TN or TMJ?

Posted , 7 users are following.

Hi everyone - As we all are, I am in desperate need of some help and doctors aren't providing much. I have been in pain for about a year (which I know isn't long compared to others). Mostly it is a burning sensation on the back of my head at my neck with shooting/stabbing pains into my eye. I also have soreness around my jaw and a lot of ear pain, some throat pain. Sometimes there will be shooting/prickly pains along the side of my face into my temple. I have been in physical therapy, which helps some. My neurologist thinks it is mostly occipital neuralgia. But he was in a hurry, of course, and didn't really listen to all of my symptoms. He put me on gabapentin, 300mg 3x a day. I have only been on it two weeks. Some reviews say it takes time to build up and be effective. I have tried to remain hopeful the past cople of weeks, but this week I went on a trip out of town and being out of my routine (still tooks meds, but slacked on PT) made me feel miserable and lose what little bit of progress I have made. I am worried about whether or not I have TN or TMJ instead of ON. I want to get the right treatment. Like many of you, I am terrified that my life is over. I'm 31. After this week I feel I can't travel. I already canceled a trip to Europe, which my husband and I had been planning and saving for for years. I was planning to have a baby next year, but feel I can't in this state. I am a teacher and am terrified to go back to school because I can barely function. While I don't feel overtly suicidal, I have thought of it as the only option to unburden my husband and my mom if this continues. I am barely a fraction of the person I once was.  All this in just under a year. Has anyone found successful treatment? Are you ever able to any semblance of a normal life?

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  • Posted

    I've had TN for 9 years, and from the symptoms you describe, I would say it's definitely not TN. Don't hesitate to find another doctor. The first step is to positively identify what condition you're suffering from. If you DO have TN, carbemazepine is almost always the first drug prescribed, and it's usually effective at first. There are several invasive and non-invasive treatments for TN. Get diagnosed and use Google to research as much as you can. Educate yourself so you have a better idea of what you're dealing with.

    Step 1: Get positively diagnosed, and get on the proper meds and dosage. What you're taking now obviously isn't working.

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  • Posted

    I know how you feel. I have had constant pain from December 2015. They say I have atypical TN. I am only 26 and I have no kids. I was planning to get a kid this year, but instead of that I am full of drugs. I had a failed MVD 2,5 months ago. I am writing to you from a hospital. I am here because I couldn't take more pain and no pills helped. I have tried them all except morfine. So I asked for it. They didn't give it. Instead they put me to a hospital and try to make some test injunctions tomorrow. So let's see how that goes. I am terrified and think about suicide constantly. I am scared that my life is over. I have spoken about it with my family and they want to send me to psychiatrist. Also hospital organized me a psychiatrist meeting for tomorrow. I don't believe it helps as she can't take away my pain. My family and bf are very supportive, but I still feel so alone. I come to forums because this is the only place where I feel people understand my feelings. I am so scared that my life will end with a suicide. So scared that they can't take away my pain. I still doesn't understand this is my life now. It feels like a horrible nightmare. I don't live anymore, I just suffer. I also had to cancel vacation to another country. I love to travel, but I can't anymore. I'm so scared. All I want is to fall asleep and never wake up.

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  • Posted

    I forgot to write, can you go to a hospital? That's how I started my treatment. I went to ER and cried that I will kill myself soon if you don't take this pain away. They put me to a hospital and tried different medications. In the end they booked me a MVD. My regular doctor is totally useless and waiting line to all

    specialists is long. It might help you. They can try different medications and some combination might take away your pain. You haven't tried Tegretol, amitriptylin etc. I have read that many get help from amitriptylin. If you can't go to a hospital then maybe you can ask your doctor to write it to you?

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  • Posted

    I'm on 900 mg of gabapentin an 300 of oxcarbazepine it took 2 or 3 weeks of pain to get a good balance and trying to find the right combination it's not perfect good days an bad days but I have had trigeminal neuralgia neuropathy

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  • Posted

    Hi Sarahen

    At a guess You are in the US, I am in SW United Kingdom and others are spread around the world. Australia is renowned for their pool of knowledge as well. From that we see all manner of different terms, TN, TN1 ,TN2, ATN and so on and so forth. Medications are the same with different trade names for the same medication depending on the country you reside.

    Trying to offer or even glean suggested treatments is fraught with all manner of problems and as such everyone needs to hasten slowly.

    I found that if I was as aware as I could be regarding symptoms and what worked in those circumstances was most important. If this terrible problem was so easy to find a solution for these forums would cease to exist.

    My solution was getting MY KNOWLEDGE up to speed and then finding a GP willing to get INVOLVED. I got lucky but you soon learn to stop worrying about hurting a GP's feelings. I just demand to know what thier knowledge level is and are they prepared to stay the distance. If they get upset I suggest my own remedy and move on.

    The first question I had for the surgeon who did the last procedure how many times he had performed it over what period and when was the last one he did. He had no problems with those questions and it all went well.

    We hear about MVD and heaps of other treatments the problem is most people think these nerves only exist in specific little apertures. Mine didn't, left side of face just below eye socket and there lives the PAROTID gland. A biopsy showed some cancerous cells so out it came along with every branch of the trigemal nerves wholus bolus. No more pain, no more headaches (that I can't control very easily) and no more electric shocks either. No more heavy duty drugs, not even withdrawal symptoms dropping them in one go even.

    Most general advice would not ever touch these areas just my team of specialists who have a weekly collective discussion group were not about to stop chasing every option.

    [[lecture mode OFF]]

    Sorry .... RESEARCH, RESEARCH, RESEARCH and do not leave anything out of the loop. Be the eternal KID and ask WHY?, then WHY? and more WHY? till YOU are satisfied that YOU have been answered

    My GP and others took over two years to pin down the exact medication that worked for ME and when we got there we kept looking

    NEVER GIVE UP UNTIL YOU HAVE YOUR ASNWERS

    (sorry rotten keyboard is off tune tonight!!

     

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  • Posted

    Hi!  I hope I can convince you that you are not near the suicide option.  Your situation does not sound like mine.  Mine seems more local...only in the cheek and tooth area.  That being said...the trigeminal nerve 'area' has basically three major nerves.  One goes to the top of your forehead area, one goes across the cheek/nasal area, and one travels under the chin.  I'm not a doctor, but that's what info I got out of it.  Sounds like you have a nerve/nerves that are affecting the 3 areas.  I'm so sorry.  The tegretol (carbemazopam) worked well for me for around 5 years.  So that's something.  After I developed too much of a tolerance for that, I had the mvd surgery.  It didn't work.  Now I'm on the carbemazopam again and a new drug, vimpat, and I'm pain free, but I'm heading to a specialist out of town.  I can't afford it, but I'm not ready to give up...yet.  There are other options...you need to research!  I saw my neurologist yesterday, and I told him I have been pain free for 5 days, but it doesn't matter.  Knowing that it's coming is there...all of the time.  They need to make it go away.  Exhaust all of your options, first!  I wish you luck.  Let's fight!

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  • Posted

    Hey Sarathen,

    Whatever or however much pain you have do not ever think suicide is the answer, It is not!!

    You need to have a MRI done,full scan with and without dye. . This will shos if you have trigeminal or not and usually with TMJ your mouth pops/ jaw pops.

    I have TN damnage from a bad root canal where the dentist went too deep on my lower jaw and damnaged my phangel nerves. Anyway, I have been on gabapentin for over a year 1200 a day so far. I was in medical field for years then switched over to coulenary as I love to cook. I have pain alot but talking to my Nuragist in Oct. When new insurance kicks in. I also have rumat. arthritus bad pain.

    So, my advice to you is get MRI and by far a different doctor as he should take time for you. I wish you luck. Keep me posted. You will be in my prayers. Don't give up as suicde is NEVER an option....

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    • Posted

      With tn damage their is not a cure right i had a virus attack my nerve in my ear ive been fighting the pain for a year ups an downs with gabapentin an then i tried other drugs but i got tolerant to them
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  • Posted

    Thanks for all the feedback everyone. I am so, so sorry for all of your pain. Let me reassure you all first that I am in no iminent danger of suicide. But I have always thought it so unbelievably selfish and did not understand how people could go through with it. I now have a little better understanding of why some feel it is the only way out.

    I have researched a TON. I had to stop becasue it was all I was doing and it would just upset and frustrate me more. I feel like I know TN, ON, TMJ, sinusitis, and several other diseases very well. I have had an MRI of brain and neck (no die). It showed some herniation in the cervical discs, but the radiologist said it is not blocking my neural pathways. My PT was not all that concerned about the herniation (and she is the only one that really listens and spends a ton of time trying to help me). The neuro didn't even look at the scan. He thinks it is more ON than TN. I will insist he does on my follow up. Today is a slightly better day. Functioning better than yesterday for sure. I am thankful that there are moderately good days at all, as at first, there were no good days. I am scared that I will wait out the gabapentin just to find out it is TMJ and have to start all over. There is no popping or locking in my jaw, but I have many of the other symptoms. They just overlap so much with ON/TN/etc.

    My neuro did say he would try a nerve block if I do not have 90% pain relief on gabapentin. Then if that works we can talk about deadening the nerve if the pain comes back. One of you mentioned nerve removal. Anyone else have experience with deadening or removal? Did it help? Side effects?

    Take care everyone!

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  • Posted

    Good morning Sarah,

    It sounds like tn since it's the front side of your eye, cheek and throat. And it could also be a nerve root with the occipital area if the back of your head is sensitive and your experiencing stinging, throbbing in the back of your head.

    Get your doctor to do a test to check the nerve roots for each so you know what you are dealing with here.

    Tell your doctor your not getting relief, say like you would from a headache that you know will go away. If this has halted you in your tracks,it's preventing you from traveling you need to be more forthcoming with your doctor or call your insurance company nurse advice line until you can get the right test, doctor, holistic to manage this better and be on your way to recovery.

    Keep us informed please.

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