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Trigeminal Neuralgia - help !

Posted , 8 users are following.

dawn_49415
dawn_49415

I was diagnosed with TN in January 2016, I started taking Carbemazepine and Amitriptyline which totally kept my pain at bay until about 4 weeks ago. I am now having to take time off work until my increased dosage settles down and i can work without feel 'drugged' up and sleepy all the time.

Any suggestions for alternative medicines ? I have tried acupuncture in the past but didn't notice any difference.

1 like, 14 replies

14 Replies

  • marsha_c
    marsha_c dawn_49415

    Posted

    Dawn I've suffered with TN 17 years. During that time, the Dr prescribed many different medications. The one and only medication that worked is Lyrica, it felt like a miracle when I started taking it and I didn't feel drugged AT ALL. I used to take neurontin and I had to gradually increase the dosage due to the zombie feeling it gave me. Lyrica us AMAZING!
    • dawn_49415
      dawn_49415 marsha_c

      Posted

      Thank you Marsha, I'm glad to hear that you are able to go about your days less zombified !! :-)
  • Windy338
    Windy338 dawn_49415

    Posted

    Gabapentin worked for me for quite a while but is not as strong as Carbemazepine which I could not take due to side effects and low sodium issues.  Later on my doctor was going to start me on Lamotrigne along with the Gabapentin but I opted for surgery instead which was a good choice for me.   Good luck!  You wil eventually find what works.
    • dawn_49415
      dawn_49415 Windy338

      Posted

      Hi Wendy, thank you for taking time to comment. It feels like the surgery road is a long way off yet but I am willing to try anything.
  • eddie13
    eddie13 dawn_49415

    Posted

    Hi Dawn,

    I've been at it since 2007. Carbamazepine only does the job for me but not 100 percent all the time. Flare ups come and go. I don't have the god awful electric shocks anymore. Am on 800 mg / day. Have the tiredness but is not that big a deal.

    eddie13

    Don't know anything about amitryptine.

    Hang in there with the medication as prescribed.

    • dawn_49415
      dawn_49415 eddie13

      Posted

      Hi Eddie, thank you, my pain has subsided considerably but just feel so drugged up all the time at the moment. I can't swallow tablets so I'm carrying big bottles of the stuff around with me all the time, 15ml x 4 daily.
    • marsha_c
      marsha_c dawn_49415

      Posted

      I sure hope you'll talk to your doctor about lyrica....it's unbelievable how much it relieves the pain. I felt like I got my life back after I started taking it.
  • tanz69
    tanz69 dawn_49415

    Posted

    So sorry to hear this, in my opinion take all the medication and rest/ime off you need.  This is not a condition that is easlily dismissed.  You need at least a year of the medication for the nerve to settle down.  It will get better and you will go into remission eventually. My advise is to take each day as it comes and make the necessary adjustments to your life and work around it.  Good luck.  If you on FB there are lots of support groups to help you xx
  • patricia_2468
    patricia_2468 dawn_49415

    Posted

    Hi Dawn,  with regard to not being able to take tablets, with Lyrica as it is a capsule, you can dissolve the contents in some water, keep in fridge, and have some when you need it.  My neurologist told me to do this.  Hope this helps.  Good luck!  Patricia 
    • wanganui
      wanganui patricia_2468

      Posted

      Hi patricia2468,Lyrica too was like a miracle when I first took it.How much mg do you take a day and have you gained weight?So glad your pain is kept at bay!
    • patricia_2468
      patricia_2468 wanganui

      Posted

      Hi Wanganui, currently, I'm taking 75mg 4 times a day (yes, I set the alarm to wake myself up each night), plus 125mg Trileptal 4 times a day.  Earlier in the year I was taking much more than that, as I was experiencing severe breakthrough pain.  Yes, I have gained a little weight, but I don't know if I can put it down to the Lyrica.  I walk every day, and don't eat junk food, so maybe it is??
    • wanganui
      wanganui patricia_2468

      Posted

      It will be the lyrica patricia2468  but if it's only a little who cares if it takes care of the pain! I was on 600 mg at the beginning then had a remission ( yay!) now building up again.How was trileptal for you when starting it? I have had some awful reactions to meds but never with lyrica and that's all I take now so wonder about trileptal.I have ATN. Thanks for replying so quickly!Enjoy rest of weekend!
    • patricia_2468
      patricia_2468 wanganui

      Posted

      Good morning Wanganui,  I began my medication on Trileptal, increasing/decreasing when necessary.  It worked a treat for several years, then I began introducing Lyrica.  All meds take getting used to, but I found myself becoming sluggish, balance, co-ordination, etc.  Trileptal is regarded better than Tegretol as it is supposed to have fewer side effects.  Fairly recently, my neurologist told me Lyrica was the preferred medication, as it has a lot less side effects, but I found it didn't quite kill the pain for me.  That's why I have introduced a small amount of Trileptal.  So glad you had a remission.  Have a great afternoon.  Patricia 
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