Abnormal EEG - "TLE sharp waves" - Lamictal?

[elizzza811]

Got the news this morning that my 72-hour EEG came back 'abnormal'...sharp waves coming from the temporal lobe.

What can I expect from Lamictal? We're starting at a low dose 25mg a day, and then gradually increasing it over a period of 8 weeks to 200mg daily? 100mg twice a day, I think? I won't start until Monday though because I have nobody to take me to the pharmacy until then, and I'm not allowed to drive.

My big symptoms now (besides complex partial seizures) are insomnia, severe mood swings (after several nights in a row of tossing and turning), and this relentless day-and-night teeth clenching. I actually tend to sleep better nights when I'm seizuring, too?

I'm worried though...I've been reading about rashes, an increase in mood swings, a worsening of insomnia, and acne? That is one symptom that had improved over the years here...my acne. I was even on long-term antibiotics for it for a while there.

What can I expect though? Does it help with anxiety? I used to be on Klonopin, and I loved it. Is it anything like Klonopin?

 

[Rae1889]

My acne got better on lamictal, but I was losing a lot of hair

 

[elizzza811]

Oh, no:-( That's not good. My hair is actually falling out a lot already now:-(

 

[Nakamova]

Hi elizza --

It's great that you may have a diagnosis, and are trying out a med. Everyone seems to have very different reactions on Lamictal, and the side effects can change as your body adapts. I had some side effects at first that went away after a few months. Other side effects have stuck around. Overall it gives me seizure control (3 years and counting) and the side effects are tolerable.

Here are some recent threads with a lot of info and feedback about Lamictal:

http://www.coping-with-epilepsy.com/forums/f23/anger-w-lamictal-increase-12640/

http://www.coping-with-epilepsy.com/forums/f27/aeds-give-you-worst-side-effects-977/
http://www.coping-with-epilepsy.com/forums/f20/new-reducing-lamictal-12658/
http://www.coping-with-epilepsy.com/forums/f23/lamictal-opinions-all-good-bad-sought-12552/

 

[momof3boys]

I have left temporal lobe epilepsy, and my dr tried me on Lamictal in April. I was on it for a couple of weeks, and it started affecting me alot. First came the mood swings, alot of times I could get angry or cry over the stupidest little things. Then within days after starting it, I had what looked like acne on my chin and jaw area. Those got worse and turned into sore like areas where I had a couple on my chin and mouth area that got so bad that they started to form scabs and crack and bleed. Very painful. I also had swollen glands that started about a week or so after starting Lamictal. When I went from 25mgs twice a day to 50mgs twice a day, they got worse and the swelling got close to my airway. My primacy care dr said I was having an allergic reaction and told me to contact my neurologist right away. He took me off the lamictal and within 3 days of not taking it, things were much better. I also suffered from insomnia too. I recall laying in bed at night while everyone was asleep and I would still be up at 3am. Thats something I dont miss at all with that medication.

Now Im just giving my experience with Lamictal. Just because I had a bad time with it, doesnt mean you will too. But if anything comes about that concerns you, make sure you run it by your dr or pharmacist.

 

[elizzza811]

So many doctors told me everything was 'all in my head'. Or in my records it states 'psychosomatic tendencies'. I know I must have looked psychosomatic going in there and asking them to test me for various illnesses, but that was only because they'd run the most basic of tests, they'd all come back normal, and then they'd drop the ball on me...so I was just searching for answers. I knew something neurological though was going on with me.

Nakamova, thanks for the links...I will check them out!

Kristin, what medication did you go on when the Lamictal side effects became intolerable?...just in case I have problems?

Also, as crazy as this sounds, I wonder if your reaction to Lamictal was a reaction to strep antibodies, strep antibodies that crossed the blood-brain barrier and are possibly causing these seizures? I say this only because I have severe OCD, too (I'm on disability for it) - and apparently some research out there suggests that OCD might be caused by strep antibodies that crossed the blood-brain barrier? That would explain the Lamictal reaction if strep antibodies are involved in temporal lobe seizures, too, since the throat, mouth, tonsils would all be involved? I doubt this has been investigated, but it's something to think about. Google 'OCD and strep antibodies'.

 

[elizzza811]

I just googled pictures of the Lamictal rash out of curiosity, and some of them look identical to the Lyme Disease rash and the bartonella (Cat Scratch Fever) rash, and this concerns me.

It concerns me because I've tested positive for both bartonella and Lyme Disease - 3 times for Lyme Disease - once through Quest even, a lousy lab for Lyme testing - but ironically I only tested positive on a Quest Lyme test after I'd been given antibiotics for chronic Lyme (which most doctors consequently don't believe in). Before the antibiotics for Lyme, I was negative for Lyme Disease through Quest?

And now this all has me wondering if my seizures are Lyme-Disease-bartonella-related? I noticed that a lot of the 'side effects' of Lamictal mimic the symptoms of these very infections?

 

[mel239]

I had an allergic reaction to lamictal and I too had sharp waves in the left temporal lobe.I dont know much about the strep connection,but I know I am 47 and have had strep 4 times a year since I was 5-antibiotics usually but not when I was younger my parents never took us to docs.I had it so bad when I was 30 that I was in a hospital for a week in an induced sleep.When I was discharged the nurse told me how close I had come to dying.But my epi docs drug of choice and my favourite has been trileptal after the first few months of blurriness,tiredness,unsteadiness and etc.. recently,hes added zonergran because trileptal wasnt holding them completely

 

[momof3boys]

At the time, I was on Keppra along with the Lamictal. After doing the VEEG, he kept me on the Keppra, we tried Vimpat, to the Keppra but that didnt work. On April 19th, He added the Lamictal to the Keppra. Then April 27th, he tells me he wants to wean me off the Keppra the next 12 weeks ahead, but at the same time increase my lamictal til I got to 100mgs twice a day of the Lamictal. When May 6th hit, thats when I was down to 2500mgs of Keppra, and 50mgs twice a day of the Lamictal. He found out about the allergic reaction and took me off, and I stayed on the Keppra at that dose til May 25th, then they put me back on the Keppra XR at 3000mgs.

Thats all I have been taking since then.

 

[momof3boys]

So many doctors told me everything was 'all in my head'. Or in my records it states 'psychosomatic tendencies'. I know I must have looked psychosomatic going in there and asking them to test me for various illnesses, but that was only because they'd run the most basic of tests, they'd all come back normal, and then they'd drop the ball on me...so I was just searching for answers. I knew something neurological though was going on with me.

Nakamova, thanks for the links...I will check them out!

Kristin, what medication did you go on when the Lamictal side effects became intolerable?...just in case I have problems?

Also, as crazy as this sounds, I wonder if your reaction to Lamictal was a reaction to strep antibodies, strep antibodies that crossed the blood-brain barrier and are possibly causing these seizures? I say this only because I have severe OCD, too (I'm on disability for it) - and apparently some research out there suggests that OCD might be caused by strep antibodies that crossed the blood-brain barrier? That would explain the Lamictal reaction if strep antibodies are involved in temporal lobe seizures, too, since the throat, mouth, tonsils would all be involved? I doubt this has been investigated, but it's something to think about. Google 'OCD and strep antibodies'.

Well they did tests on me to see if I had any infections, and all came back normal. My blood came back fine, saying no infections were going on. Thats what made my dr think that something wasnt right... so thats when she looked up side effects of Lamictal and it said in the section of Severe side effects that swelling of the glands should be reported to your dr immediately. Due to the amount of swelling I had, she said she didnt feel comfortable leaving me on it and me ending up having trouble breathing.

But whats weird is that just days, like 3 days after not taking it, the swelling in my glands had gone down so much! The Tenderness I had was gone, and acne that came with the Lamictal was getting better too! And my emotions had gone from crazy wild, all over the place, to hardly nothing! It was a fantastic change! But one thing my dr did point out is that she has seen studies who show that there could be a possible connection of people who are allergic to sulfa medications, can easily be allergic to Lamictal too. And I just happen to be one of those people allergic to sulfa medications. So who knows.... all I know is the side effects to the allergic reaction starated a few days after I started taking it.

 

[elizzza811]

Thanks for all the input. I'm still really nervous about starting the Lamictal, even though I don't think I'm allergic to sulfa meds. I guess I'll just give it a try though because I do kind of miss driving and want my driver's license back.

On the bright side, I do have 2 months worth of Cefdinir left from the Lyme Literate nurse who had been treating my chronic Lyme, if I do happen to break out in acne on the Lamictal. She also gave me a script for heparin because one test she'd done on me did indicate that my blood was a little sticky from the Lyme Disease. I never started these meds though because of the seizures back in December.

With this OCD though on top of the seizures, I do think strep antibodies are involved...in fact, maybe the antibiotics that I thought were killing Lyme Disease were actually holding the strep antibodies at bay? Makes me wonder? As a teenager I used to get some pretty major sinus infections twice a year...fall and spring...and my parents never took me to the doctor for them, just blaming them on being 'colds'. Also, when things really came crashing down on me back in 2005, I had some sort of sinus issues going on that only antibiotics seemed to help...vocal chord polyp and all. Doctors stopped giving me antibiotics though, even though I'd been begging for them. It took getting diagnosed with Lyme Disease to get antibiotics and any relief.

I'll keep Keppra in mind though.

 

[k2s4ever]

I just started on 50 mg daily of the generic on 6/7/11-so just a little under 2 weeks. I'm still having auras, but no side effects on this dose. I don't expect to see any squashing of the aura until the dose is higher (if this AED will be the one to finally suppress my auras of possible SPS-please oh please, I hope!). I look for signs of the rash-so far so good. On top of everything, it's moving into mosquito season and I'm starting to get bitten here & there. I also live in one of the high rate Lyme Disease states, where my area is very high. I've had family members and colleagues alike get it. I've been bitten twice by a deer tick too and was lucky each time it wasn't a bad tick. I got checked out and all. It's amazing I even caught both those tiny dot size nasty things! They're very small.
My temporal lobe shows slowing on EEG and spikes & sharp waves, though it didn't say where the sharp waves are.

 

[elizzza811]

Thing is, on Lymenet they recommend getting tested through IGeneX labs...the most accurate lab for Lyme testing...because most ordinary labs (such as Quest) miss Lyme and report it as 'negative', when the person does in fact have Lyme. Normally I would think that these Lymenet recommendation were bogus, their pushing a specific lab, but I witnessed proof of this firsthand myself.

...I was tested through Quest and Omega labs multiple times for Lyme...always negative.

...I saw a Lyme Literate Medical Doctor, got tested through IGeneX, and was CDC-positive for Lyme first time and every time I've been tested since.

...Just for fun though, I got tested through Quest for Lyme after having been given IV antibiotics for Lyme. And guess what, this time I was positive for it. And remember, just a couple of months earlier, they'd reported me as 'negative' and I'd been exhibiting identical symptoms. So basically until they knocked the concentration of spirochetes down in my bloodstream to where my immune system could function and produce detectable antibodies, most labs reported me as 'negative'.

So I'd still worry about that tick bite...I don't believe in 'good' ticks.

 

[k2s4ever]

egads! my deer tick bites (two separate ones about 2 weeks apart in the same summer) were actually a good 5 years ago! OMG if I had Lyme all this time. I imagine I'd be really bad by now in terms of the long term effects--I'd have to know by now. But sheesh-late stage Lyme does cause CNS issues I would think. and I did end up with this neurological stuff in 2007-you never know. I'm not overly fatigued, and I don't have any other what I think are late stage issues. But it's something worth being aware of.