I have been on 800 mgs of Tegretol with minor breakthrough pain.
The main problem is the side effects.
It is as if my brain does not quite work correctly.
I am fuzzy and tired.
I am unable to return to school (college) next semester, and unable to drive.
I am feeling like this will never get better.
I tried weaning off of the meds, but the pain returned.
Does anybody have to be on these meds forever? How do you know when to stop taking them?
This is all so frustrating
as for how long you have to take them, I cant answer that. I am so fuzzy I cant work or do anything. I told my neurosurgeon I have a genius IQ that has just gone to waste. Simple things like paying my bills now take me days to complete. I feel your pain, I cant drive either. My biggest fear is the same as yours that I will never be off these meds. Check with whoever your doctor is and see what different treatments might work for you. The one thing about this site, is that there are plenty of people to help you . I am new to the sight, but have learned so much about this &%$@ disorder. Hope you feel better.
Wendy
Hi Stephanie,
I'm new to the site and to TN myself, so I may not be the best person to give advice. I refused any meds for the same reason you discuss, and just dealt with the pain. My advise to you, is to talk to your doctor about maybe trying another medication. From reading other posts, it seems as if everyone has their own special recipe of medications that work for them, and not one thing works for all. Maybe your doctor could lower your dose and add something else to it, or change to another med altogether. I know that Tegratol is the first med they normally prescribe, and I have heard and read many stories such as yours. You just have to find the right recipe for you. I encourage you not to settle for what your doctor gives you, do your research and make suggestions to him/her. Thsi is unchartered territory for many Dr.s so we have to be our own advocate's. Wishing you pain free days!
Hi there,
When I was first diag. I was put on trileptal. About 1200 mgs a day. Worked well for 6 1/2 years. Then tried many others. At least 1200 mgs. a day. Even tried Lyrica, it made me swell. In all the years, about 13, I have probably tried all of them. They made me really goofy. I took lots of falls. Good luck. I have just joined this site.
Trileptal is related to what you are on - but less side effects
It also has its own generic
each med compound made at the big pharma is slightly variable from one manufacturer to another
so you can try meds in the same family and get better results ----
There are soooo many meds to try ---- Get the book - "Striking Back" by Dr Ken Casey --- that is our unofficial "bible" here = many, many treatment options
There are other meds out there to try. Tegretol is bad for "brain fog", when I was on it someone would ask me a question and I would get a brain lag ... like a few seconds of blankness before I could answer. So I know the dumb feeling! If you can't cope try other meds. I'm on neurontin (gabapentin) and I don't get the brain fog at all so there is hope!
Hi Stephanie,
I used to take Tegretol, it was one of the first meds for TN I tried. I had a violent allergic reaction to it and had to switch until I landed on neurontin, which I could tolerate. I got really stupid on Tegretol, but it worked so well to get rid of the burning, shocking and nerve pain.
Neurontin helps much less, and it gives me this symptom that feels like ocd...the same thought will run through my head relentlessly for hours, making it tough to concentrate. This last week I've delayed taking my meds until the late afternoon so I can function better at work - not a good plan I'm sure. I have a kind of pain that can get increasingly worse as the day goes on, as I move my mouth from talking, chewing, etc. This is when hydrocodone can help, but it makes me sick to my stomach so I try to hold out.
I hope you find a med that allows you more clarity. I watched my intelligence wave goodbye years ago and feel so dopey. It does make for humorous situations though. I'm way more entertaining when I'm stupid LOL :)
I am on my second week of Trileptal. Same stupid feeling. I told my husband that I'm only as smart as he is. He had it coming. I know the side effects will lessen as time goes on.
How long have you been on it? If you can hold on long enough, the side effects should (but not always) go away or lessen considerably. I believe Trileptal is a sister of Tegretol but with fewer side effects. There are many drugs out there. I am on Trileptal and Klonopin and right now, pretty dumb because the electrical impulses had slowed down my brain. Talk to your doc and try something else. Let us know what you do because your experiences help everyone here.
I found the book on Amazon for an excellent price. 24.95 it's more expensive at other places.
Kc Dancer Kc said:
Trileptal is related to what you are on - but less side effects
It also has its own generic
each med compound made at the big pharma is slightly variable from one manufacturer to another
so you can try meds in the same family and get better results ----
There are soooo many meds to try ---- Get the book - "Striking Back" by Dr Ken Casey --- that is our unofficial "bible" here = many, many treatment options
Hey Stephanie,
I'm on 1800mg of generic Trileptal. It's definitely been a struggle brain-wise. I used to be the guy that knew every actor in every film and every song on every CD in my collection and could name them within 5 seconds of being played etc etc. Now I'm the guy that says stuff like: that guy, you know in the film about the thing...
It's frustrating as hell! I'm pretty much this now: http://icanhascheezburger.files.wordpress.com/2008/07/funny-pictures-cat-cannot-brain-today.jpg
I'm actually headed to see my neuro today to see about other meds. Not only do I feel dumb but I seem to have gotten used to the Trileptal and it's now working so well anymore.
I know the feeling. It just works so well for the TN but I have to keep upping the meds. I am now on 800 mg. I am a teacher and thank God I am teaching 1st thru 7th grade right now and not high school. The little kids fill in my sentences for me because I take too long. One time, I told them to be quiet when we got into the car. They looked at me like I had 3 heads and asked me what I meant and I asked them what they were talking about and when they told me what I said, I told them I was just making sure they were paying attention. LOL I meant to be quiet when we got into the hall. I can't even remember the name of a hairbrush.
I am on Tegretol and Neurontin and 98% of the time I am in the clouds. This combo seems to be working for me as it has decreased the pain by 50-75%. I am going in tomorrow to see my back doctor for other issues, and will present him with my recent diagnosis of TN. I am only 33 and am walking because of him. He is a Godsend....I will let ya'll know if he has any recommendations. Prayers for everyone affected by this disease.
I'm sorry you are struggling so much. Tegretol is a ... you know. I've been on it for quite awhile now and am fortunate enough that we might begin weaning off of it starting Thursday (because I'll be post-MVD so it's sort of a "let's see how well this worked" kind of thing).
In general, I'd go with what everyone else has said, there are tons of different medications and medication combos that different people take, and it seems like each person does have their own recipe that works for a period of time. From my limited understanding, the condition is always progressing and your body is always reaching levels of *what is the freaking word ... * ... these *&*(& meds* well I can't think of the word but it's when your body gets used to that dose of that med so it doesn't work as well as it used to.
Point is, it's very much like hitting a moving target while you're moving as well ... I'm sorry this is so frustrating, but don't be afraid to tell your doctor that your current situation is unlivable, and hopefully you find your combo that works for you.
Sorry for my ramblings and tip of the tongue-itis; it's past 10 pm so ... yeah.
I am going to get off of Tegretol for how much "brain lag" I have. It is embarassing. Like I am a dummy or something. I read about awful long term effects from it too. I want to go to Gabapentin. My dr's really don't want me to. They say the pain will come back, did it do that for you?
Porcelina said:
There are other meds out there to try. Tegretol is bad for "brain fog", when I was on it someone would ask me a question and I would get a brain lag ... like a few seconds of blankness before I could answer. So I know the dumb feeling! If you can't cope try other meds. I'm on neurontin (gabapentin) and I don't get the brain fog at all so there is hope!
Hi stephen
I know tegretol has side effects, but it is the drug that arrests pain of TN.
Other meds can work you will try under your neuro’s supervision.
Good luck
Hi Porcelina,
Does gabapentin ease your pain like tegretol do.
I have TN in all 6 branches of the nerve, Tegretol has saved my life, I have steadily gone up to 9-10 tablets per day
I'm now on LYRICA 75, two in the morning and evening combined with 2 tegretol 200 day and night
The Lyrica works, almost a MIRACLE, it's allowed me to scale down the Tegretol to 4 per day, I'm reducing that slowly to see what happens
The Tegretol ''brain fog'' has gone, it was like putting a frog in cold water and heating it, I wasn't aware of the brain fog, it grew so slowly that I didn't notice it. I knew there was memory problems but the fog wasn't noticed. I feel alive for the first time in a decade. The pain is still there in the background but if I take care, it doesn't fire at all
I've tried everything over the years and only Tegretol worked and now LYRICA has improved my TN, I'm almost over the moon but it surely has taken time probably due to limited research funds
crashgirl said:
as for how long you have to take them, I cant answer that. I am so fuzzy I cant work or do anything. I told my neurosurgeon I have a genius IQ that has just gone to waste. Simple things like paying my bills now take me days to complete. I feel your pain, I cant drive either. My biggest fear is the same as yours that I will never be off these meds. Check with whoever your doctor is and see what different treatments might work for you. The one thing about this site, is that there are plenty of people to help you . I am new to the sight, but have learned so much about this &%$@ disorder. Hope you feel better.
Wendy
In time, you might adjust to the meds and the side effects will settle down. Hopefully. If you are unable to tolerate them and have quality of life, you can talk with your doc about other options... gamma knife, MVD, etc. Just don't stop taking them. The pain is just not worth it. Best of luck to you!
I now have my Tegretol 200 down to 3 per day with 4 LYRICA 75 per day. I've dropped my Tegretol from 9 to 3 and will keep lowering it to get off it if I can. 3 Tegretol for me now is unbelievable, I was taking that dose 3 decades ago
Whenever I had the 'suicidal attacks' of pain like a taser shot in my face, any side anywhere, I had no choice but to increase my Tegretol up to 12 X 200, it will not kill me. I would often pass out but for the next week I had no pain on just 6 Tegretol per day. My doctor is aware of my dosages but he knows I always try to lower my dose because I want Tegretol to remain effective. I've been to many surgeons in Aus and they would not operate, it was too risky and I will never have a destructive procedure because with my luck anaesthesia dolorosa will be waiting to finish me off, it scares me
Leonie said:
I have TN in all 6 branches of the nerve, Tegretol has saved my life, I have steadily gone up to 9-10 tablets per day
I'm now on LYRICA 75, two in the morning and evening combined with 2 tegretol 200 day and night
The Lyrica works, almost a MIRACLE, it's allowed me to scale down the Tegretol to 4 per day, I'm reducing that slowly to see what happens
The Tegretol ''brain fog'' has gone, it was like putting a frog in cold water and heating it, I wasn't aware of the brain fog, it grew so slowly that I didn't notice it. I knew there was memory problems but the fog wasn't noticed. I feel alive for the first time in a decade. The pain is still there in the background but if I take care, it doesn't fire at all
I've tried everything over the years and only Tegretol worked and now LYRICA has improved my TN, I'm almost over the moon but it surely has taken time probably due to limited research funds
crashgirl said:as for how long you have to take them, I cant answer that. I am so fuzzy I cant work or do anything. I told my neurosurgeon I have a genius IQ that has just gone to waste. Simple things like paying my bills now take me days to complete. I feel your pain, I cant drive either. My biggest fear is the same as yours that I will never be off these meds. Check with whoever your doctor is and see what different treatments might work for you. The one thing about this site, is that there are plenty of people to help you . I am new to the sight, but have learned so much about this &%$@ disorder. Hope you feel better.
Wendy
I've been taking Tegretol for 3 decades and it does get better even with higher doses however LYRICA + Tegretol for me now is a life saver. I take less tegretol, 600 combined with 150 LYRICA daily ½ morning and night and my brain function is far better
