1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Lyrica

Posted , 3 users are following.

Valkyrie
Valkyrie

Hi to all,

To those on Lyrica or who have tried Lyrica, how long did it take to give some pain relief. I am on Tegretol 600mg and Neurologist has now added 150mg Lyrica as the Tegretol seemed to be not working much anymore. I think the Neurosurgeon is hinting at Microvascular Decompression on the horizon. I have been on the Lyrica for two weeks and all i get is a damn good night's sleep and a very fuzzy day but the pain is the same as before. Another MRI coming up and appointment with the surgeon before the end of March so i would like info if you have it please. I am also thinking of asking to try other meds before i let him at me with his knife.

 

1 like, 5 replies

5 Replies

  • eddie13
    eddie13 Valkyrie

    Posted

    Hi Valkyrie,

    I ask how long have you been on the 600 Tegretol, and did it use to work ok ? I had to to increase to 800 after 5 years at 600. I'm around 165 lbs. I would get unpredictable lightning bolt attacks on left side roots of teeth. No trouble now at 800. Of course discuss with neurologist.

    eddie13

    • Valkyrie
      Valkyrie eddie13

      Posted

      I only started on Tegretol in July last year although i have had TN before that but only on and off. In July I got a massive attack which had me screaming. Doctor had already prescribed Tegretol (in case i needed it) and told me to start on 150mg a day. This fixed the problem after about 1 week or so. Around January I had to go up to 300mg a day to get the same result and now 600 started in mid February. Its also getting worse, as in, i am almost never without the pain it just varies in intensity and cleaning my teeth is almost impossible. Surgery is starting to look like the way really, i just hate the thought.
  • charlotte73157
    charlotte73157 Valkyrie

    Posted

    Tegretol has some awful side effects for your liver.  Make certain you have your liver function tested before you start taking Tegretol and then have you liver function tested after two weeks of taking this drug.  Tegretol worked for me for about a week before I noticed that I did not feel well.  The emergency room docs told me that I would die if I did not stop taking this drug. The only thing that has worked for me is Gamma Knife (stereotactic radio surgery), also known as radiation.  The procedure is painless but does put radiation into your body.  So far the only results have been a pain free life and a numbing on the left side of my face where the TN lives forever.

    I had the Micro Vascular Decompression (MVD) procedure (brain surgery) and the surgeon found no blood vessels that were touching the trigeminal nerve.  If you elect to have this surgery please make certain that the surgeon uses an optic fiber scope.  The MVD procedure is painless as the brain has no pain functions.  You will end up with a small hole in your skull that will be replaced by the surgeon.

    • eddie13
      eddie13 charlotte73157

      Posted

      Interesting Charlotte,

      Shows you almost everyone's case is different. My docs are watching liver.

      Thanks, eddie13

  • paula76255
    paula76255 Valkyrie

    Posted

    Hi Valkyrie

    Im on 600mg Lyrica (300mg twice a day and have been on this drug for two years and started on a very low dose).  This is the maximum dose for this drug which is worrying as I have nowhere else to go if the pain gets worse.  Ive been told that this is a relatively good drug to be on as the side effects are less that others out there.  However, Lyrica makes me feel weird within an hour of taking it, dizzy etc but does wear off.  I do get breakthrough pain but I can cope with that at the moment.  Re Tegretol, as Ive said in this forum before, it isnt a good drug as I ended up in A&E with dangerously low sodium and spend a few days in hospital until my level returned to normal.  Needless to say coming off the drug was awful as I couldnt talk to the doctors, had to write everything down.  Hideous.  There is no way I would go back on that drug and I was only on 100mg a day!  As long as you have regular blood tests and keep and eye out for a rash then you should be ok on Lyrica.  Ive also read that theres a new drug being developed in London called Novo Sodium and trials look positive so Im keeping an eye on that.  I hope this helps!  Good luck.  Paula

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.