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NUTMEG1576's Photo NUTMEG1576 Posts: 10
1/7/14 1:26 P

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Hi Jennifer, I too have TN. What a horrible disease that takes over our lives. Right now I am 2400mg Gabapentin (and very high and loopey most of the time) but the pain is managed. I have been struggling with this for 3 years, and also live in fear of triggering the pain. I dont think there are many neurologists out there who know exactly what they are dealing with. My biggest suggetion would be to get the book Striking Back: The Trigeminal Neuralgia Handbook on amazon, read it, study it, flag pages, take notes and go to your doctors armed. Take control, thats the main thing. You can't control the pain, but you can control what's done about it. Do not listen to what they say and accept it becuase they are a doctor. Know what you need to make you feel better, and go to one doctor after another until you get it. Completely understand feeling lonely, you are not alone. Another place to gather to talk with others is http://www.livingwithtn.org/ This is a great place for resources, and you will find some great people to talk to when your up at 3:00 in the morning with your face "alive"! As for weight loss, it is hard, because the meds make you bloat and gain, but aim for healthy and not necessarily skinny! Good luck and feel free to write to me whenever you feel like it!

SHELLYBELLY47 SparkPoints: (143)
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1/6/14 9:19 P

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I am so sorry to hear that you are dealing with this. My husband has/had trigeminal neuralgia. He dealt with the pain for 10 years before having surgery. He had the type of surgery where they went in by his brain stem and placed a balloon/pillow type of thing in there, thus stopping the nerve's capacity to inflict any more pain.
At times, he will feel a tightening, like he is going to have the pain again, but he doesn't.
Can you switch doctors to a more sympathetic one that takes you much more seriously?
Also, please private reply me if you would like my or his email or text information.
I didn't go through it myself, but being married to my husband going through it was pretty horrible.
You are in my thoughts.




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1/6/14 6:50 P

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I dont suffer from this but just researched as i had never heard of this. my goodness, i am so sorry. ((hugs)) hope you find some relief soon.

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1/6/14 1:40 P

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I was wondering if anyone else out there suffers from this condition. I am really struggling with this. I'm not asking for any medical advice. I've been to plenty of doctors. The pain is really taking its toll on me emotionally and medications are difficult with side effects. My neurologist seems to be in denial about how much pain I am in, and my gp has resorted to giving me morphine to deal with pain. It seems to take for ever to access MRIs and to get results and referrals to specialists. What has been your approach to exercising? I live in constant fear of setting off the pain. Anything work for you? This pain is so isolating and leaves me so lonely.

Jennifer



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