Trigeminal Neuralgia Support Group

Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.

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mcmarik 03/19/2011

Well since being properly dignosed with TN on March 1st ~ I went back to my Oral Surgeon (Maxillofacial) on March 15th and told him that since being on Carbamazepine that I only had 1 bad attack ~ his response "Great! Your condition is exactly what I predicted but your age concerns me" I'm 39 ~ he also stated that he wanted to see me in a month and possibly starting weaning off the Carbamazepine to see if they were really helping or if the TN went into remission. I have not been to work in almost 2 months because I am terrified of a attack. I don't drive anymore because I feel like I am drunk ~ when I told the Oral Surgeon about the side effects I was experiencing ~ he told me it was the prescription and eventually my body will get used to it ~ Is that true?? I called my primary (Internal Medicine) and he is seeing me on Wednesday March 23rd because I was really upset with how the Oral Surgeon just kind of brushed everything off and sent me on my way. When I even mentioned the severe headaches on my left side (same side as the TN) he said that it was unrelated to the TN ~ Ok ~ then how come he did not refer me to a neurologist??? I am in tears thinking about what the Oral Surgeon said to me and feel the pressure building up for another attack ~ I can't deal with this!

deleted_user 03/19/2011

Sorry to hear about your pain. You need to see a neurologist. Hopefully one who knows about TN. I take the same meds you are I still haven't got use to the side effects.I too had to quit work and can't drive any longer. My husband makes sure someone is with me at all times.I do trust my doctors. they have told me from the start there is no cure for this we can just hope it goes in remission. I just have headaches when its time for meds. So far I can tell you my body has not gotten use to the side effects. I had this for 10 mouth. But the meds keep the pain away even tho they've gone form 300mg to 1200mg. As everyone say hold in there.

BostonTN 03/19/2011

HI Mcmark,

TN has been showing up in younger people more frequent than before... I was 44 when I was diagnosed ... It is awful... You are right you should consult with an Neurologist... You may have to be pushy with your PCP but remember they are working for you...

The meds are awful but you will get use to them.. for me I still can't drive and I lost my job... This whirlwind of doctors, pain, worrying about work and losing your home should send anyone over the edge... This web portal has kept me sane and I don't feel alone... We are all going through the same things and it helps me a great deal to rant and ask for advise from empathetic people whom understand or have gone through the steps of this awful disease... The headache can be be associated with TN..

I wish you a pain free day... Prayers and Hugs...Sorry you are here.

deleted_user 03/19/2011

I was 36 when I first got TN so it does happen to younger women. I have read where people in their teens have gotten it. I usually get more used to the meds as time goes on but never 100%. I have never missed a day of work but boy do I find mistakes all the time now. It is very hard to concentrate. If it wasn't for the people I work with, I never could keep working because there are times I cannot not talk. They cover for me alot. The last time I was on the meds (I had MVD 5 years ago but it came back). I was on 2400 mg of Neurontine and then whatever my Neurologist was trying in addition at the time. I know I shouldn't have been driving but I had to. I have to work because I provide the health insurance for the family as well as a major portion of our income. My biggest piece of advice is see a neurologist. Some are better than others but they will understand what meds or combination of meds will be best for you. I was NEVER taken off my meds to see if I was in remission. I think that is foolish because it will come back. Good Luck.

deleted_user 03/20/2011

First of all, get your primary to refer you to a neurologist. Hopefully it will be one that knows how to treat this condition. No attacks for 20 days? I would not call that being in remission. I go as much as 6 weeks without an attack. I am on the same medication as you and if you have not adjusted to it by now, maybe they need to put you on something else? There are several medications for this condition and what works for someone else may not work for you. Maybe you can't tolerate this medication. Be sure to tell the neurologist that you have not adjusted to the medication. They put me on Neurotin one time. WOW What a roller coaster ride. I could not tolerate it at all. I was diagnosed July 2010 and struggled thru work until Jan 2011. I just could not do it anymore. I am terrified to drive, go out in public, meet with customers etc.... In my case it's not a question of if I will have another attack, it's a question of when. I have had quite a few. Have you had an MRI? If not, get your neurologist to schedule one for you. Just know that you are not alone and we are all wishing you the best.

jady 03/20/2011

i wouldn't go back to this dr at all. stick with your gp and a good neurologist they will get it figured out. i ran across several drs like this or just gave me root canals probably for the money. i was 44 but they think i could of had this condition since i was 5. always treated me for migraines and none of the meds worked then when i had the horrible pains and they didn't go away when i was in my early 40's and the anti convulsant drugs helped they figured i might of had atn all along.
just do one day at a time and blessings for pain free days for you
jady

deleted_user 03/20/2011

Your internal med Dr will refer u to a neuro. My internal med Dr writes all my pain killers and other meds but my neuro writes my trileptal. I was diagnosed at 37 and my neuro said that was young as well. The headaches can come with the TN. TN can also agrivate other conditions and cause some conditions. Oral surgeons and dentists think they know about TN because the pain is in the face and teeth; a neuro is the person who should know. Please ask your internal to look for a nuero that has delt with this b4 and one that they trust. Maybe ask and see if some here is in your area and has one they like. Please let us know how things go. Drop me a note if u have questions or I can help u with something.
Julie

deleted_user 03/20/2011

Hi! I know you are tired of fighting the pain and waiting for another attack of the awful pain. But the first thing you need to do is take a deep breath or two and trying to calm down anxiety will bring on another attack for sure. I've had TN since 2003 and have had it under control not gone but bluntted and doable.
I do three things first of all find a Neurologist or neurosurgeon that specializes in TN. 2nd find a Massage Theapist who does deep tissue massage to losen muscles in neck, shoulder in jaw especially if you have TMJ helps alot. Also try meditation, or light to moderate exercise of some sort,or a hobby of some sort just something that helps you focus on something other than your pain. Last of all never ever let it stop you because when you do the pain wins. You can't live in fear all the time it will eat you alive. It's tougher to live with a serious health issue then to be healthy I've always said but Gods never gives you more than you can handle even though it can be danting sometimes. But YOU CAN DO IT =)

deleted_user 03/22/2011

HI i have just found out i have this and im 29 turning 30 so yes it can happen young, dentist are not qualitfied in this your lucky if you can find one that is you need to find a good doctor who will send you to a neurologist and have all the test to make sure you dont have any other underlying issues thats where im up to and i dont want to stay on the medication so i am going to try phyiso and acupunture aswell as the diet they recommend and ive started taking magnesium and b complex ill let you know how it goes.

deleted_user 03/22/2011

I too am sorry to hear that you are going thru this awful disease. I was 40 when I was dx and had the exact same problems you did. I felt like I was drunk. It was completely affecting my life. Get the surgery. I am not kidding you. It will save your life. Go see a nuerolgist who will refer you to a surgeon. Do it!

mcmarik 03/25/2011

Thank you ~ I went to my Internal Medicine doctor on Wed and he is referring me to a neurologist in which I have been asking all doctors since Feb 10th to do but for insurance purposes and the small town that we live in ~ doctor's have a protocol. I left the Internal Medicine doctor's office totally pissed off and frustrated because when I was explaining the effects it causes (mind you ~ I have my good days and I have some really loopy drunk days) all he said was that he was not familiar with TN but if I was feeling this way then I should get off the Carbamazepine and just take Lortabs or something else (wth?? I told him that those don't help with the pains) I also told him that I told the Oral Surgeon the same thing and he told me that it was the medications but blew me off when I asked to be referred to the Neurologist ~ so Thank Goodness my Internal Medicine doctor is doing just what I requested and referring me!! I will keep ya'll posted and Thank YOU!!!

deleted_user 03/28/2011

i'm not even 30 yet and i just got diagnosed with TN... Keep your chin up and hopefully things will get better. I went to a neurologist who put me on meds and didnt tell me anything, so i showed up at the er in pain and the doctor there diagnosed me.

deleted_user 03/29/2011

I was diagnosed at 28 with TN so it just goes to show you that the statistics of this being a disease for people in there 50's is bogus. So many younger people are being diagnosed and we need professionals to stop ignoring these excruiating illness and start funding more research so our voices can be heard and we can start getting benefits for this debilating disease!

deleted_user 03/30/2011

I'm 37 and have had this for about 9 months ish. During this time I've not driven. Over Winter I hardly went out. I was told by my neurologist last Monday based on a really detailed MRI that there is no organic cause that can be opporated on. I'm in the process of having my meds altered from carbamazapine (I've been on a dose as high as 1600mg per day with additional amitriptyline) to topamax with two other back up options. I've been told by my neurologist that he can't cure me, he can only help with pain management. He said it's like baking and with my neds it's like trying to find a receipe for the perfect cupcake. He's trying to find the receipe that makes me the best I can be under the curcumstances. I'll never be how I was, and that's something I struggle to get my head round some days, but life can be better than this. My neurologist also told me that this is likely to be a very slow process and said to me that anybody who had promised me otherwise was lying. My neurologist is very blunt and honest (which I appreciate after nine months of hope raised and dashed). You really need to see a good neurologist.

mcmarik 03/30/2011

Thank you all ~ really, I mean it from the bottom of my heart. As I sit here in tears writing this. Every doctor I have seen has told me this is treatable. I have an appt with a neurologist on the 19th so hopefully he could give me the assurance that I am looking for. I have also been on a website for TNA and there are alot of helpful links to this horrible disorder. My husband was willing to drive me to Richmond, VA (only 4 hours from where we live) to attend a seminar for Trigeminal Neuralgia but it cost $69 a person (we can't afford that right now).
I have been on Carbamazepine for a month now and was doing great until 5 days ago. The pains are slowly coming back, being yesterday the worst. I cried myself to sleep because really I do not know how much longer I can deal with this. The company I work for keeps denying my short term disability claim because their physician feels that this is not serious enough to prevent me from going back to work. So, what do I do?? My husband works different hours that what I am normally scheduled so he can't take me to work. We just moved to this town not to long ago from MI so we don't know to many people. Do I keep appealing the short term disability??

Again, thank you all!

deleted_user 04/03/2011

I agree with kitkat. Try to get in with a doctor who specializes in
TN. The neurologist I was seeing told me for over 7 months I didn't have TN.Each visit, he would ask me how my headaches were doing! All the research I was doing kept coming back to TN. Nothing else fit the type of unbelievable pain I was experiencing. I finally found a specialist and called their office. Once I sent my records and a list of what I was dealing with to them, they called me back the next day and I was in to see him two days later.He was 6 1/2 hours away, but it was worth the drive.It has been under control since then.

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