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Newbie w/TN and ON Neuralgias -- need help please

Discussion in 'General Discussion Subforum' started by daisydoodle11, May 11, 2019.

  1. daisydoodle11

    daisydoodle11 Newcomer

    It’s my 46th Birthday today. And I’ve been spending it mostly in bed. This saddens me to no end.

    I have been dealing with Atypical Trigeminal Neuralgia and Occipital Neuralgia for a year now. This comes with extreme chronic pain ranging anywhere from an 8 to 9 on bad days to a 6 with medication. (I take Gabapentin and Lyrica.) Recently, the nerve pain seems to be going into my feet and legs.

    Pre all of this happening I was a yoga teacher for ten years. (Now, it’s a wonder if I can walk 20 minutes. Now I’m having problems with balance and I’m experiencing vertigo, which I have heard is common with occipital neuralgia.)

    I have been through three neurologists. I have had the MRI to rule out a brain tumor. They have also ruled out MS. I juice every day and I’m great with supplements.

    The trigeminal neuralgia came on about a week after a crown was placed over a root canal. Then the pain spread to the jaw and areas around the ear…and then it spread to the other side…so now I have it bilaterally. (About a month later the occipital neuralgia came on right after doing a headstand. I know, pretty stupid of me.) I’ve since had an X-ray of the spine and they say everything is fine.

    So now that I’ve given a little background, let me get to why I’m here.

    I guess I want to really believe this is TMS-related, because I want to believe that I can heal this without surgical intervention — or going a lifetime with pain pills.

    (But then the pain hits, and I just think, the pain is really ingrained and it feels so structurally awful — like jabs and stings along my occipital nerves. Not to mention the pressure in my teeth.)

    (I have also read Steve O’s book and highlighted where he talks about not talking about symptoms and staying away from those who do. So I’m questioning the amount of time I spend on the facebook message boards. Which is quite a lot because I’m trying to find anything that might help, including the names of neurologists who might specialize in this not-very-well-know disorder.)

    Even from a nurse I hear this disorder is ‘very hard to manage.’

    Last night I wanted to get in my kitchen and cook up dinner like I used to. I set up this mini goal. My vertigo was spinning out of control. But I just said do this because you are enjoying this and you have so little joy right now with the pain…then go on a walk outside with your husband. So I did. As we were walking everything was spinning and I was so nauseous. I clung to him because I felt like I had jelly legs. (So, now I have that memory, which seems so awfully horrible.)

    Today I’m in bed because I’m feeling like any activity will cause the vertigo. In fact, I know it will.

    I know the power of the mind…but for the past few months I’ve been thinking just accept this as your life. Your life has to be in bed because any activity spurs up the vertigo. And heck…Bad things happen to good people. Just accept it.

    This is so hard for me to accept. I have always been a go-getter, achiever, diplomat, etc.

    At times I have tried to look for people with my symptoms. That is when I found this wiki, and I found Plum’s posts about her ATN. Thank God for PLUM!!

    She gave me hope that maybe I can heal myself. (But then when the pain hits I hear that voice that says, oh no, she can but you can’t, your case is way more severe than hers. There’s no way.)

    I guess I’m writing today as a plea for help. For someone on this board to reach out and tell me something that will provide some hope that I can heal. And this is all just my brain spinning out of control. (That yes, there was a structural issue that happened, but that cleared up, and now I just have to break the chronic pain cycle.)

    Ok, that’s a long enough post. Thank you for indulging me. I really really appreciate your time, and any help.

    all the best!
  2. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi Danielle,

    Thanks for introducing yourself and Welcome!

    I am not a physician, and few physicians post here, but we can offer help. The medical side you've handled, and probably will continue to handle on your own, eliminating your doubts with tests.

    Having a procedure or initial symptom often does kick off chronic symptoms, as you understand. Yes, the cycle can be broken.

    It is important to list the reassuring medical reasons you don't have a physical problem and read and contemplate them every day. This is part of your treatment.

    Resigning yourself to live in bed is not the answer. Yet, worrying less about symptoms is part of the answer. Staying off boards and groups is extremely important.

    You have many indications of mind-body stuff: bilateral, increasing symptoms, vertigo.

    We have the excellent Pain Recovery Program linked above and also the Structured Educational Program. Also, Howard Schubiner's workbook and meditations "Unlearn Your Pain" is an excellent support.

    Coming here, reading success stories, treating yourself as a TMS sufferer ----all this puts you way ahead of those folks who can't or won't leave the medical health message boards, people who may never understand what you're contemplating now. So you're already well on your way.

    Read success stories subforum every day, and if the case isn't like yours, substitute your symptoms for theirs. It is all the same. Everyone on that subforum had hopeless times too, and now they are better!

    Andy B
    Last edited by a moderator: May 11, 2019
  3. SME61

    SME61 Peer Supporter

    Hello Danielle
    I once had severe trigimenial neuralgia for 7 months after having an ear operation. The pain was terrible I could not focus and could barely work. It consumed my life. I was told by several doctors that there was nothing they could do and I might have to live with it the rest of my life! I was devastated at the time. Then a physician suggested I try myofascial release therapy and after 6 months of therapy once a week the pain lessened and finally went away. Don’t give up hope!
    Your initial symptoms sound quite familiar. Try this therapy, you have nothing to lose!

    Looking forward to hearing about your positive results.

    HattieNC likes this.
  4. HattieNC

    HattieNC Well known member


    I haven't experienced Trigeminal Neuralgia but I have dealt with TMJ (which was absolutely agonizing and all consuming). At the time, I didn't know about TMS. Since learning about TMS, I make it a daily practice to relax my jaw as often as possible. Guided meditations are very helpful with this. Perhaps this would help you also? I thought I was doomed to a lifetime of pain, but I rarely even think about TMJ anymore. Except to be mindful about relaxing the jaw muscles and to be grateful that it's no longer a part of my story.

    Plum's posts offer great wisdom and hope in dealing with Trigeminal Neuralgia. Reread them to strengthen your hope and belief that you will recover. Perhaps print them out and have them beside your bed to reach for when you need reinforcement. I have posts saved on my desktop at work that I read over and over whenever a symptom imperative strikes.

    If you haven't watched any of Nichole Sach's YouTube videos, I encourage you to do so. You can do this while lying down. She also has great free podcasts you can listen to. Nicole has a new podcast with Katelyn Michals that I listened to this morning. Even though I've been doing this process for several years, her insights always amaze me.

    I was deeply saddened to read that you spent your birthday in bed. You are still a young woman with many wonderful and healthy years ahead of you. I believe this in my heart.

    https://www.katelynmichals.org/episode-7-nicole-sachs-lcsw-and-the-cure-for-chronic-pain/ (Episode 7 – Nicole Sachs, LCSW and the Cure for Chronic Pain)
  5. daisydoodle11

    daisydoodle11 Newcomer

    Thank you all for your wonderful encouragement and support. God Bless you all. All the information here I value so much. all love, d.

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