Coping With Epilepsy Lennox-Gastaut Syndrome Foundation
Free Advertisement
 

Go Back   Epilepsy Forum > Peer Support > The Kitchen


Reply
 
LinkBack Thread Tools
  #1  
Old 01-26-2009, 09:41 PM
joan's Avatar
Weaving the Community Fabric
 
Join Date: Jul 2008
Location: NJ Shore
Posts: 467
Thanks: 0
Thanked 7 Times in 7 Posts

Our experience with Lamictal


My son has only grand mals, albeit it long ones. His one and only meds he tried was lamictal. He is on 150 2x a day since 1/2006. It seems to do real well with the seizures, and it seemed after a few months he "adjusted" to it and did well. Now 3 years later we are considering switching him due to the side effects he is experiencing.

My daughter started lamictal 11/08 was upto 275 a day. It didnt "seem" to work for her as well but we also wanted to give it time to take effect. She usually has myoclonics and so far just 1 grand mal. (hopefiully the only one : ) At 150 mg she got a mild rash. We went to the ER and "supposedly" it was fine. It was a mild, small rash on her upper chest. No color, more like what shivers look like, bumpy skin. Last Friday she had that same rash over 4 spots on her body. I took her to the ER and had her Dr called. He had us bring her up and she was admitted with a lamictal reaction. They are weaning her off the lamictal and she is starting keppa.

I just want everyone on lamictal, and it does work so well for may, to know that the rash is NOT a severe rash. It had no pink or color to it and just looked like small bumps but it did have a soreness to it. Please be diligent and keep a look out for it. Its a nasty thing you dont want to mess with.

I hope everyone well
joan*
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #2  
Old 01-26-2009, 09:51 PM
smp smp is offline
New Here
 
Join Date: Jan 2009
Location: Arlington, Virginia
Posts: 7
Thanks: 0
Thanked 0 Times in 0 Posts
Joan-
Thank you. I just started on Lamictal. I am on my third day.
smp
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #3  
Old 01-26-2009, 09:58 PM
joan's Avatar
Weaving the Community Fabric
 
Join Date: Jul 2008
Location: NJ Shore
Posts: 467
Thanks: 0
Thanked 7 Times in 7 Posts
As long as you take the meds consistently you should be fine. My son is on Lamictal awhile and has never had any issues.

Good luck to you and welcome*

joan*
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #4  
Old 01-28-2009, 08:40 PM
KARDSHARQUE's Avatar
Joined the Party
 
Join Date: Jan 2009
Location: Massachusetts
Posts: 50
Thanks: 5
Thanked 11 Times in 8 Posts

The itch is unbearable.


I have had itches and rashes for a couple weeks now. They're on my legs and arms mostly but I have had them other places. With each passing day it gets worse. I went to the hospital but was told I have an ellergic reaction and was placed on meds. The rashes and itches continued and the meds didn't help. Finally after speaking to others My wife was able to get me an appointment tomorrow to see the neurologist. On my way home from work I noticed that as my arms were sweating while wearing my coat the itching got extremely unbearable, Has anyone else notice that about the sweating? I'll see the dr. tomorrow. Wish me luck.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #5  
Old 01-28-2009, 10:09 PM
epileric's Avatar
Super Moderator / Spaminator
 
Join Date: Dec 2007
Location: Ottawa, Ontario, Canada
Posts: 3,556
Thanks: 134
Thanked 587 Times in 508 Posts
try a sitz bath with baking soda. That might help the itch
__________________
"It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #6  
Old 01-29-2009, 05:22 PM
KARDSHARQUE's Avatar
Joined the Party
 
Join Date: Jan 2009
Location: Massachusetts
Posts: 50
Thanks: 5
Thanked 11 Times in 8 Posts
I just got back from the neurologist reguarding the rashes I suffer. He finds it hard to believe they're from the Lamictal but is willing to cut down on it while starting a new drug. The two of us decided before making that move I'll have a dermatologist look at it.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #7  
Old 01-29-2009, 05:46 PM
seizures4ever's Avatar
Weaving the Community Fabric
 
Join Date: Jul 2008
Location: Georgia
Posts: 456
Thanks: 0
Thanked 12 Times in 4 Posts
Originally Posted by KARDSHARQUE View Post:
I just got back from the neurologist reguarding the rashes I suffer. He finds it hard to believe they're from the Lamictal but is willing to cut down on it while starting a new drug. The two of us decided before making that move I'll have a dermatologist look at it.
Best of luck to you. I had a rash while on Lamictal, and it turned out not to be Lamictal related. So I was able to continue the medication, but my doctor said that it is always better to be cautious when you develop any unusual rash while on this drug.

Take care. -Julie
__________________
"I WILL NEVER GIVE UP ON MY DREAMS; I WILL JUST MODIFY MY PATH FOR REACHING THEM" -j (me)

"Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance."
-Garth Brooks
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #8  
Old 01-30-2009, 06:08 AM
Account Closed
 
Join Date: Feb 2007
Location: Tampa Bay Region, FL
Posts: 3,452
Thanks: 28
Thanked 19 Times in 14 Posts

Arrow Sharing my experience here ...


Originally Posted by KARDSHARQUE View Post:
I just got back from the neurologist reguarding the rashes I suffer. He finds it hard to believe they're from the Lamictal but is willing to cut down on it while starting a new drug. The two of us decided before making that move I'll have a dermatologist look at it.
Whoa - I just came across with a thought in mind;
is it by any chance....

Well, let me put it this way - people tend to wash
their clothes with TOO MUCH LAUNDRY SOAP! You
do not need to use much laundry soap! Even though
the bottle says ... you still do not need to use that
much! Even in hard water prone areas - you can
"balance" this out easily by adding a little fabric
softener WITH the laundry soap. So grab an old
plastic cup (like a child's toy cup) and if it says use
1 cap full or has a measuring amount on it, use
LESS - (more soap does not make your clothes
any cleaner, it actually keeps the soap residue
ON your clothes and actually causes your clothes
to wear out faster as well as fading, since so much
of it today is synthetic) and use like a little bit
of fabric softener and then add water to dilute it
and pour into the washer until it is about 1/4th
full and then you can add clothes into the washer,
unless you have a double loader, you can go ahead
and pour it in and it will run automatically.

Using a little fabric softener in the rinse cycle
helps - it prolongs the life of the clothes.

Moreover, people forget that in the WINTER TIME,
there's a lot of woolens and other itchy garments
out there, even though you might be wearing
"cotton" underneath - such garments actually
"traps" the body heat and causes some problems
to some people: from rashes to itching to even
allergic reactions!

Even I myself, in Florida, I have some wool here,
I'm sensitive (not really allergic) but dang, in spite
of what I wear under it - do I itch like crazy, and
where I can't wear cotton, like my neck for example,
you would have though I ran across poison ivy!
My neck would turn beat red - almost like "ring
around the neck" (instead of ring around the
collar)! I learned to wear cotton shirts or blouses
with large collars to go over those necks and avoid
those turtle necks.

Sweaters - they can be a problematic issue there;
so it does pay to read the labels! I stick to cottons
and leather and fur (genuine - not synthetic) and
have no problems with them.

======================

In addition - constant switching of brands of laundry
soaps as well as bathing / shower soaps can do you
in as well as shampoo / conditioner. It is a good idea
to stick with 1 or 2 so your body doesn't develop
sensitivity.

My son is super-sensitive to soap and I am allergic
to soap - so we have a dilemma here; but we finally
found specific brands that works. My son does not
get rashes anymore, and I do not break out like a
maniac all over my body. (While this may not apply
to anyone here - but we have to rely on fabric soften-
er heavily in our laundry even though we use half the
times the soap, if we don't use it, you can be assured
my son will break out rashes and I will be scratching
like a maniac and breaking out!)

My own mother has developed allergic reaction and
she's had to do the same thing what we are doing,
my own sister had, a long time ago, revert to the
same practice I had done.

=============================

Antibacterial Soap:

You should consult with your Doctor in regarding to
this. Some people go overboard with this. It is great
to use for washing hands, but now you see them in
for bathing soaps, facial soaps, yadda yadda yadda,
and people's skins are drying up, flaking, itching,
and all sorts of problems.

If some people have a problem with Acne, it is worth
the money to buy some good quality products, from
Avon to Estee Lauder - rather than cheap items from
the store shelves and why do I imply this? Because
these products deals with the specific area itself,
and not the entire face (if you have a problem with
just the sides of your cheeks for example, why in
the world do you want to buy something to wash
your whole face with?) and just a little bit goes a long,
long ways. A tiny little dot in the problem area covers
the base and the rest of your face is fine. These
women (mostly they are women) are experts, they
will examine your skin (whether teenage girl/boy to
adult men/women) and know specifically and exactly
what you need.

When I was on one anti-epileptic drug; it did cause
my face to break-out in specific areas, but I went to
one Department store and she was right on the dot;
and I did not need to see a Skin Specialist; I purchased
the product and followed her instructions specifically,
and within 3 days it was clearing up just like she said
it would be, then it was once a week. A little dab did
it. And then after one month. Stop. Whenever there
was a break-out that was starting, that was when I
would begin the once a week process for 2-3 weeks
and it would be gone.

=========================

So there are some other options here if your Doctor
does not believe it is caused by Lamictal. You might
want to give this a look through. But of course I am
NOT a Medical Doctor - but I've been through it all
and just sharing my end and experience.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #9  
Old 01-30-2009, 08:15 AM
Belinda5000's Avatar
Esteemed Pillar of the Community
 
Join Date: Sep 2007
Location: Atlanta,GA
Posts: 558
Thanks: 0
Thanked 6 Times in 4 Posts
Kardsharque,
itching can be a sign of an allergic reaction so you should havethat checked out w/yourneuro.I know because when I took Lamictal I itched so bad I scratched myself raw and I'm allergic to it.

Belinda
__________________
(A)abort (B)fail (C)retry (D)throw computer against wall

southern and proud of it.

I've had a VNS since 2000
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #10  
Old 01-31-2009, 05:35 PM
KARDSHARQUE's Avatar
Joined the Party
 
Join Date: Jan 2009
Location: Massachusetts
Posts: 50
Thanks: 5
Thanked 11 Times in 8 Posts
I saw the neurologist and he said he didn't recognize it. He recomended I see a skin dr. before stopping any of the meds. How is the VNS working? I'm supposed to get that soon.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #11  
Old 03-11-2009, 04:16 AM
New Here
 
Join Date: Mar 2009
Posts: 9
Thanks: 0
Thanked 0 Times in 0 Posts
Originally Posted by joan View Post:
My son has only grand mals, albeit it long ones. His one and only meds he tried was lamictal. He is on 150 2x a day since 1/2006. It seems to do real well with the seizures, and it seemed after a few months he "adjusted" to it and did well. Now 3 years later we are considering switching him due to the side effects he is experiencing.

My daughter started lamictal 11/08 was upto 275 a day. It didnt "seem" to work for her as well but we also wanted to give it time to take effect. She usually has myoclonics and so far just 1 grand mal. (hopefiully the only one : ) At 150 mg she got a mild rash. We went to the ER and "supposedly" it was fine. It was a mild, small rash on her upper chest. No color, more like what shivers look like, bumpy skin. Last Friday she had that same rash over 4 spots on her body. I took her to the ER and had her Dr called. He had us bring her up and she was admitted with a lamictal reaction. They are weaning her off the lamictal and she is starting keppa.

I just want everyone on lamictal, and it does work so well for may, to know that the rash is NOT a severe rash. It had no pink or color to it and just looked like small bumps but it did have a soreness to it. Please be diligent and keep a look out for it. Its a nasty thing you dont want to mess with.

I hope everyone well
joan*
Lamictal is great! The best ever.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #12  
Old 03-11-2009, 04:19 AM
New Here
 
Join Date: Mar 2009
Posts: 9
Thanks: 0
Thanked 0 Times in 0 Posts
Originally Posted by smp View Post:
Joan-
Thank you. I just started on Lamictal. I am on my third day.
smp
how is lamictal working for you?
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #13  
Old 03-11-2009, 04:41 PM
Chris515's Avatar
CWE Supporter
 
Join Date: Feb 2009
Location: Winnipeg, Manitoba, Canada
Posts: 396
Thanks: 28
Thanked 95 Times in 39 Posts
I've been on Lamictal for 5 years now, works pretty well for me. I was on Tegretol for 11 years before that. I seem to have fewer simple partials now (~ 1 every other week as opposed to every other day on the Tegretol) but more tonic clonic's, albeit not many... About 1 every other month.

I find that they are situation induced though (Stress!!)

Still, I like Lamictal better. I eased onto it during one of my busiest years of university, and at one point was on a full dose of it as well as a full dose of Tegretol. I was officially sedated, don't remember much from that time. Then I eased off the Tegretol and WOW! My mind felt so much clearer than when I was just on the Tegretol. Overall it was a 4 week period to get on Lamictal, I avoided the rash that way.

My GPA went up a whole letter grade after being on Lamictal, so I love it. Also I had a two year remission period from 2004-2006. I'm back on the seizures now though...
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
  #14  
Old 03-12-2009, 12:10 AM
Account Closed
 
Join Date: Feb 2007
Location: Tampa Bay Region, FL
Posts: 3,452
Thanks: 28
Thanked 19 Times in 14 Posts
Lamictal is working pretty good, insomuch
I am finding that it has an impact on me
like Dilantin was years ago (although it may
or may not apply to anyone here). Dilantin
has always been so good to me, unfortunately
not able to take the medication anymore; and
has not been on it for a very long time due to
Dilantin / Phenytoin's side effects took its toll.
Add Post to del.icio.usNetscape this post!Stumble this Post!
Reply With Quote
Reply

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are On


Similar Threads
Thread Thread Starter Forum Replies Last Post
Experience AURA or AURAS? brain Back Fence 281 02-05-2012 01:21 AM
What's The Funniest Experience During A Seizure? Elaine H The Kitchen 27 01-05-2009 08:28 AM
My experience today trebla The Foyer 7 09-08-2008 05:55 AM
[GARD/GFCF] My experience with The G.A.R.D. diet so far. BIGMAN131307 History Book 2 04-05-2008 07:28 AM
Symptoms..does anyone else experience this? stacyuf1 The Kitchen 1 03-15-2007 04:34 AM


All times are GMT -5. The time now is 03:48 PM.


Powered by vBulletin® - Copyright ©2000 - 2012, Jelsoft Enterprises Ltd.
Content Relevant URLs by vBSEO ©2009, Crawlability, Inc.
Copyright 2005 © Measuring Up. ALL rights reserved.