lamicital

[aboizd1]

I am supposed to start this med, well a week ago. and I can't bring myself to do it. Not with the side effects I have read about..nightmares, hair loss, acne, rashes...

I'm on topamax and only 125 mg. and I just don't think I need the "seizure control" my doc and neuro speak off...

I don't know what other people on aed's feel like, but lately i feel like a sick person, i wake up feeling tired and sick and just feel blah- so i think my med's aren't treating me right- but at least I have my hair and no awfulllll side effects...

What do I do???

 

[Crystal11]

If the neuro/doctor wants you to have better seizure control, that means the current meds you are on aren't doing the job. Consider the risks against the side-effects. Don't let what you have read scare you into never trying the medications. I just started Lamictal two weeks ago and even though I know what to look for, as far as allergic reactions, I don't let myself phsyc myself into worrying about these weirdo side-effects. Otherwise you will never be able to try any other med. All meds have their own side-effects and we all have to weigh the risks and the side-effects and how much control we want over our seizures.
How often do you seizures interfere with your life, work, schooling, daily life etc?
With Lamictal, you start off very very slowly to prevent any kind of reactions. Once you notice one- call in to the doctor or pharmacist and they can tell you the best plan. Most people get off of the med pretty quick if there is a serious side-effect.
With Tegretol XR taken alone, I became fearful of death that I would cry daily- I told my neuro this and she said "Don't stop the med or you will have more seizures." I listened to her- then realised that I cannot function like this anymore. I called back and was able to see her- she made a med change that day. So I am weiry or meds myself but understand that the neuro is trying to find that right combination to help control seizures- with the least amount of side-effects.
Talk to your doctor, let them know you are worried about the meds- or the pharmacist.

I am taking Keppra XR 3000mg, Tegretol XR 600mg and now the Lamictal 50mg and increasing. I will drop the Tegretol XR over time. So I worried about the meds- all of them, and taking them together and how it might effect me. I told myself to not worry- give it time, and once there is a problem- let someone know immediatly or go to the E.R. if its serious.

Hope you're able to get some answer and settle your fears and concerns. You are the one in control of what goes in your body- so you're definitly the one that knows your limits.

If you continue to feel sick, everyday- then your Topamax may need to be changed or reduced. The goal of the neuro is to get a med to control the seizures with the least amount of side-effect.

I hope you feel better soon
Crystal

 

[aboizd1]

Hi Crystal,

Thank you for your honest reply...thats very much what I need. I'm just very upset and at this point i think it's because I just don't know what to do-maybe because I'm not sure what my options are other then doing what I'm told.

What you say about being in control, and being able to call in and imediately deal with side effects does seem rational and safe..I just fear that taking more drugs --and then going off of the drugs if something happens--will cause me to have seizures!!
-because right now, and as it has always been, I don't have seizures frequently! I was diagnosed a year ago when I had 2 and since then I haven't had any, and I didn't have any before that either.

 

[PhylisFeinerJohnson]

Here's good news... First of all, only 3% of people trying Lamictal react with any adverse side effects. And here's the best part of all: at its lowest dose, Lamictal acts as an antideppresant...then at its next level, it's also an anti seizure med. So you get 2 in one.

Right now I take Lamictal (for the last 14 months) along with Klonopin and Effexxor XR. That's what works for me... Give it a shot.

 

[Nakamova]

Aboizd --

Did your doctor say why he wants you on Lamictal? If you have good seizure control right now (and it sounds like you do) then I agree that it seems odd to switch to a different drug, or add a second one to a drug that's already effective. Usually if you are medication-responsive (that is, if the first drug you're given after an initial seizure diagnosis gives you seizure control) then the usual protocol is to stay on that med/dosage for 2 to 5 years, and then consider tapering off. If that's your choice, see if you can hang on until the 2-year mark, and then taper off (with doctor-supervision ideally) extremely slowly, slower even than the recommended guidelines.

If you can't tolerate the Topomax because the side effects are bothering you, then it may be worth switching to a different drug. Despite all the side effects you've read about, Lamictal has a good record, better than many other AEDs. Yes, there are side effects, but they tend to go away as the body adjusts. I've been on Lamictal for over a year, and although I had some side effects for the first few months I was on it, most of them went away. The one side effect that still annoys me is that my middle distance vision gets blurry at different times a day. (It doesn't stay blurry; I still don't need glasses). I've been on Dilantin (which affected my gums) and on Zonegran (which affected my blood sugar and mood), and I can say that Lamictal is better than either of those. Not perfect, but better.

 

[aboizd1]

The idea behind adding the lamictal to the topamax, is to taper off of the topamax after christmas. My neuro thinks this will give me better "seizure control".

Topamax works in the sense that I don't have seizures-yet I don't have any anyways!! But I get leg cramps when I go to the 150 dose, and at 125 (current) I am always looking for more air to breathe...
For whatever reason-the neuro is determined that I should be on at least 150 mg (even though I'm fine on 125) and wants to switch the meds to see if the breathing thing changes.

Asides side effects, it seems that I'm fine on low doses as long as I look after myself?

I appreciate all of your guys honesty of your experience-not sure what I'm going to do-

 

[Nakamova]

It can be strange when your neurologist seems to have an agenda that has nothing to do with what you are actually experiencing. If you have seizure control at the lower dose of the Topomax, and the side effects are tolerable, then there is no reason to make any changes. Period.

When I was tapering onto Lamictal, my neurologist insisted that I needed to go up to at least 300mg, and maybe even higher. I stopped at 250mg, and she had a fit (so to speak ), and told me I was going to have a seizure if I didn't up my dose. That was well over a year ago. No seizures in that time -- I actually tapered down to 200mg and have been seizure-free at that dose for 15 months. Sometimes it pays to be stubborn.

 

[rhiz]

Personally, I was on Lamictal/Lamotrigine for 2 years and didn't have any side-effects other than tiredness at first.

Although, my seizures got worse, everyone's different though!

 

[occb]

I had heard that lamictal doesn't effectively help seizures unless at a much higher dose than that. My partner is on gen-lamotrigine at 200/day for a diagnosis of bipolar II, and, until recently, it did wonders for him (the change in effectiveness might be due to the switch in generics companies). We were scared to try it at first, but it's probably the most pleasant med he's been on in years.

 

[Nakamova]

There are people at both ends of the Lamictal curve. 200mg Lamictal per day works fine for me, but some people need quite a bit more. In my case, my neurologist ignored the fact that I tend to do fine with lower doses (I had seizure control with 100mg per day when I was on Dilantin), and wanted me to be at a higher dose. I told her I understood the potential consequences of not starting at that dose, but that I was comfortable with my decision to stay at 250mg (and eventually down to 200mg). I didn't expect her to agree with me, but I did hope she would respect my decision, and not lay on the negativity. But she kept saying that I was going to have a seizure. I've proven her wrong, but she won't acknowledge it.

 

[Cinnabar]

I never thought I'd say I'm a fan of any given medication. But Lamictal has done wonders for me. I'm on 350 mgs a day along with Clonopin which has anti-seizure properties.

Lamictal also treats Bi-Polar Disorder which I have so it's acting as a double duty med for me.

One warning: If you take to heafty a mg dosage, it can induce a seizure.

 

[Rach_nc1984]

I wish I could be on such low doses as you guys...I am currently taking 600mg a day of lamictal and 2000 mg of keppra xr a day. I definitely notice the difference if i take less Lamictal (I tried taking 400...had more seizures so went to 500 and lad less but still having some) Whenever I have a seizure now it is due to forgetting my meds, specifically the lamictal since it is not xr like the keppra. I have heard that there is a lamictal xr available now, so when I finally get a neuro I will ask for that. Hell, maybe I wont need as much on the xr. I hope so. I don't like being at such high doses, but it does help me and keeps me from having seizures at work (which would be very dangerous because sometimes I have to go on ladders and lift heavy things) Anyways, I dont have any side effects with the lamictal and I think you should listen to your doctor. Your neuro apparently has a reason for switching to lamictal. With shortness of breath I think I would be happy to get off that med. Anyway, the final descision is yours, but if you dont at least try then you will never know right?? Better to try a new med rather than telling your neuro you aren't taking it and him/her putting you on something really shitty like phenobarbital..eww