Hi all, I was hoping for some advice from those of you who are on Tegretol, or at least to hear about yout experience. I heard or read somewhere (can't remember where), that you may need to play around with the time you take the medication, and how you break down the dose. For example, I'm on 400mg, so that could be 200x2 or 100x4... Does this make a difference? Does the time you take it make a difference?
The dosage seems to cover the pain most of the time, but I still have a stab or two of pain each day (sometimes more if its very cold and windy. We just welcomed winter yesterday, yipee!)
Unsure that I should go back to the doctor as he only increased my dosage a month ago, and I am only just coming out of the Tegretol induced fog of the last four weeks.
Hi, unfortunately in my case, throughout my 5 years with TN I had to increase my tegretol many times as the effectiveness of the drug stopped working. So probably to control your pain you will need to increase it a bit, yes, getting used to the affects of tegretol isn’t fun.
Tiredness for me was constant, but a way of life.having that drugged feeling drugged all the time was awful to, but a way of life. This is the way I felt. I was up 1200mg
And on Lyrica, as for me I had no choice but to do mvd surgery because drugs no longer helped me. I wish you luck in finding relief for your pain, maybe a little increase will control that wind problem.
Hi emil2y,
If you’re not getting relief of pain from your current dose, then you need to talk to your doc about it.
In my experience, regular Tegretol didn’t work very well for me in the beginning so my Neuro switched me to the extended release version, Tegretol XR, this covered my pain much better.
Talk to your doc about your current dose and timing and see if there is another way to try.
Timing for me has always been important, same times every day within 45min otherwise I would start to feel “off”. So for the most part I always take at the same time everyday.
Hope you find a routine that works for you, (( hugs)) Mimi
Sometimes people play with the dose times too -- if on bottle 200 mg 3 x day ---- they might tweak it themselves and take 600 2 x per day or vice versa..... if lowering or raising the actual total dose - go slow and at least consult the doctor by phone ---
that's my unofficial advice from readings on here and personal experience : )
I have the same question about "For example, I'm on 400mg, so that could be 200x2 or 100x4... Does this make a difference?" I'm on 500mg right now and I have broken it down into 200mg at 8am, 100mg at 2pm, 200mg at 9pm... not sure if it is the idea way to take it.
I am on 800mg and i take a 400 mg tablet in the morning and same in the evening with a 12 hour spacing. It is the controlled release type so i get a smooth blood level. I would definitely take the controlled release type.
I don't think you will notice any difference in effectiveness between 4 times per day or say 2 times a day if you are using the controlled release type.But to some extent everyone has different reactions so you will need to experiment to find the best regime for you.
I would not stress too much about the side effects they eventually wore off for me and i have very little now. The biggest downside initially was loss of detail memory, so if you are in a high pressure job get a pencil and notebook and be very disciplined about taking notes, nobody will notice any difference :-).The fatigue feeling also eventually wore off but it did take a few months.
These side effects were for me trivial compared to the benefits.
good luck !
sophia said:
I have the same question about "For example, I'm on 400mg, so that could be 200x2 or 100x4... Does this make a difference?" I'm on 500mg right now and I have broken it down into 200mg at 8am, 100mg at 2pm, 200mg at 9pm... not sure if it is the idea way to take it.
The controlled release seems 6-8 times more expensive than the chewable tablet and I'm currently using the chewable tablet. Does it worth the extra expense to switch to controlled release?
Thanks all for your feedback! I guess I will have to go back to my doctor. Temperatures have fallen and my pain has risen! I've been suffering a lot even at night at around 3am or so, I've had this pain attack two days in a row like electric shocks in my teeth. Yesterday it stabilised by 10 am - I broke the dosage down into 100mg x4, and it seemed to be ok most of the day. I spent the rest of day relatively pain free - until evening when it got cold again and my pain came back. Surrounded by my hot water bottles and blankets and all, all night. This morning has been a nightmare, with quite a bit of pain. I was supposed to go out with a friend, but I cancelled in the end. I'm sitting here all wrapped up as I write this. Very scared the pain will start again. I'm on regular Tegretol, but I will ask my doctor about the controlled release one, but I'm not even sure we have that here.
Thanks glider! So my memory issues are a side effect.. I thought as much. I have become sooooo forgetful, like you wouldn't believe. Well, actually you would since you know what that is like. Yes, my notepad follows me everywhere at work now. I'm actually someone's assistant, so just imagine the trouble I'd be in if I forgot everything my boss asked me to do! Glad to know the fatigue does go away. I'm tired of being tired all the time.. (Bad pun not intended!)
glider said:
I am on 800mg and i take a 400 mg tablet in the morning and same in the evening with a 12 hour spacing. It is the controlled release type so i get a smooth blood level. I would definitely take the controlled release type.
I don't think you will notice any difference in effectiveness between 4 times per day or say 2 times a day if you are using the controlled release type.But to some extent everyone has different reactions so you will need to experiment to find the best regime for you.
I would not stress too much about the side effects they eventually wore off for me and i have very little now. The biggest downside initially was loss of detail memory, so if you are in a high pressure job get a pencil and notebook and be very disciplined about taking notes, nobody will notice any difference :-).The fatigue feeling also eventually wore off but it did take a few months.
These side effects were for me trivial compared to the benefits.
good luck !
sophia said:
I have the same question about "For example, I'm on 400mg, so that could be 200x2 or 100x4... Does this make a difference?" I'm on 500mg right now and I have broken it down into 200mg at 8am, 100mg at 2pm, 200mg at 9pm... not sure if it is the idea way to take it.
Another trick I sometimes employ is to take a 1/2 tablet or even a whole one (200mg) and crush it up in my mouth before swallowing (with food) it seems to go into your blood stream quite quickly and can stop upped times of activity. I caution though that the general advice from my Dr is not to do this with the controlled release types. My thinking is that so long as the overall daily dose is within the prescribed limit i'm probably not doing any real harm.
Sophia, when I was on tegretol (before my MVD) I always played around with my dosage and times until I had it perfect, on advice from my doctor, so that I had minimal side effects. Depending on my daily dose, I could be taking 200mg in the morning, 100mg at lunch and 200mg at night. Always taken with food. If I had to increase, I always increased the night dose first (max dose 400mg in one dosage). My neurologist and doctors allowed me to self regulate my dosage according to my pain and side effects. After a time, you tend to get to know our own needs.
sophia said:
I have the same question about “For example, I’m on 400mg, so that could be 200x2 or 100x4… Does this make a difference?” I’m on 500mg right now and I have broken it down into 200mg at 8am, 100mg at 2pm, 200mg at 9pm… not sure if it is the idea way to take it.
Hi Gen, was that the controlled release type of tegretol ?
Gen said:
Sophia, when I was on tegretol (before my MVD) I always played around with my dosage and times until I had it perfect, on advice from my doctor, so that I had minimal side effects. Depending on my daily dose, I could be taking 200mg in the morning, 100mg at lunch and 200mg at night. Always taken with food. If I had to increase, I always increased the night dose first (max dose 400mg in one dosage). My neurologist and doctors allowed me to self regulate my dosage according to my pain and side effects. After a time, you tend to get to know our own needs.
sophia said:
I have the same question about "For example, I'm on 400mg, so that could be 200x2 or 100x4... Does this make a difference?" I'm on 500mg right now and I have broken it down into 200mg at 8am, 100mg at 2pm, 200mg at 9pm... not sure if it is the idea way to take it.
When I got increased to 1200mg a day because of severe breakthrough pain, I had been taking 400 in am, 400 in pm and then an additional 200 later at night for about a week because of intense episodes of breakthrough pain. So I THOUGHT I could just do 600 in am and 600 in pm......I was soooooooooo wrong! I took that 1st 600mg dose and within about 20 minutes, I was so dizzy, sick, drunk that I really had NO business going in to work that day. I drank coffee ALL day and it didn't help one bit! By the time I made it home that night, I just laid in bed ALL evening and night and I wasn't ABOUT to take another 600 that night! I just took 400 that night and decided that the next day, I would try splitting the 1200 into 3 doses and see if that helped......it DID! So now I take 400 about 7am, 400 around 2:30pm and 400 around 8pm. That seems to help with that drunk feeling. But I AM still really tired a lot. And when I saw my neurosurgeon for the 1st time and talked to him, he said that yes, we do have to play around with our meds sometimes to see what works for us.
Donna, you're so right to split the dosage like that. Right before my MVD I would take 200mg with breakfast, 100mg with morning tea, 200mg with lunch, 100mg with afternoon tea and 400mg at night just before going to bed (with about a window of 15 minutes before I was "comatose" asleep!!). I was also taking 600mg of Gabapentin, but just split that 300mg in morning and 300mg at night. I found that if I didn't take the Tegretol with food the side effects of double vision, sleepiness etc would be exacerbated so much!! I read somewhere that you need something in your stomach to absorb the drug. And my doctor's and pharmacist agreed for me to experiment to find the cocktail that suited me. I was always on the borderline of toxicity, so I had to be quite careful.
My neurosurgeon just told me that Tegretol is a medication that requires precision and that smaller frequent doses work better than taking it all at one go.
So now I am on 600mg, 200 x3. Just started the 600mg 2 days ago. I am back to the way I was feeling when I increased from 200mg to 400mg. Looks like every increase brings back the drowsiness and feeling that you're in a daze of sorts. I am sooo out of it right now.