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trigeminal neuralgia, seriously cant cope anymore, tips please

Posted , 86 users are following.

laura19209
laura19209

So I'm 24 and since Friday have been in agony, sunday the doctor said it was trigeminal neuralgia, after reading info on it, as I had never heard of it, its left me pretty depressed, I can't face doing any house hold chores, I've literally just lay on sofa, with my scarf wrapped round my head, feel like little red ridding hood! Not good when I have a 4 And 2 year old to look after, is there any tips on getting through this? I'll be honest early hours Sunday when it felt like my face was being stabbed with electric rods, I considerd taking all the tramadol I had, I was prepared to take that risk just to feel no pain, anyway I didn't the thought of the kids stopped me, I'm taking that anti convulseant tablets and so far provides some relive, although I feel rotten for taking them, is there any tips for getting through this? Since Friday its as though its ruled my life, would rather go through labour than this, never ever known a pain like this.

7 likes, 208 replies

208 Replies

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  • vicki78970
    vicki78970 laura19209

    Posted

    Found this on you tube. Dr. Eric Bird.

    If the pain is on the left side of your face using your fingers tap on the left side of your face in the same spot.

    It stopped my pain.

    Something so easy!

  • midgham
    midgham laura19209

    Posted

    Dear Laura, I have had this dreadful condition for approx seven years and was put on Amitriptyline and that did seem to work quite well. I found out quite by accident that dispersible aspirin does seem to help. I take three dissolved in water once every four hours if needed. I do appreciate that not everyone can tolerate aspirin but let's hope you reach remission soon. I had been pain free for almost a year. Best of luck

  • ernestine_93088
    ernestine_93088 laura19209

    Posted

    Acuputure provided relieve for me for about a year, then it stop working. I suggest for you to find a pain Dr. who deals with this crazy condition. I found one in our area that deals with TN and they have different procedures to deal with the pain, not just meds.  I am allergic to some of the meds. 
  • al07085
    al07085 laura19209

    Posted

    Sorry to hear about your neuralgia, I have been suffering with it off and on for about ten years. 5 years ago my doctor sent me for a radiation treatment to shrink the trigeminl nerve. It was about 40 percent affective. Did not cure it. But the effectiveness varies among different people . Also I’m on 900mg 3 x a day of gabbapentin. Sometimes I’m free of pain up to a month. When my pain comes back it’s not as bad as it used to be but it’s still bad. My doctor told me that you can have the radiation treatment twice.Im thinking about doing it again because the last 10 days I’ve been suffering. The doctor told me that If the radiation does not work there is some kind of brain surgery they can due but it’s can be dangerous and it’s about 70 percent affective. Any I hope you find your answer to alleviate your pain...Good luck.
    • vicki78970
      vicki78970 al07085

      Posted

      Al I'm so sorry about your pain! I too have been suffering for a while & have tried a number of thing.

      The natural pain relief (No side effects) ia Turmeric I take 800 mg in the am & I am usually pain free for 12-14 hours. Then at night I take 1/2-1 tablet of Carbamzapine. I sleep through the side effects. 

      Also I've hears & tried  Acupuncture (temper

    • colleen90451
      colleen90451 vicki78970

      Posted

      I suffered with TN for aboutv

      4 months last year and I had the MVD surgery on 7/4/17 and I have been pain free ever since.... Thank u God

    • jonathan04350
      jonathan04350 colleen90451

      Posted

      Hi Colleen, I'm interested in your comment, what is MVD surgery and where did you get it? I am taking Carbamazapine 400mgs a day but don't like the side effects and would prefer not to take long term.

    • colleen90451
      colleen90451 jonathan04350

      Posted

      Gm Jonathan, Micro Vascular Decompression is the surgery and I had it done at John's Hopkins Hospital in Baltimore, Maryland. It was a blessing from God that I had the surgery and now I have been pain free for 11 months now. It was like I got my life back and can live again, I didn't know what it was until I had an MRI. If u consider surgery it will make u happy again. The recovery was a little hard but I have no complaints so far....... Hope this helps

  • michele82354
    michele82354 laura19209

    Posted

    Hi Laura, 

    So sorry to hear that. I was diagnosed when I was 26 (I’m 29 now). I felt the same way. I thought I was going to have to quit my job and would never function again given the unbearable pain I was in. At one point I couldn’t lift my arm or move my head as the pain radiated down and messed with my nerves (thats all gone away now). It took time but it did subside. Once it decreases, you won’t feel as bad as you do now. I tried acupuncture (didn’t help) and a million other things. In the end taking the medication and time was the only thing that helped. It gets better, have hope. 

  • linda50613
    linda50613 laura19209

    Posted

    Laura, there is not answer that will help everyone.  I went from drug to drug and then was scheduled for the Gammaknife when my daughter found Dr Lim and his study of TN and excellent surgery successes.

    I wouldn't consider it until an attack that made me understand the term "suicide desease".

    I have a strong faith and God has given me five children and 19 grandkids.  I'm Mormon so called my Home Teacher for a blessing.  When they said "Amen", I knew I would come through the surgery.

    You MUST find something to hold fast to.  Something you know will be there everytime you need to grab a little help.

    I understand what you're living with and I wish I could give you something more.  One thing for sure....DON'T GIVE UP!   You can find an answer and piece.

  • Ricky1951
    Ricky1951 laura19209

    Posted

    i had the big operation last January, i forget what its called but it will leave you out of commission for a few weeks but the left side of my face is still numb, i don't complain about it coz its better then the pain, my advice would try the balloon compressions first then if pain comes back have the surgery , RICK

    • robert42630
      robert42630 Ricky1951

      Posted

      HI Ricky

      Can you tell me what is the balloom compressions

      Regards

      Robert from south africa

  • robert42630
    robert42630 laura19209

    Posted

    HI laura

    I know how your fild ,I have TN from 5 year now I been try evrthing on the planet nothing hepl to ilimite this pain. I start the pain in the middel of the chic than went up in the eye and the month the same stahe earbing pain , now all my top thooths and bottom are in pain that did to roots channelle and the pain is still there ,than half of my face become lamp (like the inection of the dentist)now I start in the ear , field very unbalance doctor said old age !!!!!!

    the best medication that help is the morningone TRAMAXAL and one LYRICA 150

    lunch time 2 paracademol at knight 1 TRAMACED and 2 PARACEDEMOL

    becarfull for cold wind heat work very well with me

    nice to meat you

    robert from south africa

    • dronnow
      dronnow robert42630

      Posted

      the operation is called "vascular decompression of the trigeminal nerve". It works in most instances. I had it done in 2014 and have been pain free. I was also very fortunate that the surgeon who operated on me was one of the two individuals that developed the proceedure. He is still active in the Massachusetts area and has patients from all over the world. Dr. Bruce Cook of the New England Neurological Associates. Before the operation, to ease the pain, I was taking 1400 mg [ 2-350 mg twice a day]of oxcarbazepine, a general neurological suppressent. It is very effective in lessening the pain, much like Gabapentin which did not agree with me. You might also consult the Facial Pain Association, www. fpa-support.org, a good resource. Keep your spirits up. As painful and unrelenting as it is, there are solutions. Be glad you live in the era of modern medicine and not 100 years ago. Also, find yourself a neurologist who is familiar with this. They're out there.

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