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 400mg now and helped a little bit. I am going 600mg now.
My Neurosurgeon does not recommend MVD at this point because of my age and the severity of this. He thinks that we can fix this with meds.
Yea, I agree with you. What did Carbamazepine do for you?
Well all meds come with Side effects but they go away at the maximum of 7 days. Most other have Drowiness which I can handle. I rather be Drowsy then have any other side effects listed. I can always drink caffiene you know.
Hi Imran,
I don’t think Bob meant that your pain bothered him, he was just making a comparison. From my conversations with him, he had a very severe negative reation to Carbamazepine. I mean really bad.
Hopefully the increase will work for you - has it been approved by your doctor?
I think that med changes or the addition of different meds could work for you. That’s what my doctor did in the beginning for me, anyway.
Good luck,
Lily
Hello, carbamazapine made me dizzy and sick, I am on gabepentine 900mg 3 times a day. I had a MVD, ended up with loss of hearing and my balance gone. Though I did have 2 wonderful pain free years. If you can get the meds to work for you stick to them. I have a constant dull ache in my cheek bone with flare ups every so often into my ear. This is different to before my operation. Sometimes I feel insane when the pain is bad. Bob is wonderful he can make me smile by some of comments, I always feel better for reading anything off him Margaret.
Lily said:
Hi Imran, I don’t think Bob meant that your pain bothered him, he was just making a comparison. From my conversations with him, he had a very severe negative reation to Carbamazepine. I mean really bad. Hopefully the increase will work for you - has it been approved by your doctor? I think that med changes or the addition of different meds could work for you. That’s what my doctor did in the beginning for me, anyway. Good luck, Lily
I am starting 800mg by tomorrow. Approved by my doctor of course. They are flexible and like to try what works.
I have not had any side effects maybe a slight drowsiness but I am also on other medications too.
Lily said:
Hi Imran, I don't think Bob meant that your pain bothered him, he was just making a comparison. From my conversations with him, he had a very severe negative reation to Carbamazepine. I mean really bad. Hopefully the increase will work for you - has it been approved by your doctor? I think that med changes or the addition of different meds could work for you. That's what my doctor did in the beginning for me, anyway. Good luck, Lily
Dizzy for how many days? Side effects usually go away from couple of days from starting point.
MVD sounds very risky it seems but for someone no long term complications.
Anyone had Gamma Knife? I heard thats even more risky.
Margaret Gladys Mills said:
Hello, carbamazapine made me dizzy and sick, I am on gabepentine 900mg 3 times a day. I had a MVD, ended up with loss of hearing and my balance gone. Though I did have 2 wonderful pain free years. If you can get the meds to work for you stick to them. I have a constant dull ache in my cheek bone with flare ups every so often into my ear. This is different to before my operation. Sometimes I feel insane when the pain is bad. Bob is wonderful he can make me smile by some of comments, I always feel better for reading anything off him Margaret. Lily said:
Hi Imran, I don't think Bob meant that your pain bothered him, he was just making a comparison. From my conversations with him, he had a very severe negative reation to Carbamazepine. I mean really bad. Hopefully the increase will work for you - has it been approved by your doctor? I think that med changes or the addition of different meds could work for you. That's what my doctor did in the beginning for me, anyway. Good luck, Lily
Carbamazepine gave me Toxic Epidermal Necrolysis, 2nd degree burns over 60% of my body. My profile pictures show the ‘skin’ burns; I destroyed all pictures of my oral and nasal cavities. I couldn’t stand to see them. For several months I watched as my skin ‘sloughed off’; having to go to the ER to have a shoe removed because dried blood had glued it on.
I have a lifelong regiment of skincare procedures and precautions because of this so-called ‘side effect’. I’m typing with cotton gloves, as my hands are coated with ‘CeraVe’, an ointment. Year round, they still crack and bleed.
For 6 months, I was taking Cyclosporine and at-home IV Steroids. I could take no other medications. Nothing.
Since there aren’t any rules, I have to make this a game, I call it ‘Pain-Diversion’. I wish we could be spectators, it’s a lousy game.
My struggles are no greater than anyones and everyones pain bothers me, as it diverts mine. bob
Imran said:
Yea, I agree with you. What did Carbamazepine do for you?
Well all meds come with Side effects but they go away at the maximum of 7 days. Most other have Drowiness which I can handle. I rather be Drowsy then have any other side effects listed. I can always drink caffiene you know.
Your side effects sound so horribe! skin burns are not listed . They are FDA approved though! Did you sue?
You mean after you took 100 mg of Carbamazepine?
Bob Snodgrass said:
Carbamazepine gave me Toxic Epidermal Necrolysis, 2nd degree burns over 60% of my body. My profile pictures show the 'skin' burns; I destroyed all pictures of my oral and nasal cavities. I couldn't stand to see them. For several months I watched as my skin 'sloughed off'; having to go to the ER to have a shoe removed because dried blood had glued it on.
I have a lifelong regiment of skincare procedures and precautions because of this so-called 'side effect'. I'm typing with cotton gloves, as my hands are coated with 'CeraVe', an ointment. Year round, they still crack and bleed.
For 6 months, I was taking Cyclosporine and at-home IV Steroids. I could take no other medications. Nothing.
Since there aren't any rules, I have to make this a game, I call it 'Pain-Diversion'. I wish we could be spectators, it's a lousy game.
My struggles are no greater than anyones and everyones pain bothers me, as it diverts mine. bob
Imran said:
Yea, I agree with you. What did Carbamazepine do for you?
Well all meds come with Side effects but they go away at the maximum of 7 days. Most other have Drowiness which I can handle. I rather be Drowsy then have any other side effects listed. I can always drink caffiene you know.
your pain may or may not be a direct cause from the root canal. it would be useful to obtain a “thin slice” MRI to see if you have a vascular compression on your nerve. if you do, then you can assume the pain is TN.
however, many patients are misdiagnosed as having TN when in fact they have neuropathic pain caused by trauma, often something dental such as a root canal. your pain may have been controlled with 200mg of Tegretol, but neuropathic pain can worsen over time, and so-called “breakthrough pain” can occur. this may or may not be what you experience now which requires you to increase your dosage of medication.
it is vitally important to have a correct diagnosis because the diagnosis dictates the treatment we receive. all surgical treatments are contraindicated for neuropathic pain. this includes an MVD. medications are the mainstay of treatment for neuropathic pain. many times, misdiagnosed patients end up having inappropriate treatment which unfortunately made their neuropathic pain worse.
symptoms of neuropathic pain are generally burning and tingling. the nerve still works, but in an errant way, so funny sensations are usually felt; like tingling, a crawling sensation or even numbness. some TN patients can have these symptoms, but it is unusual and usually indicates a severe compression of the nerve; so much so that the internal fibers of the nerve are completely disrupted (a hallmark of neuropathic injury). again, this is where a thin-slice MRI would be very useful to possibly help answer some questions about your pain.
i hope this has been informative and helpful. please refrain from anything destructive until a secure and solid diagnosis can be established. i am not a medical doctor; please consult your own about what i have said here.
good luck,
vesper
Imran said:
Your side effects sound so horribe! skin burns are not listed . They are FDA approved though! Did you sue?
You mean after you took 100 mg of Carbamazepine?
Bob Snodgrass said:
Carbamazepine gave me Toxic Epidermal Necrolysis, 2nd degree burns over 60% of my body. My profile pictures show the ‘skin’ burns; I destroyed all pictures of my oral and nasal cavities. I couldn’t stand to see them. For several months I watched as my skin ‘sloughed off’; having to go to the ER to have a shoe removed because dried blood had glued it on.
I have a lifelong regiment of skincare procedures and precautions because of this so-called ‘side effect’. I’m typing with cotton gloves, as my hands are coated with ‘CeraVe’, an ointment. Year round, they still crack and bleed.
For 6 months, I was taking Cyclosporine and at-home IV Steroids. I could take no other medications. Nothing.
Since there aren’t any rules, I have to make this a game, I call it ‘Pain-Diversion’. I wish we could be spectators, it’s a lousy game.
My struggles are no greater than anyones and everyones pain bothers me, as it diverts mine. bob
Imran said:
Yea, I agree with you. What did Carbamazepine do for you?
Well all meds come with Side effects but they go away at the maximum of 7 days. Most other have Drowiness which I can handle. I rather be Drowsy then have any other side effects listed. I can always drink caffiene you know.
Mine was from a root canal also. I have T.N.P. My neurosurgeon sent me to a pain clinic. That has really helped for I have taken so many medications. I still have the option for one surgery. I would prefer not to unless I never find relief. I have had pain 24/7 since 2005.
vesper venustas said:
hi Imran,
your pain may or may not be a direct cause from the root canal. it would be useful to obtain a “thin slice” MRI to see if you have a vascular compression on your nerve. if you do, then you can assume the pain is TN.
however, many patients are misdiagnosed as having TN when in fact they have neuropathic pain caused by trauma, often something dental such as a root canal. your pain may have been controlled with 200mg of Tegretol, but neuropathic pain can worsen over time, and so-called “breakthrough pain” can occur. this may or may not be what you experience now which requires you to increase your dosage of medication.
it is vitally important to have a correct diagnosis because the diagnosis dictates the treatment we receive. all surgical treatments are contraindicated for neuropathic pain. this includes an MVD. medications are the mainstay of treatment for neuropathic pain. many times, misdiagnosed patients end up having inappropriate treatment which unfortunately made their neuropathic pain worse.
symptoms of neuropathic pain are generally burning and tingling. the nerve still works, but in an errant way, so funny sensations are usually felt; like tingling, a crawling sensation or even numbness. some TN patients can have these symptoms, but it is unusual and usually indicates a severe compression of the nerve; so much so that the internal fibers of the nerve are completely disrupted (a hallmark of neuropathic injury). again, this is where a thin-slice MRI would be very useful to possibly help answer some questions about your pain.
i hope this has been informative and helpful. please refrain from anything destructive until a secure and solid diagnosis can be established. i am not a medical doctor; please consult your own about what i have said here.
good luck,
vesper
Imran said:
Your side effects sound so horribe! skin burns are not listed . They are FDA approved though! Did you sue?
You mean after you took 100 mg of Carbamazepine?
Bob Snodgrass said:
Carbamazepine gave me Toxic Epidermal Necrolysis, 2nd degree burns over 60% of my body. My profile pictures show the ‘skin’ burns; I destroyed all pictures of my oral and nasal cavities. I couldn’t stand to see them. For several months I watched as my skin ‘sloughed off’; having to go to the ER to have a shoe removed because dried blood had glued it on.
I have a lifelong regiment of skincare procedures and precautions because of this so-called ‘side effect’. I’m typing with cotton gloves, as my hands are coated with ‘CeraVe’, an ointment. Year round, they still crack and bleed.
For 6 months, I was taking Cyclosporine and at-home IV Steroids. I could take no other medications. Nothing.
Since there aren’t any rules, I have to make this a game, I call it ‘Pain-Diversion’. I wish we could be spectators, it’s a lousy game.
My struggles are no greater than anyones and everyones pain bothers me, as it diverts mine. bob
Imran said:
Yea, I agree with you. What did Carbamazepine do for you?
Well all meds come with Side effects but they go away at the maximum of 7 days. Most other have Drowiness which I can handle. I rather be Drowsy then have any other side effects listed. I can always drink caffiene you know.