Hello and thank you for having this support site. My doctor thinks I have TN. I am not sure though. Can you have facial pain all the time with TN? I have been suffering for 8 years and nothing has helped. I tried tegretol last night but could not take another this morning because I was in so much pain last night that I needed to take a Percocet this morning and you can’t mix the two. How do people give this med time to work without any pain management? I feel hopeless and would love some support. Thank you so much. Sarah
Sarah , I have tn and was dx about 4 months ago ! I take tegretol and gabapentin and amdatripdline and vicadin and cymbalta ! These are my daily meds , you need a good neurologist to help you !
Thank you Annie,
How long did it take for you to notice the tegretol working? My doctor told me I couldn’t take Percocet with it and I was in so much pain that I don’t see how I am going to take it until it kicks in with no other form of relief.
Hi Sarah, welcome you will get loads of information and answers here. There are 2types of TN one which gives short sharp electrifying jolts of pain lasting seconds or minutes and the other which gives burning constant pain. They are both treated the same with slightly different medication. I agree with Annie you need to a really good neurologist to manage your pain others on the site will recommend good neurologist in your area. Tegretol is the main drug of choice but the dose has be gradually increased to a therapeutic dose and cannot be stopped abruptly, once you start taking it you need to carry on, so need to decide if you are going to take referral or Percocet. You need to preserve with Tegretol, I know it is difficult, I have done it moving from one medication to another but you need help with this. Good luck it is not easy
Sarah, I had the same pain that you have , I did not sleep for. 2 months and I am not kidding the pain was soo bad ! I went to my neurologist and she is amazing and I am on a lot of meds but I can live my life and I still have break thru pain and that is when I take my pain pills. ! Hang in there and be proactive and get to a dr that will listen and help you !
Sarah, the meds took a few days , hang in there and give them a chance. !
Hello, I would ask my Dr to send me to the er room and have IV Dilantin infusions if things are so bad you just can't manage it. I don't understand how the percocet stops your TN pain perhaps the diagnosis should be revisited. I hope you can find some relief soon. My best to you Joe
Thank you ladies. I really want to try the tegretol because even the Percocet only cuts my pain in half. I think I will try it again this weekend when my husband is around to help. I have a 4 and 7 year old so this is really tough. I just don’t understand how do you persevere through horrific pain for days until it kicks in. There must be something I can take along with it until it starts working. Advil does nothing. Right now I have a naturopath but I will ask for a referral. I also want to mention that I have a lot of burning pain in my neck as well as my face. I read that with TN the pain rarely leaves the face area. Thoughts? I am so stressed and an emotional wreck. The pain has been so terrible. The worst thing I’ve ever experienced. I have been to a neurologist, pain management, a surgeon… None of them have said TN. My dentist said I have TMJ but I know it is way more than just that. My whole face hurts. My jaw, cheeks and above my eyebrows hurt 24/7. My naturopath I have known for years. I trust him and he knows my symptoms well. He has been doing prolotherapy but it doesn’t help. How would I go about finding a neurologist in my area from this site. This site is a blessing. I feel like I am fighting for my life and I am relieved to see I am not alone. This is a crappy club…
I really feel for you and understand your pain . It took a long time for me to be diagnosed and it drove me and my family crazy because I seemed to be unwell for anything. Pain ruled. I had been using Codeine but then was Rx with Tegetrol. It has helped. I find distracted thinking helps as we’ll. I have become a gamer on my iPad And I now find anything relaxing where the mind does not have to constantly think that pain rules. Right now I have been dealing with pain in my upper and lower jaw for the past week with little relief. I have even resorted to rubbing Oragel on my gums for numbing. It may be primitive but if you get a few minutes of relief it is wonderful. Another simple thing if you can stand it depending on your sensitivity is warm compresses on the area. I have had gamma knife as we’ll. and find that good ol TN is back. So please get a good neuro for pain management. I wish you all the best in getting some relief.
Chippy
Sara. Forgot one thing to tell you. Even though you think TN rules you please remember you are the keeper of your body. Be strong. Also. Even at night before you close your eyes and hope for some sleep that during the course of your day you must find something that made you smile. Perhaps a hug from hubby a smiley face on a child or that the sky was still blue and the grass is green. We could all be worse even though when our pain is at it’s roaring beast stage. There is some peace in our head and we just need to cherish or enjoy those precious moments before we indulge in which meds do I do now. I also forgot that I use LorAzepam as a sleep aid. If I do not sleep I cannot function. I may be a bit dozier but all the other meds give you the same feelings some days. Just tell people you do drugs (lol)
Got to leave now tomorrow big day. Going to sign my release papers and leave my job. Just too much stress right now. What do I have to be thankful for today you ask. Bought a pretty flower for my garden. I will be able to enjoy its colours when I sit and have a morning coffee when I am not working. Here is hoping you take a breath and a moment for yourself and you may be surprised that TN has given you a glimmer that it has hidden its hideous wrath and let you have a moment
A good night to all and let us find a way to end our suffering
Chippy
Chippy,
Thank you so much for writing. Your compassion is so wonderful. It made me cry just to realize there are people who understand. Thank you. I will be thinking of the things you said. They are very helpful and just what I needed to hear. How long did the tegretol take to bring you relief? My plan is to start it on Saturday night when my husband will be around to take care of my kids. I am frightened though because one night without being able to take something for pain and I was freaking out. The pain was so intense. Did you take anything else for pain when you started on the tegretol? I know I have to try it I just don’t understand how people get though the pain until it starts working (if it starts working). I wasn’t really convinced I had TN because my face pain is all the time but it sounds like that is TN2. I have been trying to read about tegretol being effective for atypical TN and it seems like it may not be as effective. I guess I won’t know until I try. How long is a fair amount of time to decide if it will help or not. I read it starts working pretty fast and that if it doesn’t help at least partially reconsider diagnosis. Last night when I tried 100mg it did nothing. Is that normal? Thank you for your time and compassion. It is heartfelt.
Squid,
The Percocet cuts the pain down to half most of the time. Sometimes it doesn’t work at all. Even taking Percocet, the pain is intense and ruining my life but without it I am unable to function. I have only been taking it for a few months when I asked my doctor for it to break a really bad pain cycle. I have tried tons of anti inflammatory meds, muscle relaxers, amytriptaline (which helped for a while), topomax, cymbalta. Nothing works.
Here are some prescriptions to ask your doctor TO HELP NOW. For many!
. Call them and tell them you need this to be called in…
Lidocaine patches, cut them up for pain relief many hours…for many.
Or
Lidocaine cream…again…instant!
If dr. Says no…get a new doctor!
Sarah. Good morning. Our eyes are open and our feet are on the ground. When I started tegretol or carbamazepine I think I was on same dose as you I I currently since gamma I am down to 600 mg a day - Was lower but pain is increasing so that is why you need something specific for nerve pain. I am in the process of getting a new neurologist because my prev family dr I was his only TN patient now that I was due to Dr retirement had to get new Dr that I am blessed (haha) to get another Dr who knows nothing again. Pleasefet Dr Ken Casey book “Striiking Back”. It will give you some basic info and you will be informed on many aspects and what the meds do and you may find something there. I went many many years thinking I had migraine sinus and TMJ. Boy was I is diagnosed!
Watch his video on this aight it too will be informative. I met him in2008 at a conference in Dearborn Mi. I was amazed as you that I was not alone. This sight is full of wonderful people who are willing to provide their trials and errors and PAIN. As they say You Are Not Alone
smile at something today.
Chippy
I am writing today because I am feeling very much alone. I also, like Sarah above, have pain 24/7, and am only finding some relief through pain meds to put the pain in the background. I am a middle school teacher who has had to stop working for months. My family is wonderful, but there is no way for anyone to really understand what is happening unless going through it. My pain is on the left side (teeth, jaw, ear, piercing head ache). I have been on trials of gabapentin, tegretol, and trileptal. I am scheduled to have an MVD at Mass General next week. I am hoping for relief, but I am scared. I am writing to see if anyone out there experiences SEVERE pressure/pain in the temple area that gets aggravated when laying down. It is debilitating. Doctors seem uneasy about diagnosing type 2 TN. It is very real. I am so tired and sad and worried the surgery won't work even though I am seeing one of the best doctors in the world for this (great reputation, but not a good bedside manner). Thank you for listening.
Amy26. Many TN sufferers use those neck pillows with the curve in them. They help with not sleeping on one side. The side that hurts.
Best of luck on your MVD surgery. If you have watched Dr Ken Casey’s video (Google him). It will say they are now doing MVD surgery for atypical TN. All the best to you. Keep us informed. We would like to know your outcome
Chippy
Thank you, Chippy. I will try the pillow. I have watched Dr. Casey's video (three times) and it was very helpful. Thank you for taking the time to respond!
I have bilateral ATN with constant pain. I am doing really well right now because my medication is working for me. I am on Amitriptyline.
I just wanted to give a link to a discussion that I started about ATN & MVD, as well as other invasive procedures.
http://www.livingwithtn.org/forum/topics/confused-about-atn-mvd-surgery
I also have found that doctors are apprehensive about diagnosing Type 2 and really are not able to offer much in the way of hope. Some doctors are willing to try MVD but the statistics are not so great--65%. And after reading some people's experience with this and nerve blocks I don't want to do any of them. Not only can they be unsuccessful, they can also leave you in more pain.
Research and learn as much as you can before even considering these things.
Thank you for posting this. I am so confused. I am going to post a new topic with my symptoms and hope for replies. I am just not sure about my diagnosis. I am scared to try tegretol in fear that it won’t help…
Thank you! I have lidocaine patches and will try them. Thank you so much.
Kc Dancer Kc said:
Here are some prescriptions to ask your doctor TO HELP NOW. For many!
. Call them and tell them you need this to be called in…
Lidocaine patches, cut them up for pain relief many hours…for many.
Or
Lidocaine cream…again…instant!
If dr. Says no…get a new doctor!