Neurontin - Trigeminal Neuraliga - For Woodstock

Discussion in 'Fibromyalgia Main Forum' started by Krisanna, May 16, 2004.

  1. Krisanna

    Krisanna New Member

    Hi Woodstock,

    I hope you don't mind. I was reading that you had Trigeminal Neuralgia. I too have Trigeminal Neuralgia but am currently in remission. ( It is probably too much to hope that I am one of the rare few that have Spontaneous Recovery). I wanted to ask you a few questions about your Neuralgia. How long have you had it? Which branch(s) of the nerve are affected? One or both sides? Do you also get spontaneous remission? What other drugs have you tried besides Neurontin?
    I first got mine in the fall of 1999. I had 6 months of warning signals where a small portion on the top of my head would pulse under the skin ( the auricular temporal branch of the nerve, coming off the mandibular portion). Then I had 3 months of what I call precursor symptoms, but what I believe medically is called pretrigeminal attacks. These were very hard, pressing, crushing pains that were in the area of my cheekbone. They were for approx. 1 hr at a time several times per day and night and were at a pain level of about 8. Finally I went and ruled out my tooh (typical and lucky I didn't tell the entire truth about the pain or I probably would have had a root canal), was prescribed antibiotics to rule out sinusitis (also typical), and was referred to an oral facial pain clinic. On the weekend before I was due to go to the clinic I bit into a hard tortilla chip and I got a lancing red hot needle of pain through my tooth, as though I had bitten into a needle and cracked my tooth. Then of course the remaining searing hot needle of pain from the root of the nerve to the ending. It affected all three of my branches on the right side. The searing pain lasted approx. 1 minute each time. These pains as you well know are off the pain scale - I would rate them 100. Then after, I had burning stinging sensations that lasted about 1/2 hour.I think this is called Atypical Trigeminal Neuralgia. My attacks occured 20 times per day for 4 days, then tapered slowly to 10 times then 5 times and finally none, over approx. 3 weeks. My triggers were: eating, talking, lying down with my occiptal area pressing on something, breezes against my face and hot or cold in my mouth. For another 6 months I had all the precursor symptoms plus a sensation of a wire toothbrush being slowly dragged over the top of my skull in the same portion of the nerve. I only had one attack since then - in 200. I have had several episodes of my precursor symptoms starting up, so I know it is still there, but I have not had the true searing, trigeminal attack since.
    Anyhow, I am taking 400 mg of Neurontin for my Chronic Fatigue and now know that this drug would be okay for me to take for the Trigeminal if it comes back full force. I really would not want to take some of the older drugs that were being used when I first got the neuraliga i.e. Oxycarbemazipine or Dilatin. Sorry to be long winded but I would really like to hear your story so I know what you have gone through as well as medications you have used. Thanks.
  2. WoodstocksMusic

    WoodstocksMusic New Member

    Wow, The board moves so fast....I was searching for something I had posted because I needed a date (time stamp for my diary)

    Your post could have been written by me instead of you!

    I did not have the spontaneous recovery you described and after 4 hours of the searing, off the scale pain level I knew I was in serious trouble whatever it was....dentist first and she sent me directly to my family doc...he knew immediately and prescribed the Neurontin for me... I took levels of Hydorcodone(lorcet plus) that would kill a horse and all it did was put me in a la la sorta place that muted the pain intensity (I could have cared less about the pain when the pain meds were in full force) But I was taking 40mg of lorcet and every 3 hours they would wear off and I would be in tears ready to jerk my hair out again.

    I forget the 3 branches that can be effected but mine was the branch that ends just under the nose and over the upper lip area...mine was only on one side (left) and still to this day I can feel the precursors you talk about...it hurts to touch it but not unbearably...it just reminds me of the hell I lived through for about 2 weeks!