Here's a little bit of information that I just learned the hard way, after lying in the ER for 9 hours yesterday. My doctor put me on Carbatrol for TN about a little over two weeks ago, and then I saw a Neurologist about a week later, who told me I could gradually increase the dosage to as much as 800 mg per day, which I started doing. By Monday I was up to 600 mg. On Tuesday, at the beauty shop, I began feeling very ill, then the next thing I know my hairdresser has called 911 and the paramedics are there..... Anyway, the ER doc said the cause was low sodium, which caused a drastic drop in my BP, causing a loss of consciousness.
This is just FYI. I am now off the Carbatol, and the next thing to try is Gabapentin. Looks like this is going to be a long journey.
Hi , I just read your post and noticed you said you were from Athens , TX. I live just outside of Canton, TX.
I had TN for almost 3 years until it progressed to the point I had to have surgery. I had MVD surgery done last Aug.30th at Dallas Presbyterian and so for it has been wonderful. I'm not so sure if it was completely successful because I am still on a very small amount of my medication which is carbamazepine, the generic to tegretol. But I have not had any horrible TN pain since. I was at one time taking 1200mg of medication along with Lyrica 3 times a day and constantly feeling like a zombie.
I have a family history of TN, it is very hereditary in my Mothers side of the family. Everyone told me (after years of treatment) that tegretol was the best medication or the generic to it for TN. This is a very good support site along with the support site called " daily strength".
Take Care, Linda
Hi, Linda ...
It's good to hear from someone close by. I had never even heard of TN until a few weeks ago. Since I started the medication, I haven't been in constant pain, and the only time I was having the "shocking" attacks (the only way I know how to describe them) was when I trigger them. The bad part is that the "trigger" area is my upper lip, so I get pain when I eat, talk, brush my teeth, lick my lips, smile, etc. I guess the good thing is that I'm not having constant pain. I started on Gabapentin this morning (took one pill so far and can't think straight or keep my eyes open). I'm hoping to get everything regulated and get back to work soon; that's if I can get my sodium levels back to normal.
Anyway, if you don't mind, can you message me offline with the information on your neurosurgeon just in case I need it, and what your experience was with them. My email address is cyndi.stiefer@suddenlink.net. Thanks.
Cyndi
Linda Kindle said:
Hi , I just read your post and noticed you said you were from Athens , TX. I live just outside of Canton, TX.
I had TN for almost 3 years until it progressed to the point I had to have surgery. I had MVD surgery done last Aug.30th at Dallas Presbyterian and so for it has been wonderful. I'm not so sure if it was completely successful because I am still on a very small amount of my medication which is carbamazepine, the generic to tegretol. But I have not had any horrible TN pain since. I was at one time taking 1200mg of medication along with Lyrica 3 times a day and constantly feeling like a zombie.
I have a family history of TN, it is very hereditary in my Mothers side of the family. Everyone told me (after years of treatment) that tegretol was the best medication or the generic to it for TN. This is a very good support site along with the support site called " daily strength".
Take Care, Linda
Thanks, Linda. I was only on the Carbatrol for 2 1/2 weeks, and 2 of those weeks at 200 mg a day. I think my main concern at this point is the sodium levels. The ER doc said they were so low, and most people have “altered state of mind” at those levels. So I really don’t know if the fuzziness is due to the medicine or the low sodium. I have to go back tomorrow to have the levels checked again.
I’ve only taken one 300 mg capsule of the Gabapentin today. Do you think I should increase it gradually, and if so, how gradually? The nurse just said stop the Carbatrol and start the Gabapentin.
Cyndi,
I'm sorry, I 'm really not familiar with this medication. But, like Jackie said these drugs are ones that you do want to be careful taking. Any time I am not quite sure of how to take the medication are how much to take, I call the nurse. I really don't mind if I have just talked to her a few minutes before, she should know how important the dosage is for this kind of medication and should make sure she explains it clearly.This is how I have gotten to be since TN came into my life.
Linda . Cyndi Doud Stiefer said:
Thanks, Linda. I was only on the Carbatrol for 2 1/2 weeks, and 2 of those weeks at 200 mg a day. I think my main concern at this point is the sodium levels. The ER doc said they were so low, and most people have "altered state of mind" at those levels. So I really don't know if the fuzziness is due to the medicine or the low sodium. I have to go back tomorrow to have the levels checked again.
I've only taken one 300 mg capsule of the Gabapentin today. Do you think I should increase it gradually, and if so, how gradually? The nurse just said stop the Carbatrol and start the Gabapentin.
Hey Cyndi. I have been on Gabapentin for about 3 weeks now. I was taking 900mg a day and upped it to 1800 on the advice of my doctor for my severe TN jaw pain. I am now taking 200mg with the Gabapentin in hopes of taking the edge off the pain. I had a light headed feeling the first day or two but it went away and did really well on 900mg's daily. Now that I'm up to the double dose I'm kinda "stupid" all day long and the worse part is nothing is helping so far.
Im going in for a 3D mri next week at OHSU in Portland, Or. in hopes of finding a cause and probably signing on for MVD sugery. I'm a little nervous about the procedue but I have heard good things from quite a few folks and I'm looking for relief soon!
Good luck with your meds. It's a trial and error process I understand, hang in there. John
Cyndi Doud Stiefer said:
Hi, Linda ...
It's good to hear from someone close by. I had never even heard of TN until a few weeks ago. Since I started the medication, I haven't been in constant pain, and the only time I was having the "shocking" attacks (the only way I know how to describe them) was when I trigger them. The bad part is that the "trigger" area is my upper lip, so I get pain when I eat, talk, brush my teeth, lick my lips, smile, etc. I guess the good thing is that I'm not having constant pain. I started on Gabapentin this morning (took one pill so far and can't think straight or keep my eyes open). I'm hoping to get everything regulated and get back to work soon; that's if I can get my sodium levels back to normal.
Anyway, if you don't mind, can you message me offline with the information on your neurosurgeon just in case I need it, and what your experience was with them. My email address is cyndi.stiefer@suddenlink.net. Thanks.
Cyndi
Linda Kindle said:
Hi , I just read your post and noticed you said you were from Athens , TX. I live just outside of Canton, TX.
I had TN for almost 3 years until it progressed to the point I had to have surgery. I had MVD surgery done last Aug.30th at Dallas Presbyterian and so for it has been wonderful. I'm not so sure if it was completely successful because I am still on a very small amount of my medication which is carbamazepine, the generic to tegretol. But I have not had any horrible TN pain since. I was at one time taking 1200mg of medication along with Lyrica 3 times a day and constantly feeling like a zombie.
I have a family history of TN, it is very hereditary in my Mothers side of the family. Everyone told me (after years of treatment) that tegretol was the best medication or the generic to it for TN. This is a very good support site along with the support site called " daily strength".
Take Care, Linda
Cyndi Great FYI…I’m a bit surprised that your doc. didn’t warn you about this possible side effect. Good luck with the Gabapentin. 