Management with medication

I’ve tried carbomazapine and gabapapentin for the pain but neither have controlled the pain and I have just been sensitive to all the possible side effects. I couldn’t function properly, I was drained and it changed me as a person due to all the other physical and mental side effects… I’m due to start pregabalin before I see the neurosurgeon again but I’m afraid I will suffer like I did with the gabapentin. Whilst I was on carbomazpine, I had other medications being changed which I don’t think helped show the true side of the medication. Does anyone have any advice and experiences of their own?? Thanks
Chloe - Age 18 (Manchester, UK)

Hi Chloe.
Just wondering how long u gave each of these medications to work. I know sometimes the side effects are too much but sometes your body will gradually get used to the med and the side effects will lessen. None of the meds used for this are ideal. Unfortunately it is sometimes a case of finding a balance between pain relief and function.
Do u have type 1 or type 2? Have u tried a tricyclic anti depressant? Both amitriptyline and nortriptyline have helped me a lot.

Hi chloe.

Unfortunately most of the medication to help you with this will give side affects. Like justjane said it’s all about finding the right balance and letting your body adjust to the medication. I was changed from tegratol to lyrica (pregabalin) and was upped to the max dose and given amitriptyline by night. This completely controlled my pain except for one or two flares which were nowhere near as bad as without them. It took me 6 weeks to adjust to them though. I was very stoned and sleepy for the first 3 weeks but it gradually got better. It really is about finding out just how much pain your willing to be in and just how long your going to give your meds a chance to work and your body to adjust.

Hope this helps a bit.

Hi Chloe, I too have a sensitivity to the drugs for this condition, the worst being from the anti-seizure drugs like oxcarbazipine and gabapentin. I found that I had been increasing the dosage too fast, and not giving my body long enough to get used to them. I found that using a weekly medication container, that I preloaded, helped me remember exactly how much I was taking and how long I had taken it. I usually think I’ve been on a med much longer than I actually have, especially when I have severe daily attacks of pain to cloud my judgement. Having my husband help me track how often I change each medication, and writing everything down, was also helpful in stabilizing my mess. I am gently, gently increasing the dosage of the oxcarbazipine, by a half tablet every 2 weeks at the most. I always increase on a weekend when I don’t have to be at work for a couple of days. That way, if it kicks my butt, I can decrease back down before I have to be at work on Monday morning. I’m still on a sub-therapeutic dose according to my doctor, but my attacks have subsided, so perhaps this is the right dose for my body. You need to gently do what your body will tolerate.

I agree with the comment that it depends on how much pain you are in. If you are having full on, daily TN attacks, who cares about being spacey or out of it? You won’t be able to work or interact anyway. Better to space out and sleep than be fully aware, so I would think it always depends on how bad your attacks are.


Hi justjane37! How long have you been on nortripyline and at what dose? Have you had any side effects? I was on it for ATN and reached 50mg each day.My doctor didn’t want me to go higher.I I was on that dose for a month and had a few good days ,now I’m wondering if I should have given myself longer on it especially as the only side effect was some weight gain.Thank you,Eileen

I have been up as high as 75mgs and as long as 25mgs. I have been on it for about a year and a half. My ATN really comes and goes so I always try to reduce when I am pain free for about six weeks. I was doing well enough last summer that I went off of it completely...working my way back up to 50mgs right now because things have not been good. This is my third winter in a row and they suck.

Side effects are weight gain and just a puffiness. It also affects my ability to complete detailed tasks. I find it harder to stay on track when I am on a higher dose. I am able to function fine but notice a difference in my work habits. Before I was on Nortriptyline I was on Amitriptyline and this one is way better. I am not pain free though. When TN wants to freak out it just goes right ahead and does that. Both of these meds have been my lifesavers though.

I find it really takes a good three weeks to a month to fully kick in and the side effects will lessen more in a couple of months. I work full time and have a young daughter. I am able to lead a great life--TN pain aside.

We are all different with these meds. If the side effects were ok I maybe would have tried to give it a bit longer but only you can make that decision. Like I said it does not take away all of the pain but when in a flare it makes the difference between somewhat manageable to ready to go to the ER. I have days, weeks and even months of no pain. It is hard to say if it is really the med through because my attacks do come and go.

It also calms anxiety down a bit for me and I find that it helps with sleep a lot.

Thanks justjane37!