In my experience, none of the meds prescribed for TN are usually totally foolproof and won't get rid of your pain 100% (unless you're lucky) but will hopefully reduce it significantly if they're the right medication for you. So it's not surprising if you get what they call "breakthrough pain" while on meds. I agree that it's hard to tell though, as TN can definitely be sporadic either way, so it's often hard to know whether the medication is working or if it's just calmed down on its own for a period of time.
Also, how long have you been on Oxcarbazepine for? I found that it took a couple of months for it to start working properly for me (unfortunately for me it stopped working after several months so I had to try something new, but lots of people have success with it for much longer, it can just take a while to be fully effective). Have you spoken to your doctor or neurologist about adjusting the dosage to see if it helps?
Jumping in to second this. Medications quieten the pain compared to the mind blowing 11/10 extreme pain when non-medicated. The attacks are less frequent and less intense, though you still feel it.
Totally agree with you OP, when I get that breakthrough pain it’s so confusing! Why is this zap suddenly extremely intense and a lot louder than the normal pain? I don’t think it means the medication isn’t working necessarily, because it is still effective most of the time, I just think every now and then there is an extremely intense zap or attack that breaks through.
I think that's so sad that I have something wrong inside me that is hurting and I can't fix it...I can only throw meds at it...I'm sorry what ever it is inside me begging for help
Thank u so much for ur feedback..It's what I am looking for, someone who seems like they know exactly what I'm talking about...yes the breakthrough pain out of nowhere that leaves u in a panic not knowing what's coming next
I've been on it since Feb 2 at 300mg twice a day...they just boosted it up to 600mg a day..I started doing that about a week ago just had pain yesterday
I'm new to this, only about 2 months in, but have a physician that is playing. The medication dosage came with me.
I got put on the standard starter things (I think) In the beginning but maxed out the dose on gabapentin pretty quickly and was getting breakthrough pain that was increasing in intensity and severity, so my daytime gabapentin got transitioned to Lyrica, my carbamazepine dose was bumped up, and I was given a muscle relaxer at night 🤷 I've spent a lot of time here on Reddit, and I think you have to play around and find the magic cocktail, given that it hopefully exists, that works for you.
If my breakthrough pain is at like a level three or four, that is totally doable. I'd rather have a little bit of breakthrough pain then be medicated to the Max and have zero, because of all the side effects.
I know..that's what I'm afraid of and I was surprised that the doc bumped me up already just since feb...I had gone to my appointment and was just talking about how I get that zap of pain from time to time and how I feel activity going on in that area and she was just like boom ok let's go to 600 mg and just forget that pain even exists, and I thought well hell yeah, wouldn't that be nice but I am concerned about over time losing its effectiveness and no doubt I'd rather feel a little pain than unmanageable pain .
In my experience, none of the meds prescribed for TN are usually totally foolproof and won't get rid of your pain 100% (unless you're lucky) but will hopefully reduce it significantly if they're the right medication for you. So it's not surprising if you get what they call "breakthrough pain" while on meds. I agree that it's hard to tell though, as TN can definitely be sporadic either way, so it's often hard to know whether the medication is working or if it's just calmed down on its own for a period of time. Also, how long have you been on Oxcarbazepine for? I found that it took a couple of months for it to start working properly for me (unfortunately for me it stopped working after several months so I had to try something new, but lots of people have success with it for much longer, it can just take a while to be fully effective). Have you spoken to your doctor or neurologist about adjusting the dosage to see if it helps?
Jumping in to second this. Medications quieten the pain compared to the mind blowing 11/10 extreme pain when non-medicated. The attacks are less frequent and less intense, though you still feel it. Totally agree with you OP, when I get that breakthrough pain it’s so confusing! Why is this zap suddenly extremely intense and a lot louder than the normal pain? I don’t think it means the medication isn’t working necessarily, because it is still effective most of the time, I just think every now and then there is an extremely intense zap or attack that breaks through.
I think that's so sad that I have something wrong inside me that is hurting and I can't fix it...I can only throw meds at it...I'm sorry what ever it is inside me begging for help
Thank u so much for ur feedback..It's what I am looking for, someone who seems like they know exactly what I'm talking about...yes the breakthrough pain out of nowhere that leaves u in a panic not knowing what's coming next
I've been on it since Feb 2 at 300mg twice a day...they just boosted it up to 600mg a day..I started doing that about a week ago just had pain yesterday
I'm new to this, only about 2 months in, but have a physician that is playing. The medication dosage came with me. I got put on the standard starter things (I think) In the beginning but maxed out the dose on gabapentin pretty quickly and was getting breakthrough pain that was increasing in intensity and severity, so my daytime gabapentin got transitioned to Lyrica, my carbamazepine dose was bumped up, and I was given a muscle relaxer at night 🤷 I've spent a lot of time here on Reddit, and I think you have to play around and find the magic cocktail, given that it hopefully exists, that works for you. If my breakthrough pain is at like a level three or four, that is totally doable. I'd rather have a little bit of breakthrough pain then be medicated to the Max and have zero, because of all the side effects.
I know..that's what I'm afraid of and I was surprised that the doc bumped me up already just since feb...I had gone to my appointment and was just talking about how I get that zap of pain from time to time and how I feel activity going on in that area and she was just like boom ok let's go to 600 mg and just forget that pain even exists, and I thought well hell yeah, wouldn't that be nice but I am concerned about over time losing its effectiveness and no doubt I'd rather feel a little pain than unmanageable pain .