TRIGEMINAL NEURELGA

Posted , 5 users are following.

Hi all i was recently diagnosed trigemina neurelga ita horrid face ear pain. was prescibed 450mg pregablin. the cold winds make it worse. how longs this neurelga last please??

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  • Posted

    This sounds like it might be a form of Bell's palsey: https://patient.info/health/bells-palsy

    Make sure you are being diagnosed and treated appropriately. It can be caused by inflammation in the Fallopian canal, where the nerve exits the skull to get to the face. Sometimes a steriod, e.g. Prednisone, is injected to the site. It can be caused by a bad cold that gets to a sinus or some other cause of inflammation. 

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  • Posted

    Hi Mark. Im really sorry to hear that you have been diagnosed with this awful condition. 30years ago my mother was diagnosed with this too. Her pain was horrendous too so you have my sympathy for what it is.Her gp prescribed a drug called tegretol but they gave her too much so that was discontinued. She was px many drugs over the four years she had this awful condition but none of them seemed to help. They all had side effects. The next treatment they tried was alcohol injections in the roof of her mouth. If this had worked she could have had pain relief for a year but unfortunately it didnt. The next thing they did was an operation to section (cut) the nerve but it didnt work either.This was in 1980 so I really hope there are more treatments that can be tried and better drugs for this condition. I wish you the best of luck. When youre in pain I think youll try anything.
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  • Posted

    Hi Mark, sorry to hear you're suffering from this horrible condition. I've had TN on and off for approx 20yrs. My pattern was 9 months then remission for 9 months. Then there was a gap of 6yrs. Why I don't know. Four months ago it returned with a vengeance. I was always prescribed with Tegretol, when I had really bad bouts the Dr gave me Amitrityline to top it up and taken at night. I had pain relief for the duration. 

    Unfortunately this time around, for some unknown reason Tegretol didn't work, even with the top up of Amitriptyline. I then had side effects, so the Dr changed the Amitriptyline and gave me Gabapentine to try. But this time the side effects were worse, so I was told to stop the Tegretol as the Dr was convinced this was causing the side effects. I continued with Gabapentine on its own, and the worst thing happened, my legs buckled, I had bad double vision and unsteadiness. So I had to come off that too. I saw my own Dr this time and he tried me on Phenytoin, this was tried for a few weeks on gradual increase of dosage, this didn't even touch the pain. This time around I came out in a bad rash, again I had to come off the tablets. Third attempt now is the same as you've been prescribed, Pregabalin but 50mg twice a day. I've only taken them for a couple of days and I'm still not pain free yet. The Dr is monitoring my medication weekly. I won't know til the end of this week whether this medication will work. I think is is the third best choice after Tegretol and Phenytoin. So for the last 4 months I've not been pain free, yet.

    Do you take your Pregabalin 450mg once a day? 

    Is it relieving your pain?

    I hope you get pain relief from this. 

    A lot of people have different stories to tell regarding their length of time they've had this awful condition. Some get breaks and it returns others have it continuously for longer.

     

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    • Posted

      Hi Glorana thanks so much for your reply. i take 3 x 150mg a day. its not working for me as well as it  did at first. may need increase. this pain is awful i just joined a trigeminal support group in uk they sent me loads of info. its trigeminal nuerelga uk. i do hope you can get yours sorted. ok take care mark
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  • Posted

    Hi Mark

    Sorry to hear Pregabalin not working for you. Mine isn't either, mind you I'm not surprised at such a low dosage. Ask your GP to put you on Tegretol. That is the first and top choice for TN as it is the best one. It may not work for everyone but worth a try for you. Good luck I hope you get some results soon and let us know how you get on.

    Best Regards, Gloriana.

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  • Posted

    Hi Mark.

    I was started off with 200mg 3 x daily. When that still didn't quite relieve the pain the dosage was increased to 250mg then gradually to 400mg 3 x a day before I had total pain relief.  It depends on the level of pain you have. Your Dr may start you off with a low dosage and monitor your progress. But be warned Tegretol will leave you feeling nauseous at first but it subsides eventually. For me personally I think they were strong enough, and out of all the different medications I've had this time around, for me I still think Tegretol is the best. 

    But don't forget it doesn't suit everybody. You won't know until you try ok? 

    Let us know how you get on. Good luck.

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  • Posted

    Hi all this is the only discussion I see up and running so maybe get some advice here , I've just been diagnosed with TN after 3 weeks of agonising pain sad yesterday doctor prescribed me carbamazepine 100mg twice a day I'm also taking tramadol for pain relief which isn't having any effect , I can't sleep eat or drink anything without ending up in severe pain all across my right teeth up my face and behind my ear , I have a two year old daughter to look after and that drugged up n dazed by all the meds I don't know if I'm coming or going .... Please tell me there's a light at the end of the tunnel don't know how much more of this I can take .
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  • Posted

    Hi Sarah

    hope you don't mind my advice but you would be better off starting a discussion of your own as this is Marks Discussion board for his own problem.

    When you put up your problem on your own board, which will benefit you personally, other people will comment on it ok?

    I will respond to your discussion when you put it up others will do the same ok?

    Chat soon,

    Gloriana.

     

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