It's rather bad when you join a forum like NeuroTalk, can look down at the list of conditions and realize that you can post in more than one forum for separate health conditions. lol

A few days before I turned 22, I had a root canal. It was a painless procedure, I went home and as the numbness wore off, I felt tremendous pain. I waited it out, waited even longer, started a new job around that time as a cashier, and kept waiting. Finally, I saw my dentist, complained, had x-rays done and nothing. I was sent to a more specialized dentist, who did digital x-rays and... nothing. Some of you can probably see where this is going.

It took me over a year to see a neurologist. In that time, I became so self-educated about Neurology that I knew by the time I did see a Neurologist that I had one of a couple things. It's amazing how FEW things can cause chronic face pain, isn't it? Also during that time, I lost my job as a cashier. My pain, completely uncontrolled, was there everyday. With no understanding of my condition, I was likely working the worst job possible other than maybe tech support. I had to talk and smile at customers during the busiest shopping hours of a major grocery store. I was swallowing anywhere between nine to twelve ibuprofen a day, with no real realize, having a hard time eating, and sleeping only four hours a day. After a month, I could no longer do the simple math necessary to fulfill my job.

I finally did see a neurologist, had the usual barrage of tests you're all likely familiar with: a MRI (clean), touch tests (WHY!? lol), poke tests (again, WHY!?), and was put on carbamazepine after gabapentin failed to do anything. It has been somewhat successful in reducing my pain. The only thing is... I can't talk anymore. I choose my words and just don't want to speak anymore. When I do, it's so excruciating that nothing but time and continued silence seems to end it. I don't want anyone to touch my face. I don't even know who I'm supposed to talk to about this. The subject of pain, my situation, and my health makes my friends--who are wonderful and mature for their age, but let's be reasonable--very uncomfortable. After a year of suffering, I confessed to my father, who lives hundreds of miles away and his "consolation" was, "Don't tell your grandmother."

I can't find a job where I don't have to speak, or can do speak so infrequently that it wouldn't matter. I keep considering taking up learning sign language, but if only I learn and not those close to me... it seems pointless. It's gotten to the point where I dread anyone taking enough interest in me to ask, "So what do you do for a living?" because I can't earn an income.

When I finally saw a neurologist, I felt hopeful that I would receive answers and maybe begin to heal. Because of my age and the mysterious cause of my TN, which was the final diagnosis, my neurologist has no interest in surgical methods. So I continue to swallow carbamazepine 3-4 times a day and avoid talking too much, smiling too much, never putting on make-up and washing my face very carefully.

I know this is a story many of can empathize with. I just can't stand how trapped I feel over it. I keep trying to deal on my own, because I really am a strong person. I've had fibromyalgia since I was 15 and a half. And anyone who is familiar with that knows the craziness of that illness that induces such speculation from others, even doctors. But there are things you can do for fibromyalgia: major diet changes, massages, exercises, buying special beds/mattress covers, herbs, etc. Although none of these things "fix it" or "heal it" and you could do everything and still feel rotten, at least there is something you CAN do. My experience so far with TN has been the opposite. Instead I have a list of things I cannot do that overwhelms me: do not talk too much, do not smile too much, do not touch face, do not, do not, do not...

I'm not certain how I'm supposed to connect with people my age anymore. There interests are in dating, movies, new purchases, college, their jobs... For them a happy day is one filled with things like good luck, a good grade, a gift from someone. For me a happy day is one where I can talk longer than twenty minutes and not pop a carbamazepine.

If anyone has any advice, I'm all ears... really...

Also, I have a question: Since my root canal thing I've been very careful with my oral hygiene. I brush three times a day, always floss, and use fluoride mouthwash when I can remember. I see the dentist twice a year. I'm not sure why, but I still get 1-3 cavities a year. I recently found out I had a cavity on my right side lateral incisor. It's the side I dread, as that's my "bad side." I was under the impression that it was a small cavity, but it's so excruciating that I actually feel nauseous. I feel like screaming to be honest, it hurts that bad. It isn't abscessed and like I said, I was under the understanding that it was a pretty insignificant cavity and couldn't possibly have hit the root yet. I have an appointment on the 6th (earliest I could get) to have it filled. I'm wondering if anyone else has just had a cavity, that though minor, was so awful because of it's location and TN. Is it normal for TN to make tooth pain feel worse than it is? Or is it possible that the TN is being irritated by the cavity?

I would try to find a diffrent neruo doc and too also find a pain doc too. Pain doc helped me sooo much, .You need to be on the correct meds and at the correct dose and usually a pain doc will help more so then a neuro.
I personaly find that a neuro want nothing to do with me really .
and you know what I went threw months of not being able to watch a t.v. cus every ones mouth worked and they talked without any problems or pain stabbing their face . it made me so "sick " I couldnt watch a dang t.v. or movie with my kids. For not speaking you can find yourself a pad of paper and pens I did that for a bit wrote what I needed to say .
I feel trapped in a way that i hardly ever tell people i have t.n. anymore as no one understands it really and also i do not tell most people i see everyday that i have a neuro stim for my pain. I have been working about a year at the same hotel and no one knows I have this device or that I have face pain.
It is like I am ashamed like i am trapped in a way I guess . so i can relate a litle to you.
as for dentists i hate them My accdient made some teeth get knocked out and my jaw was a big mess. i have had tooth work done since and everytime I go I have them numb the heck out of the area I get like 5 shots just to clean my teeth. You have achy tooth obviously you dont like putting your head down or bending over cus that makes the blood rush and the pain throb big time . I dont recomend this but in dire emergency I one time took candle wax and filled a tooth, dont use a bug candle but just a palin one. get a ball of wax and gently cover the ugly mean tooth. it worked for me until I got in and had it filled. becareful eatting and drinking you know with t.n. the temp makes a diffrence and moving air when one has to breath threw mouth rather then the nose is a PAIN to the mean tooth. I think your tooth and T.N. pain are feeding eachother right now and your body cant tell one from the other it is all mixed together into one giant hell of a bowl full of pains. I send one of the biggest pain free wishes I have sent anyone in a long time. because I know how you feel and wish I could reach threw the vitural world of comp and take the pain away. but I cant . I am sorry for your pain.
dont give up there is lots of us just like you , you just have not met all of us yet ,find a diffrent neuro and find yourself a pain doc!!!!!! if your tooth is really really bad go to e.r. maybe a nerve block will help you for a short while.
I am guessing you are in your 20s ?? I am 40 i could post in the chronic pain room or if they had a phantom pain room Id be there too and sleep apnea ...
you are not alone . many many pain free wishes, a stack of blessings and I hope things improve and you find a better doc and pain doc .
Please keep us posted.
Peace Peace
Tina

Thanks for your reply, Tina. I agree that I really do need a pain doctor. In the past, I've never had the best of luck with pain medications, but the way my life is now is not working. I need to try and do something else. I've had this for a year and a half now. I didn't find out for certain what I even had until recently. More than a year was spent with uncertainties and doubts.

I hated watching people talk on TV/movies too when the pain was really bad. But mostly, if I told someone, "My face hurts" I disliked that look of incomprehension even more. So I'm in your camp as well, I'd rather not tell anyone there's anything wrong.

I'm assuming from what you've said that your TN came from your accident; so the atypical TN, or post-traumatic variety? After I first started having pain, I'd look in the mirror and expect to look like I'd just walked out of an accident that incurred damage like that. When something hurts so bad, you expect to see damage. The first couple months with it, I didn't know what had happened and kept saying, "I feel like my face is broken." It seemed ridiculous that something like a silly root canal could do so much damage. It's kind of scary, to think how fragile we are.

I'm glad you said the things about the dentist. When I had my teeth cleaned the last two times (both since I've had TN), it was very painful. I thought I was being "wimpy." The gum poking and any plaque scrapping--which I never need much of thankfully--is what bothers me. Your situation is much different from mine because of your accident, but it's still comforting to know that it isn't unusual for small things to cause pain. I've taken to hating flossing as well. It sometimes hurts to floss on the upper right side. The only thing I like about the dentist is after four shots for a filling, I have a little while without pain, it's nice... even if it never lasts.

It turns out the reason why I'm in such bad shape is: the TN, the cavities (both on the "bad side), and I have a sinus infection that I left untended thinking it was just "really awful allergies." I think it is, as you said, all that pain is feeding each other making it one big ball of suffering. Today is a little, but I think until I get my sinus infection managed and my cavities filled, I'll just be hurting a lot.

Thanks again! And yes, I'm 23.

I am new here as well and don't have any advice to offer. Thankfully, my TN is nowhere near as bad as yours or the others here. As I have said before, I am almost ashamed to even post here, since my episodes are so sporadic at this point. I had a bridge replaced a couple of years ago and had a lot of trouble with it - ended up having to have a root canal while wearing the temporary bridge while the permanent one was being made. I always thought that was a little strange, but have a great Dentist and can't imagine that he would have done anythihg that was unnecessary. I use to never have any trouble recovering from dental work, but ever since then I have had a lot of pain afterward - but it has always gone away. I don't really think the dental work had anything to do with it because my ear pain started about 6-7 years ago.

I guess I just wanted to say hello and just to let you know that someone else is thinking of you too and will pray for you to get some relief. Hope you are not offended by this, I can understand some folks that have suffered so long don't have much faith left. I always figured if it doesn't help, it sure can't hurt . I am so sorry that you have to suffer like you do. Good luck and may God Bless.

Rhonda

oh didnt see reply till now sorry. yes my face pain from accident ..had no soft tissue dammage tho broke jaw when unwired first time got bad doc and jaw dammaged more went with it still broke for 3 months .. then 'rebroke" plates put in to hold lower jaw together. then after that had neuro stim and leads battery... whatever you want to lable it post tramatic atypical phantom pain
my mouth and trig nerve is dammaged for good forever . like I took the short cut .to say the least.
I will have you in my thoughts and prayers when you go on the 6th. and hope things improve for the best. one pain is bad enough add tooth and sinuses
thats some hard pains to deal with
hang tough stay strong and keep that apt. let us know how things are.
Peace
BMW

Hi Nicole, and all the others in this thread so far. Yep, I too have TN and ooohhh how I can relate with all the don'ts that you've listed (plus a few others). I guess you could say that my case isn't as severe as what many go through as I'm the atypical or constant pain..instead of the classic TN with the shooting electric type. Mine started in Dec. '97 soon after I had had a throat infection. It took 2 rounds of antibiotic to clear up the low grade fever and soon thereafter other symptoms began. I woke one morn. to find that my temple, eyebrow, eyelids on left side were numb. I went that same day to my general practice dr. that had treated the infection. His answer was "apparently the infection has decided to go to the nerve endings, let's do a diff type of meds and see how it goes in another week". The feeling seemed to gradually disappear over that time, but as it did, the pain began. To make the long story short...over the next 10 months I was on about 5 diff medicines trying to find the right one that would anyways ease the pain which seemed to be gradually increasing month by month. An oral surgeon finally mentioned that I had "all the symptoms of TN" and proceeded to briefly explain it to me. Since that time I have had to miss many marching band performances that my sons were in, soccer games, getting quite depressed sitting inside my house in the winter months here in Ohio and watching other family members work their butts off shoveling through snowdrifts in our driveway. I too was trying to work as a cashier of a fast food restaurant at that time as a cashier. I would get shooting pains like someone was punching me in the eye..dry explaining THAT to a customer without drawing attention to ourselves..not easy is it Nicole? I'd try my best to hide it the same way you have done dear. When I discovered that it was my manager that had written "DRUGS" on my meal list one day..that was when my husband said to her .."not that you give a rat's you know what..but today will be her last day of work there if YOU the manager is the one behind all of this harrassment" !! Yes, I could have taken them to court, but I figured they could care less whether I worked or not and I haven't worked a day since. Don't give up on neuro drs. Yes, it takes many..I think I've seen about 8 diff ones in 10 yrs time. Presently, I don't even have one as it's the family practice dr. that came up with the right combination of two diff meds (Neurontin and Elavil) that relieved my pain. I mean totally, zero pain for 3 yrs. I weaned off the Elavil and am now just taking the Neurontin..there's periods where the pain might become noticable (maybe a 3 on scale of 10) but when it does it only lasts a few minutes and is gone again. Nicole, if you haven't yet searched out the national trigeminal neuralgia association..I highly recommend it. They have a wonderful book that is a Bible to many of us that's called "Striking Back". Also, you might find a support contact phone person through their website as well, they are life savers for many of us when we're at our worst of pain.
God Bless You,



Marilyn

Yes to both. The Trigeminal Nerve is the sensory nerve for the face and that includes the teeth. If you have a cavity, best to get it filled. You've probably already done that, but if not, contact the TNA (see numbers in previous posts) and you can ask them for a Professional Packet to give to your dentist with info about TN and how to treat you so as to minimize flares during and after treatment. Or go to the following links and print out the information -

Dental Work and TN

http://brain.hastypastry.net/forums/...589#post152589

Visit the sticky threads at the top of the forum and learn about TN from the websites listed there. There are other drugs that may work better for you and let you get back to a more comfortable life. Find another neurologist who is willing to work with you. Talk to some neurosurgeons. You need to do the research (unfortunately - hard when you're hurting so much, but don't take just one doctor's word as law). Get a copy of Striking Back (contacts listed in other threads) and learn what your options are.

Best to you and keep us posted.

Jean

Hi Nicole,
I don't have TN but I understand your frustration over the quality of life issue and finding a place amongst peers who you feel are no longer on the same page as you...

I was 15 when I was diagnosed with myasthenia gravis. Most of the kids at school thought I was faking an illness. Hurtful isn't it? The lack of understanding and empathy is tough to handle. Well, I went on to graduate with a 4 yr honour degree and a Master's and met a few really good friends on the way. Things were good for awhile and my symptoms were well-managed by one drug.

THEN after 15 years of having a reasonable remission, I went into relapse, thanks to some major stress at work. I then found myself having to deal with a new reality of living daily life. While my friends are busy planning their lives in the 'normal' way, I found my concerns so completely in the other direction and was left with this overwhelming feeling of "now how do I live??". Suddenly I found myself having to take about 24 pills a day and having to rest days before going out, if even to a movie. Most of my current friends have adjusted to the new me but every now and then, I know deep down inside me that they just don't understand what it's like to be sick. The only people that really understand are other sick people -- and thank goodness for these boards!!

My career is very important to me and I've now been on long-term disability for 4 years. This is the hardest thing for me to deal with. I can take the pills, the biweekly IV treatments and the needed rest time, but not working is really difficult on the mental state.

I doubt if I made you feel any better other than letting you know that I know exactly how you feel.