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Some positive results

Posted , 8 users are following.

wayne6734
wayne6734

I am in Toronto and first contracted TGN about a year ago. It took some false starts to be properly diagnosed but I am now seeing a neurologist who has prescribed "slow-release" carbotetramazapine ( hope I am spelling it correctly) and I have had positive results in controlling the pain. (As I understand it this the same drug that is prescribed in much larger doses for epilepsy). Has anyone else had this drug/results? 

2 likes, 14 replies

14 Replies

  • deb5678
    deb5678 wayne6734

    Posted

    Yes

    Well I believe that the new technology of Gamma Knife or the right doctor

    Make sure you have the RIGHT doctor

    Dr James Robinson in GA did mine

    I can not believe the pain I have been living with and today not totally pain free but 90% and that surgery was done 2 weeks ago

    God Bless Him and his team

    • Sasha8101
      Sasha8101 deb5678

      Posted

      Hi deb

      I'm glad your gamma knife surgery went well. I was just wondering whether you've experienced any facial numbness post surgery? I'm considering gamma knife but am aware that this is a possible side effect.

      Sasha

  • heather30609
    heather30609 wayne6734

    Posted

    I am taking 100mg carbamazepine (I guess that's the same/similar to yours) twice a day. On the whole it works well for me with occasional minor twinge. If it flares up I increase to 3 a day for a while and that seems to settle it. The main thing I suggest, whatever dose or drug you are on, is take it at strictly regular intervals throughout 24 hours so that you have a constant level in your blood. I set up alarms on my smartphone so I don't forget. Good luck. Heather

  • marlene36342
    marlene36342 wayne6734

    Posted

    Hi Wayne - Hello from Nova Scotia.  I was diagnosed in 2006 with TN and had MVD surgery at the Toronto Western Hospital in 2009.  The med you are talking about is in a family of anti-seizure meds.  I have taken 5 different meds in this family with bad side effects.  Another name for this med is Tramadol (I am sure this is correct),  The higher the dose for epilepsy - I am not sure.   Anti-seizure meds are used also for nerve ending pain control.  I had a friend with cancer and one of the meds she was on was gabapentin(also an anti-seizure med).  Not sure if this info is helpful but I am quite familiar with these meds.  If you have any other questions, I would be happy to answer what I can.  Best wishes.

    • wayne6734
      wayne6734 marlene36342

      Posted

      Thanks Marlene.

      I did have drowsiness as a side effect until I was switched to the slow release version.

      Wayne

    • beth97678
      beth97678 marlene36342

      Posted

      just a small correction-another name for this med (carbemazepine) is Tegretol. It's easy to mix it up with Tramadol,but that is an opiate painkiller which is fairly useless against nerve pain,Gabapentin, or the more modern Pregabalin which has fewer side effects are also used for nerve pain,titrating up the dose till you have maximum pain relief with fewest side -effects.

    • marlene36342
      marlene36342 beth97678

      Posted

      Beth - thank you for correcting me.  I have taken alot of anti-seizure meds (5 in total) and I tend to get confused.  I have taken gabapentin on two occasions with terrible side effects.  I do remember my family phsician mentioing Tramadol - ths is probably why I got confused.  Do you have TN?
    • beth97678
      beth97678 marlene36342

      Posted

      Marlene36342-it's so easy to write one when you mean another.Users of Gabapentin often complain of brain fog.My daughter began to have TN a few years ago,so has Tegretol,Gabapentin and Amitryptyline meds.I have had shingles wrapped around my torso from spine to heart for the past 10 weeks.It's going,but I got an insight into what the meds my daughter takes does to a brain.The nerve meds are the only ones that work for both-and I've realised that these forums are a mine of useful and very accurate up-to -the- minute info: on TN and Shingles.A lot of doctors are not the specialists in this field that we sufferers are.There is no avenue that someone with such acute pain will not explore,for ourselves or our loved ones.X

  • gill32586
    gill32586 wayne6734

    Posted

    Hi Wayne, I take the drug you mention. (Tegretol in the U.K.). I do hope this continues to be helpful to you.. It's widely prescribed for T.N and has the best results of any other drug for the condition. It can be supplemented with others if the condition recurs..I'm taking 600mg of this together with 600 mg Gabapentin. Depending on your dosage you should be aware that regular blood tests are sometimes advisable as Carbamazapine can resul in low blood sodium. Do ask your doctor to check your dosage. Better to be safe than sorry. It has this effect on me but is treatable so don't worry.. Best wishes Gill

    • wayne6734
      wayne6734 gill32586

      Posted

      Thanks for your Input Gill

      I will ask about the Gabapentin

      Wayne

  • tanis65622
    tanis65622 wayne6734

    Posted

    I have been diagnosed for about 2-3 weeks and I am now taking carbamazepine 200 twice a day and gabapentin about 600 a day, my Dr said to take more at bed time. I haven't seen the neurologist yet but the increased gabapentin has been the one to do the trick. Idk if it's the combo. I take the slow release. I slept 7 hours last night for the first time in 3 weeks. I also sit in a shower chair and use a shower head with a hose and put as hot water as I can stand. The heat seems to help more than half the time. Especially if I catch it when it's first starting. I also have my right arm on fire when the head starts. It's all part of the same nerve attack. The first one that came hit me out of nowhere and I thought I was having a stroke. I am sorry for rambling just sharing my story. If there is anything you can glean from it, I am glad. I hope you keep it at bay. I know the he'll it can be. Can't wait to get this under control. And reading here gives me hope. Good luck!

    • wayne6734
      wayne6734 tanis65622

      Posted

      Thanks Tanis,

      I will ask about the gabapentin combo.

      I hope you get ie undercontrol...and it stays that way!

      Wayne

      p.s. Interesting about the hot water too

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