Trigeminal neuralgia

Nerve disorder. Does anybody have this pain from the Trigeminal nerve in your brain. I need some input on this since this came to me after I had sinus surgery. I went to the dentist and he told me it was facial pain which I had years ago. Now it is worse. I'm taking carbamazapine and Tramadol which seem to help but make me sleepy. GUESS YOU CAN'T HAVE IT ALL. Lol If any one has this please let me know. I WOULD appreciate that. Jeannie

Hi,
I have been diagnosed with tn2, also called atypical face pain. My pain is in my teeth and jaw. I'm sure it began with dental work, and I have been suffering for about 10 years.

I've been to neurologists where they did scans nothing showed, same with ent and every type of dentis/surgeon out there. I have even pulled had teeth extracted, only to have the pain move to the next tooth. It's never related and I try every day to accept it.

It's treated the same as trigeminal neuralgia as far as medicines go, and I can't tolerate them, as they all make me very tired and lethargic.

I'm sorry you received this diagnosis. I don't know if you're always in pain, or if you get breaks. It's frustrating because because it's little understood by drs., and friends alike.

My medication that I was on for TN was taking at different times of the day. The quantity would change . That is why I am seeing a new doctor who is a neurologist. Hopefully he can give me something for the pain. I did have this before but wasn't bad like now. I hate to eat because it messes with your teeth. That facial pain doctor did nothing for me. He never called to see if the medication was working. That is why I'm finding another doctor. Meow3


Meow posted the above on a single thread, I am trying to help get the post under one heading.

I'm going through the same pain with having facial pain after having sinus surgery. If I knew this before the surgery I would of put the surgery off. This pain is extreme. I can't say I'm on medication. Just tramadol and carbazine. But don't really help. Don't know if you have head pain on the same side of the facial pain. Thank you for answering my question. I don't wish this pain on any one. Hope you have a pain free day. Jeannie

Headaches with constant pain in nose and electric shock with pain on right side, effect my eyes, lips, head, nose. Only same side of nose that I have tn. Can't wait to see my nerologist at the end of July. It's not soon enough. The carbamazapine and Tramadol make me tired. Hopefully he will prescribe something that will work. Don't wish this pain on any one.meow3

Hi JEANNE, I hope this message helps you out, I have Trigeminal Neuralgia for about 20 years and during this time I suffered a lot, and I've done two Neurosurgery over nothing. If I am saying over nothing, MY meant is instead my pain goes away after the dental procedure that I've got TN in first place, I woke up after the surgery with horrible and worse pain in the world, also leave weakness and numbness of the right side for me that never come back to the normal as it was, anyways, weakness and numbness one side the other side is pain.
Somedays, pain is worse than any days, for example, headache makes that worse, sharp pain like an electric shock. Jeanne, I do not want to scare you off but be aware if anyone suggests you surgery from the back of your head, do not do it. But, if your pain is too much and you can not manage that with medication, you can discuss with your Doctor Radiofrequency which is safe and that is most of the time if you can find a good and perfect neurosurgeon, then the Radiofrequency always will be answerable, and you are going to be the least pain, but you should discover and find good neurosurgeon and you go yourself find the right Doctor do not listen to anyone which say this is a good Doctor, have a lot of research.
Now about the medication,
those medication that you are on, ( Ultam and Carbamazepine or Tegretol is the other name ) are good medication but they are better choices than them.
FIRST, if you want tohave better medication, you should and have to change Neurologists Doctor and leave their office and go to the pain Clinic even if you ask your neurologist, he will be Agree with this. Because the Doctors in pain clinic they can menege pain in a best way as it is possible.
They will watch you every month and believe me they know a lot of Medication for TN.
I will name you bunch of them that your Neurologist might be does not think about, I mean I am sure your Neurologist knows them as well but he does not think about it.
For example Neurantine IS ONE MEDICATION with Baclofen toghether is best choice and they won't make you sleepy the same as those two that you are on, actually might be at the first few days but not as much as Ultram that I know.
Or the other option Lyrica with Baclofen or Narcoatic Medication like OXYCONTIN, OR MSCONTIN, OR MORPHINE ALONE. THESE MEDICATION YOU SHOULD SEE PAIN CLINIC DOCTOR THAT THEY ARE GOING TO EXPLAIN IT TO YOU, BUT NAME IT FOR THEM.
Jeanne, if you need more you can always ask me, and GOOD LUCK.

Hi Jeanne, As I explained the best Medication for TN, are 1: NEURONTIN AND 2: Baclofen, these two it should be together and also let your Doctor knows that you do not want the Generic one of NEURONTIN, THE NAME OF GENERIC IS gabapentin because its effect on the pain is not going to be the same as Brand one, I MEAN ( NEURONTIN). AT FIRST PLACE I WAS ON ALL MEDICATION THAT YOU ARE ON RIGHT NOW BUT SLEEPY AND CREEPY LIFE WAS VERY MISERABLE, I COMPLETELY UNDERSTAND YOU BECAUSE I WENT THROUGH THIS PATH WAY 20 YEARS AND THE WAY THAT PEOPLE WERE LOOKING AT ME AND JUGHING ME, IT WAS VERY PAINFUL ESPECIALLY I AM VERY PRIVATE PERSON and I did not and do not want the people around me whats going on, maybe it is mistake to do that .
Might be if you let the people know is better at least they feel your pain, anyway, I was on this two medication for 12 years and I was very comfortable until I've got bloating in my stomach they found is Neurontin after that they change to 1: LYRICA AND BACLOFEN
JEANNE, remember that LYRICA IS FOR FIBROMYALGIA TOO, (THIS IA NAME OF other DISEASES THAT I DO NOT HAVE) AND IF YOUR doctor mention that and tell you: "NO, JEANNE, YOU CAN NOT HAVE LYRICA BECAUSE IS FOR FIBRO, STAY ON YOUR FRASE THAT IS FOR TN AS WELL, BUT FIRST TRY NEURONTIN AND BACLOFEN THEN IF THE NEURONTIN DOES NOT HELP GO FOR LYRICA.
I give you some advice that helps me a lot and you should listen, 1: go to Gym do exercise as long as you can do, exercise help to increase blood flow and you feel your pain less, of course, first you start to exercise you feel your pain much more but after 10- 12 Min , you feel so much different and you see what I am talking about. 2: be strong, do not let pain control you and your life, you should control the pain, I completely understand is the worst and horrible pain in the world that always is going to be with you is this stupid pain, sorry about my language, is TN, EVERY PERSON WHO KNOWS about TN, UNDERSTAND IT, so even with knowledge of this , you can control it , human body can do what ever it wants just you should be strong and have power. 3: hot shower not hot pad, just go under the hot shower, relief you for couple hours so as a result go for swimming to the pool, you see how is different is. and GOOD LUCK.
ask me any thing you want, and do not forget that ask your Neurologist refill you to the pain clinic. ask him.

Maryam, hello & welcome to Healing Well. After reading your posts I can tell you have plenty of experience dealing with TN. I am so glad that you are responding to meow as she is really struggling & needing someone to talk to about TN.

Again, welcome aboard.

Maryam, we have had different folks come through here with a dx of TN. Treating nerve pain is not like treating normal chronic pain. A person needs to have care with a dr that has experience with TN & treating nerve pain. I too take Baclofen & have for years. It's composition is completely different than regular muscle relaxers, it works on the central nervous system. I just hope Meow can get help.

Take care.

Meow wrote the following on a single post. I am helping her keep all of her posts together.


Not feeling good today with TN. Head constantly aches on the side of TN. Just want to give up. Medicine not working. Suppose to go away with Hubby but cant stand the pain.

Thank you for the information. I wiil tell the doctor about the drug. I reallly want to say Im so happy that I got some information. Meow3

Jeannie posted this yesterday;


Hi Keeping you all in the loop of my TN. Especially Maryam. I went to the Neuroligist the end of July. I was on from my medical doctor Carbamazpine. 100mg. Told the neurologist I needed something for the pain. He said I will up the milgrim to 200 2x a day. Every day I am sleepy. Have to take a nap. I will continue with what he wants me to take. Its only been one day. Im going to give it a week and bare the pain. Im so mad at this. I showed him the name of the medication that you wrote me. He said we can try it if the carbamzpine dont work then we can try the other medication you have on your list. I cant touch my tn side of my nose. Much pain. I am so sad with the outcome of my visit. But will give it a try. Meow3. Jeannie

Hi Jennie, this is maryam. I saw your last note and I am sorry your Neurologist did not give you right medication.
As usual, Doctors, especially all the Neurologists, when they are talking about TN, they just know Carbamazepine with Ultram, and they go up with Carbamazepine till 1200mg a day and Ultram 200mg, these medications put you down all day, even sometimes, you can not even leave yourself up. I do not want to say what to do or not to do. but think about it right now are you happy with Carbamazepine 200mg twice a day, I am sure and I am positive that you are not. As soon as possible go and search who is the best and caring Doctor in pain Clinic. you should change your Doctor, you had to tell your Doctor, that" when the last scripts, I was on it, I MEAN the same medication, BOTHERS me why are you put me in higher those when the same medications, do not help me and I am always sleepy and I've got Depression also side effects bother me. tell him I want to be alive and the same time my pain to take care. just go to the pain clinic but find who is the best, when you search in your area, look at the reviews, how many patients he had, read the review's opinions, you should search all these things. and how many STAR he has.
but after all, the most important thing is your body, you know your body better than all Doctors, listen to your body, can tolerate, or how is the affection of medications on you. Listen Jennie, I have TN, FOR 21 YEARS AND they gave all medications, they thought is good For TN. I've DONE, TWO NEUROSURGERY, THAT WAS WRONG, MY PAIN GOT WORST OVER THOSE TWO surgeries MUCH WORST, NOT JUST A LITTLE, ANYWAYS, YOU TRY to TAKE CARE OF YOUR PAIN, WITH RIGHT MEDICATIONS.
Neurontin and Baclofen are good and safe medication or Lyrica and Baclofen. but you go to change your Doctor and go to the pain clinic. see what is their ideas. just ask me, whatever you need. i hope you feel better.