New Member - Lamictal Problems

[gilly1970]

I started having grand mal nocturnal seizures when I was 10 yrs old. I was put on Dilantin. During my teens I was told my epilepsy may have been a stage of puberty and at 18 I went off Dilantin completely. A few months later I had a seizure. I would only have a seizure a few times a year. Always nocturnal. In my 20's I started having petit mal seizures during the day. They would always start with losing my peripheral vision in my right eye. The second stage would make my peripheral vision look like a kaleidoscope in my right eye. The third stage would be I could hear you and somewhat understand what you were saying but I could not respond. I would have these spells various times a day and would have progress through the stages randomly different at times. The worst part was that if I went to a stage 3, when I came out of it my memory of the past few hours would be completely blank. In my mid 20's I went on Lamictal. The Lamictal completely fixed all my types of Epilepsy. They originally started me on 350mg. The only side affect I had was that I felt exhausted all the time. I weened myself to 200mg which I have taken each day since 1997. For many years I had no side affects and considered Lamictal a miracle drug. In 2006 I noticed(my wife noticed) I was clearing my throat numerous times throughout the day. It progressively got worse to the point where when I begin speaking I have to clear flem out of my throat to begin a conversation. My memory has weekend as well. Upon searching the internet I have learned that many other people are experiencing the same side effects. I am in the process of narrowing down alternative medications to try and switch to. Any advice would be appreciated.

 

[Nakamova]

Hi gilly1970, welcome to CWE!

I've only been on Lamictal for 3 years, so it's interesting (and distressing) to hear about the delayed-onset side effect. Have you talked to your neuro or any other doc about the throat/phlegm problem? Is there a possibility that you could taper down another notch on the Lamictal to see if that would help?

If that's not an option, there are quite a few AEDs out there to consider. The results vary dramatically from person to person in terms of side effects and seizure control so there's no easy way to predict what will work for you. There's some info here: http://www.coping-with-epilepsy.com/forums/f27/aeds-give-you-worst-side-effects-977/ And you can search for posts on a specific med using the "Search" tab in the bar at the top.

You also might want to look into neurofeedback and diet to see if they can play a role in your treatment. More info here:
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments
http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova

 

[Endless]

I've only been on Lamictal about 6 months. I have tons of junk in my throat but I sure didn't connect it with Lamictal. I chocked it up to allergies. When I think about the timing of when it came on, it might be the drug. I'd hate giving it up because on the others I've tried so far my mind was like a marshmallow.

I've had eye problems, too, but I had those long before the lamictal. I have memory blanks from my seizures, too, but my epi doesn't seem to be listening to me about that.

Yes, there are lots of drug choices. Here's a relatively complete list:
http://www.epilepsy.com/EPILEPSY/SEIZURE_MEDICINES

Here's another that only lists the most commonly used drugs but it also lists the most common side effects:
http://www.webmd.com/epilepsy/medications-treat-seizures

Here's Q&A about seizure meds: http://www.epilepsyfoundation.org/living/wellness/takingcharge/weimeds.cfm

Did someone in here mention www.askapatient.com? It contains medication reviews (including side effects) from real patients. It's not filtered by doctors, the pharmaceuatical companies, or the government.

I hope this all gets straightened out soon for you. I'm so sorry you are going through side effects. They really do stink.

 

[gabbyg2000]

I was on lamictal when I was in 8th grade and it seemed to work for me at the time. I had been on keppra. Keppra made me very moody which i was then put on lamictal. It controlled my seizures but I also complained about the sleepiness that came along with it. I was then switched to topamax but that didn't control my seizures at all. So then the doc put me on depacote. It seemed to work but I gained weight because I always craved food. Now they put me on lamictal to see if the side effects would change. But i experience dizziess blurred vision and it makes me feel like i can't see. I was wondering if you ever experienced these side effects and how you coped with them . I'm on the same dosage as you also.
gabbyg2000 <3

 

[Nakamova]

I've experienced the blurred vision. It comes and goes throughout the day. For the most part I can get by (it doesn't affect my reading vision), but it makes me cranky because I had perfect vision (from laser surgery) before I went on Lamictal.

I have also had the dizziness every now and then. For me it's not like I'm going to lose consciousness and black out, it's more along the lines of "the spins" or like being on shipboard. It can happen if I move my head while scrolling on the computer, so I try and avoid that. Otherwise I've basically gotten used to it.

 

[Eibhlin]

What you said about the phlegm is really interesting. I started taking Lamictal in 2000, and was on 200mg/day until I started reducing 3 yrs ago.

In 2001, I suddenly had the most awful phlegm, to the point where i was choking and blood vessels burst in my neck and around my eyes - it was really awful, and of course the doctors thought it was psychological and that i was just anxious (don't they always say that if they can't find a reason?!).

I gradually realised that it was from soft drinks and any kinds of sweets that were full of artificial ingredients (you know - the nice ones?!). So I avoid those as much as possible - if i forget, I wake choking during the night, so I think before i eat!

I nearly always have some phlegm, but it has reduced considerably since I cut out wheat and dairy.

I never thought to link it with Lamictal, but it makes sense. Do you ever suddenly get breathless for no reason whatsoever?

I replied to you re coffee under 'new-reducing lamictal'.

I really hope your side effects reduce, it all sounds so distressing.

 

[gabbyg2000]

I've experienced the blurred vision. It comes and goes throughout the day. For the most part I can get by (it doesn't affect my reading vision), but it makes me cranky because I had perfect vision (from laser surgery) before I went on Lamictal.

I have also had the dizziness every now and then. For me it's not like I'm going to lose consciousness and black out, it's more along the lines of "the spins" or like being on shipboard. It can happen if I move my head while scrolling on the computer, so I try and avoid that. Otherwise I've basically gotten used to it.

Ive been having those side effects since i switched meds to lamictal but ive only been on it for a week soo hopefully it will not come as often or as you said you get used to it

 

[msuder0583]

Hey gilly. Like you, I also started on Dilantin and when I couldn't maintain the proper level in my bloodstream I too switched to Lamictal and also just like you considered it a "miracle drug". I am younger than you, and it only kept me seizure free by itself for maybe a year or so and I had to keep increasing my doses because my neurologist said I was becoming immune to it. The point is I also noticed the blurry vision and phlegm(spelling?) buildup in my throat. Especially when I ate or drank things with sugar in them. I was constantly spitting. And also like you, I had blurry vision and when I first woke up, I would see tracers if there was a quick transition from dark to light. And now I am on 600 mg of Lamictal, 400 mg of Topamax and 1500 mg of Keppra. However, the Lamictal and Topamax combo worked well for me for a bit. My suggestion to you would be Keppra because Topamax has AWFUL side effects. Anyone who takes it will tell you that. It does keep you skinny though, or if you wanna lose weight, you will. But I still suggest Keppra