Frustrated

Posted , 7 users are following.

Had a phone call from my GP on Friday to advise that he is not happy for me to take the carbomiazipine that he prescribed the week before??

To cut a long story short I saw my GP a week ago who confirmed that he was 99% sure I have TN he prescribed me Carbomiazapine but advised to wanted me to have a blood test done to check my liver function before taking them. He also advised that he was going to refer me to see a neurologist.

He called me on Friday to say that my blood results were fine but that he didn't want me to start the carbomiazipine until I had seen the neurologist but that the wait to see them was considerable.

So basically I am just expected to continue on with the pain for god knows how long until I have seen a neurologist? I don't know how I can to be honest my pain is getting worse week by week and was counting down the days to start the new medication.

Anyone have any advice? I feel really let down by my GP

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5 Replies

  • Posted

    Kayleigh,

    Neurologist is the right doctor. Crbamazepine has worked pretty awesome for me for 9 years. Not 100 pct perfect. Surprises come and go but no where near as intense as if not on the drug.

    eddie13

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  • Posted

    See if he can look at OXCARBAMAZAPINE.

    I moved to this from carbomiazipine because it hasw far less side effects.

    May be a solution as I ahve been on it for two years. Like most medications not everyone responds the same way.

    Good Luck

     

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  • Posted

    Stella him, he is full of it. T N is called the suicide disease for a reason. It is too much for a person to bear and that you have talked to people and the carbazepine is one of the drugs used to combat the pain. Once TN is confirmed, it is time for a neural surgeon who can get rid of the pain. Waiting is really not an option. Easy for him to say that you have to wait. Tell him that you are having suicidal thoughts because of the pain. That will get things going, if not, get help on your own. 
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  • Posted

    Hi I have this pain for 3 years now in my both sides of my face level 8-10 pain.im not sure what pain you get and in what areas.advice to help with your pain if it's the same as me(in jaw area)if my pain is really bad I put a dental mouth guard in which relax my jaw and muscles and nerves for a bit.also a ice pack and hot water bottle helps

    Don't get your hopes up about the meds because iv tried many and none of them have helped for me.im still looking for the right medicine.hope it works for you when you get it.

    Thank you

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  • Posted

    Get a second opinion. Most Gp’s will put you on Carbamazipine because it’s known as the “Gold Standard” for diagnosing Tn. When you get to the Neurologist, if you have already been put on a dose of Carbamazipine and it has given you relief this is one thing the Neurologist already knows. He may then go on to prescribe one of the newer drugs or leave you on Carbamazipine if he think you have Tn. Taking you back off is not logical unless your liver function test has come back with a problem. Did he give you a print out of the results. If not, please go back and ask for one to take to a different doctor for their opinion on this. It does not seem logical to wait to see a Neurologist for them to put you on a drug to see if it helps and then wait again for another appointment to have their opinion and diagnosis. I don’t think your GP appreciates the pain that Tn can cause.
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