What's trigeminal neuralgia like for you?

Posted , 7 users are following.

I'm struggling to understand this awful condition. Currently off meds and experience second relapse. Have constant pain at bridge of nose cheek and eye like intense sunburn while wearing glasses that are too small. Get shocks of pain throughout the day which stop me in my tracks. I've got the fear. Scared the really intense 'I want to die' pain will return. What's everyone else's experience?

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10 Replies

  • Posted

    Sarah,

    Why off meds ? Carbamazepine is my savior. There is no getting off it for me.

    eddie13

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  • Posted

    Hi Sarah. I'm off medication too as side effects too awful (stomach ulcer-thanks Lyrica! And hospitalised with low sodium while on tegretol). I feel exactly how you do, pain too bad to eat or talk as having intense electric shocks and I'm feeling really angry with this condition. Seems take the tablets or have the surgery. Nothing in the middle!! I'm supposed to be going to Florida Sunday for a family holiday which I'm probably going to cancel and ruin for everyone.

    Maybe try another brand of tablet or look at acupuncture? I wish I could share a cure or be more positive. Paula x

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    • Posted

      That is really sad if you have to cancel your family holiday, due to the pain. This complaint really does take over your life. I had a bad pain this morning and have been experiencing tingling around my mouth today and it really is scary. It's like I live my life on red alert incase pain strikes. You really can't understand how it rules your life until you've had it. 

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    • Posted

      I'm hoping the pain will lessen and we can go. I'm taking homeopathic remedies so fingers crossed they kick-in. Just panicking in case I get out there and the worst pain happens. Don't suppose anyone knows of a good clinic in Florida if it does?

      Hope your pain doesn't get any worse. It is just awful for all of us. Good job we have each other. x

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    • Posted

      Well, Paula,surely your doctor can do better than that or I would be looking for a new one"The worst pain in the world and no medication."Mayo Clinic would be the one.I am in Oz and that's where I'm going if my TN comes back.I have been in remission for a year thanks to acupuncture.However, can you tell me your homeopathic medication please? I am most interested. Best wishes against this dreaded disease. Maggie

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  • Posted

    My pain is relatively under control now and I want to reduce my meds as I want to feel like me again, but am so frightened of a relapse. Perhaps the only answer is to have medication on hand if the pains reappear in the hope that they will work before the wanting to die pain reoccurs. Louisa  
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  • Posted

    I think even if I had no pain, I'd still take a small amount of medication every day, so if the pain hit suddenly I could take more meds and calm it down, as opposed to starting with zero medication in my system.

    I take as much medication as it takes to dull the pain, side effects or not. I've been taking 1600mg of carbemazepine every day for 2 weeks now. I'm a zombie, but it's better than the pain.

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    • Posted

      Perhaps perhaps the small amount of meds is the best way of dealing with it, but how long do you leave it after a very very bad attack, before you reduce the meds? Louisa 
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    • Posted

      That's a very individual choice, but I'd gradually lower the dosage over a week or two, and either increase it or hold steady at the slightest hint of pain. With the approval of a doctor, or course.

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