Trigeminal Neuralgia Support Group

Hey guys, Im 19 and was just recently diagnosed with this terrible disorder back in december 15th, 2010. The doctor has me on 600mg of tegretol (3x200mg pills) a day and he prescribed vicodin. For maybe a few days or about a week the Tegretol started to work and now it just randomly stopped. I had no pain and it just hit me out of the blue again after a few days. I called my doctor and asked to increase the dosage but he denied it and he wants me to instead get alcohol Injections. Why did he deny it? Should i get the injections or first see a neurologist? I have an appointment with my doctor this wednesday. I suffer from this pain around the clock as if it feels like a stabbing, electric, burning pain. Shaving, and getting a haircut or washing my hair accidentally sets of pain. What can i do to help the pain? I don't want to have this for the rest of my life

Hello, I felt like you once before and i found this wonderful place MDJ. I thought all my teeth were hurting and did not want to touch my face, so painful.My doctor first shocked the nerves in my face The whole right side of my face hurt. That only lasted a few day Later I we back and this time he burned some nerves in my face . Now the pain is not there most of the. PLEASE GET A SECOND OPINION

This was done by a pain management doctor.

I hope yu feel better soon.

Hello, I was in your shoes at age 20. I am 26 now. I took Tegretol, along with others. Amitriptaline was the only thing to temporarily help, but it whacked me out with side effects and eventually quit working. Quick question- do you smoke? Chew? If you do CUT IT OUT NOW! Be honest about any habits you have about smoking cigs or pot and stop. It ain't worth it. It makes things worse. Trust me.

Get NORMAL sleep. That means being awake during the day with your eyes open and then getting about 7 solid hours of sleep at night. And EAT HEALTHY. Will these things cure you? No. But failure to do these things will ensure you do not get better.

I ended up finding a doctor at Barrows Neurological Institute in Phoenix, AZ and getting part of my trigeminal nerve killed where it starts inside the skull (trigeminal ganglion). They have some good specialists there. This did not fix my problems completely, but they have many options and are getting better all the time.

I got to the point where it was hurting me so much all the time that I told the doctors to be aggressive. It didn't matter that I would never feel a large area of my face again at the time. That is not good, but it was better than the alternative at the time. I don't encourage you to do anything drastic like this, but some people get to that point.

Let me know if any of this helps or you have other questions. There are other little things I have discovered help me over the past 6 years. Now I'm back in school and piecing together a normal life.

If there is any chance I can help you get over this faster, please let me. I didn't have help and barely survived. You are more than welcome to contact me with any questions, as I am still dealing with beating this and have more experience than you.

Cheers,

Marcus

Post edited by: Felidae, at: 02/14/2011 08:14 PM

Hey guys thanks for responding. I do not smoke cigs or cigars or chew any tobacco. I recently smoked pot just once to try it for the pain and it helped for around 30 minutes and man the pain came back 5 times worse. I was sitting there crying. I had no idea that it would do that Felidae.

I usually get anywhere between 6-8 hours of sleep a night. That's if im not in too much pain to go to sleep. I generally do eat healthy but im thinking of cutting out all fatty foods together and cracking down on completely being healthy as you said. 6 years is a long time and im sorry for you having to suffer with this

i hope they will find a cure for you soon! And thank you i will ask you more questions, no doubt.

Now can you guys answer this? I had "tmj" or so the tmj specialist thought. I received costeroidal shots in my left temple, cheek and around my tmj joint. Guess what? in my temple is where the trigeminal neuralgia started and it has been progressively getting worse and moving to the points where he has stabbed me with needles. I believe that is the cause of my disorder now... Do you really think the needles in my left side of my face where he stabbed me is how i got this disorder? Also where he stabbed me in my temple is a severe trigger point and thats where alot of the stabbing burning pain is and also my left eye. And now it spread to my cheek bone and my cheek.

I went to urgent care and the doctor said that if he put the needle in my temple, he no doubt damaged my trigeminal nerve there causing this. Could i sue the doctor for doing this to me? I was only 17 at the time.

One other thing. I had my wisdom teeth removed in around september 2010 i believe and i called the oral surgery center where i had it done and i asked the surgeons if they saw any sign of damage. They said no and if i did get damage, it is not related to where i am having the pain.

@mskat i will get a second opinion. Im on that right now

Post edited by: Rnewton19, at: 02/15/2011 08:11 AM

Post edited by: Rnewton19, at: 02/15/2011 08:16 AM

Also, ive been suffering from tmj pain since i was around 4 years old but that was at first just some eye pain with headaches and nothing whatsoever like the pain i have now but it has gone away in the past 3 or 4 years. Now its the pain i mentioned in my earlier post.. In the last recent few years its been progressing to where i was diagnosed with this. The tegretol has started working again for no reason, but not taking away all the pain. Maybe 30-40% of the pain. maybe because i accidentally missed 2 doses and i am back on track with it. And Felidae, i have the type of trigeminal neuralgia where its basically constant pain like you mentioned that you have yourself. Not the one where it comes and goes. I think its atypical trigeminal neuralgia? Like constant burning, stabbing jolting pain with electric shocks every now and then

Post edited by: Rnewton19, at: 02/15/2011 09:50 AM

Hello again. Hopefully some other people have insight on all this, too. I joined this little group recently and haven't talked to many people yet. Sounds like we've got the same thing. Crazy how our situation is completely off the radar of the general public. People just don't understand this kind of thing happens, and even if they do they still can't relate to it.

I don't know about the possibility some of what you're feeling could have been caused by those injections. I had the same needle fun, good times... not! It didn't cause any new symptoms in my case, but just don't know if it's possible. Sounds like you might be dealing with multiple branches of the trigeminal nerve based on where you described places on your face. Are you familiar with the branches? Tri-geminal basically means 3-geminal for the 3 main branches. My neuralgia is almost all on the 2nd branch (with some little stuff on the 3rd after surgery). If you have issues with more than one branch, it might help in narrowing down causes.

Speaking of narrowing down causes, I was focused on finding my cause so much that I think it bothered me even more. I had a tooth pulled and everything. It's kind of a paradox isn't it- the more you think about it, the more you feel it, and the more you feel it, the more you think about it.

Here's a couple of things that helped me a lot as I started improving about a year and a half ago:

-1) I accept the solution to my problem could take a long time. I learned true patience, and it has helped. It doesn't mean I don't want to be cured any less. Aided by patience, I began living by one word- "Progress". It doesn't matter if I am not at my goal yet, because I am making progress. Baby steps forward. Just like you can't see a child growing taller at any given moment, they are still growing. And if you measure their height every 3 or 6 or 12 months, you see they are really changing, moving in the expected direction. Young people can grow 6 inches without ever being able to notice the growing process week to week because it is so slow. "Progress", one step at a time, can be almost imperceivable.

Sprinting towards a solution can feel necessary, but it can risk crashing and feeling worse off than before if you put ALL your hope in it. I don't feel any better than yesterday or last week, but when I look back at December or August, I see my plan is working. I set longterm goals that I know are good for me, and I don't take steps backwards when I reach them every couple months.

-2) Ban The Word Pain. Read through everything I have said in this entire discussion and on my profile page and try to find a place where I said pain. You won't. I don't write it, I don't say it, and I don't think it. It took some practice, but now I literally don't even think it naturally. It's such a negative word, and for someone like us, it is charged with nothing but depressing emotion. It's what we have used countless times while describing our situation to other people. And yet, people do not understand what you are feeling any better when they hear that vague, stupid word. It is 100% negative. What I feel is a huge distraction, a discomfort, a sensation, a static, or any other description I come up with, but it is not a "pain". What does that even mean? It means nothing to me. I feel sorry for people who use that word... even if many who do aren't really hurting that much. It's hardwired into our vocabulary from childhood to basically mean, "something bad".

A side note also is I don't talk about my situation with people unless I am the one who brings up the conversation. I felt a lot better when my parents understood not to bring it up. I update them, because I would want my child to update me, but they don't ask me how I'm feeling or anything like that. When other friends or family bring it up with me, I just tell them the truth (in my perspective), that "things are good." They are good because I know I am making progress. Why tell everyone a bunch of details about what's wrong and throwing the word pain around?? It sure doesn't solve anything, and it etches a reminder in my head everytime I'm alone that I'm living with "p a i n". Definately talk to people WHENEVER you want to, but don't let other people bring it up with you.

You hold the key to that conversation.

Post edited by: Felidae, at: 02/15/2011 03:05 PM

Post edited by: Felidae, at: 02/15/2011 03:11 PM

I agree, noone seems to notice it except for the portion of us that really have it. We may have the same thing and i'm familiar because i've done so much research on it. And thinking about it does make it worse in a way, it's really weird! I do seem to have multiple branches affected. Whereas it's usually my left eye, temple, and cheek bone. Very odd. At least i can relate to you. It is a paradox as you explained it and it seems to be a cycle.

The needles were horrible! I didn't see any need into getting them but i was 17 and i thought, "hey maybe it'll help." Well i was completely wrong. I'm moreso thinking it was the wisdom teeth surgery i ahd 6 months ago. I had all 4 removed and the surgeon said there was a good chance of nerve damage. I even called and they said they found no damage on my xrays. Well i don't know now. If i go to a neurologist i will bring the records with me.

You know, you're right. I should not think about "pain", or let it get to me. I understand now that i have to have alot of patience for this in order for me to find something to cure me or at least deal with it as long as i have it. I do the same thing you do, i just update my father as on what's being done or the progress that is being made. And i shouldn't complain about it or sit there and just think of it.

He will ask if im okay but that's only when i update him on the situation. I even have a doctor appointment with my physician today at 11:45am. I will definitely let you know what happens and what is said and such. I'm supposed to get a referral to a neurologist if it all goes well.

I have accepted what i have and i know it will not just magically disappear one day for no reason. It will take time and i have to make strong but patient progress with this. I'm happy that i have at least found out what i have and that i am making progress on it. If i look back the past 2 months it was different.

Post edited by: Rnewton19, at: 02/16/2011 08:36 AM

Hey guys. So yesterday at my doctor appointment my physician switched me from tegretol to neurontin. And from vicodin to percocet. The percocet takes away my pain for 4 full hours surprisingly and it works amazingly well. I think i will only need it until the neurontin starts to really work. He also says that if the neurontin doesnt work we will go to 100mg 3x a day. Im on 100mg 2x a day. If 300 doesn't work then 100 4x a day. And the percocet is as needed. If the neurontin doesn't work whatsoever, after even increasing it, then he wants me to go to a neurologist and get either alcohol or glycerol injections.

Glad you're getting some new stuff to try. I tried Neurontin as well. I ended up moving on to Lyrica. Nothing worked completely, but Lyrica was my best medication out of everything (I got up to a somewhat high dosage, but it didn't seem to have side effects on me like some things.

Percocet is great, but it definately a temporary fix. It'll take more as time goes on to get the same result and is addictive. I've tried medicine like that too and just be CAREFUL. My parents and doctors did not do a good enough job telling me that, and I was pretty desperate when I had to stop it. Glad you found some relief, just be careful man.

Looking back on the stuff I said about feeling sorry for people who say the word "pain", I'm really talking about feeling sorry for myself back when I was obsessed with it. Wasn't trying to discourage you or tell you what to say. Just talking about a bunch of different things that helped me so you can maybe find 1 or 2 that work help you somehow.

Most of what I have to offer deals with managing neuralgia on your own without doctors, because that's the point I got to after about 5 yrs of medicine and doctors appointments.

So- trigeminal neuralgia makes us uncomfortable right? And we can't control it sometimes right? Well, I have been focusing on some things that healthy people don't notice much. These 2 things make us uncomfortable very subtly but that just adds to our being maxed-out on being uncomfortable already and makes the neuralgia more evident:

1) Slight Hunger- this begins to grow every 2 hours or so when we haven't had protein. At first, you don't notice it at all, but it is hardwired in our subconscious brain to make us more irritable. I keep things that are easy to chew and have protein around me all day (yogurt, hard-boiled eggs, cheese sticks). It doesn't take much to stop this subtle discomfort from putting you in a state of mind that notices your face more. After paying close attention to this for a while, I can now tell when I have missed my snack based on noticing my face more.

2) Slight Body Temp Warmth- I didn't pay attention to this my whole life, because it didn't make me uncomfortable enough to care. It can be as simple as wearing long-sleeved shirts when I don't really need the extra sleeves, or pants and socks that make my feet get a little sweaty. That's all it takes to make my face become more noticible. When your body (even just part of it) gets slightly warm, the vessels in your face dialate and this can cause a change in pressure around your nerves. I don't allow myself to get warm enough for any part of my body to sweat. In Missouri, that means not wearing long-sleeves indoors (even in the cold winter), and not wearing long socks indoors, and not wearing thick cloths in general.

Those are just a couple concepts I have found help me. We have to maximize our comfort in life by taking control of what we have power over. These little things that I used to not even notice have made the difference for me between feeling ok Vs. feeling like my face is overwhelming.

Ever think about letting your parents read this stuff? Maybe they can help you with some of these non-medication tactics that will help you while you're figuring things out. Couldn't hurt, and they'd probably think it was interesting to hear other people's perspectives who have been living with the same situation. Mine would have loved learning more about it like that because they were always trying to figure me out by reading things online themselves (most of which is not this personal).

ps. Like the songs on my profile page? You can put your own on by going to playlist.com and Copy/Pasting a link they give you on the site when you make a free song list.

So far, my pain is started to be reduced because of the neurontin. But it hasn't been long enough to really tell. I am very careful about narcotics or any medications. The main reason is.. My mom passed away 3 1/2 years ago due to respiratory depression from narcotics. It was accidental suicide. She had cancer, a herniated disk and many different diseases. So i really watch out. It's alright what you said about pain, i completely understand it. I have been trying not to think of it that much and it seems to help very little, but hey, any little extra comfort we get is amazing right?

I have noticed about the hunger. I become irritable too and i reach for a snack. it seems as if i've been eating high protein foods such as yogurt and cheese. I don't know if you get this, but when i eat, my pain seems to be slightly reduced? it's very odd but it seems to work for the amount of time im eating. i do seem to notice the pain more when i am hungry.

I've been keeping cool also, not wearing thick clothes. I generally wear thin clothes and keep myself cool. I never try to sweat and if i do, i drink water, and go into a cool room. Even though i live in southern cali, it's quite easy. I'm hoping to drop the Percocet when i get the pain under control. Of course i use it just as needed. I'm not the general kid that thinks "hey lets go get high!" I said the reason why before.

My dad has also taught me about the pain medication and he will go check it to see how much is left. You know, to keep count and watch over me? I have been explaining to my dad about all of this but you know, when he gets home from work tonight, I will show him this website and other info about it. Maybe it'll make him understand more as to what is going on and how other people such as yourself have this and are learning ways to keep the pain contained.

And i have 2 more questions, sorry if im bugging you. is it true that people with trigeminal neuralgia should have a low saturated fat diet? I read in one of the discussions here that lowering ur saturated fat could help with the pain and let the nerve repair. But i don't know how i got my neuralgia. And also, i've been starting to get the random severe electric shocks in my right temple now on the right side of my face. This is how it was before my left side became really bad. Is it starting on my right side now?

Post edited by: Rnewton19, at: 02/18/2011 09:56 AM