My wife recently diagnosed as trigeminal neuralgia

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I married my wife about 2.5 years ago. We have such a happy family and trying to have kids until a week ago, sae felt a horrible pain in her right side of face when we went to bed. Initially she thought it was a bad tooth so she flossed and used mouth wash. The pain seemed to go away every time she stands up. So she spent the night in our recliner. Second day the pain is still there so she went into dentist, X-ray showed nothing, dental specialist, ER, then we went to see a neurologist in town three days later when she found out the pain. The pain was so bad that kept her awake all night and never went away. Most of the time, cold water in her mouth will dampen the pain or relived from the pain for 10-20 seconds. Sometimes the cold water doesn't help either. We told these to the neurologist and he said it could be trigeminal neuralgia, so he gave my wife some antiseizure medicine and ordered MRI and MRA. She started taking medicine on Thursday night and until today, which is Sunday, she had two relatively longer sleep (>5 hours). Her pain is like never goes away which keeps her all night up. She has to regularly drink cold water to sooth is down to she can doze off for about 2 mins and woke up by pain again. It is torture for her and to watch the love of your life being tortured. She is only 35 and our family barely started and now future is unknown to us. We couldn't find triggers since the pain is like constant until drinking cold water. Hot food seems to set it off or noise makes the pain worse. I am so afraid of this is TN2. I was looking at MVD and It seems that MVD is not effective to TN2. It puts me to desperate. Sometimes I wish time will go back. We used to hike, run, travel, marathon and do a lot of outdoor activities and now seeing her in pain and curling in bed for a week makes my heart break into pieces. Last night she had a little window of pain free, she rushed to hug me and snuggle me saying it is so nice to snuggle without pain. And it breaks my heart. I think I am still in denial and so is she. It struck us without any warning. This morning she said one of her wisdom tooth hurts and we both so wish that it is the reason. Now she is asleep after the antiseizure pills. I found this website and hope to get more support. Thank you. We are from Missouri, US.

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  • Posted

    I'm sorry that your family is going through this. I just wanted to let you both know about the anti seizure medicine that I am on. It helps a great deal. I take 1200 mg gabapentin 3 times a day and 300mg of oxcarbazapine 2x a day. I also at one time had a nerve block procedure that was a miracle for me. I hope something helps her.

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    • Posted

      Hi jinjin

      I just read your message and my heart goes out to you. But please don't despair. I was in the same awful pain as your wife only 6 months ago. I saw a neurologist who started me on Tegretol and that has got me out of pain at least. I'm now thinking about having gamma knife or similar surgery.

      You need to see a neurologist who has experience and knowledge of Trigeminal Neuralgia. I know you're based in the US but there are plenty of Americans on this forum who can no doubt recommend a neurologist in your state or another nearby.

      You should also join the Trigeminal Neuralgia association. (Trigeminal Neuralgia. Org). They have one in the U.K. and also probably a US one as well. They are a fantastic source of help and information and there's a forum where you can discuss with others. There's a helpline run by volunteers which is great too.

      You just need to get the right advice and hopefully the meds will at least get your wife out of pain. Then everyone can think a bit more calmly. It's impossible to think rationally when you're in loads of pain - I know, I've been there.

      But the drugs will hopefully help your wife in the first instance. I couldn't eat, drink or talk (a blessing for some) st the start and I'm kind of ok now and right now, no one would even know there's anything wrong.

      I was on 900mg of Tegretol at my worst and now I'm down to 200mg. I'm starting on lamotrigine and phasing out the Tegretol which can have side effects.

      Please don't despair. It will be ok. Let me know how things progress.

      Thinking of you and your family.

      Sasha

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    • Posted

      Thank you for sharing your stories Sasha. She has been in no pain for past 3 days due to medicine. I so wish it was just a fluke. We are going to MRI today. Keep our finger crossed ...
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    • Posted

      I'm really pleased that your wife is out of pain at least. Thank goodness for that. Good luck with the MRI - I hope you get some resolution from the results.

      Best wishes

      Sasha

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