Reduced pain with gabapentin
Posted , 8 users are following.
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
PerkinsPea colin69485
Posted
Hi
Yes I had the same experience. I've been on the max dose for over 5 months now. I will say I was on the max for about 6 weeks before I felt more reduction in pain. It's a build up drug, but the pain did go down more. It's not nearly as affective on me as the pregabalin/lyrica was but the side affects and withdrawal on that are really bad, the weight gain is crazy but I do know I would be in no pain if I was taking doses allowed by my neurologist (450mgc 3 times a day but he's very knowledgeable, my doctor was horrified 😄
but I can't stay on that now that my pain won't go away. I was told I could add carbamazepine in but my doctor friend has said it's a very dirty drug, meaning lots of nasty side affects so I don't really want to take it as they're now talking surgery anyways. Pregabalin is very affective if you can live with the side affects, I was ok with it before I had a baby as I had that kind of metabolism that I didn't gain weight, I didn't have a car so driving wasn't an issue (you definitely can't drive on it) and the withdrawal I hated but dealt with but I now have CFS and it's just too much so if you think you could handle it it's an option or you could keep giving the gabapentin a chance. But if you're going to change speak to the doctor as you would go on something else at the same time as weaning off this or you'll be in a lot of pain again. All the best x
colin69485 PerkinsPea
Posted
Dear PerkinsPea
Thank you for sharing the details of your experience, that's most helpful.
Colin
Tnhurtsme colin69485
Posted
colin69485 Tnhurtsme
Posted
Good luck to you, too! Colin
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 joanne49021
Posted
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 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 colin69485
Posted
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 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 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.