sure if it is true or not, but i'm thinking, hey it could help. Never hurts to try right? Let me know if it helps you at all.

Yes, the sensations are on both sides now. But on the right, where i don't really have it, i get a random severe electric shock in my right eye. It's odd and it has just started in the past week. Then after that, it tends to burn or ache when the shocks are done. Then it just goes away, not coming back for a few hours or a day.

I did read about the MS and it being an early sign. I just hope maybe that's not what i could possibly have, or you.

I agree, let's have others in the discussion. I'll look for your post tomorrow. Have a great night.

Richard Newton.

Weekend was good, pretty laid-back. Went out Saturday for some shopping and food. Hung a wren house (small bird) near parents window, drank a few beers, and messed with homework.

I started a new discussion just titled, "Join the Convo". Think it's in the introductory discussion category. Hope the neurontin's doing something for ya.

That's great, i'm glad! It sounds like a pretty nice weekend. Okay i will go join it.

I thought I had postherpathic neuralgia since this only occurred following a shingles outbreak, but the more I read, the more I think it's trigeminal neuralgia. I've always had tooth pain, but in the past month or so it has intensified, almost like when you have a bad tooth and it's sensitive to cold. I've also begun having spasms on my face. I've read that anticonvulscents sometimes help. Has anyone actually had success with this> if so what meds specifically? I'm uninsured so I need to know before I pay out of pocket for another visit to the doctor and a prescription.

TN is one crazy thing. They burned the nerves in my face. the pain was gone almost a year, now it is back and I feel like crap. Did you look at any of the videos that were sent out. If not contact one of the leaders. I belive it will give you some peace. I know it is a hard thing to deal with but keep your faith and things will get better.

Kathy

I've looked at the videos. They don't really tell me more than what I've read online already.

Dear RNewton:

some people have success with this new low saturated fat diet and TN symptoms.

Here is a link for more information about the diet and Trigeminal Neuralgia.

http://www.ehow.com/way_5653247_trigeminal-neuralgia- diet.html

There is definate success with homeopathic remedies. I was trying them too, and let me tell you that it is better than the awful drugs they give you. And after a period of time you can stop them. I stopped them (the homeopathic remedies) for about 5 months but then the TN started coming back and so I went to another Naturopathic doctor for help. I WASN'T DOING IT RIGHT- I found out that with Homeopathic remedies, you have to take them 15 min before you eat or 15 min after you eat and then no coffee while you are taking them.

Another method is acupuncture and I have heard some good things about this with TN.

I wish there were more studies about TN, because maybe if we know what causes it, then this can lead to cures anand prevention. About 1 in 15,000 people have Trigeminal Neuralgia. Doctors don't agree but some studies suggest that the Trigeminal Nerve is damaged or its myelin sheath is irritated.

Pat

Post edited by: patthayer, at: 04/04/2011 04:40 PM

to Puds38:

you asked what drugs would help with TN. My first doctor, who is a neurologist, prescribed Trileptal. In 2 weeks, the dosage had to be tripled to get relief from pain ..up to 900 mgs. the gold standard drug for Trigeminal Neuralgia is Tegretol, but I hear that it causes organ damage over the years. Sometimes doctors will give you gabapentin and tegretol or trileptal and vicodine too.

I have not been on those kind of meds but I have been on homeopathic remedies. I went to Biogetica.com and sent away for the $50 kit which helped alot while I was on it. Then 6 months passed and I went off them, and the pain stayed away about 5 months longer. that is 11 months total without pain. Now it has been coming back and guess I should go back to the homeopathic remedies. But itleast I havent been on the drugs---or surgery yet. Acupuncture would be a thing to try to.

All I can say, is if you have to pay $200 to see a neurologist and get the meds without insurance coverage, you might as well try to order homeopathic remedies over the internet that do not cause side effects and really do seem to work better. Itleast they did for me.

Also there is that low fat diet to try. I am on that now too, to see if it will help me.

God bless you and may you be pain free soon.