I’ve been suffering with TN for a little over a month now and this whole new illness is horrible! I’m still doing research on it, seen a neurologist who specializes in TN and started Tegretol. Did acupuncture and chiropractic with some temporary relief. Anyone taking Tegretol and had good results?
I am on it. I am upping my dose though. Combined with Gabapentin, my pain ceased after about 2 weeks and I was pretty pain free (except for the quick occasionals) for about 5 months. Until now. The TN could just be coming out of remission though. I was also doing acupuncture during that period. I stopped two months ago (insurance stopped covering and I couldn’t afford to go) and now the pain is back. Could be a coincidence, could be the remission ending, could also be that I need to up my dosage of drugs. So many variables. Good luck with Tegretol. I do hear that oxcarbazepine gives some better results with fewer side effects though. I might lobby my doc for that one. My first neuro wanted to prescribe it but my old insurance didn’t cover it.
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I’m taking the 100 MG twice a day. About to take my third dose. I’m feeling “off balance”, blurry vision in distance and like my head is huge. Are any of these side effects like any that you all experience? Do any of them go away after awhile on the Tegretol?
Hi Donna,
I started on Tegretol as my first med, my Neuro had prescribed the extended release formula in 200mg oral tablets and I later added in a 100mg direct tablet such as you’re on now, my Doc said they were great to take for break through pain. I believe in Tegretol wholeheartedly, unfortunately for me after taking it solidly for 5 years, it stopped working.
All your side effects are a result of Tegretol consumption and you may experience such side effects for up to a couple of weeks. After that, the side effects diminish until such time that you need to increase the dose. Each time you increase you dose you’ll get side effects again, but just for a short time.
Try to stick it out, the side effects will diminish and like Misty says, Oxcarbamazepine does have less side effects, but you do have to take larger doses of it.
Either Tegretol (Carbamazepine) or the Oxcarbamazepine will be great meds when you’re starting out, unless the side effects of the Teg get too much for you. But they do have the highest success rate of all the TN meds if you can take them.
I noticed in the first week on Tegretol, that I could feel an attack happening, but it caused me no pain - very odd sensation indeed. But I felt like I was drunk, walking into walls, falling over, head like a brick and very tired. But it is immediately effective. Next time you see your Doctor, ask about the extended release Tegretol - it doesn’t give your body such intense side effects as the immediate release one does.
When Teg stopped working for me, it had become quite obvious. I ended up in the ER between 3 to 4 times a week, I’ve been admitted overnight into observation twice. Out of the 6 years since I was diagnosed, the last 7 months have been the worst. Remissions went from lasting months, to weeks - if that.
Alternative therapies, if you’re in a position to take advantage of them, can be beneficial - I even invested in a facial steamer that I use with essential oils - the relaxing ones. I’ve done the acupuncture, I can’t use a Chiropractor because I have Osteoporosis and a chiro would be too dangerous for me. But I’m taking an interest in an Osteopath as a friend of mine sees one for her neck - I’ll get her to ask her osteopath what she knows of TN.
Ok, I talk too much - especially when I’m tired and medicated. I’ve just had 15 mg of Oxycodone 
and it doesn’t take my pain away when I get an attack, but it does certainly take the edge off. At the moment, my attack feels like a toothache in my whole face rather than the full on attack. But it doesn’t always work either - but you get that. Ok, I’m going to shut up now 
Cheers Donna! I hope you are able to have a great day! Remember, take it easy while your brain learns to adapt to the medication - at the moment, it’s scrambling the signals - but that will fade and you’ll get your much deserved relief soon!
Best wishes ~ Kerry (or Ko as some of my friends here call me