Breakthrough seizures

[antecee]

Call me a cynic, but I think the reason so many of us have breakthroughs is because no one, not even the top neurologists in the world, know enough about epilepsy to figure out how to get seizures fully under control. Epilepsy is so evasive. That's why so many of us have been on the medication merry-go-round since our first diagnosis. I think our neurologists are as much in the dark as we are as to what will "work" for us and will not. And that's why I am so skeptical about (and so resistant to) adjunct medications. I am not fully convinced that "adding on" another med will fully control my seizures (and I don't think I'm alone in this camp - I think there are some neurologists with their tents pitched right next door).

 

[KarenB]

I hear you & totally agree! And yes, you're probably right about the adjunct meds. I just read a study that monotherapy is generally best for treating seizures. Will try to find it again.

I know that in our case, most of the meds did not help at all, and two seemed to make matters worse (and I'm not talking about side effects, but the seizures themselves).

I think sometimes doctors have no idea what to do, but feel like they have to do SOMETHING, so they just throw more meds at us.

I wonder if there has really been much decrease in seizures in the past 80 years or so that AEDs were developed?

 

[KarenB]

OK, found it -- can't post links, but the study is found in

Curr Neuropharmacol. 2009 June; 7(2): 77–82.

Title: Antiepileptic Drug Monotherapy: The Initial Approach in Epilepsy Management

Erik K St. Louis,1,* William E Rosenfeld,2 and Thomas Bramley3
*********
OK, research shows that 47% of patients with epilepsy become seizure free with the first AED tried, and another 13% become seizure free with the second AED given as monotherapy. (That leaves the other 40% that leaves the docs scratching their heads).

One question I have is how this study defines epilepsy. A single seizure?? That could happen from illness with high fever or any number of things without progressing to a seizure pattern. So...say...if a little kid gets an ear infection, runs a high fever, and has a seizure -- one seizure -- and then is given an AED -- does he count as an epileptic? Because, if so, that could be skewing the "success rate" of AEDs.
***
Anyway, the article goes on to say: "Polytherapy may only minimally increase seizure control and can substantially increase AED toxicity, drug interactions, seizure aggravation, comorbid depression, risk of sudden unexplained death in epilepsy patients (SUDEP), [ noncompliance, [8] and cost [4]. Polytherapy and seizure burden were the two main causes of quality of life impairment in one recent survey of epilepsy patients"

And...the article says that research indicates that no AED has yet been developed that affects the pathophysiology of epilepsy itself, or favorably impact long-term outcome.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2730009/ (here's the link --Nak)

 

[Crash]

I am taking 2000mg off Epilim and 800mg off Tegratol a day.I went 3 years tonic free,a record for me,but had a tonic a few months ago.I also still get abscences from time to time.But in general my seizures are much better controlled than in my youth.

Mind you my nuero still wants to up my Tegretol slightly,but we have agreed to wait and see what happens seizure wise.

 

[momof3boys]

I take medication for simple partial seizures. Keppra XR. But if I dont get enough sleep, or take on alot of stress, it can cause break through seizures to occur. usually I get warning signs. Once I get those, i can pretty much tell if a seizure is on its way.

 

[nicholas:)]

I had 5 breakthrough seizures a month (15 just on tegretol, 5 on a combinationt of tegretol and clonzepam). Switching to pregabalin/tegretol combo I had 9 seizures in August - still in process of upping pregabalin and lowering clonazepam.


Mine are simple partial breakthroughs

 

[KarenB]

It's a bear coming off of Clonazapam -- I love that drug, but our doc took Jon off it 3 days ago. He had 5 seizures the night after he was taken off (even when subbing Diazepam and adding on Zonegran), and he'd only been on it as a rescue med for 2 weeks. Last 2 nights better -- 3 seizures, and then 2 last night.

 

[nicholas:)]

I had breakthrough Seizures coming off of Clonazepam - I too liked Clonzepam. I was started on a low does of Pregabalin. Since the Pegabalin has been increased my breakthrough seizures seem to have ceased. I'm weaning myself off of the Clonazepam. Early days - just over a week since the dose was increased

 

[KarenB]

Nicolas -- I just came across a thread at Matthew's Friends regarding weaning off of Clonazepam, and thought of you. You can go find the thread if you want at that site -- it's under pinned and ongoing. But the deal was, the child had been on Clonazepam initially as a rescue med, and then it was added on as an adjunct, but after about 3 weeks, it would stop work, and get increased. So, the child was up to 17.5 mg a day. They tried a very gradual wean -- about 1 mg every 3 weeks, and that didn't work. But then they saw a different neurologist who recommended a different type of wean -- using alternate days. I guess this works because of the long half life??
For the first 2 weeks -- full-dose one day, half dose alternate days
For weeks 3 & 4 - full dose one day, no meds alternate days
For weeks 5 & 6 - full dose every 3 days
For weeks 7 & 8 - half dose every 3 days
Week 9 -- off meds

So...what happened with this child (who usually had 2 to 3 tonic clonics each week) was
First 2 weeks -- 3 tonic clonics, 5 tonics
Weeks 3 & 4 -- 2 tonic clonics
Weeks 5 & 6 -- 1 tonic clonic
Weeks 7 & 8 -- 1 tonic clonic
At week 9 - no more seizures (for next 6 months)

I thought it was a rather novel way of weaning off of a med, but then I kinda seem to remember doing something like this with the VPA wean

 

[nicholas:)]

Thank you Karen. I'm down to 1.5mg from 5.5mg - coming off 0.5mg a week. My Doctor wanted me to come right off of Clonazepam from week two! The trouble with weaning off of a meds and going on a new meds is one does not know which is causing the problems, should they arise or the benefits.

I shall continue this route for now - dropping 0.5 each week - 3 weeks until I'm off of Clonazepam - then up Pregabalin if I need to.

Thank you again for the information.

 

[KarenB]

Yep, know what you mean. Our doc took Jon right off the Clonazapam (but he'd been on a very small dose -- less than 1 mg), and last night was our first seizure free night.

But he substituted Diazepam (for short term control while the Zonegran gets started), which makes me nervous, because I know we'll have to wean off of that in a few weeks, and hate the thought of the break through seizures.

 

[katzy]

I was seizure free on Lamictal.. not even 1 seizure for over 3 years .. But then I stopped taking it and and there comes a T/C . Dr put me back on it again..still on the starter kit at 50 mg.
Mine was never well controlled on other drugs.

 

[KarenB]

OH, what a bummer, Katzy. Did you wean off slowly?

I guess the good news is that it did control your seizures for over 3 years, and hopefully will do so again. And hopefully the side effects aren't too bad.

Doc tried to put Jon on Lamictal a couple years ago, but he had an allergic reaction -- vomiting, diarrhea, skin rash -- so not only can't he use Lamictal, but neurologist says it also rules out other meds in that family.

 

[katzy]

OH, what a bummer, Katzy. Did you wean off slowly?

I guess the good news is that it did control your seizures for over 3 years, and hopefully will do so again. And hopefully the side effects aren't too bad.

Doc tried to put Jon on Lamictal a couple years ago, but he had an allergic reaction -- vomiting, diarrhea, skin rash -- so not only can't he use Lamictal, but neurologist says it also rules out other meds in that family.

I did wean off slowly, but I don't know if that's how a doctor would have weaned me off. I completely stopped my evening dose(200 mg) for a week, then stopped the morning dose (200 mg).
Yes, hopefully it'll work again.
Sorry to hear about your son I had the same when I took Trileptal, I waited too long to go to the hospital, I'm glad I'm still alive because my skin was peeling. So doc wanted me to try Keppra, which relatively had minor side effects according to my doc. It didn't control my seizures, so she added Lamictal to it and then tapered off the Keppra after 5 months.

 

[KarenB]

Not being familiar with Lamictal, (except a brief encounter for about 3 days) not sure how hard to wean off, esp. after being on for 3 years.

But I do remember when we weaned off Depakote (Valproic Acid) it took about 6 months -- a little quicker in the beginning, because his liver enzymes were in 200 range, but once they got down to around 100, slowed down. He was on 1250 a day, and his doc reduced the dose about once every 3 or 4 weeks. But Depakote is one of those hard drugs to wean. Fortunately, we had a good experience - no break throughs during the weaning process, although he did rfelapse about 3 months after being med free.

 

[katzy]

Not being familiar with Lamictal, (except a brief encounter for about 3 days) not sure how hard to wean off, esp. after being on for 3 years.

But I do remember when we weaned off Depakote (Valproic Acid) it took about 6 months -- a little quicker in the beginning, because his liver enzymes were in 200 range, but once they got down to around 100, slowed down. He was on 1250 a day, and his doc reduced the dose about once every 3 or 4 weeks. But Depakote is one of those hard drugs to wean. Fortunately, we had a good experience - no break throughs during the weaning process, although he did rfelapse about 3 months after being med free.

I'm not too familiar with Depakote. I've heard it causes nasty side effects that's all I know about Depakote Lol. How often did you have to do those blood tests? also what kind(s) of seizures does he have?

 

[KarenB]

He has tonic and tonic/clonic seizures.

Yes, we hated Depakote -- there's the liver issue, and also it caused bone marrow disease.

And it made him such a zombie. And when he went up to a high dose he just cried all the time (and he NEVER cries).

And I've read several accounts of people on this forum or Charlie Foundation (for those on ketogenic diet) of it causing hyper ammonia, which can be fatal.

Plus the weight gain (which was ok for Jon because he was quite thin, but can be a problem for adults) and losing hair -- he probably lost about half of his hair. It thinned out and he had a receding hairline like a middle aged man.

As I recall, his doctor was having his liver enzymes and CBC checked about once every couple months.

 

[KarenB]

Oh, and get this...5 days ago I was sitting in the neurologist's office and he was suggesting going BACK on Depakote!!!

I think sometimes doctors fail to review a patient's chart when they prescribe meds. I mean, we can live with weight gain and hair loss, and even mood swings, but we literally can't live without a liver or functional bone marrow.

 

[katzy]

He has tonic and tonic/clonic seizures.

Yes, we hated Depakote -- there's the liver issue, and also it caused bone marrow disease.

And it made him such a zombie. And when he went up to a high dose he just cried all the time (and he NEVER cries).

And I've read several accounts of people on this forum or Charlie Foundation (for those on ketogenic diet) of it causing hyper ammonia, which can be fatal.

Plus the weight gain (which was ok for Jon because he was quite thin, but can be a problem for adults) and losing hair -- he probably lost about half of his hair. It thinned out and he had a receding hairline like a middle aged man.

As I recall, his doctor was having his liver enzymes and CBC checked about once every couple months.

that's horrible! *hugs* I hope they'll find a way to control his seizures

Oh, and get this...5 days ago I was sitting in the neurologist's office and he was suggesting going BACK on Depakote!!!

I think sometimes doctors fail to review a patient's chart when they prescribe meds. I mean, we can live with weight gain and hair loss, and even mood swings, but we literally can't live without a liver or functional bone marrow.

That's crazy. Maybe his only concern is making money, and sees too many patients in one day that he doesn't have time to review patient charts properly!
Are you going to consider doing VNS or something along those lines? or is VNS only for people with auras that can predict they're going to have a T/C?

 

[RunningGirl85]

I have simple partial seizures (mostly) and was having breakthrough seizures when I was on just Keppra. I was put on Lamictal along with the Keppra about a month ago, and the frequency seems to be decreasing, though I had some that were more intense a couple of weeks ago (I'm still upping my dosage though). I'm hoping the combo of Lamictal and Keppra will stop the breakthrough seizures.