New to posting anywhere...

[Bee]

I am a 61 yr old female, diagnosed with epilepsy at age 38. I have been well controlled over the years with only 4 seizures. Now, my medicine is causing my sodium to be low and my Dr has changed me to a medicine that has made me really sick. After talking to him, he has agreed to try another med, putting me back on my old med briefly until we could increase the dose of the new med. At least I am coming off the one that has made me SO sick. Now I am afraid that this other med will allow break through seizures... I hardly know anything about it, except what I have read on the internet, and it is talked about as being one of the "crazy" meds.... I am very concerned... I just don't know who to turn to. I help care for my mother who is 90, and driving is very important ... I don't need a seizure... The new med is Lamictal. Does anyone take it for Grand Mal seizures without taking anything else with it?

[epileric]

You're so lucky to have gone so long without any seizures, or to have had so few.

May I ask, what medication were you on & what are the ones that are being tried? All medications have their side-effects but even the ones with really bad reputations do help some people with the crazy aspect of the drugs not effecting that segment of users.

Regardless of what anyone else says you're not really going to know how you react to a medication until you try it. Also remember stress is a common trigger for many people so try not to stress yourself out too much (I know it's hard).

Meanwhile take a look around the site & make yourself comfy. You can even use the "search" option at the top if you want to check out anything specific or you can just join on in and ask.

[Bee]

Thank you for replying. I know I am lucky for being so well controlled, and I am thankful....
I was on Tegretol XR, my Dr switched me to topamax. OMG I thought I would die, actually wished it at times. Finally threw up blood __ it had irritated my esophagus so much. I couldn't eat, couldn't drink... So he was going me to lamictal. Then all that happened.... So, he got me off the topamax over several days and increased my old Tegretol XR. I'm just staying home right now. No driving. Trying to be quiet, no stress... and let the tegretol do it's job. I just wish I could take it, but it's caused my sodium to be very low. I am really concerned that the lamictal may be the same sort of drug that topamax was, and make me sick. I'm on a very small dose right now, because it's one that has to be increased very slowly.

[jyearta]

Bee, Welcome

You find help and support here.

I am 59 years and female, I am on dilantin and klonpin.

If is any comfort for you, I too am going through the medi. change thing.

I have tried several others, the tegretol and Lamictal, couldn't handle them,
I couldn't take Keppra, however there a lot in here that has no problem.
We are all different, like Epli. said early.

Changing Med is bad for everyone, cause the only way to find what works for you, is to try it.

It sounds like you have a good Dr.

Do you have family to help you? Don't hesutate to call someone for help, you might be surprised to find they want to help.

Thank care.

[epileric]

I'm also on Tegretol XR (actually it's CR up here in Canada). It seems to be what controls my seizures the best, which is really barely at all.

I do go for tests to make sure my liver, sodium & other levels are OK too.

I think you're very smart to be careful re. driving.

[Bee]

I have a great husband, and a wonderful mother. My mom is 90 and it hurts her so bad that I am going through this... My husband has been calling all day from work to check on me. Medicine changes are bad. I have been doing some reading about Lamictal and it looks like it's a bad drug, like topamax was. The only side effects I had from Tegretol (besides the low sodium) was some weight gain. And the low sodium just showed up this year. I didn't like the weight gain, but when compared to feeling this way, I'll take the weight gain. At least I had some energy. I always thought I had a good Dr, but I have an appointment in Oct for a second opinion. Just to make sure. Thank you for writing... Knowing I am not the only one helps ....

[Nakamova]

Hi Bee --

I'm on Lamictal with no other meds, and it controls my seizures fine. I have only minor side effects, and have been seizure-free since I started on it 3.5 years ago. No breakthrough seizures.

Every medication can potentially have negative side effects for some people -- and as with anything online these days, you're more likely to hear about negative reviews than positive ones. My own experience with Lamictal has been basically positive. In its favor, Lamictal is recommended by many neurologists because it tends to have fewer cognitive side effects than some of the other meds.

A downside is that you have to taper on very slowly, so the transition from one drug to another requires patience. In addition, it can take a few months for the brain and body to adjust to any new med, and Lamictal is no exception. For my first 2 months on it my sleep was quite restless, and I had very vivid dreams. My hair was falling out a faster-than-usual rate. Both of those side effects went away.

I agree that medications changes can be stressful -- and I hope yours ends up going as smoothly as possible.

Best,
Nakamova

[Bee]

I hope I can "talk" to you more about the lamictal. Have you ever been on topamax? Bad side effects. Terrible taste in my mouth. No appetite at all. Dizzy. Really bad balance. Do you have any of these side effects on lamictal? My Dr seems to think I'm depressed, but actually I just feel terrible!!!!! I feel like I'm going to throw up most of the time.... This is my first day off the topamax. From what I've read, it takes about 4 days to get out of your system. But I think you can understand that I don't want to go from one that has side effects like that to another that has equal side effects.

[Nakamova]

I've never been on Topomax (prior meds for me were Dilantin and Zonisamide). Lamictal hasn't affected my appetite or my taste buds. I've gained a little weight, but I'm not sure I can blame the Lamictal, since I had lost 15 pounds on the med I was on before. I've experienced a tiny amount of dizziness -- not the kind that affects balance, but more like when you move your head in the up direction while scrolling downwards on the computer screen. A small, momentary odd lag sensation. But it happens very rarely (I can't remember the last time.)

My least favorite Lamictal side effect is blurry vision. I had perfect vision before I went on Lamictal (due to laser surgery years ago), but almost immediately after starting it I began having blurry vision on and off during the day. It's not extreme -- I haven't had to get glasses, and it doesn't affect my reading vision at all. But I find myself squinting more at middle distance stuff, like traffic signs at dusk. I also get chin acne from the Lamictal -- again not too bad, but annoying. And during the night my eyes and mouth get very dry. I keep eyedrops on my bedside stand so I can open my eyes more easily in the morning.

The trial-and-error method for meds is no fun, but unfortunately it's the only way to know if a med will work specifically for you. The thought of going from the "frying pan into the fire" in terms of side effects can be daunting, but the potential benefits are worth considering too.

[Bee]

Thank you for your reply. Lamictal doesn't sound as bad as topamax, but I know someone who took it (not for epilepsy) and had none of the side effects.

I was almost ready to stop it, but I will continue with the increasing dose according to my Dr's directions.

Again, thank you. It helps so much to correspond with someone who is in the same boat!

Take care... Brenda

[mel239]

Nak- I too had perfect vision due to laser surgery-eyesight bad as a kid-surgery was 22 yrs ago and my vision is awful now.I thought about having my eyes re-tweaked but I hate to waste the money if the meds are going to make it worse-have you ever checked on getting redone? sorry to change subject,but I just noticed you had that done.

[Nakamova]

The blurriness comes and goes, which makes it less likely to be correctible by laser surgery. I think the blurriness is caused by the fact that Lamictal binds to the melanin in the eye. (Melanin helps protect retinal cells and sharpen focus. It reduces violet and blue light entering the eye, which provides increased contrast in vision). So unless I go off the Lamictal, laser surgery won't help. And even then, it's possible the effects of Lamictal will linger -- one study on rats showed that after a single dose of Lamictal, traces were found in the eye a full year later(!)

Another factor: My eye surgery was done a little over a decade ago. I'm not sure sure I could shell out the cash to have it done now...

[Bee]

I'm really glad to know about the blurry vision with lamictil. I only have vision in one eye, and that would really create a problem for me if it got worse in my only good eye... Thanks for the info....