Hot damn - doc added some new meds to my regime. Seems I've built a tolerance to the 1800mg a day of Trileptal I've been taking.
We've lowered the 1800 down to 1200mg of Trileptal and added in 100mg of Zonegran. I officially feel stupid all the time now. Also, drinking seems to be entirely out, at least until I get used to the Zonegran. Had a 6oz beer and 1oz whiskey (wonderful pairing with dinner) the other night after taking my new meds. WOW - spaaaaced out.
Is the pain better? not yet but it's only been a couple days. I'll keep ya posted.
I am on Trileptal as well and it seems to be not working so now I am taking Gabapentin. So far it hasn't relieved my pain. I suppose I must be patient and give it time. It is only my third day on it. I am sorry to hear that you are in pain and spacing out. I don't drink while on meds. I learned my lesson months ago.
I take milk thistle for liver support and my blood tests always come back excellent so I figure I'm not gonna die from it any time soon. And this disease is bad enough without taking away my beloved beer too :)
So can we or can we not drink while on meds? The enclosed information that comes with my pills doesn't say I'm not allowed to drink. I had a couple of beers the other day and I didn't feel they were harmful:) My liver is in a good condition, I drink rarely and usually just beer/wine; suppose that should be ok?
I cant imagine how stupid I would get if I drank now, but I have been salivating every time I open my fridge and see the bottles of Stout in there....hmmm, maybe one night of stupid wouldnt be so bad
Haha, maybe I can drink because I've only been on pain medication since last week (and I'm on low dose too). I guess in a few weeks' time I'll have a different story to tell. As far as pain goes, I find that a pint of lager actually helps whereas a cup of coffee makes it worse. So I'm usually salivating as my colleagues at work are making their morning coffee while I'm sipping my awfully-smelling tea for healthy nerves, how sad:)
We eat and drink things that are far worse than a pint of lager every day. I know people that drink 10 cans of Coke a day. That's unhealthy for sure, meds or not. Couple beers? Who cares? Don't go drinking a six pack a night or anything like that but if you want to have a glass of wine with dinner or a beer with your nachos big deal.
I"m no doctor of course so don't tell your doctor some dude online said you can drink on your meds haha. That said, I've always believed it's a moderation thing.
Exactly. I remember my Dad was recommened to drink a pint of beer a day by a doctor when he had some intestinal issues. And he was on meds at the time too. I believe your body tells you what's right. It's been telling me to eat loads recently, I wonder if it could be due to the high intake of "B" vitamins (got prescribed mega doses last week). I wonder why do the vitamins make you hungry and wanting to eat all time?
Todd, I have been dying for a cold Beer. I also love wine all kinds. Miss it big time. I mean I am no drunk, but love to be with friends and enjoy a glass of wine. Been so afraid. Maybe a couple of sips won't hurt. After all how much worse can it get. I all ready Have the worst pain known to mankind!!!. Type 2 Constant pain. Ugh! Wish it would all go away.
Pebbles you have a point, how much worse can it get? lol
If I could drive I would come up to Brooklyn and have a cold one with you, I love New York, the botanical gardens and museum there are awesome...we could get hammered and go...and if we have pain at that time, people will just think we are drunk!! lol
Then it's settled, I will drink some wine this weekend and celebrate with my hubby. You guys have made this topic very funny and I am glad we have a group like this to take our minds off some pain.......well at least for a few minutes. Cheers to those drinking a little bit.
Hi Guys, I'm on 600 mg per day of tegretol CR, I regularly have a glass or two of wine or a couple bottles of beer (350 ml) with no adverse effects whatsoever. I would say give it a go but don't go crazy and don't drive a car or operate a machine until you are satisfied that it does not space you out or anything, cheers.
I'm interested in anybody who has built tolerance, what drug and how long it took.
My story is that I started on 400mg of Tegretol CR (Carbamazepine). This provided pretty much complete relief for 8 weeks then I had to up it to 600mg due to it seeming to become less effective. Again i had about 8 weeks of complete relief and then again it seemed to become less effective. I don't know if I want to climb an ever escalating ladder of increased doseage, as I don't see the point especially when it seems to be on a short timeline. I would also be interested in daily dose strategies, do any of you up the dose on days when the pain is worse ? and then slide back to a baseline ?.
Is there some kind of ceiling that you hit that becomes the effective dose but which varies from person to person.
It is strange that vast numbers of epileptics take this drug for years with good effect and yet when we take it for something else we develop tolerance, it does not make sense ?
Sorry to ask so many questions all at once and if there is a dedicated thread for this please feel free to re-direct me as i'm new to this website.
I was started on 200mg of tegretol, everytime i just got to grips witht he feeling sick and walking into doors thing i would get angry because i had no relief and my neuro upped my meds accross..2 months maybe? to 1200 a day, finally it helped. At first it did not take ALL my pain. I also had a chronic infection in my face so once that was operated on after initial agony, the tegretol seems to still be OK but i am left with new dicomfort in other areas and migraines that it does not treat.
With tegretol, there needs to be a therapeutic level in rthe blood. I was shocked when someone on the site told me they take more depending on there pain that day. Shocking.
It is not like taking a one off pain killer, you must always have a certain level in your blood for it to be effective and that means u cannot just suddenly stop taking or significantly lower or up your dosage in one day and expect correct treatment affects as it takes time for the brain to adjust. I hated tegretol those first 3 months, the dr's all said, dont give up it will be worth it just give it some time and i only stucj it out because i did not want all that sickness and evil side effects to have been tolerated all that time for nothing and low and behold, it settled in my body and seems to do its job well enough. Sometimes i hate the way it affects my thinknig ability and i think...maybe ill stop it...does it REALLY help my pain or am i getting better? and if i take a lower dose or nothing for a matter of two days, the pain gradually becomes more noticeable not to mention the side effects!
I would definitely agree with you that people can be helped on different doses, some take low doses in combination with other drugs too and find it helpful.
Also i just want to note, many people take tegretol for years and years and its fine with them, i think it depends on peoples cause of nerve problem, if its worsening and how there body breaks the medicine down and absorbs it..not too sure how to answer your tolerance question :)'
sorry for the essay, hoped some of it helped and welcome newcomer!
glider said:
I'm interested in anybody who has built tolerance, what drug and how long it took.
My story is that I started on 400mg of Tegretol CR (Carbamazepine). This provided pretty much complete relief for 8 weeks then I had to up it to 600mg due to it seeming to become less effective. Again i had about 8 weeks of complete relief and then again it seemed to become less effective. I don't know if I want to climb an ever escalating ladder of increased doseage, as I don't see the point especially when it seems to be on a short timeline. I would also be interested in daily dose strategies, do any of you up the dose on days when the pain is worse ? and then slide back to a baseline ?.
Is there some kind of ceiling that you hit that becomes the effective dose but which varies from person to person.
It is strange that vast numbers of epileptics take this drug for years with good effect and yet when we take it for something else we develop tolerance, it does not make sense ?
Sorry to ask so many questions all at once and if there is a dedicated thread for this please feel free to re-direct me as i'm new to this website.
My theory with these meds is that I never had any problem - but I never went over 900 mg trileptal --- so I started with one drink - then the next saturday nite out dancing I had 2 - and ended up having my usual 5 over a 5 hour period - do what feels ok....you will know if you over-do it
Haha! I feel the same way about my beer! I drink 2 or 3 beers and that's usually my limit. It hasn't affected me with the Tegretol yet. I need to be able to enjoy my beer.........or a shot or 2 of whiskey. The good part about being on the meds and drinking-you can't drink much so it's cheaper! LOL
Todd Friesen said:
nah - just don't consume like a handle a day haha
I take milk thistle for liver support and my blood tests always come back excellent so I figure I'm not gonna die from it any time soon. And this disease is bad enough without taking away my beloved beer too :)
I learned a long time ago at the beginning of this awful disease that having a drink to take the edge off the crappiness, made me a bit more tolerable to be around. Knowing my limit, as a glass or two of wine is my limit, is key. I figure if this disease can make my life really bad, what can a glass of wine make worse. jmo