A rash - But is it THE rash?
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Well, darn. I might as well close up the ball field and go home. I feel like it's "game over."
I just came from my epi, and he took me off the Lamictal all together. He looked at the rash, heard it was spreading, and said it wasn't worth the risk when we still have a few other drugs we can try. So hello, Trileptal.
I"ve had a rash with three anti-seizure meds. Now I'm on my 4th. Trileptal seems to have a lower incidence of serious rash (J/S syndrome). Most of the research says there is a low incidence of rash with people who have had a rash on AED's before. So I'm not feeling completely warm and fuzzy about this change, but not completely against it, either. I'm not convinced we'll get different results but we'll see.
I was getting along so well so far on the Lamictal. Now this. Darn, darn, darn.
- So, what can you tell me about going off Lamictal cold turkey?
- Does Trileptal cause you to be "cognitively impaired?" In other words, will I be able to think on this stuff?
- Other than messing with my seizures and generally screwing me up, is it doing me harm to be going on a med, then cold turkey off, then going on a med, then cold turkey off?
I'll be on no AED's until the rash clears up. In the past if I had an allergic reaction to one drug and was started on another before the reaction cleared up, my body would just automatically react to the second drug, too. So, pharmeceautical free for me, probably for at least a week. I'm not looking forward to this.
I just came from my epi, and he took me off the Lamictal all together. He looked at the rash, heard it was spreading, and said it wasn't worth the risk when we still have a few other drugs we can try. So hello, Trileptal.
I"ve had a rash with three anti-seizure meds. Now I'm on my 4th. Trileptal seems to have a lower incidence of serious rash (J/S syndrome). Most of the research says there is a low incidence of rash with people who have had a rash on AED's before. So I'm not feeling completely warm and fuzzy about this change, but not completely against it, either. I'm not convinced we'll get different results but we'll see.
I was getting along so well so far on the Lamictal. Now this. Darn, darn, darn.
- So, what can you tell me about going off Lamictal cold turkey?
- Does Trileptal cause you to be "cognitively impaired?" In other words, will I be able to think on this stuff?
- Other than messing with my seizures and generally screwing me up, is it doing me harm to be going on a med, then cold turkey off, then going on a med, then cold turkey off?
I'll be on no AED's until the rash clears up. In the past if I had an allergic reaction to one drug and was started on another before the reaction cleared up, my body would just automatically react to the second drug, too. So, pharmeceautical free for me, probably for at least a week. I'm not looking forward to this.
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Even Keel
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Thank you. I appreciate the sympathy. I try to stay upbeat during all this because I think attitude is at least 50% of the battle, but it's been an up-and-down kind of day.
You know, I'm one of the toughest, strongest people I know. I can and have carried huge burdens on my shoulders at work, and in my personal life. But this stuff, the seizures and all the accompanying strangeness, exhaustion, and mental deterioration, feeling crappy all the time, dealing with meds, dealing with other people's perceptions of my seizures, dealing with laws, work, and just managing to live my everyday life... Today I feel like epilepsy has me licked. I'm not a cryer, but I think it's time I had a good one.
You know, I'm one of the toughest, strongest people I know. I can and have carried huge burdens on my shoulders at work, and in my personal life. But this stuff, the seizures and all the accompanying strangeness, exhaustion, and mental deterioration, feeling crappy all the time, dealing with meds, dealing with other people's perceptions of my seizures, dealing with laws, work, and just managing to live my everyday life... Today I feel like epilepsy has me licked. I'm not a cryer, but I think it's time I had a good one.
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*shoulder offered*
Go ahead and cry. We all have those moments/days/weeks. The medication merry-go-round is SO stressful, not only because of the side effects and the vigilance required during the taper on/taper off, but because you get your hopes raised, you think maybe this time it'll be the perfect drug the one with no side effects and guaranteed seizure control...
I don't have any experience with Trileptal, but I hope it's the winner for you. I don't think going off any of the AED meds cold turkey is a great idea, but clearly your neuro thought the risks of staying on the Lamictal weren't worth a slow taper. I hope your med-free week goes well. Maybe you'll get a moment where you'll feel like "yourself", no meds, no seizures, just yourself.
Go ahead and cry. We all have those moments/days/weeks. The medication merry-go-round is SO stressful, not only because of the side effects and the vigilance required during the taper on/taper off, but because you get your hopes raised, you think maybe this time it'll be the perfect drug the one with no side effects and guaranteed seizure control...
I don't have any experience with Trileptal, but I hope it's the winner for you. I don't think going off any of the AED meds cold turkey is a great idea, but clearly your neuro thought the risks of staying on the Lamictal weren't worth a slow taper. I hope your med-free week goes well. Maybe you'll get a moment where you'll feel like "yourself", no meds, no seizures, just yourself.
Jan4you
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OH hon.. so sorry for all you are going through.
I went off Trileptal in a week but then I was only at the start of my 3rd week and highest dose when MY RASH kept getting worse. I had a little "detox" feelings I told my doc.. it was shaking and very icey cold. But the HEADACHE and off balance put me in the hospital for MS exacerbation!! So in my case it was different.
What I am told is any AED that has the potential for rash ONCE you have had it is to be avoided !!
Now my husband had the lamictal rash (in the groin area only ) and was taken off. He was on Trileptal the whole time and NEVER had any problems which is why I chose that one too. NOPE.. not for ME.
Hope it is ok for you..but don't be surprised if you break out too as you have with other meds.
Keep us informed as I know you wll
Jan
I went off Trileptal in a week but then I was only at the start of my 3rd week and highest dose when MY RASH kept getting worse. I had a little "detox" feelings I told my doc.. it was shaking and very icey cold. But the HEADACHE and off balance put me in the hospital for MS exacerbation!! So in my case it was different.
What I am told is any AED that has the potential for rash ONCE you have had it is to be avoided !!
Now my husband had the lamictal rash (in the groin area only ) and was taken off. He was on Trileptal the whole time and NEVER had any problems which is why I chose that one too. NOPE.. not for ME.
Hope it is ok for you..but don't be surprised if you break out too as you have with other meds.
Keep us informed as I know you wll
Jan
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Hello, everybody,
Thanks so much for the feelings of support. Yep, the good cry helped.
I feel emotionally much better after a good nights sleep. Yep, yesterday was extremely disappointing. You hit the nail on the head - my hopes were up so high that the Lamictal was going to be the right drug for me, then suddenly back to square one. But the doc did the right thing. I've only missed one dose so far, but the rash has continued to grow and get worse, despite antihisamines and steroid cream. The half life for Lamictal is 24-30 hours. So it may take a 2-3 weeks before it's sufficiently out of my system before my body quits reacting.
Drug withdrawl is an amazing thing. I was still on such a low dose of Lamictal I'd think stopping wouldn't do anything. Last night I woke up several times with the dizzies. Took blood pressure and it had taken a dive to 87/59. Same thing happened when I went off Keppra and Topamax. Still low this a.m. My heart is doing weird stuff, too. Beating really fast on and off. It's not alarming enough to go to the ER. I think I also had a two nocturnal seizures last night but I didn't wake up until each of them was just finishing, based on the residual auras I was feeling. Ick.
Thanks so much for the feelings of support. Yep, the good cry helped.
I feel emotionally much better after a good nights sleep. Yep, yesterday was extremely disappointing. You hit the nail on the head - my hopes were up so high that the Lamictal was going to be the right drug for me, then suddenly back to square one. But the doc did the right thing. I've only missed one dose so far, but the rash has continued to grow and get worse, despite antihisamines and steroid cream. The half life for Lamictal is 24-30 hours. So it may take a 2-3 weeks before it's sufficiently out of my system before my body quits reacting.
Drug withdrawl is an amazing thing. I was still on such a low dose of Lamictal I'd think stopping wouldn't do anything. Last night I woke up several times with the dizzies. Took blood pressure and it had taken a dive to 87/59. Same thing happened when I went off Keppra and Topamax. Still low this a.m. My heart is doing weird stuff, too. Beating really fast on and off. It's not alarming enough to go to the ER. I think I also had a two nocturnal seizures last night but I didn't wake up until each of them was just finishing, based on the residual auras I was feeling. Ick.
So sorry to here the lamicatal didn't work out Endless
I was taken off Tegretol cold turkey after being on it for 3 years...I have to say the withdrawal was not a pleasant experience at all. The doc did start ramping me up on Triletpal but started at such a low does that it wasn't enough to counteract the withdrawal symptoms
As for trileptal working...I have the same "seizure control" at 600, 900 and 1200 mg. The difference for me is side-effects...the stuff knocks me for a loop. At 600 I can function as long as I take it only at night. At 900 it means taking 300 during the day...not so good, I start slowing down both cognitively and functionally. At 1200 I'm a zombie...I won't move from one spot for hours on end. Nobody's home and the lights definitely aren't on
That is just my experience with it though. I'm sure it is different for others 
I was taken off Tegretol cold turkey after being on it for 3 years...I have to say the withdrawal was not a pleasant experience at all. The doc did start ramping me up on Triletpal but started at such a low does that it wasn't enough to counteract the withdrawal symptoms
As for trileptal working...I have the same "seizure control" at 600, 900 and 1200 mg. The difference for me is side-effects...the stuff knocks me for a loop. At 600 I can function as long as I take it only at night. At 900 it means taking 300 during the day...not so good, I start slowing down both cognitively and functionally. At 1200 I'm a zombie...I won't move from one spot for hours on end. Nobody's home and the lights definitely aren't on
That is just my experience with it though. I'm sure it is different for others
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Whoa... I hope it's different for me, too. I asked the doc for a drug that wouldn't blow my brain out of the water. If it does to me what it did to you, it may not work out. First I'm hoping just no rash. I'm tired of burning and itching.
Was just reading the side effects of Lamictal withdrawl. It sure explains why I feel so weepy and hopeless. Guess it's not just me feeling sorry for myself. It's the drug withdrawl. And just checked my pill box. I've been off for a little more than 24 hours, so have missed more than 1 dose so far.
Was just reading the side effects of Lamictal withdrawl. It sure explains why I feel so weepy and hopeless. Guess it's not just me feeling sorry for myself. It's the drug withdrawl. And just checked my pill box. I've been off for a little more than 24 hours, so have missed more than 1 dose so far.
Jan4you
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Again sweety.. each of us have our own experience. My allergic reaction made my MS worse to the point I needed to go into the hospital for IV steroids. That will NOT be your experience.
Trileptal immediately gave me a headach.. dizzy and made my already off balance worse to the point I was falling over. THAT is MY experience due to MS.
Again my husband had NO problems with Trileptal.
BUT I had to tell my neuroogist that I knew I was in withdrawal.. he seemed clueless and wanted to make sure I was not having some kind of infection before he admitted me into the hospital. I did not have an infection.. it was WITHDRAWAL!! Felt like a junkie must feel.. shaking and so cold..but it passed in about 1-2 days.
You are on your way.. to the BEST medication.
HUGS...Jan
Trileptal immediately gave me a headach.. dizzy and made my already off balance worse to the point I was falling over. THAT is MY experience due to MS.
Again my husband had NO problems with Trileptal.
BUT I had to tell my neuroogist that I knew I was in withdrawal.. he seemed clueless and wanted to make sure I was not having some kind of infection before he admitted me into the hospital. I did not have an infection.. it was WITHDRAWAL!! Felt like a junkie must feel.. shaking and so cold..but it passed in about 1-2 days.
You are on your way.. to the BEST medication.
HUGS...Jan
One way to look at it is that you may not need to take as much as me
My sister takes trileptal without the issues I have...sorry, meant to put that in there before.
I'm one of those "drug-sensitive" people...antibiotics will knock me out but local anethetics wear off quick and pain-killers like demerol and vicodin don't work on me. Makes absolutely no sense and freaks doctors out when I wake up in the middle of a local anesthetic, ROFL!
I'll wave my magic wand "BELIEVE IN THE DRUG...THE DRUG IS GOOD...THE DRUG WILL WORK"...voila!
My sister takes trileptal without the issues I have...sorry, meant to put that in there before.
I'm one of those "drug-sensitive" people...antibiotics will knock me out but local anethetics wear off quick and pain-killers like demerol and vicodin don't work on me. Makes absolutely no sense and freaks doctors out when I wake up in the middle of a local anesthetic, ROFL!
I'll wave my magic wand "BELIEVE IN THE DRUG...THE DRUG IS GOOD...THE DRUG WILL WORK"...voila!
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Even Keel
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Zoofemme, we are twins! I react to drugs in unusual ways, too. My epi didn't believe this at first, but after watching things for a couple of months he's on board with it now.
Antibiotics knock me out, I'm allergic to most of the good ones, too. Drugs that make most people tired make me hyper, and visa versa. The lowest possible dose of most drugs are more than enough to do the job at hand - too much just makes me sick. I get many of the highly unprobable side effects for many drugs. I'm the .01 percent. Nasty rashes and sometimes swelling and breathing problems in response to a medication is par for the course for me.
My big mystery - I don't get why local anesthetic for dental work doesn't work for me - it takes tons if it to numb me up, and it only lasts a few minutes.
Antibiotics knock me out, I'm allergic to most of the good ones, too. Drugs that make most people tired make me hyper, and visa versa. The lowest possible dose of most drugs are more than enough to do the job at hand - too much just makes me sick. I get many of the highly unprobable side effects for many drugs. I'm the .01 percent. Nasty rashes and sometimes swelling and breathing problems in response to a medication is par for the course for me.
My big mystery - I don't get why local anesthetic for dental work doesn't work for me - it takes tons if it to numb me up, and it only lasts a few minutes.
KARDSHARQUE
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Rash,but is it the lamictal?
I' was looking at stories and hoping that I could find answers to my itching problems. It seems all I found were Lamictal related issues. I've been on lamictal for over two years now. The itching problems I have started in the last couple of months. Lately my arms and hands have been itching terribly. Even my testicles at one point. As I sit here now my arms are itching terribly. I've tried all sorts of creams but with little or no help. I can go in the pool and it stops. I looked up side affects of new medacine I've been on for a couple of months. BINGO! One of the side affects of Vimpat is itching. It can also cause savere itching. Now I have to notify the dr. about his most recent trial and find out if I'll stay on it or continue it.
I' was looking at stories and hoping that I could find answers to my itching problems. It seems all I found were Lamictal related issues. I've been on lamictal for over two years now. The itching problems I have started in the last couple of months. Lately my arms and hands have been itching terribly. Even my testicles at one point. As I sit here now my arms are itching terribly. I've tried all sorts of creams but with little or no help. I can go in the pool and it stops. I looked up side affects of new medacine I've been on for a couple of months. BINGO! One of the side affects of Vimpat is itching. It can also cause savere itching. Now I have to notify the dr. about his most recent trial and find out if I'll stay on it or continue it.
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Even Keel
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Sorry to hear about your itching. It sounds miserable. Yes, have your doc look at it and see what he thinks. My epi also had a dermatologist look at mine. The dermatologist said it wasnt SJS, and prescribed a bunch of stuff to treat it. She said that eventually it might disappear. And what do you know, she was right. The rash is gone now. And I'm off all the antihistamines and steroid creams I was on to keep it under control. So there may be hope.
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We went to the ER with our son when he was 3, he had just started on Lamictal and got a rash. They diagnosed him having chicken pocs...
I've saved a link & picture a CWE member did post in 2009. Can't find the thread anymore but I found it in the links & files of our Dutch forum.
I saved the picture because the doubts and questions keep coming on our Dutch forum every once in a while from parents with kids on Lamictal who have a rash or itching.
This picture gives a good example of THE Lamictal rash.
With thanks to the member who posted it.
http://epilepsy.emedtv.com/lamictal/lamictal-rash.html
I've saved a link & picture a CWE member did post in 2009. Can't find the thread anymore but I found it in the links & files of our Dutch forum.
I saved the picture because the doubts and questions keep coming on our Dutch forum every once in a while from parents with kids on Lamictal who have a rash or itching.
This picture gives a good example of THE Lamictal rash.
With thanks to the member who posted it.
http://epilepsy.emedtv.com/lamictal/lamictal-rash.html
lamictal rash
I cannot find where to start a new thread anywhere on this site. So I am responding to an old thread here. My son has a dark purple rash on his back. At first glance it looks like he scraped his back on a bunch of rocks. Which is what I thought 2 months ago when he got it, but now I realize it is getting worse. Neurologist will not call back...thanks. Son is on 100 mg of lamictal for absence ep. How do I know if it is THE rash. I have been waiting for a doc to call back for 2 hours on a Friday. I could have scheduled a dermotologist by now. The rash does not itch, and is not raised at all. It is flat and takes up about 1 sq foot of his back. Anyone got experience with this?
I cannot find where to start a new thread anywhere on this site. So I am responding to an old thread here. My son has a dark purple rash on his back. At first glance it looks like he scraped his back on a bunch of rocks. Which is what I thought 2 months ago when he got it, but now I realize it is getting worse. Neurologist will not call back...thanks. Son is on 100 mg of lamictal for absence ep. How do I know if it is THE rash. I have been waiting for a doc to call back for 2 hours on a Friday. I could have scheduled a dermotologist by now. The rash does not itch, and is not raised at all. It is flat and takes up about 1 sq foot of his back. Anyone got experience with this?
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Hi Didisp --
Use the link below for info about posting a new thread:
http://www.coping-with-epilepsy.com/index.php?p=start
As for the rash -- there can be rashes associated with Lamictal which are not serious, but the only way to know for sure is to see a healthcare provider, whether your PCP, neurologist or dermatologist -- start with whoever will see you first.
Use the link below for info about posting a new thread:
http://www.coping-with-epilepsy.com/index.php?p=start
As for the rash -- there can be rashes associated with Lamictal which are not serious, but the only way to know for sure is to see a healthcare provider, whether your PCP, neurologist or dermatologist -- start with whoever will see you first.
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Even Keel
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Call a dermatologist. Tell them your son is on Lamictal and has a rash. They will make room for you that day. If they don't, go straight to your family doctor. He needs to be seen NOW. We aren't doctors and we can't make the diagnosis. The doctors can.
Most health care places, if you say "Lamictal" and "Rash" in the same sentance, they will see you immediately. They are afraid of Stevens Johnson syndrome, which is extremely serious and can be life threatening.
It sounds like your son has something else, but you can't take the chance. Go now, okay?
P.S. Don't listen to your doc when he says not to worry because your son has had it for awhile. I had a drug reaction rash for weeks/months before we finally got rid of it. At any time during that period it could have turned into Stevens Johnson syndrome so it had to be watched with an eagle eye. Longevity of rash is not the issue. What the rash looks like is how they will decide what it is.
Most health care places, if you say "Lamictal" and "Rash" in the same sentance, they will see you immediately. They are afraid of Stevens Johnson syndrome, which is extremely serious and can be life threatening.
It sounds like your son has something else, but you can't take the chance. Go now, okay?
P.S. Don't listen to your doc when he says not to worry because your son has had it for awhile. I had a drug reaction rash for weeks/months before we finally got rid of it. At any time during that period it could have turned into Stevens Johnson syndrome so it had to be watched with an eagle eye. Longevity of rash is not the issue. What the rash looks like is how they will decide what it is.
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