New girl :)

[katzy]

Hello Everyone, I'm a nursing student and someone with Frontal Lobe Epilepsy.Well I started having Simple partial seizures[I didn't even know they were seizures until I read all abut epilepsy, so I didn't tell my parents about all the weird numbness I was getting] when I was 12 and was diagnosed when I was 13 when I had my first tonic-clonic seizure at school. Since then all I had was Tonic-Clonics and extreme headaches afterwards.Now I'm 19 and seizure free since October 2009:woot:.First in 2007,my neuro put me on Trileptal, but it gave me Steven-Johnson Syndrome and was hospitalized for a week.Then she put me on Keppra 3000 mg,but that didn't control my seizures, so she added Lamictal 400mg and weaned me off Keppra.I took Lamictal for 4 years I think. let me tell you, the Lamictal screwed up my brain and my memory sucks I decided to go off my AEDs just like any other stupid teenager would do in January 2012:roll:. I visited my neurologist today and she suggested that I do a 24 hour ambulatory EEG. If she sees any seizure spikes she would put me back on Lamictal. (I have an EEG n 21st)

In 2010 I was having a lot of problems in school because of my memory. I was a straight A student before I started taking Lamictal. When I told my neuro that I can't concentrate in class and have poor memory she prescribed me Vyvanse 20 mg; that didn't seem to work for me, so I told her it wasn't working, so she took me off of it. Today when I went for my appointment I told her that I make silly mistakes and lack motivation, she put me on Vyvanse 40mg again and I have to go back next month to see her. I don't know how I'm going to manage college work and Drs appointments.. That's my story

 

[Nakamova]

Hi katzy, welcome to CWE!

And congrats on being nearly 3 years seizure-free!

If your EEG shows abnormal spikes, maybe you could try a much lower dose of Lamictal, in the hopes of minimizing any side effects. My neuro wanted me at a minimum of 300mg/day of Lamictal, but I resisted, and have been 4 years seizure-free at a much lower dose -- 150mg/day. I don't have any noticeable memory or cognitive side effects.

BTW: "Vyvanse can increase the risk of seizures, especially in people who have had seizures before." Maybe it's not such a good idea for your neuro to prescribe it...

Best,
Nakamova

 

[katzy]

Hi katzy, welcome to CWE!

And congrats on being nearly 3 years seizure-free!

If your EEG shows abnormal spikes, maybe you could try a much lower dose of Lamictal, in the hopes of minimizing any side effects. My neuro wanted me at a minimum of 300mg/day of Lamictal, but I resisted, and have been 4 years seizure-free at a much lower dose -- 150mg/day. I don't have any noticeable memory or cognitive side effects.

BTW: "Vyvanse can increase the risk of seizures, especially in people who have had seizures before." Maybe it's not such a good idea for your neuro to prescribe it...

Best,
Nakamova

Thanks .. If you don't mind, what type of Epilepsy and seizures do you have? and What age were you diagnosed?

Honestly I don't think Lamictal controlled my seizures, I think I grew out of it by the time my dr put me on it.My seizures were really infrequent and came in clusters like once a month or 2 in a month. 300 mg/day isn't bad compared to the 400mg I was taking. It just slowed my brain down imo.

I took Vyvanse for a month and was fine, didn't have any seizures. So let's see what's going to happen.

 

[Nakamova]

I have tonic-clonic (grand mal) seizures. They showed up out of the blue when I was 35 (12 years ago). I was diagnosed right away based on my EEG.

 

[katzy]

I have tonic-clonic (grand mal) seizures. They showed up out of the blue when I was 35 (12 years ago). I was diagnosed right away based on my EEG.

oh okay, hope they're well controlled. I didn't even have auras when I had them, so one day I dropped from my school bleachers.

 

[Nakamova]

yes, when there's no warning it's tricky. No warnings for me either -- I've had seizures at a parade, on the beach, at a wine tasting, in the office, at a friend's house, while I'm on the phone, just after swimming.... but they're well-controlled now, 4 years seizure-free.

 

[katzy]

yes, when there's no warning it's tricky. No warnings for me either -- I've had seizures at a parade, on the beach, at a wine tasting, in the office, at a friend's house, while I'm on the phone, just after swimming.... but they're well-controlled now, 4 years seizure-free.

Ouch! Those years must have been really hard for you and your family. great to hear you're seizure free for 4 years:woot:

 

[LisaBee]

Welcome Katzy!!

 

[DadofTwins]

Welcome to CWE

Hi & Welcome,

Congrats on three years! You are among friends. Feel free to ask questions. You are sure to get a response. This is a wonderful community!

Tom

 

[CQ:)]

Hi Katzy,

Welcome to CWE & congrats on being 3 years seizure free

 

[Ryan.2288]

Can I ask you how quickly you got off of the Lamitcal? As in how many mgs you went off at once, and how long until you got off of more? I am currently on 600MG and would like to slow. Thank you

 

[AngelwithDentedHalo]

Welcome Katzy. I had my first and only Grand Mal seizure January 4th 2011. I'd been hospitalized two days prior for total kidney failure, dehydration and high potassium of 9.4. After being in the ER for hours after my seizure and I went home, I saw a Neurologist 2 weeks later and he put me on Keppra, started slow at first and now I'm up to 750 MG twice daily. Two months after my seizure, they did an MRI and found the entire right side of my brain filled with blood. My Neurologist was notified right away and he had them take me to the hospital where I underwent emergency brain surgery.

They suspect a brain trauma was the cause of the seizure and possibly the brain bleed, which would't surprise me since I've had 7 in my life. I've had one grand mal but think I've had Complex partials, that's what I'm told. I recall nothing after the seizure until I was in the ER except a brief moment of consciousness in the ambulance. Glad your seizures are under control. I have an EEG in November.

 

[katzy]

Can I ask you how quickly you got off of the Lamitcal? As in how many mgs you went off at once, and how long until you got off of more? I am currently on 600MG and would like to slow. Thank you

Please don't do it without asking your doctor if you're having seizures now, I don't want you to have seizures listening to me. I can tell you I didn't do it the safest way. I was taking 200 mg twice a day, so 400 mg in total. I completely stopped taking my evening dose one day. and continued taking my morning dose for abut 2 weeks, and then I stopped it altogether. I don't think it's safe for anyone to just quickly take off 200mg .. so please go to your doctor!

 

[katzy]

Welcome Katzy. I had my first and only Grand Mal seizure January 4th 2011. I'd been hospitalized two days prior for total kidney failure, dehydration and high potassium of 9.4. After being in the ER for hours after my seizure and I went home, I saw a Neurologist 2 weeks later and he put me on Keppra, started slow at first and now I'm up to 750 MG twice daily. Two months after my seizure, they did an MRI and found the entire right side of my brain filled with blood. My Neurologist was notified right away and he had them take me to the hospital where I underwent emergency brain surgery.

They suspect a brain trauma was the cause of the seizure and possibly the brain bleed, which would't surprise me since I've had 7 in my life. I've had one grand mal but think I've had Complex partials, that's what I'm told. I recall nothing after the seizure until I was in the ER except a brief moment of consciousness in the ambulance. Glad your seizures are under control. I have an EEG in November.

OMG that's terrible. What type of EEG are you having? sleep deprived?

 

[AngelwithDentedHalo]

I don't know yet, he may do that since the first one didn't show anything, guess I'll know later. I know I'll have it in November cause I have a follow up with my Neurologist in December and we're going to discuss the results then. I think they only schedule a month or two in advance.

 

[MuayThaiFighter]

Welcome and i'm glad you have went a good time without seizures. It's unfortunate that you are having problems with the medicines. Best of luck and I hope they can find the right mix.