Questions about Lamictal

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Questions about Lamictal

Postby jmo81 on September 22nd, 2011, 2:00 am

Hi, this is my first time posting here.
I was recently prescribed Lamotrigine (Lamictal) for my twitching and I am nervous and scared to take it due to the possible rash side effects. I know a few people have taken it on this forum and has proven itself helpful. One of my concerns with taking it is if I get a rash and I stop taking the drug promptly will the rash go away? I have also read that the dosage is supposed to start off very small, approx 25mg and then you slowly ramp up the dosage. My doctor prescribed 100mg for me to start off and wanted me to double it after a week. Does this sound like too much too fast? I know the rash can occur if you ramp up with the drug too fast. If the people that have taken this drug give me their comments both good and bad about the drug, I would really appreciate it.

Here is a brief history of my BFS adventures:

I have had BFS for a little over 3 years. I believe it all started around the time I was exercising heavily. I am not sure of the intense workouts provoked the fasciculation's or the supplements I was taking at the time ( protien shakes, NO-XPLODE, Afterglow). It started on day with my eye twitching nonstop. It went on with just my eye twitching for about 3 days and then spread throughout my body. I made a doctors appointment and he just told me to take tonic water because it has quinine in it. That unfortunately did nothing at all except taste horrible. I was lucky not to get the the conditions of ALS and MS stuck in my mind. I came across this website and there were people having the same issue as I was. My twitches happen everywhere. Thankfully I do not have any pins / needle sensation or pain. My muscles seem to go crazy anytime I stretch or they just start twitching if I'm sitting still. Below I listed the medications I have tried without any help.


Prescribed medicine:
Lexapro - Anxiety / Antidepressant
Lyrica - Relieve neuropathic pain / seizure
Mirapex - Helps treat symptom of Parkinson's / Muscle control
Metanx - dietary management of endothelial dysfunction in patients with diabetic peripheral neuropathy

Vitamins:
Magnesium
Potassium
Calcium
Zinc
Niacin 500mg
D-3 2000IU
UltraMag

Herbal / Other:
Skullcap
KavaKava
Passion Flower
HTP-5
GABA
AllRich Garlic
Antioxidant
Valerian Root
Phenibut
Inositol Powder
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Re: Questions about Lamictal

Postby chrissi on September 22nd, 2011, 2:09 am

Hi jmo,
I did not get lamictal but tegretol and had the allergic reaction from it. In case u should develop a rash you have to stop taking the meds and call your doctor. If it is not that bad just must stay off the pills and the rash will go away (will take some days), if it is really bad and you get other allergic symptoms like I had, you will get cortizone which works really fast.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
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Re: Questions about Lamictal

Postby RandyR on September 22nd, 2011, 12:44 pm

I was told by my doc that the rash would go away as soon as you stop taking the meds. The reason it got so bad on some people is in the begaining they(doctors) had no idea it was coming from the lamictal. If you keep taking it it gets bad, but he said as soon as the rash pops up to stop the med and it will clear right up. Thats why they start at a low dose and work you up....

He also said it is very rare with lamictal and one would have a better chance with the tregatrol....

Give it a shot, I'm trying to get put on lamictal myself...
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Re: Questions about Lamictal

Postby raindog on September 22nd, 2011, 2:45 pm

jmo81 wrote:Hi, this is my first time posting here.
I was recently prescribed Lamotrigine (Lamictal) for my twitching and I am nervous and scared to take it due to the possible rash side effects. I know a few people have taken it on this forum and has proven itself helpful. One of my concerns with taking it is if I get a rash and I stop taking the drug promptly will the rash go away? I have also read that the dosage is supposed to start off very small, approx 25mg and then you slowly ramp up the dosage. My doctor prescribed 100mg for me to start off and wanted me to double it after a week. Does this sound like too much too fast? I know the rash can occur if you ramp up with the drug too fast. If the people that have taken this drug give me their comments both good and bad about the drug, I would really appreciate it.

Here is a brief history of my BFS adventures:

I have had BFS for a little over 3 years. I believe it all started around the time I was exercising heavily. I am not sure of the intense workouts provoked the fasciculation's or the supplements I was taking at the time ( protien shakes, NO-XPLODE, Afterglow). It started on day with my eye twitching nonstop. It went on with just my eye twitching for about 3 days and then spread throughout my body. I made a doctors appointment and he just told me to take tonic water because it has quinine in it. That unfortunately did nothing at all except taste horrible. I was lucky not to get the the conditions of ALS and MS stuck in my mind. I came across this website and there were people having the same issue as I was. My twitches happen everywhere. Thankfully I do not have any pins / needle sensation or pain. My muscles seem to go crazy anytime I stretch or they just start twitching if I'm sitting still. Below I listed the medications I have tried without any help.


Prescribed medicine:
Lexapro - Anxiety / Antidepressant
Lyrica - Relieve neuropathic pain / seizure
Mirapex - Helps treat symptom of Parkinson's / Muscle control
Metanx - dietary management of endothelial dysfunction in patients with diabetic peripheral neuropathy

Vitamins:
Magnesium
Potassium
Calcium
Zinc
Niacin 500mg
D-3 2000IU
UltraMag

Herbal / Other:
Skullcap
KavaKava
Passion Flower
HTP-5
GABA
AllRich Garlic
Antioxidant
Valerian Root
Phenibut
Inositol Powder



Give it a go or you'll never know. I had a bad time with Diamox (acetazolamide) but as a back up my neuro put down Lamotrigine as an alternative med, unfortunately when he took me off the Diamox he forgot to prescribe the Lamotrigine.

Keep us informed if you go ahead as ive got shut of most of the pain, cramping, stiffness and fatigue with LDN but i still get the twitching to some extent , so if i got a med that reduced that i'd be completely cured. :D
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Re: Questions about Lamictal

Postby Richard on September 22nd, 2011, 10:31 pm

I took both Lamictal and Tegretol. Neither one did anything for me. But that doesn't mean they won't work for you.

BFS is a basket of conditions and everyone's body is different. That is why I get frustrated when people dis other people's cures. But I digress.

I was told the same thing as others posted. If you get the rash you will definitely know it. Immediately stop taking the med and call your Dr.

I don't believe the rash is deadly if it is stopped immediately.

Oh and by the way don't go crazy thinking about every little itch. I was told if you had the rash you would definitely know it. This certainly seemed to be the case for Chrissi.

One final item. One of the meds I took, I forget which one, made me feel really out of it. Like I was drunk. I think it was actually dangerous for me to drive! It went away after 1-2 weeks. But be careful.

As I told Chrissi, read the directions and talk to the pharamcists. But don't go crazy looking for side effects. Easier said than done. But still good advise IMO.
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Re: Questions about Lamictal

Postby chrissi on September 23rd, 2011, 2:07 am

Oh, you DEFINATELY would know if you got that rush...for me it started with the feeling of little needles all over (like I had been working with glass wool you use for isolating your house), and then the rash started on my neck/back and spread all over the body within a few hours, and is was CLEARLY visible.
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Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Questions about Lamictal

Postby jmo81 on September 24th, 2011, 1:12 am

Thank you all so much for the replies. I do feel better about trying it. My only concern is the dosage still. The doctor wants me to start off by taking 100mg at night, then after 1 week up it to 200mg. it seems like a lot to start off on and a quick ramp up. Im going to call the doctors office tomorrow about it. I've heard they give starter packs out for Lamictal that start off at 25mg dosages. I will let you all know how it works.. Thanks again
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Re: Questions about Lamictal

Postby msm on September 25th, 2011, 4:21 am

Hi I have been taking lamictal and started out very slowly at 25mg every two weeks. It has worked very well for me so I am very lucky. I have sent you a pm which provides more detail of my usage of it, but used correctly it can be very successful for some people and have little to no side effects. My doctor did warn me about a possible rash, Steven Johnson syndrome, but also said that any drug could cause it so I was not to worried about it. I think the key is to titrate up slowly though. Please check your pm's for further information and let me know if you have any questions.

Mary
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Re: Questions about Lamictal

Postby dreadpirateroberts on September 30th, 2011, 11:45 am

I just finished ramping up on Lamictal, starting with 1 50 mg per day for a week then 2 50mg per day for a week, etc. until now at 100 mg twice a day. I didn't get the "kit" as my insurance wouldn't pay for it, but instead cut 100 mg pills. It seems to be having some beneficial effect, though perhaps its just that sufficient time has passed (2 1/2 years plus) that I am getting so used to it!. IMO I wouldn't start at that high dose. You can always cut the pills and go with lower dose and ramp up on your own. I think that the rash risk is much greater in children. My neuro didn't even mention it to me so I am assuming he didn't think anything about the chance of a rash, though I did my homework.

As an aside, I have also tried all those supplements and more without any effect. Also I have tried without success: phenoytin, neurontin, tegretol and diltiazem. Meds with some success: clonazepam and baclofen (for cramping).

Good luck!
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Re: Questions about Lamictal

Postby jmo81 on October 1st, 2011, 3:16 pm

dreadpirateroberts wrote:I just finished ramping up on Lamictal, starting with 1 50 mg per day for a week then 2 50mg per day for a week, etc. until now at 100 mg twice a day. I didn't get the "kit" as my insurance wouldn't pay for it, but instead cut 100 mg pills. It seems to be having some beneficial effect, though perhaps its just that sufficient time has passed (2 1/2 years plus) that I am getting so used to it!. IMO I wouldn't start at that high dose. You can always cut the pills and go with lower dose and ramp up on your own. I think that the rash risk is much greater in children. My neuro didn't even mention it to me so I am assuming he didn't think anything about the chance of a rash, though I did my homework.

As an aside, I have also tried all those supplements and more without any effect. Also I have tried without success: phenoytin, neurontin, tegretol and diltiazem. Meds with some success: clonazepam and baclofen (for cramping).

Good luck!


Excellent Idea!! I called my doctor (the one who perscribed the lamictal to me) about the dosage and all he did was refer me to a Nero and said to keep up w/ my regular dosage. I have a friend who is a nurse and she said that the dosage is based on age an weight, as with most medicines, and I should be ok with the 100mg... but im not going to risk it. Cutting the pill is a good idea!
Glad to hear that it is working for you! Keep us all posted!
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Re: Questions about Lamictal

Postby Barbie800 on October 2nd, 2011, 2:58 pm

I assume your talking about Johnsons Syndrome? You can even get that from Motrin or Tylenol. Read the label. Anyway, give it a try. If you get the rash stop and call the doctor just like the other poster said. Some people have had great success on Lamictal.
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Re: Questions about Lamictal

Postby harryb3 on November 21st, 2013, 10:37 pm

I was just prescribe Lamictal today, we are starting at 25mg for the first week, then 50mg second, then 75mg third. The low dosage is to make sure, I'm not I don't get the rash or all the other side effects. I'll let everyone know how I make out. My neuro was very familiar with this medicine not for my condition though , she said that it also good for anxiety and depression. I'm currently taking Amitriptyline 10mg each night for sleeping (I think it starting to wear off), but also taking Clonezapam for my flare ups. The Clonezapam seems to setting the nerves, but like a lot of other people, I'm little scared to get addicted, so I use only when I need it. Other items about Lamictal it can cause drowsiness and my neruo said it is very easy to come off, since you want to. Again, I'll let everyone know what my results are. Here to hoping for a good night life and some relief in the next couple of weeks.
Harry

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Re: Questions about Lamictal

Postby harryb3 on December 4th, 2013, 6:23 pm

Just wanted to give everyone an update. I tried the Lamictal and it worked great for the 4 days literally no twitches or none that I cared about. The fifth day, I notice my legs felt like they were sunburnt, but took it again that night and then the next day it felt like my whole body was sunburnt. I stopped taking it. I'm going to try Lexapro again and just see if this is all anxiety based or not. If that doesn't work, I'll try the Tegretol and see if that helps.
Harry

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Re: Questions about Lamictal

Postby jmo81 on December 12th, 2013, 12:44 am

Sorry to hear that the lamictal didn't work for you. I unfortunately didn't have any luck with it either. Since my original post, I haven't tried any new prescription medicines. I am interested to hear how Tegretol works out for you though. I want to try it but my dad was on it at one point (not related to BFS) and had a similar reaction to what the Lamictal did to you. Don't know if reactions to meds can be genetic or not... To the point where I'll try anything though.

Best of luck to you! and let us know how the lexapro and/or Tegretol works!
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Re: Questions about Lamictal

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