Tegretol worked for me within 48 hrs to rid me of the electric shock like TN1… However as the weeks progressed we were constantly increasing the dose so my Doctor switched me to the extended/ slow release Tegretol which I responded to much better.
Trigeminal Neuralgia
(SEE INDICATIONS AND USAGE)
Initial: On the first day, either 100 mg b.i.d. for tablets or XR tablets, or ½ teaspoon q.i.d. for suspension, for a total daily dose of 200 mg. This daily dose may be increased by up to 200 mg/day using increments of 100 mg every 12 hours for tablets or XR tablets, or 50 mg (½ teaspoon) q.i.d. for suspension, only as needed to achieve freedom from pain. Do not exceed 1200 mg daily. Maintenance: Control of pain can be maintained in most patients with 400-800 mg daily. However, some patients may be maintained on as little as 200 mg daily, while others may require as much as 1200 mg daily. At least once every 3 months throughout the treatment period, attempts should be made to reduce the dose to the minimum effective level or even to discontinue the drug.
What you should know about either form if Tegretol is …you need to have frequent blood work while on this med. I go every 3 months…time frames vary depending on your doctor.
Also, once you’ve experienced relief consistently for aprox. 4-6 weeks your doctor should start weaning you from your current dose slowly.
http://www.rxlist.com/tegretol-drug/indications-dosage.htm
The first time we reduced my tegretol I experienced an 8 & 10 year remission per side, I have bilateral TN.
Who knows if this could happen for you…
Mimi
Thanks Mimi I’m still on 100 I would prefer not to go to 200 but maybe I should
Great ted!! Glad it works for you, too. I am on the same dose and have been in good shape for the last five months since diagnosis!!
Ted said:
I have been on tegretol for 4 weeks now and very low dose doc put me on 100mg twice a day for 7 days and the. 200mg twice a day after that I have not gone above 100mg a day yet personally if I get relief on less i take less and so far 100mg a day has worked just in the last couple days I have gotten a few shocks very little so I may move up to 200mg a day now mine are extended release, All I can say is for me it has worked and I am greatful
Your just taking 100mg?
tacocat said:
Great ted!! Glad it works for you, too. I am on the same dose and have been in good shape for the last five months since diagnosis!!
Ted said:I have been on tegretol for 4 weeks now and very low dose doc put me on 100mg twice a day for 7 days and the. 200mg twice a day after that I have not gone above 100mg a day yet personally if I get relief on less i take less and so far 100mg a day has worked just in the last couple days I have gotten a few shocks very little so I may move up to 200mg a day now mine are extended release, All I can say is for me it has worked and I am greatful
Hi,
After 5 months of pain I was finally diagnosed with TN on Oct 29, 2013. Neurosurgeon started me on Tegretol 200mg 2x a day for a week then upped it to 200mg 3x a day. I felt slight relief after 2 days but after 2 weeks felt substantially better. The neurologist then added Cymbalta 30mg and reduced Tegretol to 2x a day because I still had numbness, pain but not as severe. The intense jolting pain returned immediately plus I suddenly developed severe headaches & vomiting after starting Cymbalta. After notifying Drs I came off Cymbalta and returned to Tegretol 200mgs 3x a day. I feel so much better as of Monday (Nov 18). I still have trigger spots but they are tolerable. For me, I am very grateful for my Tegretol! Good luck to everyone & Happy Thanksgiving
Tegretol worked for me within the first 8 hours. Unfortunately, I have had to increase my dose several times. I am now up to 1600mg a day. I have tried to taper off a few times, but had to go back up. There is no cure for this. There is remission sometimes, but no cure.
I thought I'd throw this out there — I take a started taking a drug this past Feb. called indomethacin (25mg) when I have a flare up. I also take a cocktail of Tegretol, Lyrica and Topamax. I've had TN since 2009/2010. I started seeing a new neurologist in in Feb. and he gave me that — I'd never heard of it before, and even reading about it it doesn't make sense to me but it's been really helpful. Thought I'd share especially sense I'd never heard it discussed before. Cheers, Jessica
That only helps a certain type of headache called "hemicranial continua", not TN related. The first doctor I went to for face pain put me on it for a few months but it didn't do anything so I went to another doctor. That one kept saying it was probably a new form of migraine, despite me telling him repeatedly it was nerve pain.
JessicaG said:
I thought I'd throw this out there — I take a started taking a drug this past Feb. called indomethacin (25mg) when I have a flare up. I also take a cocktail of Tegretol, Lyrica and Topamax. I've had TN since 2009/2010. I started seeing a new neurologist in in Feb. and he gave me that — I'd never heard of it before, and even reading about it it doesn't make sense to me but it's been really helpful. Thought I'd share especially sense I'd never heard it discussed before. Cheers, Jessica
As others have said sadly there is no cure. The medication (if the right dosage is found for you) just helps to lessen the pain. Everyone is different and their level of suffering will also be at different levels. I am taking Gabapentine; just gone from 300mg 4 times a day to 300mg x8 times a day and taking 8 co-codamal as well, I had 3 pain free days but it has hit me again today!!!
As others have said sadly there is no cure. The medication (if the right dosage is found for you) just helps to lessen the pain. Everyone is different and their level of suffering will also be at different levels. I am taking Gabapentine; just gone from 300mg 4 times a day to 300mg x8 times a day and taking 8 co-codamal as well, I had 3 pain free days but it has hit me again today!!!
My nuerologist and my oral facial pain doctor said that after taking 1200mg a day with no relief I should stop it because I should have had some relief at that dosage. I told them many people take much more but they still said 1200 mg should have helped. Did you get any relief when you were on 1200mg a day or did you need to be at a higher dose before you had relief? My problem is I am not really sure what my diagnosis is because I have been told I have nueopathic pain, TMD, Atypical facial pain or maybe TN. If it is TN I know it is ATN because I get the bad burning in my tooth. I am wondering if I should try a higher dose of gabapentin and I am going to a new nuerologist who is supposed to have experience with facial nueralgia and will ask him his opinion. I thought Trileptal was starting to help me but it affected my sodium so I went off of it. I am afraid to try some of the other medications because of the side effects. I am hoping the new nuero will help me. It is so encouraging to hear that many TN patients find relief with medication after trying many different ones. It makes you feel there is hope for everyone and just keep trying to find the right doctor and the right med.
I think this site has given me more knowledge about treatment than the doctors I have seen. It is great to be able to ask questions and talk to someone who understands what you are gong through.
Wraggy said:
As others have said sadly there is no cure. The medication (if the right dosage is found for you) just helps to lessen the pain. Everyone is different and their level of suffering will also be at different levels. I am taking Gabapentine; just gone from 300mg 4 times a day to 300mg x8 times a day and taking 8 co-codamal as well, I had 3 pain free days but it has hit me again today!!!