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Reduced pain with gabapentin

Posted , 8 users are following.

colin69485
colin69485

I've been gradually increasing the dosage of gabapentin in order to deal with TN pain. Initially, the pain reduction was significant but higher doses seem to make little difference. I've been left with a persistent pain in the angle of my left jaw. This is a marked improvement on the initial position where I was unable to eat or clean my teeth without being in pain. Has anyone one else experienced this? I currently take 900mg X 3 per day, a dosage that's getting close to the max dose recommended by the BNF and, of course, my GP.

In short, I seem to be getting very little extra benefit from taking more of the drug. I'm not experiencing any side effects at this strength but there are other internal effects of taking this drug that aren't being or can't be measured! I'm tempted to slowly wean myself off the gabapentin as the pain reduction at this high dose is less than we'd hoped for. 

Any similar experience? Please share this with me. Thanks.

1 like, 11 replies

11 Replies

  • Tnhurtsme
    Tnhurtsme colin69485

    Posted

    You may trying adding another med to your gabapentin i wish i would of stay on my now it barely helps but i need it to give a base line defense. Im on Trileptal it was really hard on me the side effects suck but the tn is way worse i may to change yet again but im trying to avoid doing that good luck my friend
    • colin69485
      colin69485 Tnhurtsme

      Posted

      Tnhurtsme my dear friend, thank you so much for your response.

      Good luck to you, too! Colin

    • joanne49021
      joanne49021 colin69485

      Posted

      Colin. Are you seeing a neurologist? I'm on gabapentin too. My doc said I might have to take 2 different meds to control. Also said he had patients on 3 different ones to control it.

    • colin69485
      colin69485 joanne49021

      Posted

      Hello Joanne I live in the UK and use our National Health Service. I had an initial referral to a neurologist but after that, all the support is given through my GP or the occasional advice from our local pharmacist. It could be that I also need additional medication. I was particularly interested in finding out if others had experienced the same results as me, i.e. the retention of a residual pain in the angle of the jaw, irrespective of a drug increase using gabapentin. Take care and good luck with your medication. Col
    • rob07566
      rob07566 colin69485

      Posted

      Hi Colin, I also live in UK and have had TN for 30+ years. Had my first MVD 15 years ago and my second last year. Several RF lesions inbetween and was up to 2700mg of gabapentin before the last MVD. Despite the high dose of gabapentin, I had constant residual pain centered where the lower branch of the trigeminal nerve exits the jaw bone below the left edge of my mouth. This was accompanied by up to 20 "shock wave" attacks which could lead to me literally screaming involuntarily.  Following the MVD, I no longer take any TN medication although there is some discomfort from numbness. My best advice is to make sure that you are seeing one of the very few neurologists/neurosurgeons who really are specialists in TN. I made the mistake of just getting a GP referral to a local neurologist and continued to experience a lot of unnecessary pain until identifying and switching to a neurosurgeon who really is specialist in TN. It meant travelling 2.5 hours each way but was well worth it. Thankfully, I had kept my private health insurance going after retirement but if you don't have private cover, remember that the NHS Constitution gives people living in England the right to choose where to receive treatment. (look up 'NHS Choices' and, imo, think Bristol, Liverpool or London).

    • colin69485
      colin69485 rob07566

      Posted

      Hello Robo

      Firstly, thank you for taking the trouble to respond to my message. 

      For the record, I originally took carbamazepine but was directed towards gabapentin by an NHS consultant I met at our local A&E department. I was there because I'd experienced vomiting and fitting - perhaps due to alcohol interaction or maybe sodium ion deficiency, it was never confirmed. I found, as is often the case, that gabapentin is not as efficient as carbamazepine in controlling TN pain.

      I'm currently reducing the gabapentin dose slowly to see if there is any marked difference in pain relief. From what you've told me, I'm clearly a novice in the TN stakes! However, I may well find myself needing an operation at some stage and I would be very interested in hearing about your experience pre and post-operatively with regard to MVD.

      I also have a private medical insurance and it was through them that I was referred to my first consultant who correctly diagnosed my TN. How good he is in the bigger scheme of things I've no idea but I totally agree with seeking the support of the best there is out there. Thank you again. Colin

  • marilyn49807
    marilyn49807 colin69485

    Posted

    colin69485,

    I started on low dose of gabapintin and now 300mg in morn.,600 mg at noon and 600 mg bedtime. I have very little or no pain now. The whole R side of jaw use to be horrific,could not brush my teeth without the horrid pain. I feel God is taking care of this as well. I will say a prayer for you as well. Did you say that you were taking 900mg 3x a day which =.2700 mg a day. That is a lot of meds.!!! and I thought 1500 a day was alot. How do you drive or work? I hope you will be able.to cut back. Keep in touch. Gods blessings..

    • colin69485
      colin69485 marilyn49807

      Posted

      Hi Marilyn   Thanks for responding.  Yes, it is quite a high dose and I intend to slowly wean myself off the drug, gradually reducing the dosage by 100mg every 4-5 days, to see if I can get adequate pain relief at a lower dosage. The drug has little or no effect on my ability to concentrate and driving is fine. However, it needs to be cut back for other reasons, too.

      I'm not a believer but thank you so much for your prayers ...... You never know!! Col

  • amanda60033
    amanda60033 colin69485

    Posted

    I was on this medication at some point as well and kept having to increase the dose to get pain relief until finally it just stopped working.  I decided to get myself off of it since it wasn't doing anything anymore, and was successful in a gradual decrease.  I didn't notice any increase in my pain or symptoms getting worse when I finally got off of the medication. 

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