I am dealing with out of control pain of my TN1. I have been on Tegretol for 8 years, most of that time 1600mg. I was in remission for 5 years, but the pain has been increasing for 15 months and is now on the edge of what I can manage. I cannot speak, eat any solids, and can hardly drink, but I do. I also take 2,400 Gabapentin (we keep raising it) and 30 mg Baclofen. Nothing is helping. Today I asked my neuro about switching to Trileptal and she said I could try it. She said that I could just drop the Tegretol and go right to Trileptal. The pharmacist agreed. But I am pretty terrified to drop the drug that’s been my lifeline all these years. Any advice? Many thanks in advance.
When you say drop do you mean stop one completely and start the next? Because that is the worst thing you can do. Your body depends on tegretol. Even with it gradually not working you can’t just stop! You should titrate off one med and onto the next. You just stop taking it and you’ll put yourself in withdrawal. You need to do a step down plan.
Hello! Nice to hear from you again. Yes, that’s what I think too, which is why the advice I got today makes so little sense. Also, which is (probably the last reason) why I have found a new neurologist, but I don’t see him until January. Ok, I will not do anything until I’ve gotten some better advice on how to make this transition more wisely. Always amazing to me how we the people who live this life know so much more than (some) of the people dispensing their professional wisdom. Thanks much, Azurelle.
I did a quick Google search on stopping tegretol and of course the most important thing is you can go into grand mal seizures if you’re taking it as anti seizure, but with that in mind it would make sense that if you stop cold you could trigger the mother of all TN flares. It has, after all, been helping to suppress them all these years.
The FDA also noted that the deadly rash you have to watch for when first starting can happen with sudden stop. You get that rash and you’re out of the entire category of meds! Clearly something to be avoided at all costs.
Typically in this category you titrate down while titrating up on the other med in an effort to keep some sort of balance.
Don’t let them dismiss your med change as somehow less important or serious because it’s “just” pain and not seizures. And Google the hell out of any instructions and talk to a pharmacy you trust, too.
When I was in college (many moons ago) I had a nuero have me just stop a daily med I was taking for migraines. I only been on it about 90 days. Worst withdrawal of my life. I was in bed with a blinding migraine when I wasn’t throwing up for 4 days. I lost vision in one eye, vertigo…luckily I was home on break so my parents were around, looking back we should have gone to the ER but I was “following directions”-----which is why I have never ever just followed directions again.
PS: I loved trileptal. It was the first med I took for ATN and it provided immediate relief. Not pain free but 80% relief within a hour of my first dose. I didn’t get any higher than that over the next year and eventually changed meds, but that’s me, hopefully you hit in the high 90s for relief and get back into remission!
Azurelle, you are always full of so much interesting information. I am appreciating being in touch with you. For now, I have done nothing, although my frequent texts from CVS tell me that there is an rx for Trileptal waiting for me. I just refilled my Tegretol a different pharmacy. Wondering if that will cause a conflict for my insurance. I do know another pharmacist in town who I can talk to, so I will check in with him, and will keep looking online before I do anything. I find it interesting that you are the only person who replied to my question. Maybe this switch doesn’t happen a lot? Meanwhile, Merry, Happy, Peaceful, and good thoughts for 2018. Hell, good thoughts for tomorrow! Best - Faye
Your insurance will be fine, changing meds is called a therapy change and in 15 years of working at one of the largest prescription benefits management/pharmacies I’ve never seen a plan not cover a therapy change.
Since you know you’re changing meds you can always drop your daily dose yourself but by no more than about 20% every few weeks. And this is only to get started, don’t come off one med without starting the other or you could go into a flare.