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Support and Understanding for those with TN

Posted , 9 users are following.

brock1998
brock1998

I would like to start off by saying I understand what you are going through and I want to be here to support anyone dealing with this terrible disorder. I had TN from 2011 until May 5th 2016. I'm sure I had it prior to 2011 but was not aware of what TN even was at the time. In May 2016 I had microvascular decompression surgery under the care of Dr. John Sampson at Duke Medical Center in Durham, NC. In Oct 2015 prior to being diagnosed I had a "Job" moment with GOD in my kitchen, I was looking for the answers of "why me" "why this" "why can't I feel normal again" and lots of other emotions, well in Oct 2017 I found my answer. I had to have it and go through it to understand what others are going through and support and help those with TN. If I can help please let me know and I will be more than happy too. I have an amazing story of just how powerful GOD is today just like HE was over 2000 years ago and my story is from this terrible disorder. If you are dealing with TN and reading this post right now, I'm truly sorry but I also want you to know "THERE IS HOPE" do not let it convince you that there's not. 

1 like, 31 replies

31 Replies

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  • ester69209
    ester69209 brock1998

    Posted

    Hi,

    I am new to blogs but I thought I would give this a try. I was diagnosed with TN last year after 5 years of being misdiagnosed. My meds help a lot . They have lessened the severe sharp pains. I call them ongoing electric shocks, but I still have what I call moving brain fog. It is like pulsing in my gums and head. Even with the meds I have a hard time focusing and I can loose a thought in mid sentence. It has improved with meds as before I couldn't complete a sentence. I wanted to know if anyone else have my symptoms and if so what they are doing to help it. Thank you!

    • vicki78970
      vicki78970 ester69209

      Posted

      So sorry Ester for your pain. I also have suffered from this & have experienced the same as you. The meds make it difficult to focus & makes my legs weak. .

      The way I someone survived is taking 800 mg of Turmeric in the morning & Carbamazapine 400 mg at night.

      For some reason the Turmeric didn't work at night. Word of caution, don't over use or it won't work any more.

      You can buy Turmeric (It's a spice, all natural, no side effects,

      I have since took some advice from this web site & had acupuncture. After a few sessions the pain was gone!

      Insurance usually doesn't cover this. But the plus is THE PAIN IS GONE! It was less then $300 total. 

      I pray you get relief soon! God bless you!

    • geoffreyPHN
      geoffreyPHN ester69209

      Posted

      ya I agree with vicki, I had the same issues turmeric and magnesium helped. GABA, and amatryptalyene were the worst for it.

      id like to say it gets easier over time, however I found reducing the meds or taking them at a time where I don’t need to use my brain helped.

    • ester69209
      ester69209 vicki78970

      Posted

      Thank you Vicki for your advise and understanding. I will try the turmeric. I have used it in carrot juice but not that much. I will start looking into acupuncture. Glad it worked for you. Your prayers are much appreciated. Many Blessings to you.
    • vicki78970
      vicki78970 ester69209

      Posted

      Forgot to tell you, Tomato's (foods with acid ), fruits (natural sugar) & some vegetables like carrots  (natural sugar) or anything containing sugar use elevate the pain. I ate noodles & oatmeal for 1 1/2 years. No juice, basically a bland diet. Now I can eat normal again praise the Lord! I pray you get that relief also! Have a great week end & God bless you!!!cheesygrin

  • Atlantan
    Atlantan brock1998

    Posted

    I'm thinking to try Turmeric and Alpha-Lipoic Acid (ALA) supplements for facial nerve pain.  Has anyone tried this combination?

  • vicki78970
    vicki78970 brock1998

    Posted

    I use to take both of them. I am still taking The  Turmeric. So afraid of getting the pain back. Turmeric 800 mg take the pain away for up to 14 hours. It didn't work for me at night though. That's why I tried the acupuncture. 

    I'm curious, did you see an acupuncturist that is also a chiropractor? That kind of acupuncturist gets his title from a 60 hour weekend course. Waste of time seeing them. Ask him or her if they have had good results or treated TN before. If so what were the results.

    The needles were placed on my right side of my lower jaw, top jaw, forehead, back of my right hands and also t

    the back of my right wrist. He focused on were the pain was. After 2 treatments I started seeing results.

    It ha nothing to do with the back. I sure hope you get results soon!

    • Atlantan
      Atlantan vicki78970

      Posted

      Hi Vicki,

      Thank you for your reply.  My acupuncturist is not a chiropractor as well.  I think they are good, but they're taking it slow (a bit too slow in my opinion).  I may find a different acupuncturist if the next treatment is also ineffective.

      I've always heard good things about Turmeric and will try it out to see how it works on me. 

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