jump to last post 1-2 of 2 discussions (8 posts)

I kicked Trigeminal Neuralgia to the curb!

  1. My Bell profile image96
    My Bellposted 3 years ago

    I just wanted to share a personal celebration for myself. One year ago today, I had a successful MVD brain surgery for my Trigeminal Neuralgia (TN). TN is a rare, horrifically painful disorder that is nicknamed "The Suicide Disease". It feels like you are being electrocuted, jolted, and stabbed in your face time after time, day after day. Anti-seizure meds are used at very high doses to help control the pain but don't do a great job and turn you basically into a zombie. I battled with this disorder for almost a year before I went under the knife and remain both pain and med free to this day. I wanted to ask all of you that pray, to say a prayer for those who still suffer from this horrible disease. I will be publishing my story on here soon.

    1. manatita44 profile image81
      manatita44posted 3 years agoin reply to this

      Happy for you. Continue to give praise. Glory be. Peace.

    2. Jackie Lynnley profile image89
      Jackie Lynnleyposted 3 years agoin reply to this

      I am so glad you are OK and I will pray you remain in good health and can share your experience to help others. It sounds like what I have in my hands, arms and feet but I believe that is from Myelopathy. It does get quite unbearable at times so  have an idea of what you have been going through and of course know anything to do with the head and brain are so serious.
      God bless you and will be looking for your article!

    3. FlourishAnyway profile image100
      FlourishAnywayposted 3 years agoin reply to this

      I have had a temporary case of it associated with my MS and certainly empathize with you, as the numbness, tingling, buzzing, and electrical shocks on one side of my face and scalp were unbelievably intense and painfully sharp, like ice picks or 1000 razor blazes and rubbing alcohol.  I am so happy for you that you have found relief and will keep you in my deepest thoughts and well wishes for continued success.

      1. Jackie Lynnley profile image89
        Jackie Lynnleyposted 3 years agoin reply to this

        As I hear these symptoms I am really wondering if what I am experiencing is what I thought it was. I have had the electrical shock and buzzing and drawing nerve like labor pains and doctors just passed me off like I was a nut! (like zapping in the brain?) Now I hear others having the same thing makes me think I got swept under the rug for many years by no account doctors! Years of pain with not one helping me. Now they say I do have Myelopathy but these symptoms sound like maybe more than one thing going on.

        1. peeples profile image94
          peeplesposted 3 years agoin reply to this

          Jackie, where do your electric shock feelings happen? What part of your head?

  2. peeples profile image94
    peeplesposted 3 years ago

    My husband has TN. He was diagnosed at the start of 2013. It went away for a while. The Gaba was controlling it. Then out of no where it came back full force about 2 months ago. His dosage of the Gabapentin was up to 1800 mg a day. He hasn't slept through the night in a month. It seems to always kick in when he lays down. I usually end up finding him sound asleep, sitting straight up on the couch. It is awful and I hate there is nothing I can do to help him. He refuses to even consider the surgery.
    I am so glad you are better. NO ONE deserves that kind of pain. My husband's doctor said it is like having your leg cut off with no pain meds. I can't even imagine. Amazing for you! I'm sure life feels so much better!!!

    1. My Bell profile image96
      My Bellposted 3 years agoin reply to this

      So sorry to hear about your husband, Peeples. It is an awful disease to have and the pain is truly indescribable. It trumps childbirth tenfold. Please have him look into surgical options. I was terrified to have the brain surgery at first but after the extensive research I did and many visits to neurologists, pain doctors, neurosurgeons, etc. and after almost a year on those awful meds, I knew that was my best option. It was certainly a leap of faith and took a ton of courage on my part but I would have done pretty much anything to get out of the pain and meds. Dr. Ken Casey, who is a true expert with TN, did my surgery and I thank God that I found him. He wrote the book "Striking Back" that I'm sure your husband is familiar with. If he is not, have him read it. It is the best "layman's" book on everything TN and really helped me to decide what to do. My leap of faith definitely paid off and now I'm doing all that I can to pay it forward to others with TN. Thanks for your post. I'll pray for your husband.