I have been on lamictal for 2 weeks, I am still in the lowest dose. The results have been phenomanal (sp?) I was having several sp/cp sz everyday on my Zonegran, even after upping the dose. I have seen mixed responses to Lamictal? What have your experiences been? I am hoping this works. If it does not, then we are going to start looking into surgery. The idea of a sleep depreived EEG to try and start seizures as well as hearing the sound of my skull being cut open (sorry to be morbid) is more than I can really handle. At my last appt. dr said that the prognosis is not good if this doesn't work. His experience with MTS is that after the first 2 meds stop working the condition is then considered intractable and other options need to be looked at. Anyway, thanks for listening. let me know how lamictal has worked for you.

------------------
No one can make you
feel inferior, without
your consent. ~
Eleanor Roosevelt

Hi Homer! Sorry, I don't have answers, just questions...you get the partials & not the grand mals? And Lamictal works?

I get to do the sleep-deprived EEG next Friday for possible TLE...as far as I can tell, daily sp/cp & no grand mals. Topamax works ok but makes me tired & stupid...any suggestions on what to try next?

Hi saxgirl,

I have only had 2 tonic-clonic. One when the MTS was diagnosed and one when I was almost 7 mos. pregnant and the Zonegran was not being properly processed. The first was July 2001, second April 2002. I have partials since I was 16. Thought they were just panic attacks. At least I know now that I am not crazy! http://www.healthboards.com/ubb/dizzy.gif I have only been on the lamictal for two weeks. I am on the lowest dose. Sunday I start with the double dose for 2 weeks. And then double it again. I see my dr. at the end ofthis month. I am hoping the drug keeps working. Hearing "the prognosis is not good" last month is more than I really wanted to hear. The Zonegran worked well until this spring, at the lowest possible dose. The side effects were just more than I could handle as we upped the doseage. I felt as though I was always drunk. Not good when you are a teacher. I'll let you know how the lamictal is doing.

Good luck with your EEG. That is one of the things that I am terrified of. Let me know how it goes.

Trina

------------------
No one can make you
feel inferior, without
your consent. ~
Eleanor Roosevelt

Lizzb,
I have some time before surgery becomes an option. Just a scary thought right now. My husband's opinion is that the risks are outweighed by the benefits. http://www.healthboards.com/ubb/rolleyes.gif That, of course is from the outside looking in. The idea of being able to teach, without that panic setting in http://www.healthboards.com/ubb/eek.gif when I feel a sp coming on, does sometimes seems appealing. My md. is going to hook me up with some people in my area who have gone through with the surgery as a sounding board. For the time being, let's see how the lamictal does.

Hi Homer,
To me Lamictal is a miracle drug. I have been on it for at least six months. I take 200mg in the AM and 200mg at night. I also take Carbatrol. My thinking is much clearer and my seizures are under much better control. I have partial seizures that advance to grand mals. So far, the last two seizures have not advanced to grand mals....I only seize on my right side. I wish you luck. Kathy

5 years ago my son was 17 and had grand mal seizures as well as partials (dizzy spells) and auras which were also considered seizures. He went on a double blind study with Glaxo-Welcome of either Depacote or Lamictal. Very soon into the study we figured out that he was on Lamictal. Of course, the doctor did not know what medication he was taking either until the 9 month study was over. After that, Glaxo notified the doctor which medication my son was taking. They started at 25mg and ended up at a therapeutic level of 200mg 2X daily. He's been on this dosage all this time and without any side effects. This is the only medication he has ever been on. He decided that he would try halfing the dosage and found out in a couple of days that he could have another seizure. So, he does not miss his meds ever.

Before he was diagnosed at 17, he went to a hospital and they put 23 electrodes on his head for 8 days under a camera, hoping that he would have a seizure. It didn't work but they did get documentation of recorded waves when he was near one. He then got hooked up to 13 electrodes and took home a computer. We were successfull to get a seizure on that plus home videos. They do not know the cause or how they happen, even from this kind of exploring that does help some people and tells where the seizure begins and end. The doctor did not find an area that he thought could be operated on so that the seizures would possibly be eliminated. Make sure that your doctor uses this option before he thinks he should operate. My son has been very fortunate. He is able to drive and runs a computer store.

I have observed with people who are on many medications for seizures and maxed out to the point that they cannot function without assisted helpers, they hesitate to change medications because it is so risky & everyone around would prefer for the person with the seizures to just be happy like they are. Sad to say, these people are not functional in their life and unless family advocates & supports for them to try another medication, some healthcare workers would rather skirt around it and not risk the possible dangerous seizures that could come out of changing medications as well as risking the possibility that this person might very well get functional and not need the services that employ caregivers and services from facilities who offer services for these individuals.

I have watched this happen and the doctor which is the primary care physician said that the patient was maxed out on the medication and needed a change. The neurologist said that they would up the amperage of the little divice in his chest that he swipes a magnet over so that it activates it and the beginning of a seizure is stopped. Well, that's nice for everyone but the patient. This patient is still dysfunctional and dependent on everyone because is STILL maxed out on the 4 medications that he's been on for a very long time and making him slow to speak and incapable of independent living which doesn't make it very good for this person. I see that this person could possibly take a chance and try this medication with the support of the people around him. Yes, it's risky and switching meds is life threatening due to the risk of a possible seizure. Since this person has had the same kind of seizures that my son had, I think it's worth a try, but no one else sees this situation yet like I do, but time will tell. Medications are changing fast and more effective. They see the neurologist as a smart doctor (which he is) that looks after the best interest of his patient. Is that true or is the primary care physician right too for think that he's maxed out on his medication and needs a change? People who are disabled surely need supportive parents or family members as well as advocates that will watch out and speak up for these disabled people (or) the system will trap these people and lock them into their facility or program services because they want them to stay just the way they are, not having seizures but being maxed out on so much medication that normal functioning in daily functions as well as independence is impossible for this person with epilepsy without paid assistance around the clock. This situation is good for everyone but the patient who is in a way trapped around people who either don't speak up or are ignorant to the real situation that exists.

Lamictal is a pretty good drug, however people tend to gain alot of weight with it.

I would look into another doctor before I opted for surgery... just my opinion.

Good luck in your decision.

Hi,
When I tried lamictal for my absence (petit mal) and complex partial sz. I was only on the drug for 4 days because I broke out with a rash that itched like crazy. I don't mean to scare you but if you should notice any tiny red spots on your skin that look like a little pimple that is the first sign of the rash. I broke out with the rash around my neck and down my back. I had to see a dermatologist who gave me 3 creams to put on my skin and it took 2 months for the rash to clear up. I also went off lamicatal and was put on neurontin which is working great.
If you are looking into surgery I've had brain surgery done twice to help reduce my sz. I had a video e.e.g. where the Dr. placed 7 electrodes directly on my brain and I was on camera around the clock for 1 wk. and later I had ultrasound brain surgery where I had to stay awake in the operating room. Since my last surgery they have come out with gamma knife surgery which is the safest form of brain surgery because you don't have to cut into the patients skull and if all goes well you can go home 1-2 days after surgery and back to work with no problems. I'm looking into having this form of surgery done this summer.
Here's wishing you only the best of luck and May God Bless You!

Sue

Hi Sue,
Thanks for your response. I have been on the lamictal for 4 weeks now without any rash. I guess we took the increases at a slow enough pace and luckily I had no reactions. I have not read up on the gamma knife procedure yet, thanks for mentioning it. I hope we won't have to go that route, the meds are working well, so far anyway. Good luck!

Trina

Hello...I am starting to take Lamictal today...I have been on Dilantin and feel exhausted all the time, as well as dizzy and nauseated. They are slowly taking me off the Dilantin while building up the Lamictal. It will be interesting to see how it goes, I hated the way the Dilantin made me feel.

Hello. I just started lactimal this week. I have been doing well so far but have been experiencing nasuea in the morning really bad is this a problem .. is it common with this drug? What should I look for other than the rash? Is it true that people gain a lot of weight on this drug? Please give me any advice you can .. thanks---Stephanie

Hi,
I have been on Lamictal,for about 3 years now,no problems.
Garry

Hi All,

Can someone tell me what the rash looks like? Jake went on Lamictol Friday. We will not see therapeutic levels until mid Sept. however. We will be transitioning from Dilantin and Tegratol, hoping that he can tolerate the Lamictol as an adjacent therapy to the Trileptol. Right now he's taking it 2mlg daily only to see if there's a reaction.

Lizz, I'm glad to hear that there are others on the board using this combo. Let me know if there is anything that we should watch for other then the rash and a bit of weight gain.

As always thanks for the help!! http://www.healthboards.com/ubb/smile.gif

Lisa and Jake

I am on my 3rd week of Lamictal which is 25 mg/day - we're going slowly. I felt an aura last week as I skipped a dose of my other drug but no seizure! I have complex partial - my normal sz is an absense mal (I can't hear anything nor speak and look paranoid). This can stem into a grand mal but that has been under control for a long time, thank God. We plan to taper me off of Mysoline as I'm always tired plus this causes bad thoughts around that time which makes me sad/cry for no reason. I should also be able to think clearer and removing Mysoline should help me with my memory.

I'd get a few more opinions before going thru with someone foolin' with my brain.


[This message has been edited by giupset (edited 07-16-2003).]

Thank you everyone for your advice and input. So far so good. It has been 3 weeks since my last sz. I will be on my full dose, 200 mg, next week. Considering on my Zonegran I was having several a day and feeling drunk in the mean time, the Lamictal has done wonders.
About the rash, from what I know there is a bumpy rash that spreads quite rapidly. It is usually found on the torso. I was told that if not treated at the first sign it could take a hospital stay to clear up. But, I was told that I would not have any question if one were to appear.

Thanks again everyone.