Lucii - does anyone take lamictal??

[Lil 1]

So I just picked myself up and brushed myself off and carried on as if nothing had happened. Away from this forum I do not really talk about my E, so I keep it locked in the vault at work.

Be careful. I completely understand now wanting to share, but you wouldn't want some one to find you and do something wrong... people are so misquided when it comes to seizures. I think everyone in my work place knows about my epilepsy now because the second I move to a new department or building I tell some, but only because when I told one perso he asked if he should shove a spoon in my mouth to keep me from swallowing my tongue. At that point I decided I would lecture everyone about it for my own safety, but my situation is also a lot different than yours too - I do not regularily have seizures. I also work in an office that is part of a steel mill so if I had a seizure or wondered off I could be dead easy.


AND I TAKE LAMICTAL - sort of. I am switching to it right now from tegratol and I thank-you so much for posting your experience. It was your post that I found when I googled "Lamictal and _____Ican'tremember_____" which got me hooked on the forum. Drug sheets can only tell you so much and eventually it is nice to hear from some one who doesn't speak "pharmaceutical company covering their butt and listing everything."

[Vicky]

Hi

I take Lamictal and I've had a good experience with it I take 250mg (x2 doses of 125mg) a day. I've had two seizures like you, my one was 2nd June (next Tuesday with be 6 months without one!) and I've had no problems since.

I suppose I could say that I've had the same sort of side effects, especially with my appetite. Sometimes I could eat loads and other days I don't really fancy anything


To be honest cos my epilepsy is well controlled, I really don't want to change cos it worrys me that it will trigger my seizures again.

[rudy]

I'm just now starting on Lamictal, so I haven't
really gotten anywhere just yet, but so far, it's
too early for me to post anything on this yet!

Well now, I just got my Rx of Lamictal (lamotrigene) and the 'starter pack' that the Dr spoke of isn't covered by my insurance.
I will be coming off of 550 mg daily dosage of Dilantin and ramping up on Lamactil.
The question that I have is how much reduction of Dilantin vs. increase of Lamactil is there to be?
Drop 100 mg Dilantin and take 1/4th of a 200 mg Lamactil tablet daily for the first week and so on until Dilantin is replaced by a single 200 mg Lamactil tablet?
I have only read a small bit about physical & psychotic effects from Lamactil recently but it would be normal to me as I've been going that route for the past year since having Dilantin dosage upped from 300 mg to 550.
Oh yeah, the valium and Fossamax do their part so my mind and mood and memory are like mercury lately. Hot,subject to rise and fall, and I have the attention span and focus of a chihuahua. I don't bite tho...
If you had the dosage regimen that's necessary since I got the 200 mg daily maintenance dosage of Lamotrigene already; I willingly accept the mental gymnastics coming up just to keep the freedom of being able to drive my car.
I am surprised that my PCP never stated that the meds could possibly cause me to lose my mind ( license ). Wish me loads o'Luck !

[Lil 1]

From my understanding, the dose you are taking isn't even a therapeutic dose.

How do you know if it is therapeutic. My doctor told me blood tests are not necessary on Lamictal, but I am only taking 75mg 2x day. Tomorrow morning I am going in to specifically ask for a blood test. I have not had a seizure since switching from Tegratol, but my Tegratol blood tests gave me peace of mind. I am finding it hard to understand how they came up with my dosage. With Tegratol it was all testing to reach the lowest level of the therapeutic zone.

[brain]

I am now on the full titration of
Lamictal and it's working baby,
it's working! Unfortunately, I am
now also on 3 anti-epileptic drugs
plus Folic Acid ...

[Ruth]

Hi
When I was 6 years old I was on Dilantin. I got Stevens-Johnson Syndrome. I lost my skin and my parents were told I was going to die. They wrapped me up in some medicine, probaably an antibiotic. Yea, it is serious. Well, 59 years later I am still here. It is deadly and not to be taken lightly. I do not know how long I was in the Children's Hospital in San Francisco or how long it took me to recover once I got home. I have never been the same health wise since.

[rudy]

Well, It's the new year now and I am almost done with the Dilantin/Lamictal titration changeover. I've had people comment to me that they have noticed positive attitude and memory changes in me.
From here on in its going to be Lamictal@200mg tabs daily .

[ellie]

Hi there. Nice to meet you. Ive been on 400mg of lamictal for few years now and havnt had any side effects. Didnt realise sore joints were one. Interesting. I quite often ache so I wonder if that is something to do with meds. My lamictal was increased to 450mg yesterday so we will see what happens now. Ellie xx

[Ruth]

Hi Ellie

I take 400 mgs of Lamictal. I do not have any problems at all. It is one of the best medicines I am on.

[brain]

So far it's sounding like it's
going to be a great year for
everyone on Lamictal!

[paradise survivor]

Oh sure, leave me to be the rain cloud on the Lamictal party...I took it for about 2 years. I had fair contol that went to poor control. I also began to have significantly more migraines. But my biggest 'whoa..don't do that again!' was with the Topamax that my neurologist switched me to to stop the migraines. We'll just call that 'the missing year'. Right now I am almost med free- I take a small dose of phenobarbitol. I am doing pretty well for the past couple of weeks but I am in no way controlled and I must pay close attention to any auras and watch for triggers. I have not done well with the different meds so I practice self awareness and try to get plenty of rest. Right now, it is working...I am grateful for the break how everlong, and a little nervous about when it will rear it's ugly little head. Sooo, I hold my head up high and remember to look for soft landings

[joan]

My son on lamictal since 2006. We are now finding out his cognitive memory shot. He is in therapy to work on it. The Dr is trying to figure out if the memory loss from the med, the E or something else. I think Lamictal has made him loss his appetite and hurts his sleeping pattern. He has mentioned switching Phillip off of Lamictal to see if the memory does better. 1) Im not in a hurry to make any switches and 2) Lamictal is doing its job for my son plus hes only on 300 mg a day. The puzzle continues.

But the Dr said there is a lamictal xtended coming out that you will take once a day. We also use an anal depository for Phillips grand mals, they are now coming up with a nasal spray. How nice : ) HE also said they think within the next 3 - 5 years they will isolate the E gene YEAHHH!!!

joan*

[Crazy Monkey]

Be careful. I completely understand now wanting to share, but you wouldn't want some one to find you and do something wrong... people are so misquided when it comes to seizures. "

I will not share my seizures with the people at work, not even if it is for the best, they would probably react ok, but I do not know it for sure and I cannot stand being talked about behind my back. With the 3 drop seizures I have had, they didn't cause me a problem, apart from a few bruises and leavng me a bit shaken up.

We have about 50 first aiders on site and a nurse, the nurse knows about my situation and she has made sure that the first aiders have been trained to deal with seizures because of me (she done this discretely), just in case I ever T/C at work, which is unlikely, but you as you all know, you can never tell what is going to happen. I have a fully trained first aider who sits about 10ft away from me, who would know how to react in a seizue situation. In an emergency, the nurse is always called and she knows about me, so in a roundabout way I have got my ass covered without having to tell anyone I work with other then the nurse.

[joan]

DO you also wear a medical alert braclet? Are you close to anyone at work that doesnt know? Do you think they would feel bad you didnt tell them? Im not judging. Im just asking as my son wont share the info with anyone. His college knows and a FEW good friends. It worries me he wouldnt tell work or others.

Im just trying to listen to the "other" side.

joan*

[BuckeyeFan]

Welcome to our group. I think you will find this a great place to visit quite often.

I have had tonic clonic seizures for over 27 years now. I have taken dilantin that entire time. 5 years ago I added Keppra which did a great job for me until lately.

Right now I am slowly being taken off of keppra and am ramping up on Lamictal. So far so good. I have been taking 100 mg twice a day this week and go to 150 mg next Monday. That should be where I level off. No side effects that I have noticed yet.

Two things I noticed in your posts. 1) Make your doctor listen to you or find a new one. Can your parents still help you with that? Many epilepsy patients need to try several doctors to find one that will treat them well. 2) Please don't dismiss your symptoms without considering other causes. This may not be e-related. You should be evaluated for other issues as well.

Best of Luck!!!

[alivenwell]

I think it's great somebody brilliantly thought of nasal sprays for medication. The only thought I have behind them is how does one measure how much medication is entered into the system?

[John-Forrest]

A few months ago my doc added Lamactil to my usual dose of Dilantin. I've been on about 300 mg/day and have experienced dramatic personality changes. Normally I'm very introverted, keep to myself and have been diagnosed with Asperger's Syndrome. I noticed almost immediately a dramatic change in my personality - I started becoming more outgoing and more interested in people. It is almost like a cure for my AS problem. I did notice fewer seizures. I also take celexa for depression, the two are related, they are both anti-depressants. I notice occasional feelings of being tipsy since I took it. All in all, it's made me feel a lot happier and calmer around other people. It also makes me horny, like a love drug.

This happen to anyone else?

John

[Rae1889]

Lamictal is also used for bi-polar to keep their brain in a more normal chemical balance. maybe this can help those with asperger's syndrome too. maybe it is chemical that causes this syndrome. i'm not sure, so i guess i'll google away.

[Ruth]

I am on the generic brand of Lamictal. It is Lamotrigine. I take 200 mg 3 times a day. It works great for me. I have been on it for years.

It sounds to me that you need to change neurologists. Your doctor is not listening to you. My doctor sees me about every 3 months. I can always call him if I have a problem.

I truly hope you get better. Welcome to CWE.

[Crystal11]

I just started Lamictal on the 19th of last month. I started at 25mg once a day, then twice a day like I am now. When I go back to neurology, I'm sure he will increase it, as 50mg twice a day is not very high for an adult. I take Keppra XR 3000mg and Tegretol XR 600mg a day. I will be getting off of Tegretol over time.
I definitly would ask about another medication. If you ever have an side-effect that causes pain or other problems for you- that medication isn't right for you. You do have the right to ask for another medication and you have the right to speak up when something is wrong- or you feel is wrong.

Wish you best of luck..