I wonder all these medications - gabapentin, carbamazepine etc. - do they at all treat the problem, and work to cure it? They only seem to numb the pain so you don't feel the stings and shocks. Is there really a cure? Can this pain go away?
There is no cure as of yet. From what I understand, most cases end in surgery, or multiple surgeries. Which also doesn't cure it apparently. I take 12 pills a day for this (3 meds) and it's already starting to not work as well. Ive already been on everything else. I now have a referral to the neurosurgeon
I'm so sorry to hear this!! I wish I could tell you, "hang on, there'll be light at the end of the tunnel". But I know there's slim chance that the tunnel will have an end. I nevertheless wish your journey becomes easier with less interruptions from this absolute abomination of a condition.
I have been taking pregabalin 100mgs, 3-4 times a day. It dulls it. I asked my doc if we could try the tegretol, but he says that if the pregabalin is working we shouldn't change it. It's not working.. I'm at max allowed dosage and it dulls it. So I just got word I can go a bit higher on it. But yeah, it makes it less sharp, I don't get that just been stabbed in the jaw/cheek feeling as much. But it still hurts almost all the time.
Meds are different for everyone but for me tegretol made me feel like I’d had a lobotomy - it worked but my quality of life was non existent, I’d just sit and stare into space for hours on end. I couldn’t think straight and I constantly started talking and then forgot what I was saying. That being said I have learned that with TN you have to really advocate for yourself and what you need as it’s often misunderstood.
I was on oxcarbazepine for 10 years. It completely got rid of the pain... when I wasn't forgetting to take it. It stopped working recently (I had to build a tolerance at some point I suppose). I'm now on carbamazepine 200mg. It's taking the edge off. The stabs still feel like they are penetrating, but it like I'm half Numb to it... I'm still in the "give it time to work" phase, but I think I need an increase. I can also feel it block some.. idk how to describe this one. It feels like it wants to hurt. It wants to electrocute me, but the medicine blocks it. Sometimes I wait for it, and go "oh!... ok"
Also, I'm medicated, so if none of that made sense... I apologize.
I’ve been on gabapentin, carbamazepine, lamotrigine and baclofen for years. That took the edge off for awhile. The drugs slowly became less effective and I opted for MVD surgery a year ago. Surgery was only partially successful but I was still on all the drugs. A week ago I had balloon compression surgery. Still numb and waiting to see if successful and I can get off the drugs
I'm on Pregabalin/Lyrica and that's what I've found. I think it also likely tricks your brain in a sense, into thinking there's no pain, and it stops or mutes the misfiring of nerves. For me it also prevents the head and neck muscles from getting as tense as they used to. That used to cause me the worst pain.
Tylenol & Codeine also work on brain signals. I take Tylenol 3s (with codeine) when the pain starts becoming severe, and it usually works. I guess they work together really well for me. I just wish the Pregabalin didn't make me so physically sluggish.
I have had that feeling like a very mild tension or pressure without the pain sometimes. I think it usually happens at the very start of symptoms, or as the most recent dosage hasn't quite taken effect yet.
I'm on 600mg 4x a day of gabapentin. My dose is higher because I've been taking it for years. It's one of the only ones I respond to for pain. I've tried some of the others for other conditions and couldn't take them due to side effects. I don't really have any side effects with gabapentin. Each time a dose is increased it takes time adjusting and the sleepiness will go away. I also take baclofen. Baclofen is for this and other conditions. Plan for room in increased as you age. Most Drs regardless what you have go by that they're planning til your elderly. I'm 48. My expected lifespan is 51 for what I have. My Drs still are leaving room on the plan I'll live to be elderly. I don't think I will but it's good to have the positive thoughts.
I wonder all these medications - gabapentin, carbamazepine etc. - do they at all treat the problem, and work to cure it? They only seem to numb the pain so you don't feel the stings and shocks. Is there really a cure? Can this pain go away?
There is no cure as of yet. From what I understand, most cases end in surgery, or multiple surgeries. Which also doesn't cure it apparently. I take 12 pills a day for this (3 meds) and it's already starting to not work as well. Ive already been on everything else. I now have a referral to the neurosurgeon
I'm so sorry to hear this!! I wish I could tell you, "hang on, there'll be light at the end of the tunnel". But I know there's slim chance that the tunnel will have an end. I nevertheless wish your journey becomes easier with less interruptions from this absolute abomination of a condition.
I have been taking pregabalin 100mgs, 3-4 times a day. It dulls it. I asked my doc if we could try the tegretol, but he says that if the pregabalin is working we shouldn't change it. It's not working.. I'm at max allowed dosage and it dulls it. So I just got word I can go a bit higher on it. But yeah, it makes it less sharp, I don't get that just been stabbed in the jaw/cheek feeling as much. But it still hurts almost all the time.
Meds are different for everyone but for me tegretol made me feel like I’d had a lobotomy - it worked but my quality of life was non existent, I’d just sit and stare into space for hours on end. I couldn’t think straight and I constantly started talking and then forgot what I was saying. That being said I have learned that with TN you have to really advocate for yourself and what you need as it’s often misunderstood.
Actually - tegretol prolonged release was good, far far less side effects
I was on oxcarbazepine for 10 years. It completely got rid of the pain... when I wasn't forgetting to take it. It stopped working recently (I had to build a tolerance at some point I suppose). I'm now on carbamazepine 200mg. It's taking the edge off. The stabs still feel like they are penetrating, but it like I'm half Numb to it... I'm still in the "give it time to work" phase, but I think I need an increase. I can also feel it block some.. idk how to describe this one. It feels like it wants to hurt. It wants to electrocute me, but the medicine blocks it. Sometimes I wait for it, and go "oh!... ok" Also, I'm medicated, so if none of that made sense... I apologize.
I know exactly what you mean about the pain - and also when writing my post I thought “I bet this makes no sense, too medicated”
I honestly don't know how I make I through an 8 hour shift at work. These people have to think I'm bat shit crazy.
I’ve been on gabapentin, carbamazepine, lamotrigine and baclofen for years. That took the edge off for awhile. The drugs slowly became less effective and I opted for MVD surgery a year ago. Surgery was only partially successful but I was still on all the drugs. A week ago I had balloon compression surgery. Still numb and waiting to see if successful and I can get off the drugs
I'm on Pregabalin/Lyrica and that's what I've found. I think it also likely tricks your brain in a sense, into thinking there's no pain, and it stops or mutes the misfiring of nerves. For me it also prevents the head and neck muscles from getting as tense as they used to. That used to cause me the worst pain. Tylenol & Codeine also work on brain signals. I take Tylenol 3s (with codeine) when the pain starts becoming severe, and it usually works. I guess they work together really well for me. I just wish the Pregabalin didn't make me so physically sluggish. I have had that feeling like a very mild tension or pressure without the pain sometimes. I think it usually happens at the very start of symptoms, or as the most recent dosage hasn't quite taken effect yet.
Nucynta and gabapentin
I'm on 600mg 4x a day of gabapentin. My dose is higher because I've been taking it for years. It's one of the only ones I respond to for pain. I've tried some of the others for other conditions and couldn't take them due to side effects. I don't really have any side effects with gabapentin. Each time a dose is increased it takes time adjusting and the sleepiness will go away. I also take baclofen. Baclofen is for this and other conditions. Plan for room in increased as you age. Most Drs regardless what you have go by that they're planning til your elderly. I'm 48. My expected lifespan is 51 for what I have. My Drs still are leaving room on the plan I'll live to be elderly. I don't think I will but it's good to have the positive thoughts.