Trigeminal Neuralgia Support Group

Sorry to hear that you are having such a tough time. I've been fortunate that the meds work but I am on a very high dose. And I take pain meds round the clock for different pains. So that helps. It is easy to feel sorry for yourself when you have pain in the face and the pain just will not go away. We are here for you.
((HUGS))
Becky

YES, YES AND YES. I spent a large part of last week crying! I was recently diagnosed myself. Just last week actually. I was told I had a horrible case of TMJ and I was so relieved that it wasn't something "serious". Although I knew deep down that it wasn't TMJ- I knew it was something neurological. I had been reading and researching TN on line before I saw my neurologist. It took him less than 20 seconds to diagnose me. So, I kept saying to myself, "its not TMJ". I am coming to terms with it. Had the MRI yesterday, that was fun:) (Kidding) Now, I wait to see neurologist. I guess the MRI makes me feel better about the "part we can't see". My pain meds don't really work- and I am thinking I may need to accept the pain and find ways to deal with it. I take Yoga several times a week, and try to keep busy. My pain is dull and fairly constant. It correlates with facial (mouth and lip) movement. I have a 6 year old little girl and the one thing that gets me through this is telling myself "thank god this isn't happening to her".
Lisa- How much tegretol are you taking. mine isn't working- but my doctors plan was to slowly increase it.
hang in there!
feel free to message me anytime:)
Jill

I forgot about the MRI to determine if there is anything pressing on your nerve. Mine started with a terrible ear infection and then had numbness and pain on the right side of my face. I can live with it but there are days...
Becky

Hi Guys

Thanks for your replies. Nice to know I really am not going mad!! Currently taking 300 mg of Tegretol together with 150 mg of Tramadol (dependent on how bad the pain is). I am seeing the GP again today and I think his plan is to gradually increase my dosage of Tegretol. I do suffer with some side effects from the Tegretol i.e. low calcium levels, periods all over the place, sickness, all the usual stuff, but the anti sickness tablets do seem to be stopping some of this.

Thanks to you all for being there.

Lisa

hi lisa, i had really bad pain and am allergic to the tegretol. they put me on dilantin and it worked for a year.thetook me off of dilantin and i was good for a couple of months. they put me back on it and i was having the pain still while taking the meds. finally i decided to have the MVD and boy am i glad i did it. no pain anymore. i had it done the beginning of nov and recoverred from that. i do have several other medical conditions. but what a relief that the TN is gone.(knock on wood). maybe you should look into it. if you have any questions about it feel free to send me a message.
hugs
elaine

I've had TN for 4+ years and I still haven't come to terms with it, though at the same time it completely defines me. I guess I'm just angry for having this out of the blue not because of anything I did. And the pain makes me more harsh a person, it also makes me more quiet since I'm not sure if I will be in pain when I speak. It affects my work, my relationships, argh. So yes, I can relate to not coming to terms with this.

I understand what you mean about taking the whole pack of pills. It's been tempting. My pain is constant, the level is what is intermittent. I finally had my pain under control at a pain management clinic when I moved across the country. It's hard to go from morphine to codeine and be satisfied. I can't remember the last time that I took the prescribed dose of a pain med, and that results in running out too soon.

Hi Justtobef,
I do not think there is a way to come to terms with TN when the attacks are happening. Most of the attacks are intermittent but lately they are occurring every 30 to 40 minutes apart and at times every few minutes. This has occurred only for the past week or so but for the last three years TN has been a constant intermittent companion. Fear of the pain is tough for me. We never know when a twinge will turn into a full blown attack. There have been a hand full of times where the pain has been continuous. During those times I can not move. Any movement makes the pain worse if that is even comprehendible.
I have only had to take an ambulance once because there was no one else to take me to the ER. It was a challenge just speaking to get an ambulance to me.
There have been times where I had the twinges without pain. It was like a constant tickle following the nerve path and some areas of the face. Now that sensation was strange. I have to take a valium to keep the tension down.
I find it very hard to be alone during an attack too. It is a tenuous life we lead!
Hope you stay pain free or the pain stays to a minimum.
Mike

WHEN I HAVE A FLARE-UP, MINE IS ALWAYS CONTINUAL. IT'S NEVER INTERMITTENT OR SHOCK-LIKE. IT'S A CONSTANT BURN/ACHE AND IT NEVER LETS UP. IT USUALLY LASTS FOR HOURS TOO...SOMETIMES DAYS. I HAVE HAD TO GO TO MY PAIN CENTER TO GET BLOCKS DONE JUST TO STOP THE PAIN BECAUSE NO PAIN PILL OR PAIN SHOT WOULD STOP IT. THE PAIN IS DEEP INSIDE BOTH EARS AND MY LOWER GUMLINES. IT'S HORRIFIC. EVERYONE IS WELCOME TO MY PITY PARTY. IT BEGINS TUESDAY AT 7 P.M. LOL!

Lisa,
I have both TN and ATN. The type of pain that is constant is the ATN (atypical trigeminal neuralgia). Both are horrible and painful. I can tell you the bad thing about the TN is that you have no idea when the attack can happen but the bad thing about the ATN is that you can count on the pain being there and not going away. The key that I have found that helps is keeping yourself busy with chores, crafts, hobbies and/or kids. This is a big help to me. It is a long journey but know that you are not alone. We have a great support group here, you can ask us anything! Keep in touch and we'll be thinking of you!

Take Care
~Rachel