Coming off of Amitriptyline and on to either Tegretol or Neurontin
Posted , 4 users are following.
Hi all,
After being on Amitriptyline for 3 months and constantly having to increase the dose due to breakthrough pain, I am becoming frustrated and believe I could be on something a lot better. After having people (not doctors) suggest that I should be on Tegretol (Carbamazepine) as it is the go-to drug for TN, I am seeing a doctor tomorrow about this.
However after researching both Tegretol and Neurontin (Gabapentin), I have noticed that both drugs are effective, though Tegretol has seemingly worse side effects than Neurontin.
Being quite a small and young person (~5ft maybe less, ~5st, 18yrs, 19 in 2 days) I am worried about the severity of these side-effects.
Amitriptyline's side-effects were very severe for me to begin with and are still troublesome now even though I am only on 30mg, so I feel like maybe Tegretol could be too harsh for me, considering some of the things I have read about it. I also have the Nexplanon contraceptive implant that has 2 years left, which is also putting me off taking Tegretol as there are known interactions between these drugs and I'd rather not have the implant taken out yet.
I feel as though I am constantly being pressured by my family and boyfriend to start taking Tegretol, however I feel as though Neurontin could be better. I would really appreciate hearing what some of you other people would say about either of these treatments.
Thank you 
0 likes, 8 replies
caryl33332 georgia18769
Posted
It's good that your are doing research on the drugs so you know what you are getting into. The truth of the matter is that all these drugs have some kinds of side effects. The key is to find which one will work best for you with the least amount of negative effects.
I was on carbamazepine (Tegretol) for about 7 years and had to stop because it started effecting my kidneys. At the time I tried several drugs, but the TN was way out of control and I opted for the MVD which gave me complete relief for 5 years. I had a second MVD, but it lasted only one year. I now take Lurica (pregabalin), 450 mg daily though I am having breakthrough pain. My neurologist said to go to 600 mg which I have not done yet since Lyrica makes me tired. However, I am about to up the dose.
My advice to you is to keep doing what you are doing...but know you might have to try different drugs until you hit on the one that works for you. Tegretol is very effective in treating trigeminal neuralgia and usually is the first drug prescribed.
One other suggestion. Why don't you download some material on trigeminal neuralgia and give it to your family to read. They should also read about these drugs and how they can affect one's liver and kidneys. A good place to find materials is The Facial Pain Association TNA.
georgia18769 caryl33332
Posted
I know that I will probably have to try different things before finding what suits me, but I'm just worrying about not being able to find something that won't have to change too much over the next few years. I'm currently in my first year of university and this is all very stressful for me, especially with a number of exams coming up.
Something that also worried me about Tegretol was how it can affect the liver since when I was younger I had a case of jaundice, of which I don't know much about unfortunately. I'm not sure if this could affect what I'm given.
Thank you for your suggestions, I will try doing that as I don't think my explanation of TN was enough and I doubt they've looked it up.
Do you think it could be worth trying Neurontin first?
I may just have to wait and see what the doctor says tomorrow, however they never seem to help much where I am.
caryl33332 georgia18769
Posted
I think you should have a really good talk with your doctor. If the Neurontin is effective in treating your TN, well that's great.
As I mentioned before I was on one drug for 7 years (Tegretol) which was increased gradually over those years. I started out at 200mg per day. When I stopped I was taking 1200mg per day.
You might want to talk to your doctor about micro-vascular decompression with a craniotomy. For some people, the problem is fixed. But for others, such as myself, there was no lasting effect. The reason I mention this is you should look at all of your option.
There are other procedures each with their own success rates and associated concerns. You are young and so it would be nice if you didn't have to rely on drugs. But again, you should be fully informed before you and your doctor makes a decision. In addition, you should consult with a neurologist and a neurosurgeon for informational purposes.
Glor888 georgia18769
Posted
Im sorry to hear you have got TN and at such a young age too.
I first suffered with TN over twenty years ago and my Dr finally prescribed me with Tegretol. I had terrible nausea at first but after a couple of weeks or so the nausea subsided and I was fine. Ever since then I was always put on Tegretol plus a small dosage of Amitriptyline at night.
Unfortunatley after I had a six yr break from TN, and I was automatically put on Tegretol, I discovered it didn't work this time around. So I was put on different medications one of which was Gabapentine as well as Amitripyline, but I had very bad side effects.
Eventually after suffering with pain for two months I was put on Pregabalin. At first it was only 25mg twice a day, hardly took the edge off the pain, but I had to wait as you can only increase the dosage at 25mg at a time. I was on 200mg a day for a short while then I felt the TN breaking through so my dosage is now 250mg a day.
Everybody is different so what works for one doesn't necessary mean it will work for another. Even people's dosages are different.
I would personally discuss the options with your Dr first seeing as you dont want anything to interfere with your contraceptive implant.
I agree with Cary all drugs have some sort of side effects near enough. But again check with your Dr first before you decide.
Hope everything works out ok for you and please let us know how you get on.
Best regards
Gloriana
michael127 georgia18769
Posted
georgia18769
Posted
So yesterday at the doctors I got prescribed Gabapentin, so I am currently (slowly, 300mg up to 900mg a day) starting to take these alongside Amitriptyline, as I have exams coming up and believe I may be relying on them to help me sleep.
Thank you all for giving me some more insight into what I need to be thinking about in terms of future treatments etc. All your comments are helping me cope with this a lot better.
I am hoping that gabapentin will work for me, and I also hope that you are all staying well too.
Also, to Michael, I have had an MRI scan a few months back which came back unremarkable, which is what led the ENT specialist to the TN diagnosis.
michael127 georgia18769
Posted
georgia18769 michael127
Posted
Thank you very much!
And it has been quite tough for me, I believe I have had this pain for around 7 years and have been unable to find an exact trigger. It almost seems as though it just hurts when it wants to and can go on for days at a time.
I've had a lot of doctors over those 7 years looking in my ear and all sorts, only to be told that they didn't know what it was or what it could be. I had to try and ignore it until I started trying to convince doctors again last year that something seemed really wrong as the pain would never let up or be helped with normal painkillers.
So I have still been unable to find a trigger, as it feels as though anything can start it. Some days I could wash my hair and touch around my ear and it would be fine, but then other days I could do the same and then be in pain for the whole day. I feel like this is the same with everything, even just going outside when it's windy.
I actually don't think I mentioned this before, but the pain isn't in my face, it's more like an earache (left side) but sometimes it will spread to my jaw and a little bit around the ear too.