To Anyone with TN or Atypical Facial Pain!!!

[Spacey303]

Hey all, 2 weeks ago I was despondent and suicidal after suffering with TN (or "atypical facial neuralgia" in my case) for 7 months, many failed treatments, and no relief in sight. But I listened to my body and found a doctor who listened to ME (no small feat in and of itself!) and supported my belief that a chain reaction/perfect storm of muscle spasms, trigger points and "myofascial damage" were literally causing my upper-back and neck muscles to pull on muscles and nerves in my face -- thereby causing the horrific pain.

After one session of trigger point injections, I'm a new woman and most of my pain is almost gone! I have a long history of many major neck problems and surgeries...so this might not be a very common cause (who knew neck pain could make your eye and teeth hurt!?) but I wanted to put it out there as something for my fellow TN sufferers to consider -- so please think about whether this might apply to you! I know how indescribably torturous the pain of TN is and hope sharing this information might help even one person. If anyone wants to know more, feel free to send me a message.
-- S

[EricaL]

What type of injections did they give you? Cortisone, steroid injections?

[AudreyMahone]

My Name is Rena, I am 34 and I started having atypical facial pain after a long story that started with an accident that happened when I was 13 years old where I broke both front upper teeth and the nerve in one of them died. Following that I had a root canal treatment. This accident have left me with a mild constant pain that I carried on to my thirties when I started having more strong pain in the tooth that had had the root canal treatment. I decided to get what was left of one tooth removed and placed an implant. The process was very aggressive, with several interventions and a lot of pain involved as the anesthetics not always worked during the process. 6 months after having the implant placed I started having pain in my face and a numbing feeling... after a while it developed to a general feeling of fainting and disorientation, pain in my sinus, bleeding from my right nostril, extreme fatigue, horrible night sweating and nightmares, pain in my muscles specially around my neck and shoulders,  indescribable migraines, photo-sensitivity, throbbing pain like a lightning bold hitting my teeth, nausea and consequently a depression and suicidal thoughts. The pain in my adjacent teeth started appearing, got 2 of my other tooth removed as the root canal treatments I have had not only didn't solve the problem as they made it worse. I started to get depressed because dentists could not solve my problem. I finally managed to pass the guarding dogs of the UK NHS which took me several months and managed to see a doctor in the maxilofacial department who gave me Amitryptiline, a very old tricyclic antidepressant. After I started taking it it was like living in a different living hell. I got so drowsy from the pills that all I wanted to do was to fall asleep forever, but I still had to wake up in the morning and drive to go to work... really really dangerous. But I managed. After a while the pain started going away and the side effects started being more tolerable. One year after the medication stopped making effect and doctors changed it to Carbamazepine (tagretol) prolonged released. Because I have a lot of food intolerances and a very sensitive digestive system since I was 9 years old, oral medication doesn't work very well for me. I am always caught in the middle of the process of habituation/withdrawal since I cannot absorb the right amount of medication and this bipolar cycle is a nightmare... I am having a doctor's appointment tomorrow to start having some real treatment to mitigate the pain. This is probably one of the worst diseases one can have.

[miss_robin]

Hi!  My name is Robin, I'm 35, and have been having right-side facial pain since I was about 20 -- yup 15 years!  After a car accident, it got unbearable -- I was stuck in bed for 4 months, seeing doctor after doctor and being diagnosed with everything from a sinus infection, tooth infection, migraines, to just wanting pain meds.  

Finally, I saw an ENT, Dr. Michael Abidin, in Alexandria, VA, who diagnosed me with TN, and began me on Neurontin and steroids injections.  It helped a bit, but the drugs made me foggy, and the steroids made me fat.  (AND it's not bad enough to be in pain, but to be in pain and not fit in your clothes  -- UGH!  :-) )

Anyway, Dr. Mike was very sympathetic and helped me find other Dr's on the East Coast that were knowledgeable about TN.  Since then I've have surgeries to improve the pain  -- while I am still not out of the woods (I have my good and bad days) -- I am comforted by knowing that there are people willing to help!

These awesome drs are:  Dr. Abidin, Dr. Heidi Sabet, Dr. Ivica Ducic, Dr. Abraham Cherrick, Dr. William Booker, and therapists
Dr. Adrian Brown and Dr. Janna Sandmeyer (all in the DC area).  Also, Dr. Peter Janetta & Dr. Melissa Boisclair (in PA) have helped tremendously.

My thoughts go out to my fellow suffers and my advice is:
1) Be your own best advocate, or if you can't,bring a good friend to the dr's with you.  If you're in pain, it's hard to stand up for yourself, so recruiting a good, loud-mouth buddy really helps!
2) There is no cure today.  But that's only today.  You NEVER know what will happen tomorrow.

All my best,
Miss Robin

[whiteknuckles]

Hello Spacey,

I have been sick since February 2009.  I originally had a pain that I thought was a toothache and I must have had a cavity which brought me through the usual route of doctors and specialists.  I was diagnosed with atypical facial pain in August, 2009 and  I have most recently been on Topamax for pain.  The Topamax has done nothing for the pain and the side effects have only made the situation worse (I feel really groggy, insomnia, foggy, etc).

Can you tell me more about the trigger point injections and where you get the treatments?  I also have severe pain in my neck and upper back which started to get really bad about five months ago.  I have also had to go on a short-term disability leave from work because the pain was affecting my attendance.  I reside in Toronto, Canada.  I would appreciate any advice you could offer.

[Todd121]

I have been a sufferer of TN for over 20 years some days are good some bad i am looking for people who shair this condition someone who can relate to the torment i am going through. I feel so alone and isolated ,to have somone there and to be there for someone i feel would be a big help.  

[HeleenDestuyver]

Hi!
My name is heleen and i'm from belgium. I can't find good information on belgian sites, so i thought i might find it here.
I'm desperatly looking for an answer of my pain.
I think i have the same as you had, but i'm not sure. I will try to tell you my story in short..
Six months ago i got a viral infection, and since then it all got worse. I had some drama's in my life , someone young in my environment passed away very suddenly, problems at home etc.. I got very anxcious, depressive and started to show some hypochondric caracteristics.. I was so focust on all the negative and things in my body that i got many issues.. My neck started to hurt, and my throath. I did many examinations, they tested my blood, did an echo in my neck , but nothing was found.They always rejected me and send me home with painkillers. Months later, i was really getting in a black hole. My docter send me to a fysiotherapist, kinésist ( don't really know how you say it in english, i thing fysiotherapist..) She really helped me, and saw that i h ad some blockades in my neck. I had many triggerpoints in my neck, shoulder an jaw. I also had a disfunction in my jaw.. the sessions helped, but only for a few days,and then it came back. in my head i'm doing better now thanks to yoga , but the fysical pain is chronic. I have a really reallyunbairable pain .. In my jaw, deep in my ear, my neck, in my mouth, and sometimes headaches around my ear. And all on the right side of my face.. My bodytemperature is also a bit higher than before al the misery. It first was 36.7 now it's always round the 37.3 ..There aren't any painkillers that are working, so i have to live with the pain.After many searches i think i have atypical facial pain. And now is my question, if my symptoms are the same as yours? And if you can give me some tips or so, because sometimes getting up every day is a nightmare..And every help is welcome
Greetings from a desperate girl from a little country..
Heleen