anyone taking "lamotrigine" aka lamictal?

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Hi Maryltyme,
Have been on lamotrigine for a year, have had a few t/c's and it doesn't even touch my partials. I want off it but they don't want to switch meds as I'm going into the investigation unit next month and should see what the outcome of that is before making any other changes. As for side effects, it gave me the rash the first day I took it, swollen puffy eyes and lips, was taken off it until the rash disappeared and then started again at a half dose - took a long time to get to the prescribed dose but the rash didn't come back.
The only other side effect that started not long after and is still with me today is my hair. Tangled and knotted and matted every day. It breaks really badly and takes so much brushing to get the knots out every day that I pull out handfuls. I can only get away with it b/c I have long hair, if it was shorter or thinner it would likely be noticeable that something was wrong.
 
It Doesn't help you at all?

Hi Maryltyme,
Have been on lamotrigine for a year, have had a few t/c's and it doesn't even touch my partials. I want off it but they don't want to switch meds as I'm going into the investigation unit next month and should see what the outcome of that is before making any other changes. As for side effects, it gave me the rash the first day I took it, swollen puffy eyes and lips, was taken off it until the rash disappeared and then started again at a half dose - took a long time to get to the prescribed dose but the rash didn't come back.
The only other side effect that started not long after and is still with me today is my hair. Tangled and knotted and matted every day. It breaks really badly and takes so much brushing to get the knots out every day that I pull out handfuls. I can only get away with it b/c I have long hair, if it was shorter or thinner it would likely be noticeable that something was wrong.


First of all, my prayers are with you. I hope you get well and not experience another seizure or that your meds start working or dr's find a med that will work for you!

May I ask why continue to take it if it doesnt help with any of your seizures? You're still having partial's? I read in the user guide that this medicine could cause hair loss. Someone one else posted to me that it made their hair oily. Geesh.....I'm going to speak to dr about my lyrica too. I use to take it, it took about 2 weeks, but I was highly functional and productive in the mornings and afternoon when taking it. However, it took me out in the evenings. My husband says I acted like a zombie or puppet when I was taking the lyrica.

I was hoping to continue the Keppra at a lower dose. I took only (1) 500mg tablet and "kABOOM!" it was like I was in a rocket headed to only God knows where? I think my apprehension is:
1. I have no gallbladder so digestion may interfere with this med. I already have glaucoma, I'm allergic to direct sunlight (I blister) depending on the strength of sunlight Im standing in (if that makes since?).
2. I am 48 yrs old and already have acne.
3. I don't need any new medical conditions (least not until I've been diagnosed).
4. The odds always seem to be in my favor, unless I'm glambing, then the odds are against me.
5. What if I end up with the worse of the side-effects. I'm already having a difficult time explaining what I am experiencing now, if I end-up with something else, they're gonna just think I'm crazy...crazyier!
 
Thank you. Must say tho that the chance of me not having another seizure does not exist. My E is refractory and they're sure I have MTS (Mesial Temporal Sclerosis), so just adding or changing meds is not the answer at this time (which is why I'm still on it - they don't want to change anything med-wise as I am going into the unit next month, they want to look at surgery for removing the sclerosis). I'm terrified.
I was able to talk them into going off Topamax awhile back however, and made it clear I was going back down to my original lamotrigine dosage (it was doubled in March), and my specialist was very good with allowing it as truly, only we know ourselves best.
Tho it is true the lamot. is not stopping partials, and I have had three t/c's in three months, it is also true that I could have had MORE if I wasn't on the lamotrigine. That's the fun of E, no one will ever know the actual answer. Would I have more? Less? Is is just the stress? Am I over-medicated? Are the meds interfering? ??????????????
Simply trial and error, that's all you can do, and right now the trial is the upcoming investigation unit to see if they can operate. Sometime in November I'll know if the answer is yes or no, and if it's no, then yes I'm off this bloody lamotrigine and also want to go down on the carbamazepine and another drug will be tried. Good times.

Oh yes and as far as the worst of the side effects - it is the rash as it can be fatal - so watch out most for that. Like I said I developed it instantly - but got off it in time to not experience anything lasting. Best of luck to you in all that you're going through :)
 
Im Praying 4 You!

I hope you get what you need. I hope you have the surgery and that it be successful and you never need take another AED again!
Thank you for sharing with me from the bottom of my heart. Your information was very helpful to me. I'm going to sleep on it for a few days, before I make my final decision about lamotrigine. Yes, Im scared as HELL!!!
But, I can also sense that things are changing with me. Im experiencing new symptoms ie nausea, continual stretching, yawning for hours, muscle contration, and a few more. I don't know if I am at the lower end of the spectrum for having a grandmal or higher end of it. But, I don't ever want to have one. My fear is causing me more anxiety and I just feel like hands are tied behind my back you know?
Again, thank you
My prayers are with you!!!!
 
I have been on Lamictal for almost 3 years now. I have had to take a high dose to control my seizures. 350mg. I have reduced it to 300mg as a trial. It isn't going as well as I'd hoped. Oddly enough I haven't told my doctors because I want off this stuff, slowly, slowly, slowly.

I have had some side effects. Anxiety, extreme sleeplessness. I can't tell though whether it's the lamictal, migraines, seizures, or another neurological disease that I have causing those particular problems. Those two things showed up when I started taking lamictal so I suspect the lamictal. I also have very fuzzy thinking and memory issues but I had those before lamictal.

It's crazy. Some of us are on so many drugs and have so many health issues it's hard to identify what side effects are caused by what.

My advice to you is to is no matter what you decide - make sure you are changing only one drug at a time. Adding, subtracting, or changing dosage - one at a time. Then you have a better chance of knowing what's causing what.
 
It is something that either works or does not work for you. Worrying about the next seizure can actually aggravate epilepsy. Can you try some stress management indoors or at night time outside? I personally find a good long walk to be a great stress reliever.
Lamictal took about 6 months to work with logging any factors like an illness, weather, stress, menstrual time of the month, diet and any other potential issues related to a seizure. I've noticed I'm more alert on this drug than other meds in the past. And I've noticed it also keeps me calm overall. I'm not sure if the calming effect alone prevents seizures. However, for me, it has worked for well over 10 years.
 
Shannon have you told your dr's that it's not working for you? And are you saying that it has increased or decreased you levels of anxiety? Im already anxious if anyone cant already tell it.

Yes, I told the neuro and he increased my mg that is when I noticed the anxiety go right through the roof. I told him that too but he told me to take it earlier in the day.... it still gave me horrible anxiety and I still couldn't sleep... so... I personally stopped the increased mg since I dont need to be tortured and I will talk to my neuro on my appt this month.
 
Yes, I told the neuro and he increased my mg that is when I noticed the anxiety go right through the roof. I told him that too but he told me to take it earlier in the day.... it still gave me horrible anxiety and I still couldn't sleep... so... I personally stopped the increased mg since I dont need to be tortured and I will talk to my neuro on my appt this month.

I certainly hope they fix your dosage or perhaps prescribe someting helpful. I know the brain is a puzzle and I know they're doing all they can, but it seems to me that they're just not listening sometimes.
 
Your Feedback Means So Much : )

My neuro dr knows I am absolutely horrified of meds and that I thoroughly look into them before I take them. So I was thinking; Why? Why would you prescribe something for me to take knowing that I will freak out about the side effects. Why did you not re-precribe the lyrica, keppra at a lower dosage? Great, now the paranoid (spelling) side of me is surfacing. (We all know that paranoid and anxious do not go well together). But, folks, I refuse, I simply refuse to just settle, to not look further into this. I don't know if this is the right med for me or not. My mood/personality can use some mending as well I guess. So perhaps, just perhaps I will try it. I wont do it during the week, I will wait until the weekend, we I don't have to do anything or go anywhere.

Because of all your responses and your help, I am able to approach this in a rational and educated way. If I was to tally your replys, the "I's" would have it. Best of all, I'm not alone.

God Help us all!!!
Thank you for your feedback
 
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I don't know if this is the right med for me or not. My mood/personality can use some mending as well I guess. So perhaps, just perhaps I will try it. I wont do it during the week, I will wait until the weekend, we I don't have to do anything or go anywhere.

Because of all your responses and your help, I am able to approach this in a rational and educated way. If I was to tally your replys, the "I's" would have it. Best of all, I'm not alone.

Hi Maryl,
In all reality it's almost impossible to know if a med is 'right' for you or not unless you try it. We are all in this for seizure control, so one has to take it to find out if it works for theirs. Like I said, the fun of E. You'll see guinea pigs is a common phrase on here.
It is also a drug for mood stabilizing and lowering anxiety, and even that works for some and not others. It definately helped stabilize my mood, but as Shannon said, made hers worse.
It's so smart that you're doing all the research you can. I did the same thing when it was time to change and was only adamantly against keppra (anger, irritability, rage being such common side effects - wanted to leave it as a last resort if I had to), and a couple others that were notorious for extreme weight gain. Again, not happening.
Can I ask what you mean by the "I's" ??
 
Hi Maryltyme,

I was on it for a year, didn't seem to help my seizures at first, 1/month. I didn't seem to have any adverse reaction to the med. But it would push my seizures to 1 every other month. Only thing is that the seizures where bigger. Last October i had a bad seizure that beat me up, tied me up like a pretzel. Then in Dec, i had one that not only tied me up like a pretzel, but almost choked me while doing it, it lasted for more then 4 min. I was breathing very heavily afterwards and couldn't straighten out my neck for like 5 min. I told this to my doc, he did nothing. So i then told him that i wanted off this drug. Now i'm on Gabapentin and when my aura comes around before a seizure i take Ativan to control the seizure. So far Ativan has stopped my seizures from going past my arm. Good luck to you!!

Cheers,
Len
 
Did I answer this? I can't remember! Anyway I started on it a little over a month ago. So far my side effects aren't terrible. Better than when I started on Keppra. I did notice an increase in anxiety but... some other factors seemed to play into that as well. My memory seems a bit fuzzy and I was having some crazy dreams but they have improved. As far as seizure control, it seems to be helping. I mostly have simple partial and the frequency has gone way down since starting. I also read into everything, and compared to some of the other drugs out there I'm glad this is the one my neuro wanted to add (also on Keppra XR 2250 mg).

Sent from my Vortex using Tapatalk 2
 
Momof3boys, I replied to your post. I was asking you if they'd given you treatment for the irritation. I also wanted to ask if they thought it was SJS or one of the other 2 skin irritations? thanks for your response.

Sorry about not replying sooner!

No, they just took me off the Lamictal, and told me to wash my face morning and night, like Ive been doing for years, and to go a few days without make up. Within a matter of 24 hours just not taking the lamictal, I could tell a big difference. It took a good couple of weeks for the sores/acne to clear up. But after I saw the improvement within days of being off, I knew for sure that it was the Lamictal causing it, and no a hormone problem!
 
I certainly hope they fix your dosage or perhaps prescribe someting helpful. I know the brain is a puzzle and I know they're doing all they can, but it seems to me that they're just not listening sometimes.

I agree! Oh yes... they sure have had some issues fixing me... I have went through.... TONS of uuummm shall I say uuuummmm clueless **putting it nicely** neuro's .... they had no clue what to do.... pills pills pills pills and no mri's ... no eeg's.... no blood work !!! Omg insane! FINALLY I am back with my favorite neuro! He left his clinic to work in a surgical office.. so I lost him... and now he has made room for both private and surgical AND I HAVE HIM BACK yayyyyyy maybe we can get some work done .... after many years of having garbage neurologists I have my wonderful one back. I hope he stays this time lol
 
Hi Maryl,
In all reality it's almost impossible to know if a med is 'right' for you or not unless you try it. We are all in this for seizure control, so one has to take it to find out if it works for theirs. Like I said, the fun of E. You'll see guinea pigs is a common phrase on here.
It is also a drug for mood stabilizing and lowering anxiety, and even that works for some and not others. It definately helped stabilize my mood, but as Shannon said, made hers worse.
It's so smart that you're doing all the research you can. I did the same thing when it was time to change and was only adamantly against keppra (anger, irritability, rage being such common side effects - wanted to leave it as a last resort if I had to), and a couple others that were notorious for extreme weight gain. Again, not happening.
Can I ask what you mean by the "I's" ??

That is very true! What may work for one may not for another... same as the effects. It is definitely worth the research! I know I research.. like I know if I am put on something "anti depressant" wise.... I WILL HAVE SEIZURES.. so I do not take them... I wonder though if I would do the same with an anti anxiety med?
 
My daughter is taking 250mg of Lamictal XR. She started last February at 25 mg and recently went from 200 to 250 about 2 weeks ago.

She seemed to be a bit foggy in the VERY beginning - basically she was not as quick with answers as she used to be. That went away after a few weeks. She is back to herself now. She also has some minor chin acne - but I am not sure that is Lamictal or teen-year issues. Each time we up her dose, she seems to get a bit giddy. She hiccups alot (anyone else have this)?

She does need to take the med on a full tummy of she gets a belly ache. She sleeps really well. She does have some weird dreams, but nothing that is too weird for her :)

Paige also takes a multi-vitamin and prescription strength folic acid. She goes next week for blood work to be sure her levels are ok. HTH.
 
Hi Maryl,
In all reality it's almost impossible to know if a med is 'right' for you or not unless you try it. We are all in this for seizure control, so one has to take it to find out if it works for theirs. Like I said, the fun of E. You'll see guinea pigs is a common phrase on here.
It is also a drug for mood stabilizing and lowering anxiety, and even that works for some and not others. It definately helped stabilize my mood, but as Shannon said, made hers worse.
It's so smart that you're doing all the research you can. I did the same thing when it was time to change and was only adamantly against keppra (anger, irritability, rage being such common side effects - wanted to leave it as a last resort if I had to), and a couple others that were notorious for extreme weight gain. Again, not happening.
Can I ask what you mean by the "I's" ??

I have a lot of brain-poops, you're right, it would have made more sense to say that a great deal of the replys had no problems with this med. ie,,, the I's have it, not so much as all those in favor of, but those who had taken it with no serious ill effect and to include those that found it helpful.
 
I agree! Oh yes... they sure have had some issues fixing me... I have went through.... TONS of uuummm shall I say uuuummmm clueless **putting it nicely** neuro's .... they had no clue what to do.... pills pills pills pills and no mri's ... no eeg's.... no blood work !!! Omg insane! FINALLY I am back with my favorite neuro! He left his clinic to work in a surgical office.. so I lost him... and now he has made room for both private and surgical AND I HAVE HIM BACK yayyyyyy maybe we can get some work done .... after many years of having garbage neurologists I have my wonderful one back. I hope he stays this time lol

Yippppeee!!! Im happy for you. The fact that you have a dr you trust and can depend on says it all. You're on your way to helpful treatment. Congrats! and hug : )
I know it will take time. I've had 2 EEG's in one year. I dont blame the neuro dr anymore. I think he doesnt understand me (when I describe whats going on) and perhaps , maybe, I hope, he just wanna be right. I still wanna "Go off on him" sometimes, and putting me on this med knowing my phobia and fears would be a good reason to do so.

Wishing you nothing but the best!!!!
 
My daughter is taking 250mg of Lamictal XR. She started last February at 25 mg and recently went from 200 to 250 about 2 weeks ago.

She seemed to be a bit foggy in the VERY beginning - basically she was not as quick with answers as she used to be. That went away after a few weeks. She is back to herself now. She also has some minor chin acne - but I am not sure that is Lamictal or teen-year issues. Each time we up her dose, she seems to get a bit giddy. She hiccups alot (anyone else have this)?

She does need to take the med on a full tummy of she gets a belly ache. She sleeps really well. She does have some weird dreams, but nothing that is too weird for her :)

Paige also takes a multi-vitamin and prescription strength folic acid. She goes next week for blood work to be sure her levels are ok. HTH.

Im so glad to hear that the meds is working for your daughter. You sharing that has put a smile on my face, : ) knowing that she is doing well and getting on with her life (thank you for that). I hope and pray that her meds continue to work for her and that her life continues to be not just normal but better that she could have even imagined. In an earlier response to this thread someone one else mentioned that they too take this med with food. I am at ease now, and will give this a try. I was waiting on a response from my neice (who's away at school) as well. She takes a med for bipolar and I wanted to know if this was the med. My thinking was : if she didnt have a problem then I shouldn't (genetics you know). You also mentioned that she sleeps very well.....God knows I could use some sleep. It's 1am and I should have been in bed hours ago.

thank you again for sharing and God bless you!
 
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