Hello All

[Malakai]

Hi,

I am new here and very new to epilepsy / seizures. I have just started Lamotrigine today and from what I can tell I have a whole host of side-effects to look forward to!

So far my seizures don't have a pattern with regards to the time of day I have them since I've had first thing in the am, last thing at night and also in the afternoon. They usually start with a buzzing in my left ear, followed by a fuzzy / surreal feeling across my whole body coupled with the inability to talk. After maybe 10 seconds of this I blackout only to wake up anywhere between 5 - 15 minutes later very confused. My average seizure lasts for about 3 - 5 minutes (generalised tonic-clonic) and then I remain unresponsive for 5 - 10 minutes after. I am 27 years of age and hadn't experienced anything like this before so it's a bit of a shock to the system and it sucks majorly losing my drivers licence and for now not being able to take my kids out alone. Things you just otherwise take for granted.

Another thing that has developed since my first seizure is that I stutter quite a lot, something I never used to do.

I look forward to talking around the forums and getting to to know more about epilepsy.

See you all around

 

[Fedup]

Malakai

You are very welcome to C.W.E. its not that you have a whole host of side effects to look forward to, but side effects you need to look out for because some can be dangerous if they last or you are not able to handle them. It's not easy to handle all that goes with epilepsy at the very start but it will start to get easier in ways, the hardest thing is excepting epilepsy. Ask the questions and the good people here will try to help you.

 

[masterjen]

Hi, Malakai and welcome to CWE!
First I'd just like to say that experiencing side effects is not a "guarantee" by any means. Don't forget that the majority of people who come onto forums are not only people like yourself who are new to seizures but also those who have problematic epilepsy (uncontrolled despite medication, other complicating health issues, medication side effects, etc.). Believe it or not, once the body has been given time to adjust (sometimes a few weeks) the majority of people do not have significant side effects from their anti-seizure medications! The best rules of thumb are to increase to the desired dose gradually (even slower than the usual recommendation can be helpful, if feasible), and to take the medication at the same time every day.
Wishing you the best, and looking forward to seeing you around the forums.

 

[Malakai]

Malakai

You are very welcome to C.W.E. its not that you have a whole host of side effects to look forward to, but side effects you need to look out for because some can be dangerous if they last or you are not able to handle them. It's not easy to handle all that goes with epilepsy at the very start but it will start to get easier in ways, the hardest thing is excepting epilepsy. Ask the questions and the good people here will try to help you.

Hi Fedup,

Thank you for the response and the welcome. I am hoping I'll be one of the lucky ones, the neurologist is starting me on way below the required dose to work me into it. It wont be until week 6 that my level is at a point where it would be effective.

Hi, Malakai and welcome to CWE!
First I'd just like to say that experiencing side effects is not a "guarantee" by any means. Don't forget that the majority of people who come onto forums are not only people like yourself who are new to seizures but also those who have problematic epilepsy (uncontrolled despite medication, other complicating health issues, medication side effects, etc.). Believe it or not, once the body has been given time to adjust (sometimes a few weeks) the majority of people do not have significant side effects from their anti-seizure medications! The best rules of thumb are to increase to the desired dose gradually (even slower than the usual recommendation can be helpful, if feasible), and to take the medication at the same time every day.
Wishing you the best, and looking forward to seeing you around the forums.

Thank you for the response and the welcome masterjen. I will be trying not to jump to any conclusions about anything and just wait eveything out to see what happens. I have been doing a lot of reading on wikis and forums just to try and get clued up. Your suggestion about starting lower than desired is exactly the approach the neurologist has taken with me - it will be 6 weeks until I am at the desired level.

Thanks again.

 

[valeriedl]

Hi Malakai,

I can relate to so much that you have said that I think we could almost be epilepsy twins!

I had my first seizure when I was 27, 12 years ago, and it came out of nowhere. My seizures will happen at any time of the day, which is normal for many people.

They usually start with a buzzing in my left ear, followed by a fuzzy / surreal feeling across my whole body coupled with the inability to talk.

This would probably be considered a simple partial seizure. Most people get them before they go into complex partial or tonic clonic. It's sometimes considered a 'seizure warning'. Sometimes I'll get them and sometimes I won't.

After maybe 10 seconds of this I blackout only to wake up anywhere between 5 - 15 minutes later very confused.

This is would be a complex partial seizure. My seizures usually last 5 to 10 minutes. It takes me a while before I'm completely out of it, when I'm able can answer questions right and know what's going on around me. Sometimes I'll have a horrible headache after.

I rarely have tonic clonic seizures but when I do the same thing happens.
[/QUOTE]

I am 27 years of age and hadn't experienced anything like this before so it's a bit of a shock to the system and it sucks majorly losing my drivers licence and for now not being able to take my kids out alone. Things you just otherwise take for granted.

I also lost my drivers license. It's very hard not being able to drive and having to wait or adjust my schedule around so that someone else is able to take me places.

At first I was having about 20 very bad complex partials a month, I'm down to on average 6 a month now and they aren't nearly as bad. At first my family didn't want me to be anywere by my self at all, whether I was home or in public. After a while when they understood more about epilepsy they are ok with leaving me alone in most places.

I don't have children. I don't know how old your's are but once they learn more about epilepsy and what to do during a seizure someone may be able to drop you off places and leave you alone. It would still suck having someone take you there and pick you up, my family will do that for me when I go out with friends, but at least you'd be with them.

Another thing that has developed since my first seizure is that I stutter quite a lot, something I never used to do.

I have a good bit of problems talking. I have trouble with word finding. I'll tell someone the furry thing that runs through the house - but just can't think of the word cat. I will stutter at times but I know it's more due to the word finding. These things can be caused my the meds or epilepsy.

I have just started Lamotrigine today and from what I can tell I have a whole host of side-effects to look forward to!

Side effects of meds may take a few weeks to go away because your body needs to get used to the med. Sometimes they will go away and other times they won't. Sometimes you just learn to deal with the side effects and they become an everyday thing to you. If the side effect stays after being on the med for a while and you can't deal with it let your neuro know and your neuro will probably try another med.

If the side effect is very bad from the start let your neuro know. I have had to be taken off of meds early on because of it. On one of the meds I basically stopped eating the first two weeks I started taking it. We called my neuro and told him and he took me off of it right away.

The first med you are put on may not always work and others will need to be tried. I had go through different meds before we found ones that helped.

It's nice to meet you and I know you'll get some good advice on here, I know I have, and be able to give some too!

 

[llanarth]

Hi Malakai,
It's hard losing your driver's license....I took a high dosage of drugs when I was younger, and learned to drive, but unfortunately eventually gave my license up again as my epilepsy just didn't respond reliably, if you know what I mean.

I don't know your background, or why your epilepsy has started, but I feel it's well worth looking at triggers or cutting out sugar or gluten to see if it makes a difference or other triggers. Many adults are using these diets successfully.

My heart goes out to you...About a month ago, my grand mals started to get worse again and it does eat away at my confidence. I wish you all the luck. I've just started a special diet, and it has made me feel better...it's too early to say how successful it it though. Best of luck!

 

[Ruth]

I have just started Lamotrigine today and from what I can tell I have a whole host of side-effects to look forward to!
I am 27 years of age and hadn't experienced anything like this before so it's a bit of a shock to the system and it sucks majorly losing my drivers licence and for now not being able to take my kids out alone. Things you just otherwise take for granted.

Hi Malakai, glad to meet you. This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

I am on Lamictal (Lamotrigine) and I have had no side effects. It has worked well for me and a lot of other people.

I was diagnosed when I was 6 years old. I am 72 years old now. When I was 16, I was able to make the choice of whether to drive or not. I decided not to drive because I could have a car accident. Whenever we move, we always make sure we are within close range of a bus stop.

I always took my children for walks just about everyday. I taught my children what to do in case I had a seizure. I never gave it a thought.

:cheers: