The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=16&m=3870619
Posted By : meow3 - 6/22/2017 7:55 PM
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

Posted By : straydog - 6/22/2017 8:17 PM
Hi Jeannie & welcome to Healing Well. I don't think we currently have any members with TN & I do not recall anyone having it from sinus surgery. So sorry to read about what you are dealing with. Are you by chance being treated by a neurologist? If not perhaps you can get a referral to be evaluated.

Please keep us posted on how you are doing. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : Sanibel - 6/25/2017 6:07 AM
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.

Posted By : Abilene - 6/25/2017 11:00 PM
I have a relative who was diagnosed with Trigeminal Neuralgia. She found a great deal of help from the Facial Pain Association. Search for that and you will see many different sources of help.

Wishing you the very best in finding your own relief.
Posterior C3 - C7 laminectomy and fusion 2 rods and 10 screws, local bone graft from surgery site-lamina and other bony tissue 12/17/2013; Hyperthyroidism; Sleep Apnea;
Thankful for my husband of over 40 years

Posted By : straydog - 6/29/2017 2:01 PM
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : MtnGrlNC - 7/8/2017 11:48 PM
I was left with severe facial pain after multiple sinus surgeries. They do not call it TN but I have tried all the typical TN medications with no improvement. One neurologist I saw had me doing sphenopalantine blocks. I would take a wooden cotton tip applicator, soak it in marcaine then insert it along the base of my nose until it hit the back of my nose. I would leave it there for awhile so the marcaine would reach the sphenopalantine ganglion. I can say it helped some at least until my next sinus surgery. The first time I had it done they used liquid cocaine and that worked better then the marcaine but liquid cocaine is not something they are going to send you home with. Unfortunately I still have the facial pain. I have been diagnosed with Empty Nose Syndrome something that can develop after sinus surgery when the turbinates have been removed. After over 20 years on methadone I just finally detoxed off of it. There are alot of nerves in the face and this can be a complication of sinus surgery.

If you have any questions just ask. My e-mail address is on my profile.

Posted By : meow3 - 7/9/2017 5:02 PM
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

Posted By : meow3 - 7/13/2017 11:28 AM
I have TN. But need to know if people that have TN have headaches from TN. On same side of face with tn? Does any body know how to set up a web site dealing with TN? There is no chat rooms to talk to other people who have TN? I'm not able to find a web site so you can Chat with other people who have TN. Meow3

Posted By : meow3 - 7/13/2017 11:59 AM
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

Posted By : straydog - 7/13/2017 12:31 PM
Meow, I would think your headaches would very much be caused by the TN. Have you checked out www.FacialPainNetwork.com? They may have chat rooms so perhaps you can check out that site, I really do not know if they do or not. From what I understand they have some great resources for TN.

Have you discussed with your dr how your medications are making you so tired, I would let him know. I wish you could see the neurologist sooner to see if you can get some relief with the pain. However, I know it takes time to get set up to see a specialist.

Please feel free to post here any time. Even though we don't have anyone active here now with TN, we are good listeners. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : maryam - 7/14/2017 1:07 AM
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.

Posted By : meow3 - 7/14/2017 6:41 AM
Thank you Mary for the information. I will never have the surgery on my head. I will just continue to go to nerologist and see if he can help me. I know these doctors don't know all the ins and outs of TN. It's a hidden diease. I've been praying for some relief from this pain. I don't like to go out side of house with this pain. I hope you find some pain free days. Thanks again. I want to ask what meds you are on for TN? Jeannie

Posted By : maryam - 7/14/2017 12:01 PM
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.

Posted By : maryam - 7/14/2017 12:45 PM
Hi Jeanne again, I saw your post that you complained about a headache and the other pain, I have those too exactly the same side that TN, but the headache is all over my head with just one only different, i feel more pain on the same side that I have TN, you know why????
because it's nerve damage, even if in future if you are going to have dental procedures on the side you have TN, your pain will increase, so in future if you have dental procedures you have to ask your dentist give first few days after those procedures give you pain killer, i mean besides your medication for TN.
MARYAM

Posted By : straydog - 7/14/2017 12:48 PM
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : maryam - 7/14/2017 8:11 PM
Hello Susie: and thank you for your post and your concern. I know and I completely feel somebody who is dealing with pain, because TN took from me, most opportunity in my life and I can not describe for you how I suffered. and I do not want someone the same as Jeanne who is young, having an experience like me.
I will give her as much as information that I went through, that she does not go through like me as a mouse. ( I am sorry about my language, I do not want to be disrespectful to anyone). Maryam

Posted By : straydog - 7/14/2017 9:04 PM
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : meow3 - 7/24/2017 1:04 PM
Trigeminal Neuralgia , I have not been to my doctor yet. I dont wish this TN on anyone. I will keep you all in informed on how my visit went. The 31st of July cant come sooner. I just want to throw the towel in and give up because the pain is extreme. Nothing I am on is working no more. I cant sleep because of the pain. Cant go outside because Im afraid I will pass out. To all people who have this TN I wish you pain free days. My hands are shaking while I am writing this. If anybody has any advice or help please let me know. Meow3

Posted By : straydog - 7/24/2017 3:54 PM
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : straydog - 7/24/2017 3:57 PM
Meow, I am sorry to read that you are suffering so much. When you see the dr please talk to the dr about putting you on Baclofen as a muscle relaxer. Mayam suggested this in one of her posts above & found that it helped her a good bit.

Hang in there until your appt, take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : meow3 - 7/24/2017 7:44 PM
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

Posted By : meow3 - 8/1/2017 9:19 PM
Hi TN people. I did go see the neurolgist on the 31 of July. He put me on a higher dose of carbamzpine. 200 mg. 2x a day. Showed him my note with the medicine you gave me, Maryam. He said since I was already on carbamzpine then that we will see if this works. Well, its been a day with no help. Just hope this starts to work. Its Making me very depressed. Meow3 Jeannie

Posted By : straydog - 8/2/2017 6:38 AM
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
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : straydog - 8/2/2017 6:53 AM
Jeannie, I looked up the medication that you are taking & drowsiness is a side effect they have listed. Since he has increased the dosage & you find the drowsiness to be worse, I would call the dr after trying the new dose for 2 weeks. I am guessing that since he didn't give you Baclofen he may have thought between the increase in your medication & adding Baclofen you would be too sedated.

Please let us know how you are doing.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : maryam - 8/4/2017 4:34 PM
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.

Posted By : maryam - 8/6/2017 8:56 PM
Hi, Jennie, I hope you are doing fine, I have not heard from you. Just let me know what happened to you with new dosages of your medication. take care.
thanks, Maryam

Posted By : meow3 - 8/8/2017 7:51 PM
Hi, Maryam. I was on carbamzepine for few months. First 100mg. Then they made it 2OO mg. Still not working. Called doctor .Nurse called back said we will let doctor know. Trying me on gabetdine. Bad spelling. Waiting for him to call me back. Thank you for asking. Let you how this works out. Meow3 Jeannie

Posted By : maryam - 8/10/2017 2:05 AM
Hi Jennie
If he decides to put you on Gabapentine, tell him you would like to have the Brand name of Gabapentine,(this is Generic) and the brand name is NEURONTIN BECAUSE THE GENERIC ONE IS NOT EFFECTIVE AS BRAND, I mean NEURONTIN, and I do not know the insurance accept it.
and listen if he wants to write the script, for Neurontin, he has to write the script NO SUBSTITUTION.
and he has to send to the insurance PRIOR AUTHORIZATION regarding accept to give the brand. I think you know what I am talking.

I hope he gives you Baclofen too. because of Gabapentine with baclofen, it's a big difference, but you should be off the Carbamazepine, after that. But you remember you can not come off Carbamazepine at the sudden, you have to cut down, Gradually. Is not good at all, be come off at the sudden.
talk to your Doctor about it.
And the other thing why you do not page the Doctor if it took a day or two, to Nurse return your Call, you know, if you suffer do not wait, page him, that's their responsibility.
Take care. Best wishes, and Good luck.




























9

Posted By : meow3 - 8/10/2017 12:17 PM
Hi Maryam, Just a update on my medication. Gabapentin. 3oomg. But the doctor wants me to continue with the Carbamazepine with the Gabapentin. That is a lot of milligrams. I seen that many people were on that and it didnt work. But know eveyone is different. How did it work on you when you used it? Im findind Im very forgetful with things on this. Did that happen with you. I want to thank you for caring and understanding my situation. Looking for a Chronic pain doctor that deals with this. Just wish family member was interested more with my pain. Im so sad about that. Going to depressed web on here. Maybe that will help. Thank you again. Mew
ow 3 Jeannie

Post Edited (meow3) : 8/13/2017 3:28:46 PM (GMT-6)


Posted By : maryam - 8/20/2017 11:00 AM
Hi, Jennie I know it's really hard to accept to be on a lot MG of all these medications but let me tell you what you can do to be off a little bit. I, my self, when I did not get a satisfactory result from Neurologist, I stopped to see them, and I went straightforward to the pain clinic, and that is my suggestion is to you, go and continue with the pain clinic. And the other suggestion is, after 21 years with severe pain and two stupid brain surgery, I found out, when the Doctor put me on Medication, I try , that do not take all MG that they told me to take, my meaning is,I will pick up the script from the pharmacy, but for taking, I take little by little, until I notice how much I exactly, needed. Sometimes, for example, for ur situation as it is now, you are on Carbamazepine 200 mg, I do not remember how many times you should take, please fresh my memory, I think it was twice, 200 mg, all over 400 mg, and with Gabapentin 300MG. You take, based on how much you think enough to control your pain. and I do not know how to describe better than this. My mean is you do not need to take 400 mg Carbamazepine with 300 G... that make you at the first place that you are not yourself, as you explain it. divide your medication. this is the best explanation. If you think you need to take all to control ur pain is something, but sometimes, if you have a little bit pain, with less than all these MG, and you can be tolerated, try to take less with some tolerating. I live like this with tolerating, I always have pain, I mean, you can not touch my face, it always has burning and sharp pain, sometimes when my hair even touches my face I jumped but I am taking less with tolerating.Sometimes when I have to visit my doctor and I complain, he says, "I can give you, for example, SYMBALTA", I SAY NO. I DO NOT WANT. I TOLERATED, I AM NOT SAYING I AM NOT ON MEDICATION, TO BE HONEST WITH YOU THIS PAIN THAT I HAVE IS KILLING ME. I AM ON 800 MG Lyrica, THAT'S HIGH THOSE, I CAN GO HIGHER BUT I DO NOT WANT IF I GO HIGHER I can not do anything just sleep, and with 80 mg Baclofen, he gave me Ultram on highest those 200 mg, but I do not take Ultram, just once in a while when the pain is too much, I just take 25 mg, just once for one time, that's it. Listen, is hard, is really hard to be this way, but I tried over and over, I play with medication, I take one time this another time that until I found out what is best for my body during 21 years. I mean I did not try it and I did not get it in a just one week, I've got during all these years. I hope this helping you.
and finally, your answer is, yes, I was this way that you are right now at the first place, finally, I saw, I know my body better than any one I DID the best for my self.

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer