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TN for 10 years

Posted , 3 users are following.

mezebr
mezebr

I write for my mother who has had it for 10 years. she has tried very different medication, been through three operations without success. Now she takes lyrica 300mg 3-4 times daily, paracetamol 1g

4 times daily, and morphine, on her really bad do.The doktors have given up on her. it must be said that we live in Denmark, and from Denmark. but since we can not get more help, we hope for a miracle.

we have been helped by a doctor in France who has prescribed Trileptal, but not how it should be used or how she should come off lyrica where her dose is very high.

is there anyone here who have switched from lyrica to Trileptal with good effect? She has previously been treated with gabapentin, Tegretol, amitriptyline, morphine, two different antidepressants, I do not remember.

we hope some one can help because my mother is about to give up.

- Mette

1 like, 6 replies

6 Replies

  • Glor888
    Glor888 mezebr

    Posted

    Hi Mezebr,

    Welcome to the forum.

    I personally haven't changed over from Lyrica to Trileptal but I have been on all the others. Tegretol was first prescribed for me over twenty years ago but I can no longer take those so I was put on Pregablin. They're the only ones that worked for me this time around. Although I'm in remission now and with my history of TN it could quite easily return. 

    In your mother's new medication there should be a leaflet that will explain how much dosage to take etc. from what my DR said, when I came off Lyrica, was I had to reduce it gradually each week until I was down to 25mg a day as they're very strong. Your mother is on a high dosage so I would go back to your Dr and ask him/her about the reduction in Lyrica and to explain in more detail. It doesn't sound like your Dr is very sympathetic. 

    Has your mother had an MRI scan and been referred to a Neurologist? If she's had all of this already I can only suggest, if you get a chance, to read through some of the other patients TN experiences, some with their own remedies. I read one where the patient said she no longer has TN since she's been on Cod Liver Oil capsules. I take these regularly daily and even though I get the occasional twinges of TN I'm still ok without medication. It may not work for everyone but I've yet to read that someone tried it and it didn't work. But other than that you could try requesting a second opinion and keep on at them until you get answers. Don't give up!

    Please let us know how you get on and keep in touch. 

    Kind regards

    Gloriana

    • mezebr
      mezebr Glor888

      Posted

      Thanks for answer, and sorry for my English, do the best I can. My mother has been through MRI as she has two balloon operations. Where the one went wrong, and she couldn't see for like three days. She has three doctors, all of whom have given up and do not give her any hope .

      I would suggest that she get a new neurologist , and to try to take cod liver oil capsules smile

      my mother does not even have the opportunity to apply experience of others because she has constant pain. she sleeps more than she is awake to endure the pain, that's why am I doing this for her.

      And the new medicine is from France, so we do not understand what they write rolleyes

      I will let you know when I have talked with my mother about the cod liver oil capsules..

    • Glor888
      Glor888 mezebr

      Posted

      I've just checked on line for Trileptal, also known as Oxcarbazapine, and it gives you information on the dosage so you could check that out for your mother.

      I agree to change over to a different Neurologist, hopefully you'll have better luck. Keep on at them and good luck.

      Best regards

      Gloriana

  • alea06142014
    alea06142014 mezebr

    Posted

    I'm a newbie to TN but has she tried carbamazepine? It has worked a miracle for me! Also, I can't believe the Dr's would give up. How cruel
    • mezebr
      mezebr alea06142014

      Posted

      Ues she already tried carbamazepine, with lots of side effects, and the pain was still there 👎🏻
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