New here...

CallMeSam · #1 10-29-2009, 04:18 PM

Hi, I'm new here. I've been diagnosed as Epileptic for two years now. I was taken to the ER By ambulance the first time I had seizures actualy and was hospitalized for just over a week.
I've been on Lamictal since then. However a few weeks ago my doctor took me off of my seizure medication since I had gone two years without a seizure.
This ended on Monday when I had FOUR Grand Mal seizures between 11am and 9pm. I'm now back on my meds full force and going to see my Neurologist soon.

I guess I'm here because I don't know anyone who has anything like this. And I'm not sure how to deal with it. My family is freaking out watching me, I'm not allowed more than a room away for the moment without them knowing.
I'm really hopeing that will change soon.

**Nakamova** · #2 10-29-2009, 04:49 PM

Hi Sam --

Welcome to the forum!

I hope your doctor tapered you off the Lamictal very slowly (over 3-6 months) -- otherwise the withdrawal itself could have triggered your seizures.

It's understandable that your family's worried and freaked out right now, but that will lessen over time. Once you see your neurologist, he should be able to give them and you an updated report. Since you responded well to the medication the first time around, it bodes well for you now that you're back on it, and your chances of having seizure-control on meds are very good.

I hope you're feeling okay. I know from experience that one grand mal (let alone four!) can be very hard on the back.

Best,
Nakamova

skillefer · #3 10-29-2009, 04:50 PM

Hi Sam! Welcome to CWE.

I totally understand. I have grand mals.

When I was young, my neurologist took me off meds after 2 years of no seizures. (this is pretty common) When I was 13, I started having them again. I'm back on meds. Your family will settle down again...just give them time. Grand mals are scary to watch.

IN the meantime, feel free to browse here...ask questions, vent, etc.

You're not alone.

CallMeSam · #4 10-29-2009, 04:56 PM

Originally Posted by Nakamova

:

Hi Sam --

Welcome to the forum!

I hope your doctor tapered you off the Lamictal very slowly (over 3-6 months) -- otherwise the withdrawal itself could have triggered your seizures.

It's understandable that your family's worried and freaked out right now, but that will lessen over time. Once you see your neurologist, he should be able to give them and you an updated report. Since you responded well to the medication the first time around, it bodes well for you now that you're back on it, and your chances of having seizure-control on meds are very good.

I hope you're feeling okay. I know from experience that one grand mal (let alone four!) can be very hard on the back

Best,
Nakamova

He actualy only took me off of them over two weeks. I figured that he knew what he was doing, so didn't contest it. He's the only neurologist I have access to and that is because he flys to my town two weekends a month.

My poor brother was home alone with me during the first one and had to call my mom who was 40 minutes away at work! It's actualy kinda cute, if he can't see where I am he's texting me to see If I'm okay.

I was wondering about the muscle aches, since having four it feels like somone beat me with a bat or something, but I figured it was from the seizures.

I'm optimistic about the seizure medication this time.

**Nakamova** · #5 10-29-2009, 07:29 PM

Sam -- the below is from a site about lamictal withdrawal:

"When stopped abruptly, serious withdrawal effects occur. It is imperative that a person never stop taking Lamictal abruptly mainly because of the possibility of having a life threatening seizure. It is strongly recommended that the person taper off the drug very slowly over many months or even years. Each step down will likely cause sleeplessness, more irritability, crawling skin, jumpy leg muscles and all other above-mentioned withdrawal symptoms until the body becomes accustomed to the new dose. Also, interesting to note is that the final, small doses are the hardest to stop because of feelings of nausea and physical discomfort when there is absolutely no Lamictal in the system. People have remained on very low doses for many months because of these symptoms. It is important that a person be in therapy or connected with a physician that is familiar with this drug in order to decrease the discomfort of withdrawing from Lamictal."

Your muscle aches are definitely from the seizures. Go easy on yourself, your muscles will heal, but it takes a little time.

Chatter-box · #6 10-29-2009, 07:59 PM

I'll add one more thing to that from experience. Don't miss a dose and try to "catch up". The reaction can be powerful. I missed my morning dose so I took it when I remembered late at night and again when I got up as I usually do. Man, that was some experience. The dizziness and loss of coordination was really severe. Even closing my eyes and lieing down didn't help at all until it let up a few hours later. That Lamictal can sure give you a wallop! If it didn't work I'd pitch it, but it does so I guess being careful is the answer. Don't stop it too fast or even miss a dose, and if you do just let it go until your regular schedule. You'll pay for it, if you don't. I sure learned that!

**danjor** · #7 10-29-2009, 08:53 PM

Excellent advice here. It stinks that there aren't any neuorologists in your area. We have to travel a good ways to mine too. Welcome to the site and feel free to PM me anytime

alivenwell · #8 10-29-2009, 09:21 PM

Welcome! I've also had excellent results with Lamictal. Some people do not. I've not experienced the skin rash that some people have had with it.

Personally, I've been setting alarms on my cell phone, watch, etc. so I do not miss a dose. I find that an average paced walk outdoors can do wonders to relieve stress. For me, the stress has been a huge factor. We're all different. It definitely sounds like withdrawal of Lamictal caused them. I wonder if he wanted to try something new when he pulled the plug there. It doesn't make sense.

charliekins · #9 10-29-2009, 09:49 PM

Bit late, but hello and welcome! :-)
xxx

**BuckeyeFan** · #10 10-30-2009, 08:00 AM

Welcome Sam.

You will find plenty of people here in your situation. Hope this site helps you with all the questions and stress. If your family has questions, you can show them some of the threads that explain epilesy. Epilepsy 101 - Part FAQ, Part tips and advice is very good.

I also take Lamictal (along with Dilantin). It has worked very good for me thus far.

If you have a local doctor, I would ask that he consult with your neurologist so that you have someone closer if needed. Your family doctor could make a nice link.

The idea above about walking to relief stress is great. If your nervous family members take turns walking with you, it could help their stress as well.