TRIGEMINAL neuragia

[JLR]

Hello. I am 5 years post Ck. right sided AN. I am now experiencing pain on right side of face. Has anyone experienced this horrible pain after CK?  Any recommendations? Thanks so much.  Joan

[mindyandy]

Hi Joan
I developed Trigeminal neuralgia 4 years post CK. Please browse thru my previous posts to see my story. Keep me posted on what you plan to do.
Mindy

[JLR]

Thanks Mindy.  Can you send me your link re TN. Thanks again.

[JoyNJ]

Hi.
I developed trigeminal neuralgia after 25 fractionated steriodactic radiation treatments, probably beginning 6 or so months after treatment was done. I had electrical shooting pain on the right side of my face, in my teeth and gums and in the bone of my jaw. All from just under the eye to the bottom of my jaw bone and across to the exact middle of my face. Some days there was nothing, some days it was "bad". The bad is in quotation marks because the first week of June this year, I found out what bad was and ended up in the emergency room with pain that felt like someone had plugged in a 220 volt electrical line and was touching my face with it. The ER was no help, except to make me feel like a drug seeking junkie. My MD had me do a 10 day course of Prednisone and sent me to a neurologist who started me on Tegretol, with almost immediate results. I've increased the Tegretol 2 times since I began it and still have a low level of pain.

What I found is that there are triggers to the pain. For some people it is cold air on the face, for some it is loud noises, or something touching the face. For me it is biting something tough or hard...no more cheese steaks subs or pizza for me! Also if I clinch my jaw, which I tend to do in my sleep, or jut my lower jaw forward. And if my face is touched. Even the touch of my sheet in bed will increase the pain. And I can no longer sleep on the right side as there is no way to do that without the side of my face touching the pillow. I know, I've tried everything to be able to sleep on my right side as that is my favorite sleeping position.

I know I didn't have CK, but the total dose of radiation is close to the same with FSR and CK.

Don't despair about the TN. I got lucky with my neurologist for treatment. She's young, knowledgeable and sensitive to the pain it can cause. She tells me that we are starting low and slow with medications, that there are many options for treatment medications and even surgeries. She also is knowledgeable about the Acoustic Neuroma and will keep an eye on it. So far there is little change since radiation. Find a good neurologist to treat it who will listen to you about what goals you have for treatment and will help you get to those goals.

And if you are on Facebook, there are a few groups, some open, some closed, for Trigeminal Neuralgia. I belong to 3, 2 are closed. The closed groups are nice as you can rant and cry and rave if you need to and it stays off your feed! I've learned a lot about TN from those groups.

[JLR]

Dear Joy, thanks so much for information. It was a big help and a relief to hear someone with similar symptoms. Yes even the light touch of a sheet sends me through the roof.  I am for some inexplicable reason pain-free these past few weeks.  I don't know what brings it on but when it comes it's so bad that I was sure it was my teeth my nose my eye my cheek who knows just excruciating pain but it's in a very calm state now. But yes I will seek out a neurologist. Thanks again for your help. Most appreciated.

[darkorchid12]

Well I have been out of this loop for many months now.  Had a ck treatment in April, had my 6 month MRI and all looked great. Tumor has gone down in size and the center is less bright than before. My tumor is on my trigeminal nerve and not an acoustic neuroma.  But just four days ago I got the weird sensation of having a very itchy sweater behind my eye and all through the quarter of my face controlled by the right side trigeminal nerve.  Now I am starting to get those sharp stabs of electric shocks, brief but intense.

Went to an ER and they gave me steroids which quieted everything down for about two days.  Now I am being put on tegretol and steroids. I don't know about any of this except how surprising this newest turn has been.  I guess I thought I was all done and through!

Anyone else out there with similar or feedback? Information is always helpful.

Thank you all so much.

[lori78]

I too have been out of the loop.  I had a 4x4 cm AN in October of 2006, and in the past 3 years, as my tumor is shrinking from GK (had his 8 years ago), my face has been completely numb - well, the left side (tumor side) of face.  I've had some feeling back, but then developed TN, mostly in the lingual nerve of my tongue.  It hurts!!!  Cold weather and hot humid weather seem to be when it's at my worst.  I take Tegretol after the other 'carbazepine' wasn't working.  I'd like to up my Tegretol, as I have low-moderate baseline pain and more severe pain other days.  My blood levels didn't look good once I raised this dose, and started being toxic on Tegretol - dizzy, blurry vision, etc. (I had same problem when docs tried to increase my Neurontin, I'm 5'3 and 125 lbs and my body couldn't take that high a dose).  FRUSTRATING that for the 3rd time, a med that works when increased cannot be increased!  My current dose keeps pain at bay - some of the time.  My pain is worst at night and I want to just bite my tongue off.  I find 'sleeping it off' helps (a nap seems to help), and sometimes Xanax works a bit.  I have narcotics for when it'sat its worst, but they just take a bit of the edge off.  I feel like  I'm a walking barometer, and certain foods which I also have a mouth sensitivity/allergy to make the pain 10 times worse!  So, it's mild food a lot, and I've lost weight as a result.  I miss spices.  I've never had the SEVERE jolts that send people to the ER.  My tumor continues to shrink, but my docs say even if it shrinks completely, I will still have lifelong pain as the trigeminal nerve was damaged so much w the Gamma Knife.  The things I wish I knew back then, but my tumor was large and pressing onto my brain stem.  I don't know if anyone else has any helpful suggestions, but I'd sure appreciate them!  The leftover tumor is still pushing on the TN nerve, which is why I have no feeling on that side of my face.  It's lovely, especially on first dates when I get food all over my face and can't tell, or get a cold and my nose runs and I can't tell.  I also live in VA, which has VERY fluctuating weather/humidity.  I'm so tired of getting home from work and having to knock out or rest.  But I know it's a blessing I can work.  Any insights?  THANK YOU!  Lori