Recently diagnosed with Trigeminal Neuralgia.

Posted , 6 users are following.

I have recently been diagnosed with TN and I have been prescribed PREGABALIN-LYRICA 300MG per day. They have eased the pain considerably but when I tried to reduce the dose the pain came back. I find that they make me quite 'out of it' and I am off work at the moment. I worry that I will either have to stay on this maintenance dose as reducing it may mean the pain comes back but the side effects are that it is unsafe for me to drive and I am disorientated in a room with artificial lighting.

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11 Replies

  • Posted

    The drug of choice for TN is tegretol ((carbamazepine).  Has your neurologist suggested this for you?
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  • Posted

    My husband has been prescribed Carbagen by his doctor, he has only been taking one tablet a day 100mg He is now on day four and extremely unsteady on his feet. He was advised to double the dose after 7 days, then take 3 a day after the third week. He is still waiting for the results of his blood tests and an appointment with a neurologist to confirm if he is suffering from TN or temporal arteritis. It is so worrying to see the rapid change in his health.
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  • Posted

    The diagnosis for your husband's condition is very important.  The two diseases you mention are very different as I am sure your research had provided.  Is the doctor planning a biopsy to rule in/out temporal arteritis?
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  • Posted

    Hi Caryl, I really haven't any idea what the plans are other than waiting for blood test results and an appointment with a neurologist. Yes , I have researched a bit and realise the two conditions are completely different which is why I really don't want him to double up the dose of carbagen. I can understand why guest is anable to drive, it seems a toss up between the awful pain or the terrible side effects.

     

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    • Posted

      I am sorry that you and your husband have to deal with this situation.  Can you talk to the prescribing doctor about your husband's unsteadiness? I looked up Carbagen and it is carbamazepine which means he is being treated for trigeminal neuralgia.  It is an anti-seizure drug and is very effective treating TN.  It is troubling that he is having the dizziness. I hope you get some answers from the doctors soon, but I wouldn't wait to talk to your doctor about these side effects.  Good luck.
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  • Posted

    Thank you Caryl, and to this site which is a tremendous place to find other people's experiances. Sadly, my husband has been diagnosed with a brain tumour which is why he was so poorly when taking Carbagen.
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  • Posted

    Hi I have idiopathic to with burning mouth syndrome pm 425mg of pregablin stared on 150 then yo 300 I have had to increase the dose but it isn't really making the pain easier I felt really spaced out when I first started taking pregablin you have to increase or decrease this drug very slowly ie 25mg every 7 - 10 days or vide versa same applies to increase it, the side effects do wear off but speak to your gp maybe not the right drug for you I tried carbamazepine didn't touch the pain at all had to go back on pregablin I have an appointment with the pain clinic 1st July my neurologist just discharged me because he could not find anything compressing on the to nerve he has literally left me hanging on in agony I have to take diazepam to help and pain killers. Go back to your gp or ask to be referred to a neurologist for an assessment good lucj
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  • Posted

    Sorry to hear your husband has being diagnosed with a brain tumour I sincerely hope he gets fit and well again x
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  • Posted

    Hello, 

        I am 22 years old and am in the process of beng diagnoesed with TN. I was prescribed with PREGABALIN  300 mg, 3 times a day and it has been about 5 days now. I started to decrease the dozage and the pain increased really badly. I could not control it today even after the meds. 

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    • Posted

      I too am in that process. I am hoping to get in to see my Dr tomorrow and a nurologist this week. I was put on 100 MG Gabapentin. It does take the edge off the sharp pain and just leaves me with a constant ache in my teeth and cheek. It is extreemly painful to chew. Any pressure on the teeth is unbareable. I hope you get some answers soon! I am afraid from everyones stories that my nurologist and Dr will just blow me off and tell me nothing is wrong... I have a very high pain tolerance so often times they think I am exaggerating. Have you found any more answers?
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