What is your experience with Lamotrigine? Side effects?

Posted by maggiek @maggiek, Jul 24, 2020

I’m changing meds, from Dilantin to lamotrigine. Has anyone had a rash, other side effects etc. I’ m Interested
In anyone’s experience with the drug.

@maggiek

May I ask what type of seizures you hav e and what you are on for meds now? Do they work well for you?

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@maggiek
Not sure who This question was directed to so I thought I would answer it just for the heck of it.
I have idiopathic generalized epilepsy. So they don’t know why I have generalized or any other type of seizures for that matter but I have mostly tonic clonic and to a much lesser extent Focal Aware & impaired seizures which used to be called Simple & Complex Partials. I’ve also had numerous bouts of Status Epilepticus and also Absence Seizures which are Generalized seizures that start on both sides of the brain usually simultaneously. They used to be known as Petie mal seizures. When I first started having Tonic Clonic Seizures they were known as Major Motor Seizures. My current medications are 162 mg of phenobarbital and 1000 mg of Carbatrol extended release which is a time released brand name form of Carbamazepine.
Wishing everyone a seizure free future,
Jake

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@jakedduck1

@maggiek
Not sure who This question was directed to so I thought I would answer it just for the heck of it.
I have idiopathic generalized epilepsy. So they don’t know why I have generalized or any other type of seizures for that matter but I have mostly tonic clonic and to a much lesser extent Focal Aware & impaired seizures which used to be called Simple & Complex Partials. I’ve also had numerous bouts of Status Epilepticus and also Absence Seizures which are Generalized seizures that start on both sides of the brain usually simultaneously. They used to be known as Petie mal seizures. When I first started having Tonic Clonic Seizures they were known as Major Motor Seizures. My current medications are 162 mg of phenobarbital and 1000 mg of Carbatrol extended release which is a time released brand name form of Carbamazepine.
Wishing everyone a seizure free future,
Jake

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Hello Jake,
Lamotrigine has no side effects of drowsiness or memory problems. I have never experienced either those problems and I have never been told to watch out for either of them. Rash is the only Side effect I have been told that I should watch out for or would occur.

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@lsittll

Hello Jake,
Lamotrigine has no side effects of drowsiness or memory problems. I have never experienced either those problems and I have never been told to watch out for either of them. Rash is the only Side effect I have been told that I should watch out for or would occur.

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@maggiek

I took Dilantin for many years. It was very helpful. I had very good seizure control with it. It caused my osteoporosis, now osteopaenia. Once it went to my liver about thirty years ago that was it! Lots of meds were tried and lamotrigine turned out to be a good one.

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@lsittll

maggiek@maggiek,

I've taken lamotrigine for very many years. I am on a larage dos of it too; I take 330mg twice daily. I have never noticed any kind of side effect (s) to the medication. It has been very good for me.

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@maggiek

I have temporal lobe seizures. I am on a regimen of 1000mg Depakote, 200mg Zonisamide along with the 660mg lamotrigine. I take these for my seizures and seven other medications for medical conditions.

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@maggiek

Hi there.. I’m so new to this …so I’m probably going to,the wrong place to reply. I should go,to the appropriate “discussion” place First right?? I have three types of seizures …don’t remember what they are called. I take the. Meds Prescribed and It seems to,work except for the rare occasion when it’s not therapeutic. Thank heavens I have been as controlled as I have. I haven’t heard of the two meds you mention. I guess the doctor must think for the types of seizures I have the lamotrigine will work. Guess we’ll know once I start it. Hope you find something that will work for you on a long term basis.
Maggie

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@maggiek

Hi Maggie, you are doing fine. I am fairly new to this also. No worries. I just start typing and do my best, if it doesn't go to the right place I figure people don't have to read it.

Oh my gosh, you don't know what type of seizures you have? Finally someone that speaks my language. When I first started reading these posts I was wondering if I was talking to doctors. Eventually I realized no, they are just more interested than I am. For the most part I have been well controlled throughout my life so I spent my time in other areas. Recently that has changed so I am engaging a bit more.

The two meds I am taking are relatively new to the market and expensive. I am not interested in brain surgery until I have exhausted all of the other options. I have never seen an epilepsy specialist nor been to an epilepsy center. That is all about to change.

Good talking to you.

Mxy

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@lsittll

@maggiek

I have temporal lobe seizures. I am on a regimen of 1000mg Depakote, 200mg Zonisamide along with the 660mg lamotrigine. I take these for my seizures and seven other medications for medical conditions.

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@isittll
Are your seizures totally controlled wth the medications you’re taking?
Jake

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@mxyzptlk32

@maggiek

Hi Maggie, you are doing fine. I am fairly new to this also. No worries. I just start typing and do my best, if it doesn't go to the right place I figure people don't have to read it.

Oh my gosh, you don't know what type of seizures you have? Finally someone that speaks my language. When I first started reading these posts I was wondering if I was talking to doctors. Eventually I realized no, they are just more interested than I am. For the most part I have been well controlled throughout my life so I spent my time in other areas. Recently that has changed so I am engaging a bit more.

The two meds I am taking are relatively new to the market and expensive. I am not interested in brain surgery until I have exhausted all of the other options. I have never seen an epilepsy specialist nor been to an epilepsy center. That is all about to change.

Good talking to you.

Mxy

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All I know is that The doctor told me I have three different kinds of seizures… and I most definitely know how each affects me physically and mentally. As to the terminology the correct medical name, I know that my temporal lobe is the issue. That’s it. I sometimes wonder why in my 20’s after I had had two children why I would start having seizures. Who knows I could have been having issues in my growing up years and we wereN t aware of it. When I worked with an Epilepsy AwareNess group in my Much younger years It was amazing to learn of people who were ashamed, who thought they were possessed, who hadn’t left their homes, and I don’t think in some regards that has changed in a lot of places. Like mental illness it’s something Others can’t understand until it affects them personally. Have a friend who has had Numerous surgeries, had implants etc, and it is cutting down on the number of seizures he was having. Fortunately meds have worked for most of my life with few exceptions. Changing them now after so many years is scary for me. I resist taking meds. So many people take pills for everything and anything. Like you when I have a Problem I address it with help of a doctor, otherwise I live my life. I will say when it comes to changing my meds, that the long term use of Dilantin has created problems, and even though I am 72 years young I guess if I can change to something that may not be as hard on me I should. Have an18 year old granddaughter starting university this fall would love to be here for her graduation!

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@jakedduck1

@isittll
Are your seizures totally controlled wth the medications you’re taking?
Jake

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For,the most part. When levels drop that’s when things happen.

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Hi @maggiek, I am just a little bit behind you in years, feel the same way as you about meds and expect to live forever. You really should be able to see your granddaughter get married, have kids and see them graduate from college. Someone is going to live to 150, why not you?

I have only recently become aware of other people having spent most of my years looking inward. I find myself interesting enough to stay focused there. It is probably best too because I have some traits that, if they were turned outward, would just upset others. But yes I too am amazed, oh boy here I go, at the sheer idiocy of people and their outlook on epilepsy mental illness and things they generally don't understand. It is like people who think the world is flat or I who believes it is round but not having room in my mind for the possibility I am wrong. No matter what I believe I make room for science. What is wrong with people?

What have I heard about courage, It is not the absence of fear but the ability to overcome it? Something like that. I'm pretty sure your spirit is adventurous enough to give new meds a shot. Good luck to you. Sometimes it is better to be lucky than good.

Mxy

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@jakedduck1

@isittll
Are your seizures totally controlled wth the medications you’re taking?
Jake

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Jake,
I have all nocturnal seizures. I have one monthly. That is the best control ever! I have not seen my doctor in over a year. – it takes six+ months to get an apointment to see her. Hopefully she will increase the zonisamiide that has caused this GREAT change.

Take care,
Laurie

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@lsittll

Jake,
I have all nocturnal seizures. I have one monthly. That is the best control ever! I have not seen my doctor in over a year. – it takes six+ months to get an apointment to see her. Hopefully she will increase the zonisamiide that has caused this GREAT change.

Take care,
Laurie

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@isittll
Hi Laurie,
Nocturnal seizures can be dangerous. I would definitely talk to your neurologist about them. I would definitely talk to your neurologist about them. The reason I say it’s dangerous is because of SUDEP which stands for sudden unexpected death in epilepsy. Although this condition is rare approximately one in 1000 epilepsy patients and it usually happens in people with epilepsy who are not well controlled and who have Tonic-Clonic seizures however it can happen in people who are much better controlled also. I knew a 17-year-old girl in England who died from S.U.D.E.P. and many others for that matter and the 17-year-old daughter was much better controlled than her mother yet look who died . Many Neurologists refuse to even discuss this subject. Just because it’s rare doesn’t mean it doesn’t happen. I have talked to many parents who have had children die from this horrible condition and their doctor never told them one word about it so those parents never knew why their children died. Some parents only found out after they read it on their child’s autopsy report I have talked to a number of parents who found out that way, you can imagine how angry they were. Although I am much better controlled now, if I were having nocturnal seizures I would have a very very serious talk with my Neurologist.
Many people with nocturnal seizures fall out of bed and get hurt in other ways too, this could happen to you too. Just because it’s rare that doesn’t mean that it can’t. Don’t ever forget that no one can predict when, where or if a seizure will occur, what type it will be, how serious or mild it will be or what will happen during that seizure or anything else about it. You may become a seizure free the next time you have a seizure and never have another for the rest of your life or it might be the mildest you ever had or it might be lethal.
Absolutely no one can predict it and if a doctor or someone thinks they can turn and run as fast as you can and never look back.
My parents were told I would have seizures frequently for the rest of my life, obviously they were wrong. Just because your seizures are currently mild that doesn’t mean they will stay that way, don’t ever take any seizure for granted!
Take good care of yourself,
Jake

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Hi Jake,
My seizures are psychomotor. They were only tonic clonic when I was a child before I ever took medicine. Mine are at night but not in bed. So I don't know I can get SUDEP.
Take care,
Laurie

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