Meds losing effectiveness -- can this be happening

[Blondie47]

Hi---
My daughter, 14, had multifocal epilepsy, with occiptal lobe and frontal lobe partial seizures.

We are currently ramping up on Lamictal --at 100 mg now.

Reason being, our Trileptal (1350mg daily) is losing it's effectiveness at occipital seizure control. Control is reduced on the frontal's as well.

We have been on it for a year now and had great control for 7 months and then began a downward spiral. The neurologist added Zonegran, side effects were awful, 20 lb weight loss, no appetite, depression too. Not much seizure control either.

Then we slowly removed it, and added diamox. Well the diamox increased the seizure activity. It was slowly removed.

Now Lamictal has been added and still seizure control is digressing. The treatment plan is to use Ativan (.5mg tabs) (1 and 1/2 tabs and then 1 tab if no control after 1-2 hours) to stop and clustering or multi seizures.

Well -- that takes her out of school, and groggy all day. Funny the seizures come back after it wears off. Quality of life is poor.

taking it one day at a time for now -- when does the lamictal kick in?

Anyone with occipital, frontal lobe seizures had any success with it?

Thanks so much

[Nakamova]

Lamictal has a wide ranging therapeutic dosage. Basically the ideal dose is wahtever works for a given individual. Lamictal can work at a relatively low dose like 175mg/day (as in my case), but folks also take it at 600mg/day and up. Unfortunately you need to ramp up very slowly on Lamictal in order to limit the chance for serious side effects (like the allergy/rash). So hang in there! The seizure control may kick in once you get to 300mg.

[PhylisFeinerJohnson]

As far as meds losing their effectiveness over time, my body has been acclimated to different drugs and they seem to lose their punch. So then it's time to move on to something else. Those ole' bodies of ours. They have a life of their own!

Nakamova is quite right about not ramping up the Lamictal too fast. But, from my point of view, it's worth the wait. It works wonderfully for me. (Whew.)

[Crystal11]

I have been increasing my Lamictal which is added to Keppra XR 3000mg, Tegretol XR 400mg (totally stopped two days ago) yay, and now we added Lamictal 400mg a day. I have complex partial seizures probably from the temportal lobe.
My Tegretol XR 600mg being used for the last 5 years for some reason has stopped working as well. I have more seizure control than before, with up to 20 smaller complex partials a day (45sec) to 1-2 longer 3min complex partials per month. Sometimes I have all of these during on month- I feel like I'm in a constant seizure making college classes hard. EMS being called out, and 4hr borrow stays in the ER.
Anyway- medication definitley can ware off- my heart medication Toprol had to be changed for this very reason. Now on Propranolol 40mg PRN.
Definitley write down any allergy or any note on all of the meds tried and which ones aren't working so well.
Neuros try to get a med or two to control seizures the best possible.
For me, I will never have full control over my seizures. Born three months early, I've had mild Absence-like seizures since age 6. They were probably complex partial seizures the whole time.
Medication wasn't started until I was 13 due to parent fear of meds.

Sometimes other treatments are considered to help seizure control.
I am sorry for the struggle going on and I hope it gets better soon, more control, and better quality of life.
When quality of life is getting worse- usually its when possible surgery or other treatment is considered.
I just discussed surgery myself- don't think I will do it until things are totally out of control. But its getting better with the Lamictal.

Please take care,
Crystal

[Blondie47]

thanks for your replies!!!!

I called the neurologist today and he is removing the lamictal, and ativan.
Both cold turkey. Weird not to ramp down on lamictal but he says it is ok. A drug called clonipin will substitute for ativan and we will continue our course with Trileptal.

He says that ativan does not work well in some people.....also he feels that the lamictal may be the culprit behind the increase in seizures or something else unknown is triggering them.

By dropping the lamictal he feels we will see if the seizures reduce or increase and then we will have an idea of the cause here!

Praying that lamictal is the cause --

[Nakamova]

To me, quitting an anti-epileptic drug cold turkey is never a good idea unless there is a life-threatening rash. I hope your doc knows what he's doing. You might want to check out this link:

http://www.lamictalanticonvulsant.com/withdrawal.html

[Endless]

Blondie, I am in the process of going off a low dose of lamictal cold turkey. I didn't have a choice - I got a rash while ramping up my dose.

The withdrawl is doing weird stuff to my blood pressure (way low - last hour 88/62), heart rate (way high - right now 109 resting in bed), vision (wavy like i'm underwater), energy (can't get out of bed). Oddly enough, I haven't had a seizure yesterday or today, and I usually have 2-3 daily at least. Must be random variation. All I know is my body is very unhappy right now.

Be careful.

[PhylisFeinerJohnson]

The only thing encouraging that I have to say is that Klonopin is a good adjunct therapy and works well for me. But so does Lamictal.

[Blondie47]

thanks--worried....

Her daily lamictal dose was 75mg. And we had just upped it by 25mg to 100mg for only two doses. Perhaps the dose was low enough not to cause any dangerous effects from withdrawal. I will keep a close watch on her!!!!

She awoke to occipital seizures(seeing spots) that were worse than the day before. I gave her the .5mg Klonpin. She is out of it totally -- not sure if school is an option today. But the spots are gone. Going to get her up and moving around to see how she is able to handle things.

We are to report our results next week or sooner.

Thanks so much friends for your support and advice!

[Endless]

How is your daughter today?

How are YOU holding up?

[Blondie47]

endless

she is less groggy and guess what the spots are back -- not as frequent but back. uggh


made a phone call to a neurofeedback provider -- researching alternatives now.

how r u -- better I hope -- is the rash gone?

[nightfighter]

For some people it makes no difference,but have you tried generic vs. brandname.Me personally it makes such a big difference it is like an entirely a diff. med all together.Brand name is the only thing that works for me with all my meds.It is more expensive but vital for me.The pharmacist will do their best to try and convince you that there is absolutely no difference between the two.I guaranty you this is not the truth.The main active ingredient is the same,but the issue is the fillers that are different.

[PhylisFeinerJohnson]

With most medications, there’s only a subtle change between a brand-name drug and a generic. And usually, the two drugs can be switched without any side effects.

However, with anti-epileptic drugs, there can be as much as a 20% difference between the absorption and metabolization of the drugs. Which can effect seizure control and even lead to breakthrough seizures.

[Blondie47]

Yes -- I did read that in my research! She was on generic, and I switched her over to brand name two weeks ago.

Thanks so much

[behlen]

I have been on Lamictal about 6 weeks now. First few weeks I was seizure free and excited to find a drug that worked after keppra failed me. After a few weeks seizures came back, I just increased dosage to 400mg hoping this will work.

[occb]

It's good to hear it's not just nightfighter who has about one wek of goodness and followed by suck on lamictal/lamotrigine. I was worried that maybe something else was going on.