[NT User]

I have had TN since 2002 after a Root Canal but this has nothing to do with TN as it we did the process of elimination.

I was taking Carbamazepine 200mg and it seemed to solve all problems with no pain and no side effects.

The pain is back now, its not that bad as others describe. My pain is on my gum, only 1 spot. Tingling/burning. I would call this a discomfort but I still want to get rid of it. It can get frustrating.

I am on 600mg now and helps a little bit but most of the day the pain is there.

My Neurosurgeon does not recommend MVD at this point because of my age and the severity of of my pain. He thinks that we can fix this with meds.

MVD is very risky.

[Mylastnerve]

Hi NT,
It sounds like you are weighing whether to increase your medication or not. That is a common thing for us with TN - whether to put up with sometimes significant side effects in order to reduce the pain. You are not alone on that one. Sometimes it is helpful to try a combination of 2 different meds, or another type of med. I take Oxcarbazepine, a cousin of your medication. In addition to that, I take another anti-seizure med, gabapentin. I find gabapentin fairly tolerable. Cousin to gabapentin is Lyrica, which also can work. I also take an anti-depressant, nortriptyline. Other people here take it's cousin, amitriptyline. So there are some basic things that doctors will try, some anti-sezure, some antidepressant. There are many other meds besides these that people find helpful.
My first medication was the nortriptyline. I felt that it was really helpful at first, and the side effects were minimal.
So, if you need more relief, talk to your doctor - it's possible, at your level, to get some more relief with fairly minimal side effects.
I'm sorry that you have to deal with this - but you are fortunate to have pain that is more a discomfort than paralizing (not to minimize it, cause it can be a real bother!!). But it is good to stay on top of it nonetheless so that is stays low.
I hope that this is helpful,
Lily

[easygoing]

hello and first let me say welcome and also, I am sorry you are having problems.
it is not uncommon with TN for your medication to have to be adjusted. I found that I would be put on something and it would work for a while and then I would seem to build a tolerance and the pain would start coming back. I would continually have to have another drug added or increase a dose. eventually all the anti seizure drugs and anti depressants quit working for me.
there are many that are able to use the drugs to treat their Tn successfully, but do need adjustments and have to adjust to the side effects.
I am curious as to your age and why the near said that would be a reason to not have an MVD. I am 47 and I did have an MVD, In fact I had 2 MVD surgeries and they did find compressions and it did greatly help with my TN pain. I still have some TN pain when I have my teeth worked on, but it calms down after about a mo th or two. I recently had to have a root canal and new crown and it is acting up at the moment. I had 4 root canals and 3 crowns that I did not need before being properly diagnosed with TN. I just had to have another root canal because one of the previous crowns did not fit properly and it caused an abcess.
I would recommend that even if you really like your near that you get a second opinion from another near that specializes in TN. It is always a great idea to hear another opinion on what drugs might work...
I also am personally a big believer in MVD. it is a major surgery and yes it is hard, but if you could be free from pain without drugs and side effects. Not everyone is a good candidate and you have to weigh the risks and benefits. My first near told me I was not a candidate and I should never have an MVD. I finally decided to get second and third opinions and I am so glad I did.
Please let me know if I can help you in anyway, but I may not respond for about a week or two. I am leaving at end of week for 2 weeks in st Lucia.
I haven't been on a vacation in over a year.
good luck.
lisa

Originally Posted by NT User

I have had TN since 2002 after a Root Canal but this has nothing to do with TN as it we did the process of elimination.

I was taking Carbamazepine 200mg and it seemed to solve all problems with no pain and no side effects.

The pain is back now, its not that bad as others describe. My pain is on my gum, only 1 spot. Tingling/burning. I would call this a discomfort but I still want to get rid of it. It can get frustrating.

I am on 600mg now and helps a little bit but most of the day the pain is there.

My Neurosurgeon does not recommend MVD at this point because of my age and the severity of of my pain. He thinks that we can fix this with meds.

MVD is very risky.

[Doodle bug7]

TN is a hard one to get control of. Here's this and there is that and now lets try this and on it goes. I've been on meds
for quite some time. My Neuro just increased my Gabapintin
to 3600 each day, but this med doesn't travel alone. I also
take Lyrica, Amitriptyine, tramadol, paxil,and the Gabapinten etc. This is six yrs. after a failed MVD. and two Brain surgeries at Mayo clinic.
They had to sever my trigeminal nerve as a last resort. What I got in return was a numb left side of my face and that has a lot of issues on it's own. Anesthesia Delorosa, not TN pain but a different pain 24/7 that gets quite vicious. There is no surgery to get it better and med's help some but it seems like this A.D. pain does what it want's anyway. You would think that since the face is numb, how can it have pain? It just does. A.D. is the
dreaded complication after a failed MVD
Do your homework on TN before making any decisions on this.When I had my MVD, I thought that it would be the answer to my prayers. Not!
Some people have an MVD and don't have any problems at all. Bless you, Doodle bug7

[NT User]

I took 600mg before sleep last night but I am on 800mg starting today. 400mg in the morning and 400mh at night so far it has solved about 65% of the pain, pretty good but it did made more drowsy.

Originally Posted by Mylastnerve

Hi NT,
It sounds like you are weighing whether to increase your medication or not. That is a common thing for us with TN - whether to put up with sometimes significant side effects in order to reduce the pain. You are not alone on that one. Sometimes it is helpful to try a combination of 2 different meds, or another type of med. I take Oxcarbazepine, a cousin of your medication. In addition to that, I take another anti-seizure med, gabapentin. I find gabapentin fairly tolerable. Cousin to gabapentin is Lyrica, which also can work. I also take an anti-depressant, nortriptyline. Other people here take it's cousin, amitriptyline. So there are some basic things that doctors will try, some anti-sezure, some antidepressant. There are many other meds besides these that people find helpful.
My first medication was the nortriptyline. I felt that it was really helpful at first, and the side effects were minimal.
So, if you need more relief, talk to your doctor - it's possible, at your level, to get some more relief with fairly minimal side effects.
I'm sorry that you have to deal with this - but you are fortunate to have pain that is more a discomfort than paralizing (not to minimize it, cause it can be a real bother!!). But it is good to stay on top of it nonetheless so that is stays low.
I hope that this is helpful,
Lily

[NT User]

I am 32 but I am still able to function my daily life. My pain is nowhere as near as how others describe. Its more a like discomfort but nevertheless the pain, its a pinching/burning sensation and can get frustrating if it stays for weeks.

So far I've seen one Neurosurgeon. I will most likely see another one soon.

I thought TN has nothing to do with dental work? Is this a myth or reality?

Originally Posted by easygoing

hello and first let me say welcome and also, I am sorry you are having problems.
it is not uncommon with TN for your medication to have to be adjusted. I found that I would be put on something and it would work for a while and then I would seem to build a tolerance and the pain would start coming back. I would continually have to have another drug added or increase a dose. eventually all the anti seizure drugs and anti depressants quit working for me.
there are many that are able to use the drugs to treat their Tn successfully, but do need adjustments and have to adjust to the side effects.
I am curious as to your age and why the near said that would be a reason to not have an MVD. I am 47 and I did have an MVD, In fact I had 2 MVD surgeries and they did find compressions and it did greatly help with my TN pain. I still have some TN pain when I have my teeth worked on, but it calms down after about a mo th or two. I recently had to have a root canal and new crown and it is acting up at the moment. I had 4 root canals and 3 crowns that I did not need before being properly diagnosed with TN. I just had to have another root canal because one of the previous crowns did not fit properly and it caused an abcess.
I would recommend that even if you really like your near that you get a second opinion from another near that specializes in TN. It is always a great idea to hear another opinion on what drugs might work...
I also am personally a big believer in MVD. it is a major surgery and yes it is hard, but if you could be free from pain without drugs and side effects. Not everyone is a good candidate and you have to weigh the risks and benefits. My first near told me I was not a candidate and I should never have an MVD. I finally decided to get second and third opinions and I am so glad I did.
Please let me know if I can help you in anyway, but I may not respond for about a week or two. I am leaving at end of week for 2 weeks in st Lucia.
I haven't been on a vacation in over a year.
good luck.
lisa

[NT User]

I am taking 400mg of Carbamazepine and 400mg at night. This seems to doing quite well. 80% pain reduced.

[lola white]

[QUOTE=NT User;706584]I have had TN since 2002 after a Root Canal but this has nothing to do with TN as it we did the process of elimination.

I was taking Carbamazepine 200mg and it seemed to solve all problems with no pain and no side effects.

The pain is back now, its not that bad as others describe. My pain is on my gum, only 1 spot. Tingling/burning. I would call this a discomfort but I still want to get rid of it. It can get frustrating.

I am on 600mg now and helps a little bit but most of the day the pain is there.
[FONT="Arial Black"]
My Neurosurgeon does not recommend MVD at this point because of my age and the severity of of my pain. He thinks that we can fix this with meds.

MVD is very risky I KNOW THIS SOUNDS TOO EASY BUT ACTUALLY IT HELPED ME WITH MY MOUTH PAIN THAT WAS IN MY TEETH AND GUMS AND THE ROOF OF MY MOUTH. I PURCHASED SOME LIQUID ORAGEL STUFF AND CARRIED IT EVERYWHERE WITH ME. I KEPT ONE IN MY PURSE AND ONE IN THE BATHROOM. I USED A Q TIP TO PUT IT ON AND FOR HRS IT REALLY HELPED THE PAIN. YOU CAN JUST USE YOUR FINGER AS WELL. WORTH A TRY.BOTTLE SAYS YOU CAN APPLY 4 TIMES A DAY I THINK. I HAVE HAD THE SURGERY AND I STILL HAVE TO USE IT A LITTLE.

[bluemom]

Thanks, Lola! I was just wondering the other day if Oragel would be helpful!

Bluemom