changing meds?

[marion]

I'm very confused right now. I've been taking lamictal (my first med for seizures) for four months and have had side effects for two months, when the dose was raised to the present level. The good thing is that it's controlling my seizures, but the side effects are really getting to me. I think about changing meds but I worry that 1) it will make me more susceptible to seizures during the switch, and 2) that the side effects will be worse, especially when I'm on two meds instead of the one. I know no one can tell me if the new med will have fewer side effects, but if anyone has insight into anything about switching meds, I'd really appreciate hearing it. Thanks!

[Nakamova]

The length of the overlap period will depend on the med you switch to -- some meds, like Keppra, you can taper onto fairly quickly, but others take longer. Also, some anti-epileptic drug meds can affect each other's absorption rate or blood serum level, so that can also influence how the taper on/taper off period goes. But if your seizure control has been good with the first drug you tried -- in this case, Lamictal-- then that bodes well for the transition process to a different anti-epileptic drug, and suggests that you'll also have seizure control on the next one.

I'm on my third anti-epileptic drug. I've never had a problem with seizure control during the transition from one med to the other.

[marion]

That's very good to hear Nakamova - thanks for sharing. I'm going to try! to talk to my doctor tomorrow about switching.

[Nakamova]

Just out of curiosity -- what side effects are you having on the Lamictal? I'm on it now, and some (but not all) of the side effects became less of problem after about 6 months.

[marion]

Really, after six months. Maybe I should stick it out. My current side effects would be ok for a few months if I want to wait.

I'm having trouble with my vision, some days are worse than others. Things are blurry, sort of. It's hard to focus. But I can see ok and I can read so it's not too bad now, but I'd hate to be like that long term. And I have a metallic taste in my mouth that keeps getting stronger. It's very unpleasant, but again, I can live with it short term. And the last one is the sticky skin that I talked about in another thread. It scares me because apparently it's so rare, and it's not listed as a side effect for lamictal, although I'm certain it is for me. I've looked into it and it is a side effect for a medication used to treat prostate cancer. My skin is sticky when it's damp, but not when it's dry or wet. It's starting to drive me crazy!! but again, I can live with it short term and wait to see what happens.

What side effects did you have that lessened?

[Nakamova]

I have the blurry vision too -- unfortunately that's not one of the side effects that went away. My neurologist had the nerve to suggest that my blurry vision came from diabetes (which I don't have, and am not at risk to have). I don't need glasses yet, but I'm doing a lot of squinting now. I also still have minor acne on my chin and face, drymouth and eyes, and my blood pressure is higher (t e b.p. would be a rare side effect of Lamictal, so it's hard to know if the med caused it. On the other hand it started right when I was on my full dose of Lamictal.) The side effects that did improve for me were hair loss and weight gain. Initially I also had very poor sleep, but that has improved as well. From all the research I've done on Lamictal side effects, there's a wide range and they're different for every person. For some people they go away and for others they get worse. The time period for a change in side effects (either better or worse) seems like it can be anywhere from a few months to 2 years.

So I definitely understand the temptation to switch meds -- but I'm just weary and wary of having different or worse side effects with anything new. I hope you have good luck either way.

[marion]

That's exactly how I feel - wary of things being worse if I change meds. At least lamictal doesn't make me feel bad. On the other hand, there's still the thought that there's a med out there that would be better. Maybe I'll wait a few more weeks and see what happens. You've been helpful - thanks very much. And I notice that we're neighbors, I'm in Connecticut.

[Nakamova]

Howdy neighbor! I hope you have good neurologists in Connecticut. I'm in a city with some great epilepsy hospitals... but the focus is all on the drugs and surgery. I'd love a neurologist who was actually open to neurofeedback as a strategy for people who don't need more extreme treatments.

[Rae1889]

Phew, its good to hear that the hair loss got better. I think mine is starting to fall out. I thought at first it was getting healthier, But not anymore. Or maybe its that I am looking for hair loss that I think I see it, even though its been like that the whole time.

I also have super super vivid dreams from lamictal. But I usually know when I am dreaming or not. pretty good with lucid dreams.

nothing else though that I have noticed. *I totally just touched my clammy skin to see if it was sticky though, and I'm glad its not.*

Good luck Marion!

[Nakamova]

I had very vivid dreams when I first went on Lamictal, but that was another "side effect" that went away. Although now I sleep better, I miss my dreams.

[marion]

Yeah, I have vivid dreams too - a side effect that I actually like. And I'm also more emotional - I tear up more easily watching a movie, or hearing something touching. Like that too. I don't sleep well but I didn't before the lamictal either.

Rae - you'd know if you had sticky skin. It started for me when I was in the kitchen and dried my hands. They felt sticky so I thought I didn't wash them well, so I scrubbed them and they were still sticky after I dried them. But after they completely dry, they seem normal. Then I realized all my skin was like that. I suppose I could get used to it. Did you have any other side effects when you started the lamictal?

Nakimova - I'm in a small town in NE Connecticut and I don't know if my neurologist is any good, he may be, but it seems that he doesn't pay a lot of attention to me. I'd talk to him about this but I can't talk to him on the phone, and can't get an appt for several weeks. When I called I talked to his nurse who then told him what I said, but it's hard to really explain my side effects that way. I'll be able to drive again in two months and then I intend to see a new doctor just to get another opinion. It sure would be good to find one who wasn't just a drug pusher - do they exist?

[darcness]

When it comes to E, getting as many opinions as you can is always a good idea. I know for a while I was pretty upset with my wife's neurologist, but things have been improving with him the last couple times we went, so we're giving him another go. He's a good doctor, just seems to be very hard to reach via the phone. When we are there though, he's very thorough and explains everything clearly.

As for the med change, I really think it's worth it to try to find a med that works well and gives you SE's that you can live with. My wife was on Depakote which did a good job to control her seizures, but also gave her horrible side effects. Now she's on Keppra and the transition has been pretty good. She did have a bunch of seizure activity in her sleep yesterday, but that's the only complication so far that I know of.

[marion]

I wonder how likely is it that someone on seizure meds doesn't have bad side effects? I don't know if that info is available - probably not. But knowing would make it easier to decide if it's worth trying another. Seems that most people here have do have SEs.

Right now I'm thinking I'll stick with the lamictal for another two months, and if the SEs don't get better, I'll try another med. But I could change my mind tomorrow - I'm finding it a difficult decision. That's good to hear that your wife doesn't have such horrible side effects any more. May this be the start of a good time for both of you

[darcness]

Well it's still too early to tell. She's only stopped taking the Depakote about a week ago, and I'm sure there will be some SE's that come about from the Keppra. Hopefully though, it'll be less then what it was on the Depakote.

Time will tell I suppose...

As for the likelyhood of SE's, that's a tough one. Some people are more sensitive to medication then others. Also some medications have SE's that maybe one person could tolerate while another person couldn't. It's just such a mixed bag that there's no real way to quantify it. It's unfortunately as much about trial and error as anything else.

[Rae1889]

I was told that lamictal would be the one with the least side effects. I doubt that is true, as my doctor seems to make stuff up as he goes along.

I also had a nice litle arugement with mt chiroprcator becuase i told him i wanted to stop comign every week and jsut be casual, and he said htat in ihis 26 years of being a chiropractr he has seen 6 people with epilepsy and 5 are now completely siezure free an no meds, because he asid it a a 98% completely cureable disease. I think he is nuts and jsut wanted to keep us there to maek moeny.

But I wan tot tyr nuerofeedback and diet, as those would have way better side effects than loosing hair nadn etc.

[darcness]

Hey Rae, if you read this please go take a second and lay down. It seems as though you're having a bit of trouble typing.

Perhaps wake up Chad or go snuggle up with him for a while.

[Meetz1064]

number of side effects vary by person. However, Lamictal does tend to have fewer ones.

And Rae, I really do think your chiropractor may have been a little bit nuts. Please go take a nap, OK?

[marion]

This has all been very helpful to me - just talking to people who understand feels so good. Thanks everyone for your comments.

[BuckeyeFan]

Vivid dreams. Funny, I thought when I started dreaming so much that it was from coming off Keppra. I thought the Keppra had suppressed my dreaming. Now I think I understand that it is from the Lamictal. Mine seem to be getting less vivid now after 10 months or so. Never really bothered me, I just noticed them.

No other Lamictal side effects that I have noticed. Definitely better than what I had with the Keppra before I switched (though it worked great for seizure control).

I am also on dilantin which can cause excessive hair growth. Maybe the two are offsetting each other. No hair loss here.

Blurred vision has been there, but I think that is just coincidence with my age (4. It is corrected by glasses now. I doubt that it could be corrected if from Lammy.

[darcness]

Buckeye that made me chuckle about the dilantin and lamictal "cancelling" each other out on the hair loss/growth front.

I just got a thought of the two meds in your body, one trying to grow hair and the other stopping it from growing. For some reason it was really funny to me. Not sure why now that I think about it.