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Thread: Newbie

  1. #1

    Default Newbie


    I am new to this forum. Please forgive any grammar problems. I usually am very good at writing. I have been having a VERY hard time with concentration. I was diagnosed with Trigeminal Neuralgia on December 24th (Merry Christmas for me). I was in the emergency room and they told me. Had an MRI with imaging. Don't know what they saw. I had been doctoring with my MD for a few months as more and more things went wrong with my health. (I have never been very healthy and I have a lot of diagnosed diseases - I doctor with the Mayo Clinic for the really hard to fix problems.) I have been clinically dead once and have been near death three other times. (The last time was four years ago - I had a ruptured ovarian cyst and extensive internal bleeding, and much more internal damage - was given a blood transfusion -- I lost over 1/3 of my blood volume. I was in the hospital for six days.)

    I wrote the above just to give someone a small sampling of what I have been through and now to find out the I have TN is just too much to bear. I'm tired of fighting for my life, I'm tired of being in constant pain. (Doc. gave me Keppra for pain of TN)

    Please if there is anyone who can help me with my pain or has good advice to help me through this, please respond.

    Also, every year my husband and I have gone on vacation to get away from the winter weather, but now we can't because of me. I so very much look forward to our winter reprieve and now feel like such a failure.

    I can't even get out to visit our children and I don't like for them to see me in such a state. They have seen me sick or hurt for their entire lives. It just isn't right.

    Sorry, I needed to write my feelings. I just am so tired of trying to pretend that everything is alright. I just want to be well.

    Thank you for "listening".

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  3. #2
    Community Member dbobsnodgrass's Avatar
    Join Date
    Mar 2007
    Manchester, NH


    Hi apelo,

    Hope the Keppra works, there are other medications, too.

    More MRI's and scans, whatever it takes, as this writer has found the surgical interventions can be devastating.

    My Best to You and Yours, bob
    Nothing new is going to happen yesterday.

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  5. #3

    Default more questions

    Thank you Bob,

    I have been having some difficult days, but they are getting better. I am up to 1000mg of Keppra a day and still have some "break through" pain, however, I'm afraid to go up. I've read so much about medicine that stops working, that it makes me fearful to have to go up or change medicine, for I do not want to have any type of surgery.

    Bob, which surgeries did you have? Did you have problems with them? How do you cope through your day?

    Does anyone have any suggestions as to exercise or diet? I'm also eating a Very low fat diet of 10mg of saturated fat per day. I saw that a low fat diet might help. I've been on it for over a week. I really hope it helps.

    Does anyone know how to approach children with issues of medical problems? I've been so sickly for most of my life and it scares me that my children feel as if they have to constantly worry about me. With this new condition, it's harder to hide when I'm in pain.
    Any suggestions?

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  7. #4
    Community Member dbobsnodgrass's Avatar
    Join Date
    Mar 2007
    Manchester, NH


    My pleasure apelo,

    I was on lunch break, happy, healthy, and employed as an LNA at a nursing home, when on 01/15/07 at about 5:43 PM, I took a bite of a sandwich...

    Dentist (speculated Bells Palsy) - Oral Surgeon - Neurologist - Neurosurgeon(s), see also; Medical Specialist Friends;)

    I have had marvelous and caring healthcare professionals, from my local Elliot Health System, to Massachusetts General and Dartmouth Hitchcock Medical Center.

    Adverse reaction (Toxic Epidermal Necrolysis) to Carbatrol gifted me with lifelong skin care precautions, the Ativan reaction left me splotchy tongue, oral lichen planus.

    Trigeminal Neuralgia has brought me many unique experiences (add all emoticons)! Trigeminal Neuralgia (TN1) has removed family, friends, work relationships and many parts of the essence of Bob.

    Perhaps, in my case, TN1 is part of the natural aging process, an inherited genetic disorder. When I said to my Neurologist, "This isn't funny anymore" - [after all the failed procedures, including the original 7-pad MVD and two Cyberknives] - he said, "It's only been funny to you", and his abstract was that in the waiting room, to my left was someone with MS, to my right was some with MD.

    I am not a candidate for any further surgical procedures, including deep brain simulators (DBS). Trying to stay out of Zombie-Ville, as my many adverse reactions to Big Pharma's answers, help a little with that.

    Currently taking Neurontin 1,200mg, Baclofen 40mg, Keppra 3,000mg, Vitamin D 3,000iu.

    Still have a "toothache", but it's okay, because People tell me I look good.

    Gratefully Yours, bob
    Nothing new is going to happen yesterday.

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  9. #5
    Last edited by Moderator #7; 03-29-2017 at 08:00 AM. Reason: No links allowed as a "new member", only after 11th post, but I will let this remain :)

  10. #6


    Hi everyone, nice to meet all of you :)

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