[theoneRogue420]

Hi e1 I am pretty new to E, so I mainly just read the posts, I rarely post. I've learned quite a bit from you all and your links, so thanks mucho!

I have been on Phenytoin (Dilantin) since first being diagnosed. It has completely stopped all the full body floppy-croppy seizures, I only have the little "nod off" ones now, which I am fine with as I don't often drive nor do I work.

However, I have other health issues, such as rsd/crpsII and aids. I am about to have to go back on aids meds, which I don't want to do but have NO choice.

I got a call from the dr.s office yesterday. It turns out that I can't take Phenytoin and aids meds together, they have too many interactions. So, they are switching me to Lamictal. I have read all I can online about it. What I really need is advice from real folks who have taken this stuff, lol.

If any of you have taken it, please see if you can answer. The most important thing for me to know is whether or not you have found Lamictal to cause any issues with nerves or muscles. I read that it can cause a hypersensitivity issue, which is my main concern.

My rsd/crpsII is chronic, and my pain level is through the roof. I have been off the aids meds because they exacerbate the sx horribly. I am only willing to go back on them now, because it is a matter of life and death. But if the aids meds cause more sx, and then Lamictal does too, then there is just NO way I could handle it. The dr.s would have to come up with a different solution.

So I truly need to know what you all think of Lamictal. If the majority of peeps who have tried it have the hypersensitivity side effect, then I can't afford to even try it. I don't want to waste months changing/adjusting a medicine that in the long run won't work for me.

Thanks in advance for any help you can offer.

[peppermint1]

Hi theoneRogue420 ~
It sure sounds like you have a lot going on. Pleas know that I'll be thinking about you and wishing you well.

I took Lamictal for a long time and did fine with very few poor side effects. I started out with the standard low dosage that was increased slowly and steadily.

But there are very few meds that I haven't taken and I did OK, not good, but OK, on most of them. And none of them did me any good - lol - so I'm a very poor judge.

Wishing you well - and better answers.

[Hippyhair]

I didn't know you had ep too! Me too! (plus RSD)
I don't have the answer about your meds, sorry, I just wanted to do a shout out. I am on tegretol, 3x day and it works a little bit, not totally. I still drink coffee from a sippy cup...ha ha

[Porkette]

Hi Rogue,
I took lamictal for only 4 days and I had to go off the drug because it caused me to break out with a rash. A few others have stated that they also got the rash. While you're on the lamictal if your skin begins to itch and you notice tiny bumps on your skin that look like little pimples along with that area of your skin being red that's the first sign of the rash. I had to see a dermotologist (skin specialist) who did a biopsy on me and found out I was allergic to the drug. I was also told not to use any soap but dove for sensitive skin and no shampoo, perfumes, or anything with a scent because it can make the rash worse. Also I had to use lukewarm water the bath because the hotter the water the faster the rash will spread. I was given to streoid creams to help clear the rash and stop the itching. It took about 4 months for the entire rash to clear up. I went back on tegretol xr only to find out that I was allergic to that AED along with trileptal also.
What you might want to do is ask your Dr. to do a DNA test on you and from that they can tell what AED (sz. med) would help you the most. Here's wishing you well and May God Bless You!

Sue

[Darlene]

I too was on Dilantin for many years, but when I started going to a new neurologist he switched me to Lamital. I have had good resluts it. My seizures are under better controlled and a lot shorter. I don't have many side-effects with it that I can't live with.

Good luck.

Darlene

[theoneRogue420]

So far, so good! I have been taking the Lamictal for two weeks now, just took my first "2 doses a day" today.

I had a rash appear for about three hours one day, and then it went away. It was quite odd, I've never had one like that before. It was only on my arms, too. So I have no idea if it was a result of the meds or not, didn't hang around long enough for me to tell, lol.

I can't wait to start titrating off the phenytoin! I'm hoping my brain will kick back in a bit, I am mighty sick of being stooopid, lol.

[lor]

I've been taking Lamictal since 2000. It controls my GMs (tonic-clonic). But if you got that little rash & even though it didn't last, maybe you should have it looked into.

[theoneRogue420]

Thanks Lor, will do! I see the dr. again in two weeks.