I have suffered from Bilateral Trigeminal neuralgia and here is my story to give hope to others

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I started with facial pains in 2009 and was diagnosed with right sided Trigeminal Neuralia in 2010 by a brilliant neurologist @ Southampton hospital.After lots of different medications with some that did not agree with me( some being much too strong and affected the way that i walked, talked, slept,thought and generally made me feel as if I was just exixiting and not living my life).the only medication that I could take was Tegratol and the more painful and often attacks the only answert was to up yhe medication until it came to a point that my body could not cope with the high dosage that I was on..I was constantly drowsey, dizzy unable to think straight and would often feel that I was in a trance for the best part of the day..The hospital at one time thought that I had had a mini stroke as I was unable to walk in a straight line ( I was gearing to the right side).I was always at the doctors in tears with the pain and was often said the only advise they could give me was to up my tablet and I could take some Neurofen with tegratola as well.

Some days I could not wash my hair, wipe my face, cleaning my teeth sometimes started the pain...BUT going outside in the wind was thee main trigger for me and also a draught could start this as well.

After being refered to Southampton hospital I had CT scans MRI scans and was eventually offered an operation in May 2011 the operation being Microvascular Decompression of the right Trigeminal Nerve.At the time of the operation the surgeon saw that the nerve wasnt (tapping) as I call it so he cut the nerve in my face leading across to my mouth so the compression of these two nerves would never (hopefully) tap together again.After the operation I woke feeling the worse that I had ever felt, being sick for the best part of the next 24 hours and this can be one of the side effects that I never knew.After about 48 hours the sickness subsided and that was with anti sickness medication I felt much better.My first reaction was to see how much hair had been shaved from my head .I was impressed that it was only a small patch behind my ear and it would never show.I left the hospital about 4 days later with the mobile phone number of the Trigeminal nurse who is on hand for the patients and had my stitches taken out after 10 days and I hoped that I could finally reduced my medication and eventually come off them altogether.

As i was reducing the medication over a few months I began to have pains on the other side (yep the left side) so I spoke with my Gp and spoke with the Trigeminal nurse I was to be seen by my Consultant and after a few scan again it was noted that I also had Trigeminal neuralgia on that side too. I am the 1% who have bilateral neuralgia.I had to increase my medication again and the same as before my body reacted so I was offered another operating on the nerve.As my mouth was still numb on the right side my consultant was a bit reluctant to do the same procedure as he did not want to leave me with a totally numb mouth..Please note that after the operating on my right side thia procedure will leave you with a numb, tingling mouth and a feeling that "spiders" are creeping over that area.Also I had to drink from a straw as was aware that I was burning my mouth with hot drinks.Evenyually this does wear off and now I have no tingling but I do have more feelings in my mouth and can now feel pain if I bite my gums LOL.

The second operation that I received was in Glycerol Injection into the nerve directly into the Trigeminal nerve behind my ear.I was admitted as a day patient, my operation was also @ Southampton hospital with the same consultant.I was to starve from mid night , operating was @ 9.30 and I was taken to the opearting theatre.I was to remain awke whilst they lined up the xray equipment and then I would be sent to sleep whilst they injected the needle with the glycerol from the side of my mouth/check and into my nerve when they then woke me to make sure I could feel it as it hasa to be in the correct place /position.I can honestly say now I can not remember waking up (perhaps briefly).I was then taken to the recovery room where I had to sit in an upright position to make sure the glycerol set correctly.I had no sickness this time and felt well in myself.I stayed in hospital until late afternoon then could come home.I was advised about my medication to reduce again and was given painkillers for if I need them.

I too had tingling and numbness in my mouth, tongue and gums.My ear is very sensitive to touch, either with a towel, cottonbud ! or water but no direct pain as I have had in the past.I started to reduce my medication my 100mg a week and am still at present on 200mg Tegratol and I have not had any Neuralgia pains on this side since I had this procedure.I do get the occasional stabbing pain at the sight of the injection entrance but at the moment I can cope with that.I found this procedure to be worse than the first operation with after pains and I have decided that I would never want this procedure again as my consultant has told me that this is not a cure for TG but a procedure to reduce the pain whicch can help for about 12-18 months.

My consultant has told me that I will probably need a Microvascular decompression on the left side but at present I am very happy and feel that I can cope with the reduction in my medication and I amhoping to reduce them to even less or perhaps be able to come off them altogether.I feel happier in myself now as not got a Tegratol head anymore and life seems brighter at present.

I want to let fellow sufferers that things can get better and I know it can seem like an awlful long wait to see a specialist and feel then that treatment is working...but it does and it can.

I hope that this can help at least one person( hopefully more).  I will feel then that my words have encouraged sufferers to "hang on" and you will one day feel as well as me at present..But next year I have this feeling that I will be seeing my consultant again and that will be the last operation I have to have and I can say GOODBYE TRIGEMINAL NEURALGIA....smile 

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7 Replies

  • Posted

    Did it start off as little shocks in the jaw? 
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    • Posted

      my heart just sank, i have had it since 2011 but i only get little shocking around the same time every year for a couple of days and then it goes away until the next year. i am scared  it would get worse
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    • Posted

      My started with the shocks at first I thought perhaps toothache as it was on my tooth line..But it wasnt like an ache that you get with teeth this was a stabbing pain and quite often it left me with a dull ache.I isaw the doctor the next day and he gave me Tegratol tablets to start taking ..I also found when I was havind an attack that it never hurt when I was sleeping ie never woke me up...But as soon as I woke up it was there again.My pains were bad in the Winter months as the cold started it off and I dreaded simple things like walking my dog in the cold..Everytime I had an attacke it seem to come back with avangance but I could go months without any symptoms as long as I took my medication..R u on medication at the moment and have you seen a specialist.?
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