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lmsylvan
lmsylvan

Just Starting Lamictal - What Can I Expect?

Hello,
I had nocturnal seizures when I was 18-22. Only a few 6-8 - then they went away. I was weaned off of Tegretol when I was 24 and had no problems for 18 or so years, and no meds. I am 44 now. Then, about 2 years ago, I started to experience what I called "deja vu." My PCP sent me to a neurologist in Jan 09 who told me that I was having "absence seizures." These episodes were often when I was exercising or working, and would only last 8-10 seconds, then I was fine. I told my fiancee about them. The neurologist recommended Lamictal for them, stating that they could possibly turn worse (but no proof of this). I decided not to go on the Lamictal. Then, this past Wednesday night, i had my first nocturnal seizure in over 20 years. It lasted 90 seconds and was grand mal. I saw my neurologist the next day (4 days ago) and have started the Lamictal. I'd like to know about people's experiences with this drug. i am very very active. I am in the computer field and do public presentations. I have read some disheartening things about the possible side effects. Have you found that this drug works for you? Any advice to offer? Any experiences with clutziness, forgetfulness, forgetting words in mid sentence, unable to focus, etc? For those with seizures like mine, has the drug been effective?
I have asked my Dr., but they tend to see things through drug-colored glasses. Thing is - I could live fine with the absence seizures - if that's all I had, I'd have just lived with it and not started the drugs. But the nocturnal seizure has me concerned. I've NEVER had a petit mal or grand mal seizure when awake.

By lmsylvan at Sun, 05/31/2009 - 6:59pm | 159 views | 21 comments

Recent Comments on this Discussion

I was on Lamictal from '98 to 2 weeks ago.  The one nice (for me) side-effect was weight loss.  I lost 65 lbs in a year.  It never controlled my szs (no med did) so I had surgery.  No seizures since surgery.  Since coming off the lamictal, which started in '07, I've put back on 20 lbs.   Also, my "dyslexia" disappeared as I came off Lamictal.  If you're rarely having szs, so you really want to go back on meds?

bella0809

Kiss your hair goodbye! It seems to me like Dr's throw meds at Epilepsy patients until they find one that works. The last time I wound up in a hospital after a seizure, the ER Dr switched me to Lamictal and I've still been having seizures on an almost regular basis. Now that I'm looking into Temporal Lobe surgery, my Dr won't let me switch meds to anything until we find out if I'm a candidate for surgery. If I'm not, I'm going to insist on trying Dilantin again because obviously, Lamictal and the recently added on top Keppra isn't helping me any and the combined side effects of taking both are horrible. I like Dilantin and for whatever reason, that seems to be the last med my dr wants to let me try again.

Seruzies

I had the surgery 4 years ago.  No meds, including Lamictal, ever worked.  While on meds I had about 50 a year.  Since surgery (with Dr. Doyle at NYU), I've had none and I am now med-free.  Don't rush to drugs. 

bella0809

My husbands seizures are getting worse, I have heard about a surgery but know nothing about it, can you give me information about this or email me some web sites to look into? My email is judy.holder@yahoo.com

 I am at a loss, I am not sure what is bringing this on.  The first 5 years we were together he never had a seizure, as of today we are on our third round of seizures in the last year.

Another thing I want to ask, my husband enjoys a beer or two in the evening, well he works on the road and over the last year I have noticed that he does drink alot more beer than he use too.  The other side of that is this.  Yesterday when he had his first grand mal since Nov., he had not drank a beer all day.  Could cessation be the culprit here, I seen on tv when Mindy McCready had her first seizure ever when she was in treatment for alcohol abuse.  She drank hard liquor, my husband just drinks beer. 

Any advice would be deeply appreciated.

Judy Holder

judyhooey

I have been on Lamictal going on 2 years now. So far it has been doing very well for me. It has actually stopped my grand malswhere I would go into extremely violent convulsions and will not wake up for a few hours. My last one was in November 2007. I am 27 and started having seizures right after I turned 24. This happened August 2005 right after my birthday. I have been having the same type of seizures you have had the same seizures you have for the first part of 2008 about every other month before my periods So I was put on Keppra and so far it has worked great. My last seizure was in September. It took a while for my docs. to find where my seizures where comeing from and then I was able to have surgery doen to my Left temporal Lobe this past November. My MRI's have been great but I did have a psychological evaluation where they checked my short term memory tosee if there is any changes. I have noticed for the past several months that I have been having trouble speaking and forgetting words and numbers just like you, but no seizures. I ope things get better for you and you are able to handle the Lamictal as well as I have. You take care.

ahardway

I had surgery of the Left temporal lobe in December '05.  Recovery has never stopped.  I think they estimate that you can get better for a year, but I started reducing meds at that time and am med free now (4 years later).  I don't know if I would have continued to "get better" for this long if I wasn't reducing meds. 

bella0809

I've been on Lamictal for about 5/6 years.  I am 30 years old and I think I've had seizures since I was a child but I was diagnosed when I was 19.  I suffer from complex/partial seizures that I have never had complete control over.  As compared to other meds, the side effects of this drug are what I would consider somewhat minor, except for the acne.  I began taking Lamictal while on birth control.  Last year I went off my birth control to try to get pregnant and I couldn't figure out why in the world I was experiencing sever acne when I have always had pretty nice skin.  I never knew this was a side effect until the hormones from the birth control were taken away if you will.  As far as the side effects you've mentioned above, I'd say forgetfulness is a definite, my long term memory is fine but my short term is ridiculously bad.  I have trouble thinking of words sometimes, which I'm sure could make me come across ditzy.  I've also noticed that it speeds up my metabolism.  I gained 40 lbs. years ago when I was on Depakote and once I went off of it and started Lamictal, I lost it all in about 2 months if that.

 I wish you the best of luck...

 

 

leighb...

 hi i had my first seizures in november 2005 i had grand mal seizures my nerologist put me on 200 mg of lamictal a day it controled my seizures completely i was on lamictal almost 3 years with out having an episode my nerologist decided to wein me off of it.. i went in for an EEG and MRI which came out normal i went of lamictal for about a month i had 2 semi partial seizures while driving then and 2 grand mal seizures with in 5 hours of eachother. my doc put me back on the lamictal i didnt have seizures i had another EEG it showed the lamictal was working i never had any side effects except sleepiness which went away with time. in september 2008 my insurance switched me to the generic lamotringe i was fine for 9 months then they switched the parmasutical company wich made a cheap product it was still lamotringe after about a month on it i started having bad side effects like:dizziness,insomnia,weight gain,blurred vision,trouble concentrating,then just about a week ago i broke out in hives/rash my regular doc put me back on the name brand lamictal iv been back on that a week the rash went away but now im experiencing dejavu and sariel feelings im calling my nerologist on monday. but i highly suggest do not go on the generic brand lamotringe made by terrance pharmasuticals any ways i have had good success with lamictal im only having issues do to the switch from generic to name brand good luck

 

lindsay

lizdak21

Hi Lindsay,

I had my first seizure ever, a grand mal seizure, about 2 months ago in November. Just a few days ago, i had a second seizure. My neurologist decided to put me on Lamictal. She's starting me off at 25 mg a day and eventually in about a month I will be at 200 mg a day like you.

How long did it take for the sleepiness side effect to go away. cuz with just a few days of taking lamictal, Im starting to feel sleepy a lot more than usual. Also, have you been able to consume alcohol while taking lamictal? and if so, is it true that the effects of alcohol are intensified?

Thanks so much for posting..

-Devin

devink77

While I am aware of the problems associated with generics, Lamictal in particular, have you noted any connection between dehydration and the onset of seizures?  I did, nearly ten years ago: the former seems to be a pre-condition for the latter.  Though I cannot pretend to understand why, keeping oneself 'topped up' has made a huge difference, during long-haul flights for instance.

Chris

scorpio

I am on 700 mg of Lamictal.  Well above the target dose of 400 mg a day for Epilepsy.  If you look at the Package Insert cognitive issues do not show up as a side effect.  I even talked to a pharmacist, my doc (an epileptologist) and the medical information department of the manufacturer.  I have found that my issues with word finding and misplacing things, etc. are due to the partial seizures I have.  I did have problems with insomnia as well.  I take the bigger dose in the morning and a smaller dose at night.  That has helped enormously and the insomnia is mostly resolved.

I have been on more than 6 different combos of drugs to control my Comlex/Partial seizures and have found that most have caused tolerability issues.  That being said, after much research, lamictal does not have some of the more severe baggage that other agents do.  I gained weight on lyrica and became absolutely unreasonable and irritable.  Topamax made me stupid.  Zonegran made me feel sick.  Acetazolamid messed with my kidneys. I am on both Keppra and Lamictal now and see some irritability with the addition of Keppra.  As long as my family is not noticing the difference in mood then I will perservere and hope it does not reach Lyrica proportions.  It does exhaust me and I am sleeping during the day and have less energy.  That is still better than a seizure and a trip to the ER. 

The long and short of it is........side effects will be an issue with any drug taken for any reason.  You just have to decide if they are worth the risk.  Some of the drugs do have a once a day and data does suggest that the slower release might minimize side effects.  I am switching to the once a day Lamictal as soon as it is at the pharmacy.  I will take it in the morning to hopefully improve my sleep even more.

katwom...

As for the switching period, I can't say. I was switching from carbatrol to keppra, which didn't work, so I was put on lorazepam while I moved from keppra to lamictal. I was on lorazepam daily for a solid month and a half (yeah, try that for a fun experience) and once the lamictal was up I stopped the lorazepam, so I was pretty doped up for several months. On the lamictal:

1. I have more energy. Or at least I feel like I do. And I've been able to generally think clearer than on the carbatrol or keppra or dilantin.

2. I have a harder time sleeping. I never had trouble with this until I switched, now I find that earplugs and an eye mask are a necessity. My heart feels like it's racing sometimes as I fall asleep. It's also become more difficult to stay asleep. I take melatonin as a supplement most nights and have had to use both OTC and Rx sleep aids at times.

3. I get more migraines. Before they were few and far between, in the three years since the switch they've come more steadily, to the point where I'm on a low dose of amitryptiline to hopefully help prevent it. There are other abortive medicines available, if you're not having headaches as often.

Overall I have no problem with changing to the lamictal. In general, I've felt better.

jcroper

Hi,

My doctor had me switch from Keppra to Lamictal because Keppra was making me anxious. So, I started taking Lamictal and became extremely emotional, like cried on the phone discussing my dental insurance, very irratible, annoyed very easily, anxious as well and I do forget recent and past experiences.  However, I do thing the forgetfulness is from seizures, not the drug.

I must say that once you are a few weeks into taking Lamictal, you get used to it and all those side effects go away.  I hope you are not the 1 of 2,000 that get a really bad rash on your face which is one of the possible side effects of it. I thought that was pretty weird, but I didn't get one.

I hope that helped.

Kim

kimtwin82

I note that you sometimes have your mini seizures after excercising.  Relevant or not, I only start having signs of approaching seizures - and, ultimately, seizures - if I allow my body to lose too much water (due to hot weather, exertion etc).  If I did not take the 200mg/d Lamictal I would certainly have seizures but lack of water seems to reduce the 'threshold' for them for reasons I do not understand.  It took me 50 years to discover that.

Keep yourself topped up, so to speak, and see if it makes any difference.  I would be interested to know.

Chris

scorpio

The reason why your hydration does effect your medication levels is because when you are dehydrated your blood vessels get smaller. Before you have any bloodwork that day you would want to drink water so the vessel will be easier to find than if you drank sodas that day. When your vains get smaller it takes longer for the blood to travel through out your system. With Lamictal it takes 4 hrs before it is at plasma peak level it's not because your body had to work so hard and by that time it starts to be excreated out of your body the way it was processed (through the kidneys or liver).

tlbpea...

Hey Chris,

I totally have the same experiences as you in regards to excersing and maybe pushing myself too hard. I agree that we must stay hydrated as well. Another thing I've been told to eat alot of protein and make sure you have enough electrolites in your body because they have a direct effect on your neuro-system.

 take care

kimtwin82

I've only had 2 seizures in my life, simple partials.  My doctor put me on Lamictal after the second, May 2009.  I'm still not on my full dosage of 100mg 2x day.  Going through the first week or so, I felt a little detached sometimes, would have some of the symptoms you described, loss of words, unable to focus, etc., but they have gradually either gotten less frequent or disappeared all together.  Just be patient and journal how you feel everyday and see if the side effects lessen with time.  If not, or they get worse and you can't live with them, talk to your doc and try something else. 

Also, take the advice rikk gave, it all adds up to a healthier lifestyle and that can only help with our sz.

Be well ~ 

bcrgrrl

thanks. i've had partial absence for 2 years now and never was worried. really don't care about them, but my neurologist tells me that they can do long term damage. so, i guess it's good to be on the meds. doc tells me that i'm stubborn.

lmsylvan

hi,

i will except that you have read the negatives.   so to the other information.  it will take about 4-6 weeks to get to a full dose.  that is the normal.  the twice a day dose is usually 200-250mg twice a day.  every medication has side effects.  in reality most things we take into ourselfs has side effects.  some of the side effects you will get over, others you will learn to tolerate.  The end of the medication thing is that if it is not tolerable you and the doc can always try something else.  It is just a trial and error.  The inital side effects.  They will more tolerable if you practice a healthy life style.  rest, sleep, diet, exercise, and time just to have fun.

It will allow you to be at the best you can be, while you are in the process of getting use to the medication.  You need to educate yourself on what to do and not where lamictal.  there are some diet concerns, but that is something that you need to investigate.  if you smoke, quit, but do it gradually.  To cold turkey any addictive substance, can induce seizures.  not smoking is better for you.  simple more oxygen to the brain less chance of seizure because of irratation.  no nicotine less irratation.  drinking.  unless you are addicted to it.  stop.  none a day is the right amount.  it is not only a depressant, it lowers the level at which a seizure can occur.  The public speaking and computers, is a individual issue.  the rest and things should help but there is nothing that is certain.  hope it helps.  rikk

rikk

I have been on Lamictal since May 24, 2008 which is the day after I experienced my first tonic/clonic (grand mal) seizure ever at age 30.  For me, it was the best option because I am hoping to start a family soon.  When beginning the medication, I initially lost about 9lbs because it effected my stomach.  Also, I had difficulty sleeping (I always had, it was just elevated even more).  Other than that, I felt great on it.  These side effects went away within a few weeks, and I now take Melatonin at night which works wonders. 

I couldn't be happier with Lamictal...and I feel great.  I haven't had another seizure since my initial one which, to me, is the most important thing.  I wish you luck!

allied...

I have been taking Lamictal for a few months (my doctor added it to the Keppra I've been taking for almost a year.)  I have complex partial seizures which were not being controlled on the Keppra alone.)    Since adding the Lamictal the side effect that is most troublesome for me is insomnia.  I've had sleep problems for awhile but this has definitely increased the problem.  I have not had a decent night's sleep since starting the Lamictal.

I just saw my doctor yesterday and he has switched me to the extended release capsules and thinks that will help with the insomnia.  I certainly hope so.  The strange thing is that although I'm not sleeping at all well, I'm not particularly tired during the day.  I've been on many different seizure meds (Dilantin, Neurontin, Zarontin, Diamox, Depakote and Felbatol) all of which made me very sleepy during the day. 

I guess if the combination of Lamictal and Keppra work for me I can tolerate the insomnia.  I'm more concerned about the people who have been reporting weight gain from the Lamictal.  That I will not be able to tolerate.  I had a horrible experience with weight gain when I was on Depakote and don't want to go through that again.

 

adelle

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