A general question to TN sufferers: I have had TN1 for about 3 years and I take 100mg of Tegretol once a day, which has taken care of the pain except for a few breakthroughs. I wonder if anyone has been able to stop taking Tegretol and see what happens. I'm afraid to try.
Hi Emmas meme, of course only a doctor can recommend a course of treatment. Speaking from my perspective I think I would give it a try. As I understand it the Tegretol does not help the underlying condition but just acts on the pain. So the worse thing that would happen is that you feel pain and you can restart Tegretol. As a matter of fact I recall reading that with Tegretol every 6 months of no pain a person should try and reduce the level of Tegretol that they are taking by 100mg. I think that you are on the minimum dose as that I think the Tegretol normal dose is from 100 to 800-- though I have heard of people taking more. I am currently taking 500 mg of Tegretol and I built up in 100mg doses a week at a time. So lucky you! The low dosage of 100 mg has been working for three years!! I would be so excited!!! Thanks for asking the question. Of course the best would be to ask your doctor. Sometimes that is difficult. Best of Luck!! Let us know what you decide and how you are doing!!!! Tina
TN is for life…meds stop working eventually… But there is remission, so you can try for it now
Get some lidocaine patches called in for you…I lowered my meds that way…I got rid of TN for he time being, by having an MVD with THE Best TN surgeon out of state… I hated meds, and it pays off for many now…
Are you a candidate?.
I love the lidocaine patches. Couldn’t take tegretol so they put me on lyrica and baclofen I told my neuro flat put that I wanted off them because I felt good only a few minor problems. I went off them 9/25 and lost 25 lbs of Med bloat. I feel great (I did have an mvd last winter so it may slightly different for you. Good luck. Know your own body
Yes, me too, i’m afraid, I take 800 mg of tegretol a day, I spread it over the 24hrs, I even set the alarm to wake at 3.00 am to take my 200mg dose… My doctor wants me to try and reduce it, but don’t think I can handle the pain that I know will return… I’m not brave enough. 100mg is such a small dose, it’s not doing you any harm long term, so I would stay on it and don’t worry. I’m glad your so well and pain free… Anne
Anne
Thanks for the fast reply. I had my level of Tegretol checked recently and it is OK, so I will keep taking it. Luckily I don't have much pain and it has been quite good for the past year. Thanks again, good luck with your TN. Chris
anne morris said:
Yes, me too, i'm afraid, I take 800 mg of tegretol a day, I spread it over the 24hrs, I even set the alarm to wake at 3.00 am to take my 200mg dose.... My doctor wants me to try and reduce it, but don't think I can handle the pain that I know will return.... I'm not brave enough. 100mg is such a small dose, it's not doing you any harm long term, so I would stay on it and don't worry. I'm glad your so well and pain free....... Anne
Wow you are so lucky to only take 100mg a day. I take 1200-1600 depending on the day! Surgery is in my near future I believe. I think you could try to stop. You will know if you need to start back. I have tried to decrease mine during good times, but I always ended up having to go back up. Remember that I am not a doc, so you should probably ask them too, but if you are only taking 100mg a day, what could it hurt?
Call pharmacist!
Hi Emma’s meme,
It has ALWAYS been my neurologist’s way to start weaning his patients off TN meds ( as they are not good for us long term ) BUT only when they’ve been on them with NO pain for longer than 4-6 weeks…
So, in my case in 2002 …I was able to wean off my Tegretol over the course of several weeks with my Neuro’s advice and I went into an 8 (right side) and 10 (left side) YEAR remission …NO meds…
Yes, I was scared to wean…with TN, we’ll always have fear…but for me I’m so glad I did…I wish I knew what caused the remission so I could have one again…
Talk to your doctor or neuro before attempting to wean.
(( hugs )) Mimi
Mimi
Thanks for the reply. I had a remission for about 6 months, but had a small breakthrough two weeks ago, so I'll wait to see how long I can go without pain. I only take one 100mg a day, the smallest dose thankfully. Chris
Mimi said:
Hi Emma's meme,
It has ALWAYS been my neurologist's way to start weaning his patients off TN meds ( as they are not good for us long term ) BUT only when they've been on them with NO pain for longer than 4-6 weeks....
So, in my case in 2002 ..I was able to wean off my Tegretol over the course of several weeks with my Neuro's advice and I went into an 8 (right side) and 10 (left side) YEAR remission ...NO meds...
Yes, I was scared to wean...with TN, we'll always have fear....but for me I'm so glad I did...I wish I knew what caused the remission so I could have one again....
Talk to your doctor or neuro before attempting to wean.
(( hugs )) Mimi