So got my diagnosis just over a week ago, and within a day of being on Tegretol (100mg twice a day) my face seemed to almost stop spasming... I occasionally feel a mild one but not the agonizing pain anymore. It all seems too easy. I don't know whether to just rejoice or be a little paranoid. Did anyone else have similar experiences?
Got a referral to neurologist the week before Xmas so will obviously see what he says too.
Many chronic neuropathic facial pain patients report a very rapid response to Tegretol. That's one of the reasons that many medical professionals consider a major reduction in pain within days after beginning a trial with Tegretal to be one of the better confirmations of the diagnosis.
Regards,
That’s exactly how it was for me. Then had to increase dose a couple times, now I’m on another med too.
I'm an ATN, so I don't know how similar our experiences are, but I have tried 6 medications in 9 months and all of them started relieving my pain long before I got up to the high doses most people talk about needing. Unfortunately 5 of 6 have also given me severe side effects at much lower doses than normal so I had to quit using them. Sometimes I have had doctors question both my diagnosis because I was "cured" aka treated, too easily and I quit 3 docs because they would not acknowledge my side effects (would you try telling a girl who literally has to hang on the wall to stand and has dry heaved into your trash can from motion sickness that she doesn't have vertigo? Why would I make it up and put on that act?) My GP who knows me best and has seen my life long history of strange reactions to medications, she thinks I am just strangely sensitive to both the pain dulling effects AND the nasty side effects.
So, From my point of view, enjoy the relief but don't assume it will last forever, Even with the best drug fit most of us build tolerances overtime and have to find new medications. Don't let yourself or doctors discount your diagnosis, if these meds worked it is a nerve thing. Be on guard for side effects, God willing you are only going to see the desired effects, but I have learned it is a good idea to research possible side effects, talk to your doctor and know what to look for. Increased depression and suicidal thoughts was my scariest side effect. It took me 4 weeks to figure out why I wanted to die now that I was out of pain, it really snuck up on me.
Hopefully you have lucked Into a good fit on the first try, it is ok to enjoy it. :) but it is also reasonable to feel a bit paranoid. Good luck finding a balance that works for you!
-Erika
Thanks all it is reassuring that it is possible that it starts helping straight away. I've had the mega drowsy/tired side effect all week but otherwise been ok thankfully. I'll keep my fingers crossed then but not hold my breath ;)
Sounds like you've had a horrible ride Erika. The last thing anyone needs when they feel this bad is unsupported. Stay strong x
It has been 59 weeks since my face started hurting last November. I am 25, and my life is totally different than I wanted, I quit my job that I loved and moved back in with my parents 150 miles from where I had been. But I have made many new friends, I have been able to help others, and I no longer care as much about the goals (job, house, find a man, have kids aka the American Dream) I used to have. I used to have a life plan and if something went off that plan, I was grumpy and felt like a failure. It is a little freeing to have your body force you away from what you thought you wanted,maybe somethings I only wanted because I was told I was supposed to. Now I am alive, I get out of bed on good and bad days and get dressed, and I do what I can to help out my family and friends. 4 months ago I never would have said I could be happy, but most days I really am :) I would never choose this kind of pain, but I have chosen to become a better person because of it. It was either that or die, so not much of a choice, but still important. I truly hope you have an easier journey!
Thanks for the support, Wishing you the best,
Erika
I was told by my doctor that tegretol starts working in about 2 hours for facial pain patients who get relief from it, and this was the case for me. It’s been a life saver!
don’t look a gift horse in the mouth; simply rejoice and say thank you.
Lol Amen! And we'll pray it keeps working for her! Like Red said, it's the first choice but wears off. It was my first choice along with Elavil and it lasted about 2-4 weeks for me. This was back in 2000.
Patty said:
don't look a gift horse in the mouth; simply rejoice and say thank you.
Rejoice rejoice rejoice…don’t question why it’s working so well and so quickly…grab your life back and live for the day! I am so so happy for you!
Heya,
My name is Hadi, i'm 28 years old living in Paris. Diagnosed three years ago. I have long periods of remission (5 to 6 month)
and when attacks are back, i take my tegretol again, and it works great! the spasming does not stop completely but the pain is mild as you say. No worries, you can rejoice, itsaved my life.
Thanks all. Useful to hear that dr said it can work within 2 hours - I didn't get that kind of info. Just got told start at 2 a day and can up to 6 per day, but not really advise about how or when etc. Will make the most of the next few weeks!!!
Talk to another doctor or your pharmacist, Aitchie. Tegretol and all of the anti-seizure drugs need to be tapered up or down GRADUALLY. There is a small but real risk of seizure if the dose level is changed too rapidly in either direction.
Aitchie said:
Thanks all. Useful to hear that dr said it can work within 2 hours - I didn't get that kind of info. Just got told start at 2 a day and can up to 6 per day, but not really advise about how or when etc. Will make the most of the next few weeks!!!
Thanks. Just the two a day is working right now so I have no plans to up it at the moment anyway. I've got my appointment with Neurologist a few days before Xmas so don't plan to change anything before I see him unless anything drastically changes in my situation.
Richard A. "Red" Lawhern said:
Talk to another doctor or your pharmacist, Aitchie. Tegretol and all of the anti-seizure drugs need to be tapered up or down GRADUALLY. There is a small but real risk of seizure if the dose level is changed too rapidly in either direction.
Aitchie said:Thanks all. Useful to hear that dr said it can work within 2 hours - I didn't get that kind of info. Just got told start at 2 a day and can up to 6 per day, but not really advise about how or when etc. Will make the most of the next few weeks!!!
Richard is absolutely right talk to your doctor. Either way you have to do it gradually... when i feel that period of remission begins i reduce intakes slowly. even to 25mg a day (1/4 of pill)
Richard A. "Red" Lawhern said:
Talk to another doctor or your pharmacist, Aitchie. Tegretol and all of the anti-seizure drugs need to be tapered up or down GRADUALLY. There is a small but real risk of seizure if the dose level is changed too rapidly in either direction.
Aitchie said:Thanks all. Useful to hear that dr said it can work within 2 hours - I didn't get that kind of info. Just got told start at 2 a day and can up to 6 per day, but not really advise about how or when etc. Will make the most of the next few weeks!!!
Thanks. How can you tell the difference between remission and drugs working?
Hadi Paris said:
Richard is absolutely right talk to your doctor. Either way you have to do it gradually... when i feel that period of remission begins i reduce intakes slowly. even to 25mg a day (1/4 of pill)
Hello,
What i learned since i got diagnosed is that every patient is different. In my case i have attacks three to four month a year, usually in September October November December, the rest of the year the pain simply vanishes.
Its quite easy to tell, because even when drugs are working the attacks are still there, but the pain is “milder” (even though sometimes the pain is unbearable and brings you to your knees).
My neurologist in Paris is very experienced on the matter, we taught me how to take my medicine, how to start slowly to increase and to decrease the dose.
Aitchie said:
Thanks. How can you tell the difference between remission and drugs working?
Hadi Paris said:Richard is absolutely right talk to your doctor. Either way you have to do it gradually... when i feel that period of remission begins i reduce intakes slowly. even to 25mg a day (1/4 of pill)
Thanks. Am trying to keep a bit of a diary so I can recall what and how things feels. Hopefully I'll learn more too once I see the neurologist, but in the meantime will keep things as they are.
I'm newly diagnosed and just started on 200 mgs tegretol about 3 weeks ago (sorry, I lose track of time - LOL). It was instant relief! WOW! I was amazed! But then . . . . :( Or should I say now. :( This past week I spent in pure agony. So will be calling the docs office on Monday to see what we need to do.
Oh no sorry to hear that ChipperRoo. :( The docs told me I cold increase my meds to two three times a day gradually so I expect that's what they will say - usually they seem to say try a 2nd one at night time first so you are on 300mg. Might be worth trying tonight if you are still in a lot of pain.