Hello All

[Anna01]

I am new to this forum and just wanted to introduce myself. I was diagnosed with epilepsy 18 years ago, at the age of 12. I was first put on Valproate, and was on this for about 2 years. This caused significant weight gain, loss of mental acuity, extreme fatigue and 'out of it' feeling all the time. I was taken off of this medicine after remaining seizure free and 1 year later had 5 seizures in 24 hours and was put on lamotrigine. I have been on lamotrigine for 15 years now and it works well for the most part. I have had occasional seizures, but only when I had added risk factors, such as significant sleep deprivation. I have now been seizure free for 2.5 years. I have recently become very interested in finding out more about the effects long term use of lamotrigine might be having.

I'm going to post some of my queries in another thread. Would love to connect with other people who have been on lamotrigine for a long time/from a young age.

Cheers

 

[nana1]

Welcome Anna01

I have had seizures for over 50 years. i have been on LAMICTAL (is the brand name) also for a while I take 2 pills a day, they 200 mg each. I have been on it for about 6 years ( i think) so far so good, but i am taking it along with two other pills keppra and zonagram. So i do not know which one is giving me the headach 24/7. but every person have different outcomes of the pills their on.

Welcome again.

 

[Eibhlin]

Hi Anna01,

I have been on Lamictal since 2001, but have gradually decreased over the past 3 yrs (see new- reducing Lamictal in the Foyer, i've tried to give alot of detail!).

I don't know what the long-term effects are. I know there is a risk of cleft-palate if on it while pregnant (however, there could have been other factors s.a. genetics that weren't controlled for in the study), but it's a new medication, so who knows ... hopefully there aren't any!

 

[Anna01]

Hi Eibhlin, thanks for your reply I know that lamotrigine binds to melanin in the eye and they aren't sure what that might do, but otherwise I haven't come up with much...I guess that we are the guinea pigs, but I'd like to find out more.

 

[Anna01]

Thanks for the welcome nana1. I think I'm pretty lucky to be able to get away with just taking the one AED, sounds like.

 

[Eibhlin]

nana1, how do you cope with the constant headache? That's just awful.

Anna01, I've also only ever been on one medication at a time (apart from changing from epilim to lamictal in 2001).

I didn't know about the melanin - guinea pigs is right! I'm glad you started this thread - thanks

I think it's all about quality of life and getting the balance right. I'd like to think that because we're not putting our livers under extra pressure with alcohol etc. that it's getting eliminated.

op:

 

[survivor]

Anna dear ur history is quite similar to mine! But I am on Phynetoin and sodium valporate. leading quite a normal life for the world. But I know how I deal with small small problems in life. i go really low at times. It has been told to me not to talk abt god here but dear i am surviving just thinking abt Him all the time. lets be friends and share the experiences more often as i find ur experiences quite similar.

 

[Anna01]

Dr. Shagun Agrawal, It does sound like we have had some similar experiences in our medical history! It sounds from your post like things have been a struggle for you at times. It is great to be able to connect with people over this forum and learn from one another's experiences .

 

[survivor]

Thanx for replying dear Anna! I m also new here. Dont know much! But as they say trying to get comfortable!!! Yes.......................... life has been a struggle, but now somehow I like this struggle! I m married and have a beautiful 5 year old daughter. She is the gift god gave to me despite all odds. What abt u? Are u married? Answer if u like. Do share what U like! Bye for today!