switching to Lamotrigine

[greywolf]

Hi everyone, I got a call I've been dreading today from my neurologist. The last conversation we had last week was cut short, so I finished telling him about some side effects I was having in an email. That got his attention, and he booked a call for today! I guess one of my side effects is quite dangerous, so he said we need to switch to a new drug.

Currently I'm taking 1000mg Levetiracetam (aka: Keppra) twice per day. He wants to switch me over to Lamotrigine, slowly of course, and then eventually stop the Levetiracetam all together, assuming everything goes according to plan. Naturally, this means I'll lose my license again, and with that I'll lose my job. I don't know how that's going to work, but that's a whole other conversation.

Have any of you been on these two drugs at the same time? Any thoughts in general about Lamotrigine? I'm kind of worried about taking so many drugs all at once. I also take a small dose of a blood pressure drug, so I'll be taking three things at once. I'm a bit scared to be honest, but I guess it needs to be done...

 

[notime]

I started taking keppra as my first drug, and seizures didn't stop. My neurologist then put me on lamictal now I'm at 600mg, it does work, but when I miss medicine and I forget it more than I would like to say. Even when it is directly in front of me all day.

The worst side effect I hear is the deadly rash. I got no rash. It should be fine, but I'll be honest when I got off of keppra, 500mg when I got off on the final dose it triggered a seizure. Not to scare you, it was me. I was surprised it was even working then.

Combination drugs are common. I'm on lamictal and topamax 50mg right now.

 

[stuartbungle]

only very small percentage of people get the rash but everyone's scared of that side effect, I've taken lamotrigine, second med, worked great but had to stop because of the risk taking behavour went a bit too far (not mentioned on the insert leaflet) that was number of years ago, now on xcopri briavict and clozabam

 

[MaryK]

I am glad your doctor came through for you.

Maryk

 

[greywolf]

Thank you for the input! I'm so grateful for this site, I don't know who else I could talk to about this kind of stuff.

MaryK, after I sent my neuro an email explaining the things I couldn't over the phone, he did make an appointment with me for another phone call only a few days later. The fact is I have been experiencing some hallucinations, although quite rare, while on the higher dose of Levetiracetam. I guess that I'm one of those rare ones (they say only 1% of people experience it). I almost didn't really think it was the medication, but as he pointed out to me, these only started since taking Levetiracetam, and more specifically since the latest increased dosage. It's good that I mentioned it apparently, because if left ignored, it could have gotten worse or even become permanent. Hopefully no damage is done at this point! I felt so weird telling him about it, like "trust me I'm not crazy, but I've been seeing wierd things.."

Anyway, I'll be starting the lamotrigine tonight. It's reassuring to hear how many of you are on combinations of things and seem to do alright. Or in some cases, it's the combination that works best for you! That rash thing does sound pretty scary, but I think that is even a possibility with Levetiracetam as well, although maybe less chance of it happening. I'll be on the lookout for anything unusual at all. Honestly, I'll be interested to see what changes with this new drug. Maybe things will be better for me in the end. I've been putting up with quite a bit of the more mild side effects since I started Levetiracetam, and they've only gotten more intense every time the dosage was increased.

 

[Sabbo]

Hi. Lamotrigine is the generic version/name for Lamictil, & I know it's an AED I can't use. My neurologist had attempted to switch me to Lamictil back in 2017, but due to my SEVERE allergy to Tegretol, it didn't work out. I felt the SAME type of rash I experienced w/Tegretol starting on my upper back--in less than 3 days--& immediately called my neurologist. That's when I was put on Zonisamide instead. Xcopri was added later, when the number breakthrough complex partials I had increased greatly again.

 

[greywolf]

Thanks Sabbo, I've been worried about the rash myself. So far it's been almost 2 weeks since starting Lamotrigine, so the dose is very low, but no rash. Some of the possible side effects are pretty scary! Hopefully my liver can handle this one. So many unknowns still, but at least it's a slow increase in dosage over the course of weeks, and the Levetiracetam is still doing its job.

 

[cadsgj]

I have been on lamotrigine for a couple years now. They added it for me with carbamazepine (tegretol) and I have had no problems at all with it. I know though we are all different, so my prayers are with you here!

 

[Sabbo]

Tegretol (Carbamazepine) was the FIRST AED I was ever given. That was back in April 1987, after I had 3 or 4 grand mal seizures, & it's allergic reaction STILL affects me. I haven't had any of those seizures since those, but the simple partials I've had since childhood HAVE continued, & in 2000 (I believe) I began having complex partials as well. Those have been very troublesome. I have used EVERY AED out there but get no real relief. While on 1 med, at most, I'd be seizure-free for about 4-5 months before the breakthroughs would restart. My neurologist's addition of Xcopri to the Zonisamide has helped the most. It kept me free of complex partials for 8 months.

 

[Porkette]

I also took lamotrigine/Lamictal and I broke out with a rash within 4 days of starting the drug and it took
about 2 weeks for it to clear up. If you start to see your skin turning red and tiny pimples that's the rash.
Get off the med immediately if this happens. Here's wishing you only the best of luck and May God
Bless You!

Sue

 

[cadsgj]

Tegretol (Carbamazepine) was the FIRST AED I was ever given. That was back in April 1987, after I had 3 or 4 grand mal seizures, & it's allergic reaction STILL affects me. I haven't had any of those seizures since those, but the simple partials I've had since childhood HAVE continued, & in 2000 (I believe) I began having complex partials as well. Those have been very troublesome. I have used EVERY AED out there but get no real relief. While on 1 med, at most, I'd be seizure-free for about 4-5 months before the breakthroughs would restart. My neurologist's addition of Xcopri to the Zonisamide has helped the most. It kept me free of complex partials for 8 months.

Couple months ago they sent me to hospital (too many seizures starting every day). There they thought changing my carbamazepine (tegretol) would be a great choice so they did. Oops! Shortly after I had three gran mal seizures in two days. Quickly they put me back back to the carbamazepine drug. I asked why it happened since they were starting the new drug... they told me that because I have been on it for 25+ years the body just needed it to keep me away from gran mal. Now I'm back to my norm seizures which basically seem similar to yours... sometimes simple partial but usually complex partials.

 

[Sabbo]

I've had the simple partials since I was 5, as I'm aware of things during those. The grand mal seizures never occurred after 1987. The complex partials suddenly started in 2000 or 2001 & have NO aura. The FIRST one (that I recall) was one morning, while my husband was asleep down the hall! I had boiled eggs for breakfast, & the next thing I knew, I was sitting in the same place, w/an empty plate in my lap, AND MY HAND/ARM WERE COVERED IN BLISTERS!

 

[suebear]

It is quite common to find a mixture of medication that will work for the type of seizures a patient is having. At this time I am taking Topomax brand twice a day, Aptiom brand twice a day, Vimpat generic twice a day, and X-copri once in the evening.