Hi everyone!
I was just diagnosed with TN yesterday. I have a million and one questions, of course, and I’m so glad I found this site. Here’s my story.
Early last week, I started having pain in my jaw. I thought it was an abscess tooth. Then I noticed the pain was also in my ear, which confused me. But it went away, and I forgot about it. Well, Saturday night it started hurting again. Worse this time. It goes from my temple to the under side of my jaw, from right behind my ear to the middle of my face. It ranges from a light ache, to excruciating, searing pain. When it was still bothering me Monday morning, I called my doctor for an appointment. I figured I had a bad ear infection, or a very badly abscessed tooth.
After talking to my doctor for a while, and being examined, he diagnosed me with TN. There were no signs of infection in my ear, or mouth. Just a cavity on a molar. Otherwise, I was perfectly healthy. He put me on Nortriptylin and Lortabs. The nortriptylin supposedly takes a week or more to notice any effects, and the Lortabs are nearly useless against the pain.
I’ve only known one person who has TN, and we never really talked much about it.
Does it always just start one day? Out the blue, just BAM, you have TN now?
Shouldn’t there be more testing? An MIR, blood work, anything, to confirm diagnosis?
Should I ask for a second opinion?
Hi and welcome. I am sorry you have been diagnosed with TN. However, I would make arrangements to see a neurologist and get an MRI. They need to rule out any other problems. I am extremely tired right now and would love to talk to you more but I am certainly not an expert. I am glad you found this site and I hope you find some answers and the support you need.
Cathy
Hi Katie,
Mine started one day out of the blue. I was quickly diagnosed. My doctor gave me Lyrica and I took it for a week. It didn’t work and I had major swelling before I could increase the dose. She gave me tegretol and I was almost pain free in just hours. My doctor was on vacation for the week I had Lyrica. I called the office every day wanting to try something different because of the pain. I was at her door on Monday morning when she returned. It was amazing how well the tegretol worked. I took it for about two years before I switched to neurontin. Now I take multiple medicines and I have had MVD surgery. Be sure to see a neurologist and get an MRI. I agree with Cathy. I have read where if one has pain relief with tegretol and has symptoms of TN, then it is probably TN. Blood tests are not used for a diagnosis. Do you think you have atypical or typical TN? Your neuro would be your second opinion. And an MRI is not always definitive. I had a major compression when I had surgery and all my MRIs/MRAs were negative. My surgeon had no doubts he would find a compression based on my history.
Liz
Doctors do not always know a lot about TN you do need to see an expert and have a MRI, though my MRI was clear I had a MVD and the surgeon removed a blood vessel which was causing the trouble. I still have TN, but I suspect it is atypical this time I am waiting to see a new consultant. Welcome to the site, you will find lots of helpful tips and friends here best wishes to you. Margaret.
I am impressed your Dr actually diagnosed TN off the bat! It isn’ t that common. My Dr (well actually a PA) thought I was having a heart attack, or a sinus infection and then TMJ, then finally gave up and sent me to the ER - thank goodness for ER Docs!!!
Tegretol worked for me - though the side effects were terrible and I elected to go off it after 2 weeks. It seemed to re-set the nerve and touch wood I have been pretty much in remission since (just odd reminder twinges, but nothing like before).
Lortab wont work well, it is for long term/chronic pain, you need to keep taking it regularly for it to work - also by the time it kicks in the pain episode could be subsiding on its own!!
Good Luck…follow up with that neurologist!
Nope, just based on symptoms I was diagnoised. I have atypaical but I did have a MRI and it came out to be clean. My is worse when its cold. I can live and work so I haven't sought out anything more than meds.
HI !
HEY AM PRETTY SUE YOU HAVE TN AM SORY TO TELL YOU ,
BUT IS NOT A FUN RIDE WHEN YOU SAY , YOUR JAW START FEELING WERID
LIKE TINGLE AND YOUR TONGUE I WAS SO LUCKY IT AWAY FOR A YR
THEN SUDDLEN IT JUST BAM IS BACK , WELL THE WEATHER DONT HELP
ANYWAY YOU HAVE A FRIEND HAS TN DANG ! YA GOING TO BE BESTFRIEND SOMEONE KNOWS
HOW YOU FEEL ! FOR YOU KNOW IT YOU CANT BRUSH YOUR TEETH,TOUCH YOUR NOSE ,PUT MAKE UP ON ,
PUT YOUR SHIRT ON,AND COULDN'T TAKE A GOOD SHOWER WITH OUTTHE WATER HIT YOU IN THE FACE !! ITS WAS AWFUL SO YOU FEEL ANY SUMTOMS YOU GOT IT GIRL!! BUT I HOPE AND PRAY YOU DONT SWEETIE GOD BLESS SALLY CHOATE
Hi Katie,
Your symptoms sound just like mine. Mine started over a year ago. At first I had sensitivity in my teeth and my ear hurt. I thought it was an ear infection too, but it wasn't. It took a few months for me to get diagnosed because I had to go to and ENT and an oral surgeon. The pain got lots worse during the waiting weeks/months. It got to the point where I had a constant deep ache in my ear all the way down my jaw into my teeth. I would get shooting pains in my ear. My teeth hurt SO bad and I felt tremendous pressure in my ear. I was finally diagnosed with TN. I think mine is Atypical. I didn't have the electric shock feelings caused by a trigger point. I was put on tegretol and the pain stopped within two days. That was WONDERFUL! But then the side effects of tegretol were awful. My neurologist finally sent me to the Cleveland Clinic (this was after MRI and CT). Dr. Lee scheduled MVD for May. It was the most awful/painful surgery and recovery and they didn't even find a compressed nerve. So...the pain has never gone away completely. The cold weather seems to make it worse - especially cold wind. My ear starts to hurt and my jaw feels stiff and aches. I also noticed my bite was off and a TMJ specialist made a splint for my bottom teeth. I think that has helped my teeth sensitivity. I was tested for TMJ before the surgery and was told that wasn't the problem though. It all seems like a mystery to me. Where did this come from? Is it all connected? It would make sense if I had been injured in a car accident or something but it just came out of the blue. I'm glad you were diagnosed so quickly, but since you seem to have atypical symptoms I encourage you to look more fully into myofascial pain and TMJ. I think I may have had this awful surgery unnecessarily. Good luck.
That operation is awful I had MVD in June 2007 I was pain free for two years but the operation left me deaf in one ear and I have never fully recovered from it, my balance is terrible. Now the pain is back very much like yours is.
My TN first started in 1999, quite out of the blue I was convinced it was my teeth. Even had one extracted only to find it was a perfectly good tooth. I am due to see a specialist on 20th December, but I know there is not a cure, just want some relief from the pain. Hope you all find some help. Love Margaret
jamie leigh said:
Hi Katie,
Your symptoms sound just like mine. Mine started over a year ago. At first I had sensitivity in my teeth and my ear hurt. I thought it was an ear infection too, but it wasn't. It took a few months for me to get diagnosed because I had to go to and ENT and an oral surgeon. The pain got lots worse during the waiting weeks/months. It got to the point where I had a constant deep ache in my ear all the way down my jaw into my teeth. I would get shooting pains in my ear. My teeth hurt SO bad and I felt tremendous pressure in my ear. I was finally diagnosed with TN. I think mine is Atypical. I didn't have the electric shock feelings caused by a trigger point. I was put on tegretol and the pain stopped within two days. That was WONDERFUL! But then the side effects of tegretol were awful. My neurologist finally sent me to the Cleveland Clinic (this was after MRI and CT). Dr. Lee scheduled MVD for May. It was the most awful/painful surgery and recovery and they didn't even find a compressed nerve. So...the pain has never gone away completely. The cold weather seems to make it worse - especially cold wind. My ear starts to hurt and my jaw feels stiff and aches. I also noticed my bite was off and a TMJ specialist made a splint for my bottom teeth. I think that has helped my teeth sensitivity. I was tested for TMJ before the surgery and was told that wasn't the problem though. It all seems like a mystery to me. Where did this come from? Is it all connected? It would make sense if I had been injured in a car accident or something but it just came out of the blue. I'm glad you were diagnosed so quickly, but since you seem to have atypical symptoms I encourage you to look more fully into myofascial pain and TMJ. I think I may have had this awful surgery unnecessarily. Good luck.
Katie,
I write as a 15 year student of the medical literature of neuropathic face pain, having worked on behalf of my spouse who has TN, and many others with whom I have corresponded in support and advocacy. I've "talked" with over 2,000 facial pain patients by email and occasionally by phone, during that time. I also re-designed and re-hosted the home page of the Trigeminal Neuralgia Association website in the late 1990s. In addition to the information you will glean in this forum, I think TNA is a very useful place to visit and study.
See http://www.tna-support.org
Also very important: a book co-authored by an MD and a long time facial pain patient -- "Striking Back - the Trigeminal Neuralgia Handbook". It's available through Amazon.
Right off the bat, here's something to explore with whatever doctor you are working with: Nortriptylene HCL and Lortabs are not usually considered to be the first drugs of choice in treating either type of Trigeminal Neuralgia pain. Type 1 TN is characterized by volleys of sharp, stabbing, electric-shock type pain. Type 2 TN has more of a continuous, achy, grinding, throbbing, burning quality. The first drug of choice in either is generally one of the anti-seizure drugs such as Tegretol or Neurontin. Only if you don't observe improvement in pain levels with an anti-convulsant / anti-seizure med would an anti-depressant such as nortryptiline be employed.
Also be aware that pain experienced "deep in the ear" is usually a signal for geniculate neuralgia rather than trigeminal neuralgia -- very similar neuropathic processes, but different affected nerves. Finally, I would caution you that in forums such as this one, you will tend to observe large numbers of patients who have not had good outcomes from surgeries such as MVD. However, depending on a number of factors in your pain distribution as well as the experience of the surgical team, Microvascular Decompression (MVD) can have success statistics in the 90% range for major pain reduction or complete remission.
Sincere best regards,
R.A. "Red" Lawhern, Ph.D.
"Giving Something Back"
What I find so confusing on this site is the name of medication I am on, though most likely the same drugs is called by a different name in America. I lost my hearing in my left ear during my MVD, not sure if that operation was a success or failure as the pain this time is totally different in my cheek and jaw a dull ache which is there all the time and a awful painful deaf ear. My TN prior MVD was in my cheek but going through my eye in a hot searing pain. This is just as bad but different. I am due to see a consultant on 20th December. so hopefully I will get some answers and more pain relief. I personally would never go under the knife again, though I know there are success stories and most people are not as unlucky as me, perhaps if my TN had not been left for 8 years I might have had a better result.
Margaret
Everyone has different results. I guess when you're in pain you just have to try all your options for relief. I am sorry you did not have a good result. I am sorry you lost hearing in one ear. I am praying for good results for myself and others and that you find some answers to bring you relief. This is hard for all of us. I am afraid but I will be okay. Hang in there.
Margaret Gladys Mills said:
What I find so confusing on this site is the name of medication I am on, though most likely the same drugs is called by a different name in America. I lost my hearing in my left ear during my MVD, not sure if that operation was a success or failure as the pain this time is totally different in my cheek and jaw a dull ache which is there all the time and a awful painful deaf ear. My TN prior MVD was in my cheek but going through my eye in a hot searing pain. This is just as bad but different. I am due to see a consultant on 20th December. so hopefully I will get some answers and more pain relief. I personally would never go under the knife again, though I know there are success stories and most people are not as unlucky as me, perhaps if my TN had not been left for 8 years I might have had a better result.
Margaret
Margaret, what medication are you on? And are you aware of any of the drug information sites where you can look up authoritative information on medications? One of the best is http://www.rxlist.com...
Regards and best,
Red
Margaret Gladys Mills said:
What I find so confusing on this site is the name of medication I am on, though most likely the same drugs is called by a different name in America. I lost my hearing in my left ear during my MVD, not sure if that operation was a success or failure as the pain this time is totally different in my cheek and jaw a dull ache which is there all the time and a awful painful deaf ear. My TN prior MVD was in my cheek but going through my eye in a hot searing pain. This is just as bad but different. I am due to see a consultant on 20th December. so hopefully I will get some answers and more pain relief. I personally would never go under the knife again, though I know there are success stories and most people are not as unlucky as me, perhaps if my TN had not been left for 8 years I might have had a better result.
Margaret