The good/bad/UGLY of Lamotrigine

[Blonde Angel]

ATM she is quite bombed out in the mornings and needs to sleep in seems like a chemically induced thing which I am not liking but my daughter does have a big reduction in seizures and it is not as severe like the tonic clonic of past 3 minutes which makes me nervous.... currently on 50mg Lamictal twice daily and Trileptal 300mg morning and 600mg night with Frisium (Clobazam 15mg morning and night). She is also on Melatonin at night. We will be seeing the neurologist next month for review the meds.

 

[Blonde Angel]

I've also taken it for over a decade. I take 200mg twice daily and it's had the least side effects of any drug I've taken.
Occasionally I've had what seemed almost like an aura.

Would you mind describing the aura? as I am trying to understand what my girl may be experiencing/feeling as she is a nonverbal but behaviour is the one cue that lets me know if something is off.... as there does seem times she is really emotional for no apparent reason... and sometimes she may have a seizure later...

 

[Sabbo]

My doctor tried to add Lamictil/Lamotrigene as a third AED, but I can't use it. It is related to Tegretol. Within a few days of starting it, I felt a rash starting across my upper back, just like the one Tegretol started. I stopped it immediately.

 

[Chaya]

Lamotrigene was the first AED i was tried on. It reduced my seizures slightly, but i had insane paranoia while on it. I even knew i was being paranoid but couldn't help myself. At work i was convinced everyone was talking about me and i'd try to "catch them out" by listening at doors and stuff, and that's 100% not like me at all. I think i gave it a good go and was on it for over a year before i said i couldn't cope with it anymore. The paranoia gave me really bad anxiety, leading to depressive thoughts because i was on the verge of destroying relationships with my colleagues, friends and family.

A relative of mine also began having severe bouts of paranoia after taking Lamictal. Due to the relative's age, doctors merely called it dementia. I had no idea that paranoia was a possible side-effect of Lamictal.

 

[Sabbo]

I currently take 400mg/day of both Zonisamide & Topiramate. Zonisamide (the generic version of Zonegran) hasn't given me any strange side effects. My neurologist switched me to it from Vimpat when our insurance company changed. The new company expected me to pay for Vimpat out of pocket--it would have cost $1600/month!

Side effects of Topiramate that I'm experiencing are short term memory problems, "word loss" issues (you know what you want to say but can't), and hair loss.

 

[Janus]

I've been taking lamotrigene for about 10 years. I can't say what may or may not be from the meds. One thing I do know is this Tremor that I have is a side effect from lamotrigene . Said my neurologist. It's bad. I usually can't carry a cup of coffee to another room. On some days can't hold the coffee without spilling, at all. I'm not sure what else is from she or not. I also have a TBI so that's different effects. So I'm not sure about the future, side effects of not, things are ok so far.

 

[ChaChaSlide]

I take 500 mg of Lamictal a long with 400 mg Briviact. Unfortunately The generic, Lamotrogine doesn’t control My seizures. The big bummer is it’s very expensive! I am constantly battling the insurance company. I have been on Lamictal For seven plus years. It does work well, but I have the shakes pretty bad. It can be embarrassing at times. Also, I have Memory And coordination issues a long with brain fog. Sometimes I have a hard time finding the right words.

 

[Army Vet]

I take 500 mg of Lamictal a long with 400 mg Briviact. Unfortunately The generic, Lamotrogine doesn’t control My seizures. The big bummer is it’s very expensive! I am constantly battling the insurance company. I have been on Lamictal For seven plus years. It does work well, but I have the shakes pretty bad. It can be embarrassing at times. Also, I have Memory And coordination issues a long with brain fog. Sometimes I have a hard time finding the right words.

I take 200 mg of Lamotrogine 3 times a day. I started off with Lamictal, but once the VA took over, it's been nothing but Lamotrogine (gotta save that wasted government money on something else that doesn't matter ). When I started having seizures in 2009, I started with Lamictal and my seizures stopped until 2014. Guess what happened. Yep, they came back once I was given Lamotrogine instead. I got out of the army in Oct 2012 so I lost my VA Tricare, which allowed me to choose. Now that I’m only with the VA, it gets to choose. I'm going to bring this up with my doctor today and see what he says. If I had to gamble I'd say that he will give me a crazy look and say it doesn't matter (no difference). He'd have to prescribe just the name brand for me to get it and be approved.

I don't know how it worked better, but the one I take now is a chalk pill. Lamictal had a partial hard cover with the middle partially exposed. It's almost like it allows it to dissolve throughout the day as opposed to it hitting you all at once. Again, I don't know. Kinda like drinking beer versus liquor. Either drink slowly over time and just buzzed or take a couple of shots and be puking drunk within minutes. I just dunno

 

[cadsgj]

Lamotrigine I take but I do not see it as a plus. Doesn’t get rid of seizures nor make them fewer. My neurologist thinks they are good though. He only has me at 300 mg per day and knowing I still have seizures, he doesn’t get me taking higher doses… possibly due to my other drugs. I keep wondering just why my neurologist has be taking this drug… maybe I should just quit taking it

 

[stuartbungle]

It was my second medication -- remember an emotional side effect if I saw something I thought was beautiful either in real life or on TV like a selfless act, some romantic act, I would start crying/eyes watering. Definitely made me more risk taking, got into needle play in a big way. It gave me Cluster headaches in the end, thought it was something else, ended up doing a naughty thing to self, so decided to try again with some other med.

 

[Blonde Angel]

Lamotrigine has been a mood stabilizer for my daughter, it has been a plus atm. However, I have always been vigilant on drug interactions and side effects.

 

[Jasmine]

My daughter was prescribed Keppra (500mgX2 a day) initially for absence seizures since January. She was monitored at EMU and as per her neuro she will not have an grand mal seizure. I hesitated to request low dosage as I'm not an expert in the field. I knew that she is not exposed to much medications throughout her life and with her tiny body, low dosage medications work efficiently. She had bad side effects from Keppra and her neurologist suggested to titrate with Lamotrigine. Week 7 was to be end of Keppra and lamotrigine (100 mg in the morning and 75mg in the evening).

She had a breakthrough Grandmal seizure (I feel this is the medication withdrawal effect) As per my conversation with ER Neurologist, any normal person who has sleep deficiency is prone for a seizure. Also any normal person who takes seizure med and stops it, can have a seizure.

She is taking 100 mg x2 per day and didn't notice any seizures. But neuro wants to increase the dosage and start Keppra back 1000mg /day to help titrate Lamotrigine titration to 300 mg/day . With Lamotrigine she is getting headaches, nausea and sometimes vomiting. I do not want to risk increasing the dosage. any thoughts??

I'm new to this blog. please excuse me if I posted it on the wrong thread. Thanks in advance for your support.

 

[Bernard]

Hi Jasmine, welcome to CWE.

Sometimes when a person starts a new AED, side effects are strong until the body gets used to the medicine and then the side effects diminish. Sometimes, making adjustments in how the medicine is taken (before meals, after meals, with meals; in the morning vs. at night) can also greatly affect the side effects. My wife has also had to adjust her dosage schedule by splitting a daily dose into 3 (taking a partial dose 3x a day instead of all at once).

HTH!

 

[Porkette]

Hi Jasmine,

Welcome to CWE! Just like your daughter I've had absence and complex partial seizures for 52 yrs. and I was on drug after
drug but nothing stopped my seizures. When I was on Keppra that drug gave me a terrible attitude where I was really grumpy
and mean and the drug increased my seizures. I was only on lamotrigine for 4 days and I broke out with a rash.

I'm sure a lot of the seizures are do to the drug withdraw that happened to me a lot. What you can do is tell your
daughters neurologist to do a DNA test on her and by doing that they will be able to find the best seizure med for her
with the least side effects or the test will show if she is drug resistant like me. My Epileptologist told me to start using
the medical marijuana after he found out I was drug resistant and I was amazed how that lowered my seizures.

Your daughter may want to have a sleep study along with a e.e.g. and e.k.g. done this is what my Epileptologist did
with me and found out I was having seizures in my sleep then I was put on vimpat and that stopped those seizures.

Keep your daugther away from starch and carbs you may want to try the ketogenic diet with her and keep track
of her seizures if you aren't already. Write down what time she has a seizure on a calendar and the type of seizure
by doing this her neuro may see a pattern in her seizures.
I wish you and your family only the best and May God Bless You,

Sue

 

[Jasmine]

Hi Jasmine, welcome to CWE.

Sometimes when a person starts a new AED, side effects are strong until the body gets used to the medicine and then the side effects diminish. Sometimes, making adjustments in how the medicine is taken (before meals, after meals, with meals; in the morning vs. at night) can also greatly affect the side effects. My wife has also had to adjust her dosage schedule by splitting a daily dose into 3 (taking a partial dose 3x a day instead of all at once).

HTH!

Thank you very much for the tips Mr. Bernard.

 

[Jasmine]

Hi Jasmine,

Welcome to CWE! Just like your daughter I've had absence and complex partial seizures for 52 yrs. and I was on drug after
drug but nothing stopped my seizures. When I was on Keppra that drug gave me a terrible attitude where I was really grumpy
and mean and the drug increased my seizures. I was only on lamotrigine for 4 days and I broke out with a rash.

I'm sure a lot of the seizures are do to the drug withdraw that happened to me a lot. What you can do is tell your
daughters neurologist to do a DNA test on her and by doing that they will be able to find the best seizure med for her
with the least side effects or the test will show if she is drug resistant like me. My Epileptologist told me to start using
the medical marijuana after he found out I was drug resistant and I was amazed how that lowered my seizures.

Your daughter may want to have a sleep study along with a e.e.g. and e.k.g. done this is what my Epileptologist did
with me and found out I was having seizures in my sleep then I was put on vimpat and that stopped those seizures.

Keep your daugther away from starch and carbs you may want to try the ketogenic diet with her and keep track
of her seizures if you aren't already. Write down what time she has a seizure on a calendar and the type of seizure
by doing this her neuro may see a pattern in her seizures.
I wish you and your family only the best and May God Bless You,

Sue

Hi Porkette,

 

[Jasmine]

Hi Porkette,

Thank you very much for your support and blessings. I like your suggestions about the Carb free Keto diet. I will request her neuro neurologist to do a DNA test on her.
I asked the neuro about the medical marijuana. He said there is no pure form available in US and the percentage of the impurities trigger seizures.

They did a study in the EMU along with a e.e.g. and e.k.g and that's when they said she will not have grandmal seizures. Is sleep study different from the study in EMU?

 

[Bernard]

... Is sleep study different from the study in EMU?

A sleep study involves EEG monitoring overnight (the whole night) to see if there is epileptiform activity happening while the patient is sleeping.

 

[Porkette]

Hi Jasmine,
Often the neurologist will say they don't do a DNA test and that's because they like to push the seizure meds to
make money, if for some reason this should happen just let the neuro. know that you will be letting the medical
conduct board know about it and take my word they will do the test then.

If you want to get family with the ketogenic diet there's a great book out titled "The Epilepsy Diet Treatment" by
Dr. John Freeman from Hopkins University. He explains all about the diet and how it works along with giving a few
recipes in the book. You child will also have to see a Dietician to get started on the diet.

Bernard was correct a EMU is different the a sleep study. I had an e.e.g. and e.k.g. going on but I was on camera
around the clock except when using the restroom and the Dr. was both a neurologist and sleep specialist and she
saw me having seizures in my sleep from the video and they would always happen 1-2 hrs. before I woke up.

Here's wishing you and your family only the best and May God Bless All of You,

Sue

 

[valeriedl]

Nice to meet you Jasmine!

I'd been on Keppra for close to 20 years when I finally couldn't handle the side effects anymore. The main one was 'Keprage' the nickname for Keppra making you angry. Plus there were some other's starting to happen too.

I went off of Keppra and onto another med but that one wasn't working very well. I started taking another med and began having seizures left and right during the transition between the two. We weren't sure if the new med was going to work and I was going to have to go back onto Keppra. Now once the med is in my system and used to it it's cut down the number of seizures I'm having drastically! Having less than when I was on Keppra.