Trigeminal Neuralgia

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Regular Member

Date Joined Jun 2009
Total Posts : 286
   Posted 12/25/2009 8:47 PM (GMT -7)   
Warning: Bit of complaining here.

So I've been diagnosed with Trigeminal Neuralgia since January of last year, but it has been pretty well under control with medication. A few flares once in awhile but nothing too major. However, the past few days it has been NONSTOP and nothing is getting rid of it. It hurts so bad. For those of you who don't have it, I'll tell you that its like a horrid toothache with nerve pain in the side of your face. It's excruciating. I don't see my doctor again til Wednesday, and I can't get in any sooner as he's on vacation.

I just wanna curl up in a ball and cry!
"Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength."

"You were only given this life because you are strong enough to live it."


Dx: Fibromyalgia, Chronic Fatigue, Trigeminal Neuralgia, Migraines, Anxiety, Insomnia, Acid Reflux, RLS, Asthma.

Rx: Celebrex, Buspar, Savella, Lyrica, Requip, Nexium, Symbicort, Compazine, Lunesta.

Supplements: Vitamin B12, Vitamin D, Vitamin C, Ginseng

Forum Moderator

Date Joined Apr 2005
Total Posts : 17528
   Posted 12/26/2009 12:01 PM (GMT -7)   
Oh, Sarah, that is terrible!  I don't have this problem but others on the forum do.  But, I've had several toothaches from abcesses in my life and I know how horrible that pain is.  It's unrelenting.  Does heat or cold help it? 
Try to focus on something or a program on TV.  I remember one Christmas Eve I came down with an abcessed tooth and my son was visiting me on top of that.  Ever try to find a dentist on Christmas Eve???  We got in the car and drove around looking at Christmas lights and then we came home and played Checkers.  Yes, I still had the pain but the distractions made it easier to bear.   I had to do this for two days before I could see the dentise.  It's miserable, for sure! 
I'll be praying that your doctor will have some answers for you.  I hope this eases up before you get to your appointment. 
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 12/26/2009 1:37 PM (GMT -7)   
I'm sooooo sorry that sounds like horrible pain Sarah. I hope you get relief soon.
luv and hugs
Forum Moderator Fibromyalgia
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New Member

Date Joined Dec 2009
Total Posts : 9
   Posted 12/27/2009 9:27 AM (GMT -7)   
Oh Yes I had TN Went to the dentist in so much pain I couldnt even stand to be anymore.
After a lot of looking there was nothing wrong with any teeth it was the nerve. Shot though my jaw and up the side of my face by my ear though my temple and up to my eye.
They gave me antibiotics and strong pain killers... I found that the cold weather and mostly wind made mine flare up.
Sometimes cold compresss or sometimes warm helped some.
The bad thing is you just have to wait.... wait for the nerve to calm down. It will trust me. it will....
33 Yr old Female
Dx Fibro 2007
Tring really hard to have fun and not take life so serously.

New Member

Date Joined Dec 2009
Total Posts : 2
   Posted 12/27/2009 2:42 PM (GMT -7)   
Hey Sarah! This is my first post here.

Please complain away. I know EXACTLY where you are coming from. I had this problem over a year ago. I had constant toothache for 4 years! It was horrendous and I almost ended it myself a few times.

I don't want to scare you so I will just briefly tell you my story because the detailed version will take me a long time to write.

But basically, I had the same problem as you, severe toothaches that would be triggered by wind, cold, touching my face, biting, talking, eating, kissing, the list goes on. Dentists would do root canals on teeth with no problems, neurologists said I had trigeminal neuralgia and gave me all of the anti-convulsants (tegretol, gabapentin, lyrica etc)... I eventually developed hepatitis due to tegretol. I had tooth extractions and the pain would move to another tooth etc. It was hell!!!!

I have travelled all over the world with my job, in the UK they were no help. When I lived in Costa Rica they found an infection in my jaw bone (missed in the UK), so had the bone removed and a bone graft put in. But still I had pain. After 4 years to surgeries and treatments my specialists said they could see I was at the end of my road with it all and said they would be prepared to try removing all of my teeth. They were nervous, and me too, because the teeth were healthy and it is such a shame to remove healthy teeth with no guarantee that it would even work. But it was that or being a drug zombie forever (not that the drugs worked), so I decided to go for it. I had all of my teeth taken out and 4 impacted wisdom teeth removed. After the surgery it was hell also, morphine would not even touch the pain, but a few weeks later everything settled down, and now no more pain (touch wood). Well not exactly true because I developed a tmj problem due to the many surgeries on my jaw that leaves me with an earache, but the tooth and face pain is gone and has been for 2 years now. I can now talk, eat (but soft stuff to keep the tmj at bay), kiss, smile, and my prosthetic teeth look great. It was one of the best decisions I ever made.

I hope this does not scare you, and I am aware that my case is an extreme case. Now, whether the problems occurred due to fms or whether there is another reason, I really do not know. I have also read about myofacial pain or something which also has symptoms similar. Now I know this bit is the hard bit, but your need a really great doctor to help you with this, most general dentists will be completely clueless so you need a doctor that is prepared to go the extra mile for you. I know I was lucky to find the doctors I found who were prepared to throw the rulebook away and take it step by step as a patient that has symptoms unlike anything they had seen before.

Good luck Sarah!

Veteran Member

Date Joined Jun 2008
Total Posts : 846
   Posted 12/28/2009 7:02 PM (GMT -7)   

Are you feeling any better? This particular nerve pain can bring you to your knees. Your case is atypical too, if I remember right? During bad attacks, I can't even speak, I can even lose notice of my surroundings. I have tried some tricks for a little relief, or even distraction.

-peppermint oil rubbed on the area of pain
-I keep little take out packs of ketchup in the freezer, then place them right in front of the ear where the nerve branches out. This is a 50/50 split if it works or not. The other half of the time, it made the pain worse.
-my rice bag, very hot, on the side of the face that hurt at the time
-watch mindless TV for distraction, no way I could concentrate on much, but TV helped pass the time and not focus on the pain
-lamaze breathing and meditation
-drinking little sips of water. This is especially helpful for me when the pain is in the fleshy part of the cheek. The difference in temperature makes the pain ebb for a bit
-if I am at my wits ends, I bite my fingers. The pressure on the teeth with the pain somewhere else eases the face pain for a bit

I had another episode the week before Christmas, lasted a couple hours. Luckily the rest of the time it is behaving right now. Tonight my right cheek and chin is burning, I feel like needles are being shoved into my gums behind my top front teeth, and my left ear aches, into my cheekbone. But it's pretty low key. I can't even describe what this pain feels like when it gets going. Even at tolerable levels, it makes me sick to my stomach when it starts that 'hungry, tearing' pain in my gums and palate, and I am petrified that it is only the beginning. I have a doctor's appointment next week, and I am going to demand that he take this more seriously. I have had an earache off and on for about 2 months now!

Sarah, if you don't mind my asking, was yours pretty cut and dried when you were dx? Did you see a neurologist or orthodontist? Did they rule out any other causes? I just found out (yes, I am self dx'ing. My doctor isn't proactive in this, so I need to be) that long standing chronic sinus infection and tooth infection can cause trigeminal like pain. Since my MRI showed a sinus infection, and I just had an infected tooth pulled, I am hoping that this is it for me. But at the time of my MRI, I was just getting over a cold; I don't think I have had chronic sinus problems. I have also looked into NICO, but that is controversial, and frankly, scares the beejeesus out of me. The other two things that might fit for me are bilateral TN2, or atypical facial pain, which is even more ambiguous than fibro.

Anyway, I hope that you feel better soon. Try to stay warm too, the cold does not help!
fibromyalgia and possible trigeminal neuralgia
50 mgs amitriptyline daily, T3s for facial pain (really not appropriate med) and now tramacet

New Member

Date Joined Dec 2009
Total Posts : 2
   Posted 12/28/2009 11:09 PM (GMT -7)   
"Atypical" mean undiagnosed. I know because I also had this diagnosis at one time. I remember saying "So your diagnosis is an undiagnosis?" I was just met with the response Errrrrr!!!! Hahaha...

I remember the whole NICO thing and that worried me too but getting an accurate diagnosis for that is difficult. Check out osteomyelitis of the jaw bone and see if some of the symptoms fit. I was diagnosed with TN many years ago, it was eventually discovered that I had osteomyelitis, which is just a bone infection but tends not to show on regular x-rays.
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