Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. T...
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I HAVE TN..BUT NO TEGRETOL???
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HI,
I'M RELATIVELY NEW TO THIS COMMUNITY AND HAD SOME QUESTIONS I HOPE SOME OF YOU MAY TAKE THE TIME TO ANSWER. IT'S SOMEWHAT LONG SO I APOLOGIZE AHEAD OF TIME. I JUST TURNED 34 YEARS OLD AND IN OCTOBER OF LAST YEAR I BEGAN BURNING REALLY BAD IN MY LEFT EAR. IT WOULDN'T GO AWAY. THE PAIN WAS NOT ON THE OUTSIDE. IT DIDN'T HURT TO TOUCH IT AT ALL. THE BURNING PAIN WAS DEEP INSIDE THE EAR CANAL AS DEEP AS YOU CAN IMAGINE. IT FELT LIKE A SWARM OF BEES WERE IN THERE STINGING ME NONSTOP. THE PAIN WAS CONSTANT. I CRIED MANY TIMES. I WENT TO A FAMILY DR. AND HE SAID I HAD AN EAR INFECTION AND TREATED IT. IT DIDN'T GO AWAY. THE PAIN GOT SO SEVERE THAT THE NEXT DAY I WENT TO THE ER AND HE SAID I DID NOT HAVE AN EAR INFECTION. HMMM? SO I WENT TO A DIFFERENT FAMILY DR. AND HE SAID I DID HAVE AN EAR INFECTION. WTF? SO I JUST SAID THAT I NEEDED AN APPT. WITH AN ENT. DURING THIS TIME I NOTICED THAT MY LOWER GUMS BEGAN TO HURT LIKE A KNIFE WAS BEING STABBED INTO THEM AND EVEN MY TEETH HURT...BUT TOUCHING MY FACE ON THE OUTSIDE STILL DIDN'T BOTHER ME. I NOTICED THAT GUSTS OF WIND MADE ME HURT REAL BAD AND THE COLD DID TOO. I WENT TO AN ENT AND HE SAW NOTHING WRONG OTHER THAN SOME DRIED SKIN ON MY EARDRUM SO HE FIXED THAT. I ASKED FOR PAIN MEDICATION AND HE HESITANTLY GAVE IT TO ME. THE PAIN WENT AWAY ABOUT A WEEK AND I WAS BACK IN HIS OFFICE WITH MORE PAIN ONLY THIS TIME IT WAS IN BOTH EARS AND I WAS GOING INSANE FROM THE PAIN. HE STILL SAW NOTHING AND RECOMMENDED I GET A MRI OF MY NECK. HUH? THEN HE DECIDED TO LOOK IN MY THROAT. HE NEGLECTED TO DO THIS THE FIRST TIME. I HAD HAD A TONSILLECTOMY IN 2003 BUT HE SAW A PIECE OF TONSIL WAS ACTUALLY STILL LEFT IN THERE WITH AN ULCERATION ON IT RIGHT NEAR MY LEFT EAR IN THE BACK OF MY THROAT. HE SAID THAT SHOULDN'T BE CAUSING MY PAIN. HE SAID HE COULD DO SURGERY TO TAKE IT OUT BUT HE WANTED THE SCAN OF MY NECK FIRST. AND THEN HE WANTED A HEARING TEST. I WAS IN SERIOUS PAIN AT THIS POINT AND NEEDING SOMETHING FOR PAIN BAD! HE DID NOT LIKE THIS OBVIOUSLY AS I HAVE BIPOLAR DISORDER AND HE WANTED MY PHYCHIATRIST'S NAME AND NUMBER. FOR WHAT? APPARENTLY HE DIDN'T BELIEVE I HURT AND THAT I WAS MAKING THIS UP. MY BIPOLAR HAD NOTHING TO DO WITH IT AND HE DIDN'T NEED TO CONTACT HIM IN MY OPINION. IN OTHER WORDS, HE PISSED ME OFF. I DECIDED TO GO TO ANOTHER ENT WHO UPON MY FIRST VISIT SAID I'LL CUT IT OUT, BUT IT'S A 50/50 CHANCE IT'LL WORK BECAUSE IT'S PROBABLY NERVE RELATED. I TOOK THE CHANCE. IT DIDN'T HELP. SO I GO TO A PAIN CENTER NEXT WHICH IS WHERE HE DIAGNOSED ME WITH TN. I HAD SEVERAL INJECTIONS DONE. THREE IN MY CHEEK AND TWO IN MY NECK. ONLY TWO WORKED. I GOT RELIEF FOR ONE DAY FROM ONE AND ABOUT TWO WEEKS FROM THE OTHER. HE PUT ME ON LYRICA. NEVER MENTIONED TEGRETOL. MY SHRINK THEN TOLD ME LYRICA CAN INDUCE MANIA SO I GOT OFF OF IT AND THE PAIN CENTER DISCHARGED ME FOR NOT FOLLOWING THEIR PAIN REDUCTION PLAN. I AM TOO YOUNG TO HAVE TO DEAL WITH THIS CRAP. I STAY IN MY HOUSE ALL THE TIME AND LIVE IN FEAR FOR MY NEXT ATTACK. I LOVE LAYING OUT DURING THE SUMMER AND I HAVE A POOL AND I LOVE SWIMMING UNDERWATER WHICH WILL KILL MY EAR. I'M SEEING A NEUROSURGEON ON MAY 27TH AND I'M WANTING THE MVD DONE. NOW, IF ANY OF YOU HAVE STAYED WITH ME AND READ ALL OF THIS LOL, HERE'S MY QUESTION: DO YOU THINK I HAVE TN? MY PAIN DR. DIAGNOSED ME BUT I READ POSTS ON HERE AND MY FACE IS NOT TRIGGERED BY TOUCH OR WHEN I CHEW OR THINGS LIKE THAT. I BURN/ACHE INSIDE BOTH EARS, LOWER GUMS, ALL MY TEETH HURT, WIND AND COLD BOTHER ME AND THE PAIN IS UNLIKE ANYTHING I'VE EVER FELT BEFORE. WHAT DO YOU THINK? ANY OPINIONS WOULD BE APPRECIATED. BY THE WAY, I WARNED YOU....THIS WOULD BE LONG!! LOL! THANKS EVERYONE. Posted on 05/22/08, 03:05 am |
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Well, TN can be tricky - only a doctor can actually diagnose these things, but many of us have suffered for a long time before we received a diagnosis. I read a book called "Striking Back: a handbook of TN" which contains alot of people's different scenarios of symptoms. I have noticed that the drug I have been taking for TN, trileptal is also a treatment for bipolar, so maybe you can bring this up to your doctor. Trileptal has a good track record with TN and bipolar on this site too. good luck! 
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I'm sorry to hear about your pain, Hopefully you will find a good doctor who will listen to you and get it take care of. I am only 25, I was diagnosed with TN in June of 2007, which would make me 24 at the time of diagnosis. I can definitley relate to you about Dr's not believing you. I went through 3 doctors before I forced myself to see a specialist/neurologist.. and a good one. Dr. Peter Jannetta (a doctor who actually invented a type of MVD surgery back in the 60's) was the specialist who took care of me.. and even there I had some problems. Dr. Janetta was the nicest/ most caring doctor I had ever met but he had an assistant doctor that saw me when Dr. Janetta couldnt, that didnt believe me about the pains in my face (set off by air conditioning and wind more than anything). Also, when I had asked for pain medication, I was given the lowest dose which never helped. Unfortunatley, I know this is because of my age (they were probably thinking I just wanted drugs.. which REALLY irritates me because I was active duty Army when I was diagnosed)... Anyway, I was told by my surgeon that when doctors perform the MVD surgery on TN patients, they usually find one or 2 veins that are overlapping/twisted with the main cranial nerve on either side of the face... Well, when they did my surgery, they found not one or two.. but 4!. So allthough I wasnt able to personally tell the doctor who didnt believe me "i told you so," atleast he got to see that i WASNT lying. So I understand the frustrations you are having. Just try to hang in there. If you want to read my profile, I journaled all of the medications I have been prescribed/what helped, what didnt/and I journaled the steps the doctors told me to take. I hope this helps, sorry if I bored you!! I hope you find the cause of your problem and are pain-free soon. :)
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Hi doll,
easy to answer this one as i sit here and cry from the pain. the tn presents itself in my left ear. went to the doctor over and over for non-existent ear infections. lucky for me, my dad has tn and i finally got it through my thick head what must be going on, even though when i started really suffering i was probably about 36. I simply told my doc this (he has a good soul, just not too bright, easily led) and he had the mri done. This is not to confirm tn, but to rule out other causes for the pain. when i have my attacks it DOES hurt for anything to touch the left side of my face. from the top of my head to my collar bone. i even visably swell on the left side of my head. it hurts to talk, move my eyes, stand up, swallow, anything that makes any part of my head move. DON'T GIVE UP! There is a doctor who will listen and empathize, even if they can't understand the pain. sorry to ramble so, but dammit, i hurt. makes it hard to concentrate.
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You may be interested in the neuropathy group... it's small fiber nerve damage...
http://dailystrength.org/groups/ne...
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WENT TO THE NEUROSURGEON AND HE SAID I DID NOT HAVE TN, THAT I HAD ATYPICAL FACIAL PAIN AND TOLD ME TO LET MY PHSYCHIATRIST OR MY FAMILY DOCTOR TREAT ME. HUH? I DON'T THINK SO. HE SAID TN NEVER AFFECTS THE EARS AND THAT'S WHERE I HURT. ANYWAY, I'VE BEEN DOING SOME RESEARCH AND I BELIEVE I HAVE GENICULATE NEURALGIA. HAS ANYONE ELSE HEARD OF THIS OR DOES ANYONE ELSE HAVE IT?
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Hiya hun, I find that everyone with TN has a variety of different symptoms and triggers. I've had my pain since I was 22. I'm 30 soon. I've had a variety of nerve blocks that have failed, although they have worked for other people I know. I take Lyrica for the pins and needles pain, I have amitriptyline (antidepressant) which helps me sleep thru the night. I believe medication helps me get to work everyday but it's by no means a cure...
I hope you find something that works for you.
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I have just recently been diagnosed with TN. I have been in sheer HELL! And you know I am not exaggerating! It has been 21/2 weeks of horrible, agonizing pain. I never knew a person could hurt so bad and live to tell about it. I have had severe inner ear pain also. I looked up jaw pain online and self diagnosed before I went to the Dr. He said TN and gave me Tegretol. It didn't seem to help until I doubled the dose. I was desperate. I have since seen a neurologist whom I didn't really like and he couldn't believe I hurt as bad as I said. He recommended blood work and an MRI. He changed my medication saying that they don't really use Tegretol any more....?
How are you doing now?
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THANK YOU TO ALL WHO REPLIED! I FOUND ME A NEUROLOGIST WHO IS TAKING HIS TIME WITH ME TO FIND OUT WHAT IS WRONG WITH ME. IS IT TN? OR WHAT? HE WANTS AN MRI DONE OF MY EARS. HE DOESN'T SEEM TO THINK IT'S TN BUT I ASKED FOR TEGRETOL ANYWAY AND IT SEEMS TO BE HELPING SOME IF I WOULD TAKE IT RIGHT. IT JUST KNOCKS ME FOR A FRIGGIN LOOP! I PASS OUT FOR LIKE THREE HOURS EVERY TIME I TAKE IT! HE WANTS ME TAKING IT THREE TIMES A DAY AND I DON'T WANNA SLEEP ALL DAY BUT TO END THE PAIN I'LL DO WHAT I HAVE TO DO YA KNOW? HE THINKS IT MAY BE SOMETHING WITHIN THE EAR BECAUSE NEURALGIA (HE SAYS) IS NEVER BILATERAL. WELL MINE IS. IT SWITCHES EARS AND SOMETIMES THEY BOTH HURT. I'M JUST A F&***^^ UP CASE IF YOU EVER SAW ONE LOL! I'LL KEEP YA'LL POSTED WHEN I SEE HIM AGAIN ON JUNE 24TH. AGAIN, A BIG THANKS TO YOU ALL FOR REPLYING AND MOST OF ALL FOR UNDERSTANDING THE PAIN.
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I am glad you found a good doc. TN would not apear as ear pain. The trigeminal nerve is what gives sensation only to the face and is right nerve for right face and left nerve for left face.
I understand why the dirst guy wanted to talk with your psychiatrist. It most probably was for the medication issue. I have to say to Leah, Jannetta operated on me in 1979 and paralyzed my face. He was uncaring as uncaring as could be and ignored pre-op tests that showed he probaby would paralyze it. He only saw me once after, 4 weekslater in his office. There is much more to this, he perjured himself in court, the Court calling his testimony perjurious. That is the thing wqe all need to remember the best huy for you may be the worst guy for me so e always have to rely on research and our instincts. And the most important thing that I learned, too late Im afraid, is that we cannot let the pain make our choices for us. Thanks leej (author A PAINED LIFE, a chronic pain journey)
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