I have been taking Tegretol for the last two months and it's been working fabulously.
Recently, however, I've been getting some escalating breakthrough pain.
I'm curious to know breakthrough pain comes and goes at varying intensity, or if it's a sign of the medication no longer working.
I appreciate your feedback and having Living with TN as a resource!
Thanks,
Erin
Hi Erin,
I usually would contact my doctor if I was experiencing breakthrough pain.
Usually increasing the dose slightly was all it took to get back to living pain free.
But make sure you discuss with your doctor.
It doesn’t mean that the med is no longer working, it just means that the dose needs to be increased.
If you’re at a very high dose already, then sometimes the doctor will suggest adding a second med to the mix, or changing your med all together.
(( hugs))
Mimi
Thanks Mimi. I will call my doctor. As you know, it's so hard not to think about the pain coming back and what tomorrow might bring.
I started it in August. Tapered up to 400mg a day. Since then I have increase 3 times because of breakthrough pain. I am currently taking 1200mg a day since Dec. 11th and so far it is keeping most of the pain away.
Thanks Donna. Have you discussed with your doc adding a med(s) to Teg? It's just so terrifying to think that it'll stop working so soon, it's was going so well and I was hoping my fight would've been over for a couple years. :(
i started with 200mg tegretol when first diagnosed in June 2012...i kept having to increase it every couple weeks because of more and more pain. Anyway, after a trip to the ER with severe breakthrough pain in October 2012, my dr increased the tegretol to 1200mg and added 900mg of Neurotin.
This combination seems to be working great. On the rare occassion that i have pain...such as during my period, i can take an extra 300mg of neurotin.
As i said, this seems to be the "right" combination for me..but i'm with you on the worrying about how long this is going to be effective. When i started on the 200mg of just tegretol, i was pain free too....for a while. It seems strange to me that it doesn't seem to be effective for very long.
Wishing you a pain free day..
~Mistee
I agree with Mimi, I needed 800mg per day to control my pain. any less and wham, it was back!
Hey, I have been on 1200mg a day for a year now, it had worked but recently I am developing knew discomfort in different areas so I may have to ask my neuro about new or additional meds.
Same thing here..started out on tegretol at a small dose and it worked like a charm at first....for about 2 months I was pain free on 400mgs then pain came back with avengence and the Doctor kept increasing but I got to 800mgs and had no relief just nasty side effects started. So then he cut me back to 600mgs and added gabapentin with it and it is beginning to give me some relief but not pain free yet....1200mgs of gabapentin and still increasing every other week trying to find the right combination. Thankfully no side effects yet from the gabapentin besides being tired...which I have learned to live with. Hoping to achieve a pain free life again soon.
I go see a neurosurgeon on Monday. I am going to ask him about all of this. I need to be able to function because I have to work though. Maybe he can give me something to take only as needed if I am having a bad attack. We will see Monday. :-)
ErinRenee said:
Thanks Donna. Have you discussed with your doc adding a med(s) to Teg? It's just so terrifying to think that it'll stop working so soon, it's was going so well and I was hoping my fight would've been over for a couple years. :(
I've been on tegretol since I was diagnosed and it works great for the pain, I'm just finding the fatigue really difficult to cope with. I'm currently on 800mg and only get pain if I blow my nose or anything else that requires a hard touch around that area. Depending on your dose I would ask for it to be increased if you find it worked well at first. I think you should do what you can to avoid adding another med if possible. Some people can cope with a mixture though, just depends on how they affect you.
Same here, I've been back & forth between 900mg and 1500mg of Tegretol since 2009. In good times there's an occasional ZAP if I forget a dose, or do an aggressive No-No with a trigger area. In breakthrough times, like today, I get 2, 5, 15 ZAPs a minute, for days or weeks, not even knowing what I did to deserve them. So now I'm on 1500mg, praying this episode goes away, then I'll creep down on the dose slowly. Gabapentin does nothing for me except make me loopy. Here's the thing that scares me: SO many sites say "often" medicines lose their effectiveness over time, and "usually" the symptoms get worse over time... But what do usually and often mean? Are surgical sites trying to scare me into surgery? I've already had an MVD. It worked for exactly 13 months. My neurologist says that if the meds work now, they ought to keep working. I just don't know. I'm so scared.
It’s all pot luck Scott, best to just think of today and not tomorrow with TN. There are many members who are managed and have been taking their meds for years. I have had Tn for seven years now. I peaked out pain wise about 4 years in. There are about a dozen meds to try so if one becomes ineffective, there are some to switch to. Also, after a 18 month break, my Neurontin has become effective again. I took Tegretol in between.
Hi Scott, yeah it's true that some meds you will develop a tolerance to though I'm not 100% sure if this is true for anti-convulsants, best ask your doctor about that one but I was told and have read that the longer you have TN the worse the episodes will become even after remissions.
I don't think surgical sites will be trying to scare you into surgery..they have nothing to gain from that (I don't think). I've not had any surgery myself, was only diagnosed in the last year and as nothing was found on my MRI they put it down as idiopathic. To be honest I can't see how nothing showed up given how painful it was in the beginning.
Your breakthrough pain sounds awful :( maybe would a good idea to stay on the higher dose for a good while before coming down even if you are pain free?
I would let your doctor know about the break thru pain. You might just need to go up a dose or add a boster to it like Balcofen.
I was not on this medication long, it ended up making my kidneys and liver deciding to shut down. I think it was about a month or two maybe. Before this happened. Sorry I’m not much help on this for you.
Hi, I noticed you said you get more pain during your period. I also get this is it a common Tn thing do you know? I noticed it a few months back but didn't think much of it , just thought it was coincidence. This site is so helpful seeing other peoples symptoms. Hope you're having a pain free day x
Mistee Humphreys Shelton said:
i started with 200mg tegretol when first diagnosed in June 2012...i kept having to increase it every couple weeks because of more and more pain. Anyway, after a trip to the ER with severe breakthrough pain in October 2012, my dr increased the tegretol to 1200mg and added 900mg of Neurotin.
This combination seems to be working great. On the rare occassion that i have pain...such as during my period, i can take an extra 300mg of neurotin.
As i said, this seems to be the "right" combination for me..but i'm with you on the worrying about how long this is going to be effective. When i started on the 200mg of just tegretol, i was pain free too....for a while. It seems strange to me that it doesn't seem to be effective for very long.
Wishing you a pain free day..
~Mistee
I started experiencing a lot of breakthrough pain on Tegretol alone. I was at 1600 mg per day and lowered it to 1000 mg, added in Trileptal (600 mg per day) and would take an additional 200 mg of Tegretol 3 times a week. This seemed to help control the zaps but I also have the severe burning pain in the right side of my face. Now I'm on Gabapentin (900 mg/day) and got rid of the Trileptal. It seems to be all trial and error at this point. I would talk to your doctor about changing dosage or maybe adding in a new medication. Good luck, I hope you find relief
Stephanie
Hi Jackie! Great/Wise advice - thank you. I've had TN since 2001, but today is only my 2nd day looking at this forum, and I can't tell you how happy you've made me... I have never ANYWHERE seen this concept of "peaking" out, which I (knock on wood) actually do feel happened for me between '08/'09, but have been afraid to take solace in, lest the Universe should slap me silly. Today is only "really bad" instead of "inconceivably brutal." Ofcourse you're right, I do know there are other meds out there, but I am very afraid of the idea of experimenting. The saying "Well, it can't get any worse!" is false for us. What's really cool too for me here is talking to someone else who knows what I'm dealing with. My friends, family, co-workers, and even doctors are like cartoons, while I have the reality.
Jackie said:
It's all pot luck Scott, best to just think of today and not tomorrow with TN. There are many members who are managed and have been taking their meds for years. I have had Tn for seven years now. I peaked out pain wise about 4 years in. There are about a dozen meds to try so if one becomes ineffective, there are some to switch to. Also, after a 18 month break, my Neurontin has become effective again. I took Tegretol in between.
I take 200mg of Tegretol daily and I have 100mg tabs for breakthrough. I was taking the chew tabs 1 100mg tabs, but they switched me to the higher 1 pill. My doctor was fabulous about finding out what was wrong right away. I'd told her the types of pain i was having and she knew what it was right away.
I have been given tramadol for the pain, not that it does well at all, but I tried something different today. Instead of taking a pain pill I take about 1.5-2.5 ml of infant tylenol and apply it to the inside of my cheek and gums and it seems to dull it. Over all the tegretol works good and isn't interactive with the meds I take for depression
I took varying doses of Tegretol over the last 6 years with good results until it finally quit working at 1800 mg/day last month. My doctor added 2400 mg/day of Neurontin, but my pain was still unbearable. That's when I knew it was time for surgery, which I had 4 weeks ago. Glad I did! I am now pain free. Please make sure you keep up your meds and see your Neuro if they seem to quit working. Sometimes it takes awhile to have surgery and you don't want to be in unbearable pain while you are waiting.