Trigeminal Neuralgia

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I'm 23 years old and experienced my first attack a couple of weeks ago. I've had 4 more attacks since then and like a lot of you thought it was my tooth, so went to the dentist. They found nothing so i then went to my doctor who confirmed this is what he thinks it is. It always happens at night, when i'm lying down and from what i remember i'm usually lying on the side of the pain - so that is my trigger i think. I'm finding sleeping really hard now because i'm constantly tense, waiting for another attack. Having read up on it i'm now a bit depressed that it's a permanent condition... Apparently it will get worse as i get older! How the pain can get any worse i have no idea. I am wary of taking medication but think i'll have to if the attacks become more regular. I just hope it doesn't interfere too much with my life sad

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  • Posted

    Hi all, just thought I would share briefly. I have suffered from facial and jaw pain for 14 Years since 1996 to 2010. I will keep it brief because as you can imagine there is a huge history here. The facts = went to my dentist with a toothache upper right incisor. Nothing found. Insisted dentist do a root canal to remove the nerve. Pain continued. Nothing found on x-ray. Was referred to GP. Was put on Tegretol. Then used alcohol and Tegretol to numb the pain as was so extreme. Over the 14 Years was referred for and had - Gamma Knife (Radiation) was effective for 6 Months immediately and came back at Christmas like a bolt out of the blue. Also took Gabapentin. Didn't really help neither did the tegretol even though Tegretol is supposed to be used as a diagnostic tool. Took anti depressants - had bad reaction with nightmares amytryptaline. Woke up seeing things move in the room and felt someone holding me down trying to suffocate me. Came off those! Went for a ketamine and lidocaine infusion so they could see the drugs effects on the pain. Was going to have micro-vascular decompression but they couldn't find any evidence of blood vessel or artery compressing the trigeminal nerve near the pons where the major r/h branch exits the brain. So they performed alcohol/glycerol injection into the nerve same area to partially destroy the nerve. Slowly took effect over a few months pain came back after 6 months. Eventually 14 years down the line was unable to walk without holding my head every few minutes and being in excruciating pain. MRI eventually revealed obvious compression on the TN. Went for Microvascular decompression surgery, which terrified me, in 2010 and it was successful. Straight off Tegretol and pain free thank god for the 5 years. I pray every day that it never returns. I have been told that the period of time it may return if it's going to will be around the 7 year mark. The small piece of teflon sponge can move apparently. Or you can get other vessels compressing the same nerve or on the other side. The surgeon told me in the ward that it was the largest compression he'd seen in a while which gave me confidence that hopefully I won't see a return. Only time will tell. My life was totally the search for the solution. The specialists all told me that nothing was showing up and sent me for a years pyschotherapy and that obviously didn't do anything. There was something physically wrong inside my head and I knew that. The bolts of pain would come searing from inside my, exit near my eye on my cheek and pulsate all over my face, jaw and head every few minutes and bring tears to my eyes. I wasn't able to talk, swallow properly or eat, move my face, go out into wind, clean my teeth or anything. Sleeping and being blacked out on alcohol were the only times I got relief and even then some nights when I couldn't get to sleep because of the pain it would drive me insane. In the end I felt like taking my own life. They call it the suicide disease. That is what I read somewhere and I can believe it. But my message is, don't give in to this god awful pain. There is a solution for you out there I believe and you just have to find it. And yours doesn't necessarily have to be a long journey like mine. Find a good TN specialist, do your research, find out your treatment options and go through them and get help. You don't need to sit and suffer in silence. I spent way too many years living in the pain and in the end my life became intolerable. Message me for any support or advice that I can help with as I had this condition for a long time and have tried many different treatment options. The only thing that helped me with the pain was accupressure. I was able to eat a bag of crisps following the treatment but of course these are only temporary and you need to find a lasting solution. 
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    • Posted

      Hi stevep1965

      My daughter has suffered agony for a year now and nothing has worked. She had Microvascular decompression surgery and was told that this would probably do some good. She had awful post operative pain and still the trigeminal neuralgia has continued. Even on her better days she is really suffering and she is on all sorts of drugs which seem to do little for the pain but often make her feel sick. we even wonder whether something has been missed in the operation. You suggest that people find a good TN specialist and we wonder if you can tell us who sorted your problem out. She i due to see sombody at Sheffield Hallem next week.

       

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    • Posted

      Hi I'm so sorry to hear all the things you have been through. My mum suffers from TN too. Do you mind giving me your email address so my mum can contact you?

      Thank you

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    • Posted

      My MVD was performed by Mr Habib Ellamushi. I also had Gamma Knife Prof Lindqvist at Cromwell Hospital London and alcohol /glycerol injection Prof Coakham in Bristol. Mr Ellamushi is at Barts - Royal London Hospital.
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  • Posted

    Th doese not go away my first time I was 28  I was put on amitrptl and ttramidol for pain the medicane works for you if you keep taking it if you stop like I did because i don't like pills well I found out very fast that was bad to do I have never done that agin tn can be managed but there will be times when you will have to increase your meds and I was one of the lucke ones who got the th on my left side about 11 years after I got the right. Side I now take amitrp 100 mg once a day and trimadol 100mg and oxecrozine twice a day 300mg and one more pain med  as soon as you feel the pain you need to have your doctor change your meds you we'll always be on meds but it can be manged you also have to watch your pain as we do not feel pain like other people I was working and felt sick then I was throwing up I just through it was the stomach flu but by day 3 I went to my doctor thingking it was nothing when they did my ct
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  • Posted

    Scan my doctors could not understand why I was not feeling pain as it was not a stomach flu but an cyst on my ovaries had pop if I had waited any longer I would have died  be careful and always take your meds if you dont feel good make sure you go to your doctor wish the best for you
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  • Posted

    I've just had a procedure carried out to treat my trigemenial neuralgia. Glyeriol injection. I've never felt pain afterwards like it. They woke me up and my brain felt frozen. I was given lots of ormorph and cosine. Seven days later my nose eye teeth and ear are cold and dry...worse than before. I'm absolutely heartbroken. I'm shattered by it. The pain makes me sad and anxious. My son has special needs and my work life takes it's toll on my mental health. I really want this to stop.i regret having the procedure. My brain hurts. I would love to hear of anything I can do to help this feeling end. T.n specialist number anything??? Big love to you all x x

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