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Longtime sufferer with TN , really bad flare up, advice needed :(

Posted , 19 users are following.

tam41
tam41

I have suffered with TN for 25 years, luckily for me, I only have flare ups every so often, maybe every three or four months lasting for around five days. However, I am in so much pain right now and don't know what to do. 

My TN started when I had all four of my wisdom teeth removed in hospital. Over the years I have tried different medications and seen a few different specialists. The problem has always been, that by the time I get an appointment with a consultant, I am out of the flare up and have no pain. I have been offered an Mvd , but I was scared and as I was in remission at the time, I said no. I have managed all these years to just accept it when I have a flare up, and just know that it will go and I will be ok.

my last flare up was quite bad, and this one I am having now is horrendous, I am taking gabapentin for a seperate medical problem, and I did think it was keeping my TN at bay as well. Yesterday I felt very uncomfortable at the base of my neck, sort of behind my ear, I felt as though something was swollen and it was sore, today I have had the very familiar TN pain, but it seems worse than ever. I have took ibuprofen, which usually works, and I also have some oramorph for my other medical problem, even this is not working. I can't eat, talk, or stand noise right now. My family want me to get the dr out or go to a and e, but I really don't see the point, I have had this for too long, I won't have surgery for it, and what can they possibly do about it!? I just need to sleep but I can't see that happening tonight, if it' gets much worse, of course I will go, what are people's experiences of this? Is it really worth a visit to a and e? Or will they just treat it as a migraine or another type of headache! I'm sorry if I have moaned a lot, I just really need some advice of people who understand. Right now, I have the lightening strikes in my head and down the side of my face, it makes me cry in pain, but crying then triggers another attack! I just wish it would hurry up and leave me alone again sad

1 like, 34 replies

34 Replies

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  • Kimble49
    Kimble49 tam41

    Posted

    Hi....don't know if yr sorted.     But I've had triygeminal neuralgia over 10 years now 3 years ago I had a operation ( decompreson)  ( my spelling is bad ).    Brain surgery  realy bad operation I lost over 2 stone I was weak as a kitten.....but it stopped the pain....I had it bad in my right side of my face...but now it's back .....I'm sick as a pig .....thought it was gone for good....I'm 67 now.....just wana tel you you need to take oxcarbazepine  I take 2 ).   300 ml an 2 ).....300 ml gabapentin......about 3 times a day.    But try 1 of each first .....I ended up in hospital once 4 years ago  I had overdosed on other tablets then. .....it was them that gave me oxcarbazepine ....my doctor had never heard of it .......if you live ny me I would giv you some I'm in Blackpool .....

  • ernestine_93088
    ernestine_93088 tam41

    Posted

    Up your gab. since you are already on it, may help. I take gab. 3 times a day, but have been a lot more before to control the pain.
  • jill55165
    jill55165 tam41

    Posted

    What an awful time your are going through tam41.  I have had the MVD, it has got rid of the TN, however I have other complications now but also have migraines on a weeky basis for over 55 years now and these as you say are two totally different things.  If you dont want the MVD there are other options which the surgeon needs to disguss with you, however a lot of people have the MVD operation and it is a great success and it gets rid of the awful TN pain.  You need some support now and I am going to Pain Management, have you thought of this?  Like I said you really need some help as this awful illness makes us feel very low - so keep going back to your doctor and get some answers.

    Keep in touch and let me know how you are getting on - its good to come on this site as you can see you are not alone in this battle and if I can offer, along with the rest of the people on here, any help I will.

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