How long is fully controlled???

[Crash]

I was just wondering what everyones opinion on what fully controlled was? I mean is it a week,month,six months a year? I really dont know the answer,im lucky im a year at the moment but i just know as soon as i relax BOOM!!! it will be back,i suppose if you can lead a reletavly normal life you can class yourself as "controlled?" im not sure.

 

[Nakamova]

I think 2 years seizure control (on meds) is when neurologists will consider trying a taper, and they consider 5 years even better.

 

[Crash]

Hmmmmmmm still a while to go yet,even if i ever reached that amount of time,im not sure id have the bottle to come of my meds,i mean the worry is always there as it is,not sure i could handle it without meds.

 

[Endless]

Hi, Neil,

It really is a big decision to go off the meds. It's a bit scary to think about having seizures again. But the payoff for going off the meds can be huge, too. Imagine a world without AED side effects. Two years seizure-free is the usual amount of time, some say 2-5 years.

Here's some info on the odds a person is to relapse when taken off meds:

Some doctors will advise people with epilepsy to discontinue their antiepileptic drugs after 2 years have passed without a seizure. Others feel it is better to wait for 4 to 5 years. Discontinuing medication should always be done with a doctor's advice and supervision. It is very important to continue taking epilepsy medication for as long as the doctor prescribes it. People also should ask the doctor or pharmacist ahead of time what they should do if they miss a dose. Discontinuing medication without a doctor's advice is one of the major reasons people who have been seizure-free begin having new seizures. Seizures that result from suddenly stopping medication can be very serious and can lead to status epilepticus. Furthermore, there is some evidence that uncontrolled seizures trigger changes in neurons that can make it more difficult to treat the seizures in the future.

The chance that a person will eventually be able to discontinue medication varies depending on the person's age and his or her type of epilepsy. More than half of children who go into remission with medication can eventually stop their medication without having new seizures. One study showed that 68 percent of adults who had been seizure-free for 2 years before stopping medication were able to do so without having more seizures and 75 percent could successfully discontinue medication if they had been seizure-free for 3 years. However, the odds of successfully stopping medication are not as good for people with a family history of epilepsy, those who need multiple medications, those with focal seizures, and those who continue to have abnormal EEG results while on medication.

http://www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm

Finally, AED therapy is not always forever. Tapering AEDs can be considered when a person has been seizure‐free for at least two years. However, AED therapy can only be stopped once it has been established that a person has no major ongoing predisposition to seizures and has no seizure activity on a routine EEG. The person should also not have experienced problems with prior attempts to stop medications. Even if seizures have not occurred for years, medications usually are continued if an underlying problem in the brain is present, like a stroke, tumor, abnormal blood vessel or birth defect.

If a person meets the conditions for tapering, there is a two in three chance of being able to withdraw AEDs successfully. The flip side is that there is a one in three chance of having a seizure after withdrawing medicine, a risk that some find unacceptably high. Also, many doctors advise not driving while withdrawing AEDs, which prevents some patients from even trying. In all cases, except emergencies, medications are tapered slowly and under care of a doctor.

http://www.epilepsy.com/pdfs/transcripts_approaches_to_medication.pdf

Here's specific info on relapse rates, from a review of various scientific studies:
http://www.mayoclinicproceedings.com/content/77/12/1378.full.pdf

Here's info on how withdrawing off an AED too abruptly can trigger seizures. In other words, taper off very slowly:
http://www.epilepsy.com/articles/ar_1140701404

And be sure to stay away from these drugs now, but especially during withdrawal off your AED's:
http://www.epilepsy.com/epilepsy/newsletter/jul09_AEDs

 

[Crash]

Thanking you very much Endless for all the info,having e for around 19 years now,i cant really remember what its like not to have the side effects anymore.I think even if i were to go 15 years seizure free it would always be silently lurking about.Epilepsy i think is ingrained in me now,but thats life!!!

 

[Lola Lolushka]

Hey Neil,

I've had epilepsy for about 19 years too. I haven't had a seizure in over 5 years, and about 6 weeks ago I started reducing my Epilim (1000mg per day), with a view to ditching it completely. I will still be taking Lamictal - 200mg per day, but I don't mind that - because like you, I am worried about the possibility of Epilepsy rearing it's ugly head when I least expect it.

My neuro said 5 years is a starting point for withdrawal... But I guess it depends on the type of epilepsy you have, how much medication it has taken to get you under control etc...

 

[msuder0583]

Neil, my neurologist has always told me 5 years. However, though I'm not physically dependant on my meds, I feel I am psychologically. I think I would be lost and paranoid without them. Plus there always the possibility of breakthrough seizures. It seems I have them every year in mid July even though I am completely controlled the rest of the year. This year I was lucky though and didn't have a break through. So to sum it up, I would say 5 years is complete control but there is always the possibility of a breakthrough

 

[mspang]

Hi Neil,

I'd say that's hard to answer because everybody is different.
I'm now only having a couple seizures every few months and only late at night. So at the moment I consider my seizures well controlled as i'm now able to drive again and live a better life. -Mike

 

[gowings83]

I went about 7 years seizure free, then out of nowhere I had one. After some trial and error we discovered I had become too used to the medication and just had it increased with Divalproex. We tried doubling the medication (Lamictal) but I basically became, well a real unlikeable person. I had NO anger control. From personable experience there was no "fully controlled" and I don't think anyone could ever be without some kind of help. It's there for good like a bad scar or something. Sorry to be such a downer, just speaking my mind here.

 

[Crash]

Hey Neil,

I've had epilepsy for about 19 years too. I haven't had a seizure in over 5 years, and about 6 weeks ago I started reducing my Epilim (1000mg per day), with a view to ditching it completely. I will still be taking Lamictal - 200mg per day, but I don't mind that - because like you, I am worried about the possibility of Epilepsy rearing it's ugly head when I least expect it.

My neuro said 5 years is a starting point for withdrawal... But I guess it depends on the type of epilepsy you have, how much medication it has taken to get you under control etc...

Hi Lola,im on Epilim 2000mg a day plus Tegratol Retard 800mg a day.Epilim is the drug i would like to start coming of,as i know it doesnt work its the Tegratol thats doing the buisness for me.I can certainly understand why you would be fine with the Lamictal,a wee saftey net.How are you feeling coming of the Epilim? Do you feel more mentally aware etc? Thanks Neil.

 

[Crash]

I went about 7 years seizure free, then out of nowhere I had one. After some trial and error we discovered I had become too used to the medication and just had it increased with Divalproex. We tried doubling the medication (Lamictal) but I basically became, well a real unlikeable person. I had NO anger control. From personable experience there was no "fully controlled" and I don't think anyone could ever be without some kind of help. It's there for good like a bad scar or something. Sorry to be such a downer, just speaking my mind here.

Sorry forgot about this,i agree with you gowings83 I dont think thre is a "fully controlled"either,and your certainly not being a downer just honest.My ex girl friend told me about a guy who was nine years seizure free,off all meds,went to use the photo copier at work and had a seizure im not sure was he photo sensitive or not,im pretty sure as you say some degree of control perhaps needs to be kept.Although it would be intresting to hear from anyone the lenth of time they have gone med free,or on limited meds

Thanks Neil.

 

[Lola Lolushka]

hey Neil,

since started reducing the epilim, my mind has been so much clearer - kinda like a fog has lifted. I've had more energy, and i have been so much happier (although there are several reasons for that). To be honest, i never realised how much medication messes with your mind and body - it's all i can remember. I started on tegretol when i was 8, then switched to epilim when i was about 13. I thought my moodiness was just me being an angsty teenager! Or that's what some people decided it was...

I've had a few auras recently though, so no more reduction for a little while. Overall, very happy to be ditching it. If you do, good luck with it... It's the best thing i've ever done. Hey does drinking affect you in a bad way because of meds?

 

[Crash]

Hi lola

all what you say above sounds absoloutly fantastic,its good to hear that epilepsy aint always a life sentence and that there is parole in some cases...lol,it must be great slowly feeling better and better,if you dont mind me asking how long was the taper untill you said you stopped for a break in it?

my nuero says we can disscus it next appointment,which should be a couple months if my memory serves me right? Now theres a question........but she is open to my point of view,like my last two seizures were caused by drug use,(yes i know,i should know better)so if i hadnt of been an idiot i would maybe have been two or three years free.

In terms of drinking,i can pretty much drink with the best of them,no seizures at the time,only if i drink really hard over a good few days will i have a seizure,do you drink? I think its certainly better in moderation even if its just for the cringe factor the next morning!! All the best,neil.

 

[Lola Lolushka]

Heya,

The 12th of July was when I went from 1000mg to 900mg per day, did that for a fortnight. Then 800, now 600. On the 24th I was supposed to go to 400, but I held off. I’ve had some auras etc, and lots of people have advised that I should slow it down. It’s kinda disappointing, but I suppose what’s the rush?

Well that’s a good sign if your neuro is willing to consider it after a relatively short time being seizure free! Alcohol triggers seizures for me, so unfortunately I have to be really careful about that. There is absolutely NO WAY that I would be seizure free for 5 years if I drank regularly. So that is the lifestyle change I made, amongst other things.

What are the triggers for you? Once again, it’s great that your neuro is being open minded!

 

[s10sleeper]

I've been on meds for about 17 years for mine, Depakote has really only been the constant one of them all, but now am on a total of 5 meds. When I asked my epileptologist when they would consider tapering me off, they actually told me that it would not be a good idea and would be best to stay on them for life.

I think that the reason is that finally I asked them if hippocampal sclerosis had a tendency to get worse, they told me that it has been progressive over the history of my MRIs and that as that was going my seizures were also getting progressively worse.

I'd love the thought of getting off of these meds though, never is much fun to have a cabinet full of bottles.

Anyways, from the way the other neurologists had told me they always considered 5 years before tapering off, but as far as fully controlled, I think it would be a matter of the type of seizures and their cause.

Endless, when researching it myself I was finding pretty much the same info as you. When I was checking into it I was finding that seizures coming from Mesial Temporal Sclerosis had the least chance of being controlled with medication.

I have been lucky enough with my ADHD meds to not make my seizures any worse, as I am on Vyvanse which is a Prodrug of dextroamphetamine and even have to take it in higher doses than most people.

 

[Ghots]

This was one of the first conversations I had with my neurologist, I SOoo wanted to not have to take any meds!

She told me that after 5 years seizure free we could discuss weening off the medication. Now, I went 4 years seizure free, but due to my carelessness, my dilantin level dropped too low and I had another seizure. 2 in one night actually.

The way my neurologist put it to me was this; "Once you have been 5 years without a seizure, we can talk about weening off the meds, but if the meds are working and there are no real problems with them; then I would rather leave things be."

Sometimes it is best to play it safe and keep going with what is working.

 

[momof3boys]

Well I saw my dr today, and he suggested I wait 1 more year to see how things go, and if things go good, and I have no seizures, he said we will talk about weaning me off my Keppra XR next time I see him, which would be around August-September 2012. Ive been seizure free since April 2011.

 

[s10sleeper]

Best of luck with that, I'll bet it will be nice to get off the meds. They can sure be annoying to have to try to remember all of the time. I'm still hoping for the days when I go without seizures.

Not too bad right now though, at least they are mostly at night. Anyways, good luck, I hope you do well in getting off the medication

 

[Crash]

Yeah Mumof3boys,thats certainly great news to hear.At least your nuero is prepared to tweak your medication,if all goes well to give you a better quality of life.

Lola~So youve almost halfed your epilim "dose" no wonder you say you are so much happier.I thought the taper would be a far longer drawn out process than you describe but as you say "whats the rush" Youve done really well to get yourself into this position,whats a few more months?

Triggers for myself,the main one is stress,these are the most severe as well,alchohol if i cane it but havent drunk all year.Also the odd time when one comes out of no where but there doesnt seem to be a trigger but that hasnt happend in a long while.

Even if i do get to reduce my meds and do have a seizure it wont bother me to much,because at least you can say you tried,right?

 

[momof3boys]

Yeah Mumof3boys,thats certainly great news to hear.At least your nuero is prepared to tweak your medication,if all goes well to give you a better quality of life.

Lola~So youve almost halfed your epilim "dose" no wonder you say you are so much happier.I thought the taper would be a far longer drawn out process than you describe but as you say "whats the rush" Youve done really well to get yourself into this position,whats a few more months?

Triggers for myself,the main one is stress,these are the most severe as well,alchohol if i cane it but havent drunk all year.Also the odd time when one comes out of no where but there doesnt seem to be a trigger but that hasnt happend in a long while.

Even if i do get to reduce my meds and do have a seizure it wont bother me to much,because at least you can say you tried,right?

Yeah he said out of all his experiences with seizure drugs and patients, I was one of the very few who responded the opposite to the drugs he tried after doing the VEEG. He said since Ive been good with the Keppra XR and have had no seizures, its best to leave it be and he will see me next year and we can discuss the possibility of trying to take me off the Keppra XR. I dont know if he will slowly wean me off while Im at home, or put me in the hospital to see what happens. In May when I saw the PA, she said looking at my chart, he put down wanting to take me off of Keppra, but said in order to do that and be safe, I would have to be in the hospital for that to happen. So I will discuss that with him next year.