New and freaking out...and alone

[mommymela]

I have epilepsy. I got the brain scan and it's clear, no tumors, so the doc put me on 50 mg of lamictal. I stopped taking it bc I have no energy and feel worse on it. I am a single mom to a 5 yr old and a 2 yr old. Their dad lives in Virginia, and I don't really have a family or boyfriend, so it's just us. I work full time as a server and have a babysitter for the kids. Thankfully the kids have been with the sitter during these 4 or so seizures I've had lately the past couple months...after reading more about epilepsy I'm totally freaked out to hear that I could have a seizure in my sleep and die, so I'm going back to the doctor Monday to talk about the lamictol dosage. What dose do most people take? Anyway, just looking for people to talk to about this.

 

[mommymela]

Oh, I also lost my license and have since begun riding the bus and/or bribing others to drive me places. It stinks!!! I loved driving.

 

[Nakamova]

Hi mommymela, welcome to CWE!

There are other meds to try beside Lamictal if its side effects are intolerable. I'm on Lamictal at 150mg/day. I'm not a ball of energy, but I'm not zonked out by it either. A basic range for the dose is 200mg to 400mg/day, but some folks require higher amounts, and some like me require less.

I know the meds can be tough, but the alternative (uncontrolled seizures; loss of driving privileges) can be worse. You don't want your brain to get in the habit of seizing, because the more you seize, the easier it gets for your brain to seize in the future. I'm sorry you've got to deal with all this on top of being a single mom. I hope you and your neurologist can figure out something that will work for you.

Best,
Nakamova

 

[mommymela]

So my dose was still on the low side and I felt that way???? Mannnnn so much of what I read here is completely new to me!

 

[Nakamova]

Some of the side effects go away once you reach a therapeutic level. When I first went on Lamictal, I felt both hyper-perky AND exhausted -- I got a lot done during the day, but my sleep at night was very restless and unsatisfying. But that side effect went away after I was stable for a bit. Now I tend to sleep a solid 8 hours at night.

 

[mommymela]

Well I'm also on xanax for anxiety so I don't have trouble sleeping, but I do have trouble being lively and energetic and getting things done during the day on it.

 

[Ann T.]

Hi, mommymela: Let your neurologist know you are taking Xanax if he (or she) doesn't already know. Do you think the Xanax could be interacting with your Lamictal? Also, feel free to drop by here whenever you need to. This site by far has been the most supportive & we do our best to help support each other. Take care, mommymela.
Best Regards, Ann

 

[mommymela]

Yes, ofcourse, he knows about the xanax. They are supposed to be ok together. Thanks Ann!

 

[no.guru]

Welcome, mommymela.

I've never taken lamictal, but finding the right med(s) is the Russian roulette we all have to play. You will find many here who can empathize with you.

I hope your seizures are brought under control soon.

 

[LJ-Bain]

I am so glad to hear that you have a reliable babysitter!
It sounds like you're trying to do it all....work, single mom and now seizures!
I have 3 kids, 1 yr, 2 1/2, 5 1/2 and they have witnessed me have maaaaaaaaaaany seizures. Mine however are simple/complex partial seizures.
Have you ever talked to them about that Mommy has seizures has now so that they won't be scared when it happens? Especially the 5 yr old. Does your eldest know how to dial 911? Do they know that Mommy usually does wake up after a little bit after the seizures?
Does your work know?
I just find that it works to have many allies on your side just in case things happen at work or when you're at home alone with the kids.
Finding the right drug cocktail can be quite the journey. I'm on Keppra so I'm no help with the Lactimal questions. I hope they find the right combination for you soon?

 

[Cint]

It sounds like you're trying to do it all....work, single mom and now seizures!
I have 3 kids, 1 yr, 2 1/2, 5 1/2 and they have witnessed me have maaaaaaaaaaany seizures. Mine however are simple/complex partial seizures.
Have you ever talked to them about that Mommy has seizures has now so that they won't be scared when it happens? Especially the 5 yr old. Does your eldest know how to dial 911? Do they know that Mommy usually does wake up after a little bit after the seizures?

When my 2 kids were young, I was married to a pilot, so most of the time I was a single mom also. They witnessed maaaaannnnyyyy seizures, too. Mostly CP's, lots and lots of them but also numerous TC's, too. My daughter was only 6 years old when she saw her mommy experience a TC. She knew to call a neighbor who called 911 because her daddy was on trip somewhere. After that happened, they knew to dial 911, even if they were scared. But they still thought their mommy was going to die when they witnessed a bad TC seizure. It's scary for anyone to witness. I talked to their pre-school and school about epilepsy and all their friends & our neighbors, just to inform everyone we knew what to do/not to do.

 

[Cint]

Oh yes, I once took Lamictal, seems like it was 300 mgs./day, but it did nothing for my seizures. It did help with my moods, tho. It is one of the AED's used as a mood stabilizer, also.

 

[mommymela]

Wow, well I guess they will probably be upping my dosage and I better suck it up! lol

 

[mommymela]

I am so glad to hear that you have a reliable babysitter!
It sounds like you're trying to do it all....work, single mom and now seizures!
I have 3 kids, 1 yr, 2 1/2, 5 1/2 and they have witnessed me have maaaaaaaaaaany seizures. Mine however are simple/complex partial seizures.
Have you ever talked to them about that Mommy has seizures has now so that they won't be scared when it happens? Especially the 5 yr old. Does your eldest know how to dial 911? Do they know that Mommy usually does wake up after a little bit after the seizures?
Does your work know?
I just find that it works to have many allies on your side just in case things happen at work or when you're at home alone with the kids.
Finding the right drug cocktail can be quite the journey. I'm on Keppra so I'm no help with the Lactimal questions. I hope they find the right combination for you soon?

Yes, I taught the 5 yr old how to call 911 and give our address. It's sad that he has to be the man of the house! Poor kid. I love him so much, I had him when I was only 19, and he has always been a lifesaver! :woot:

 

[Krista2882]

You should give Lamictal a chance. A lot of the side effects wear off after a month or so. If that doesn't work, there are a lot of different meds you could try, or any combination. It took about 8 years for me to be on the right combination and dosages of meds-
1000 mg Tegretol
2500 mg Keppra
400 mg Lamictal

 

[Soniag]

i'm on 1200mg of tegrotol but still have seizures. i had to give my driving licence up last year and now have to wait another 12 months to get it back. my doctor told me though not to mix different tablets as this could cause more seizures.

 

[mommymela]

Yep, they upped my lamictal to 200 mg so we'll see how this goes!

 

[acpollard2010]

It might be hard at first explain it to your work that the side effects should be temporary I hope.with yours its good that your kids are aware my nieces an nephews use to run til we just showed them I was ok and always take meds prescribed if u dont feel there workin call neuro should take my own advice but no kids I couldnt imagine what its like with kids gone bak an fourth

 

[Meetz1064]

My daughter

was 4, I think, when she had to call 911 for me. That sucked a hill o'beans, but I had explained things to her, and she talked to her uncle on the phone (he's a cop and was on duty that day) who said he'd be right over--and he was. She has had to deal with a couple of my t/c's unfortunately, but knows exactly what to do if she ever sees anyone else have one!

 

[Believer]

When my seizures came back in 2008, that is one of the medications they put me on. I was having all sorts of reactions to the medication, sometimes you have to look online with the reactions of other medication. We hope the doctors know everything about the meds they give us but they don't always check for the reactions that could happen with the meds we take. At times the reaction can be minimal and they may not think it is necessary to say anything because it is rare that it would occur. That happened to me when I was put on Lamictal and Keppra,I had severe reaction to both. Fortunately my neurologist listened to us but that doesn't always occur especially when you need to leave a message and the doctor doesn't get the message immediately. Hope you are doing better.