Facial pain for 3years.....Trigeminal Neuralgia?

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I have been suffering with facial pain for 3 years since Oct 2012.... Over the course of these years I have had one brain scan, a nasolaryngoscopy, a thyroid ultrasound scan, audiology tests (where I was told I have bilateral sensorineural hearing loss both ears & tinnitus),numerous trips to the dentist & xray of teeth, all of which have come back normal? I was referred to the tinnitus clinic and fitted with hearing aids which have proved to not be beneficial. After my brain scan, the consultant put me on low dose 10mg of Amitriptyline for nerve pain and I was discharged back to my doctor.Since then I have been in excruciating pain in the left side of my face, which feels like it is in my teeth and left side of nose and my cheek starts to twitch along with numbness and tingling. I also have numbness and tingling in my arms/hands.The pain has been so bad it has sent me to the A&E dept several times this year, I was told that I was suffering from trigeminal neuralgia and was given gabapentin.The latest episode was 2 weeks ago where I was taken to A&E from work because I couldn't bend my neck forward without having shooting pains down my back and I was diagnosed with muscle spasms in my neck and back, given anti inflammatorys and then discharged back to GP who prescribed Diazepam to relax my muscles. 

I am still in terrible pain.... but this pain seems to be invisible and is very hard to describe.Any advice would be much appreciated. 

 

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14 Replies

  • Posted

    I have had similar pain for a year,  I have been on so much medication it is ridiculous, so I am now trying acupuncture.  After two sessions (and a third tomorrow) I can now say that I am feeling the most normal I have felt for a long time!

     

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    • Posted

      Hi Christina....

      Thank you so much for your reply. I'ts good to hear you're getting some relief from your pain. Acupuncture is something I will definately consider, I will try anything to get rid of this pain! You're so right.... Normality is something us sufferers dont feel most of the time! 

      Thanks again

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  • Posted

    Dear Marie, I suffered for 3 years, dont suffer in silence there is help out there, I was referred to Oxford and had MVD operation, unfortunately for me it did not work, However I then had a TIC Injection and this has helped immensely. I was on 400mg Tegratol slow relase 3 times a day, I lived my life as a zombie, now I am pain free. The injection I had is not permanent but I am at present drug free and more importantly pain free. You need to keep pushing to be referred to a neurologist, they are the only ones to really help and understand. Good luck Jill
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    • Posted

      Thank you.... Your reply has given me hope that there is help for me. I'm glad the injection has worked for you. GP visit next week and asking again for a referral so...fingers crosssed!

      Thanks again

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    • Posted

      Hi Jillo,what is a TIC injection? I live near a Oxford and have had ATN for 14 years with a few remissions( bliss!) I have taken myself off all drugs as I ,too,was like a zombie.I prefer myself as myself ....but keep on researching.How glad I am for you to be in no more pain! 
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    • Posted

      Hi Wanganui

      TIC injection is like a freeze injection a needle goes though your cheek into the back of your head where the nerve starts, i believe its the same as the glycerol injection, you do have numbness on half of your face for a while then that resides and you end up pain free with numbness in your top and bottom lip, but its definately worth it. Jill

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    • Posted

      Hi Jill,I would very like to find out which neurology department you went to in Oxford and the name of the consultant .....ie if the moderator allows this info......thanks,wanganui.
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    • Posted

      Dear Wanganui,

      It was John Racliffe hosptial in oxford, The surgeons name is Mr Richard Stacey in Neurology, You will need to be referred by a doctor or dentist thou. good luck, Jill

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  • Posted

    I agree, you must push to see a neurologist. Also some teaching hospitals run a Facial Pain service (e.g King's or Eastman dental schools in London). I pushed my GP for referral and finally someone understood what was wrong. You cannot see pain on any Xray, MRI or CT scan. (Acupuncture didn't really help me). Very best of luck to you.
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  • Posted

    Hi, Marie first of all I would say I was diagnosed with TN 15 years ago. At the age of 29. Before I was diagnosed. I went to the dentist 5 times, and each time had a root canal done on a different tooth, because my dentist was so so sure it was a nerve on the tooth having the root canal. After killing 5 nerves and hundreds of dollars later, he sits me down and tells me to see a neurologist, cause he thinks I have TN. I made a appt. with my primary doctor who referred me out to Barrows Neorology clinic, the best in AZ. Thank the lord, after 3 years of pain, meds(Gabepentin 1200mg 3 times daily) and a serious allergy to tegretol.) I was in so much excruciating pain, all day, every 4 min. I wanted to die. I sat like a zombie on my bed, I couldn't touch my face, my kids couldn't hug me, I no longer wanted to live. I seen Dr. Shapiro and Dr. Shetters at Barrows, who told me I was too young to have TN. They said it was rare for someone as young as me to have it. But, I did. I was advised of all my options. Gamma knife, tic injections, MVD and several others. I chose MVD, without hesitation. It was the best choice for me. This was on my right side of my face, around my mouth and nose. The surgery I had, had a higher percentage of being cured, I just hit my 15th anniversary mark, no pain but, I now have been diagnosed with TN on my left side, even more rare for someone to get it on both sides of the face. I'm back at Dr. Shetter's office and I'm scheduled to have surgery in 9 days. MVD again. My pain right now are slight triggers, just the beginning of TN. But, I can have 5 to 30 triggers a day, depending on the day. I have kept a daily journal, I'm trying to figure out what brings the shocks to trigger more, I do know that keeping a clean mouth helps, brushing your teeth often and gargling with mouthwash alot everyday, despite the pain, helps. I pray you get diagnosed soon, and please remember, with the right doctor, one who is experienced with TN, you will find best option, that is right for you. Feel free to reach out to me, if you have any questions, unfortunately I have been with this excruciating illness twice. I'm not a doctor, but, I know what your going through, I will keep you in my prayers, God Bless.
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  • Posted

    Hi, I don't really know why but symptoms you describe - which can each be a diagnosis in their own right (idiopathic trigeminal neuralgia, chronic meningitis, multiple scleriosis all match) - are shaped and weighted and fringed in such a way that you appear to be describing Lyme's disease. As someone with Lyme's disease would. I was actually checking for something else and a few hours ago knew almost nothing about Lyme's.

    I admit I'm afraid to post this and send you painfully in the wrong direction but I am compelled to mention this. 

    Sincerely with wishes for your wellness  x

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