Stopping drugs when seizures have been controlled for years

[Bernard]

This is a very good page that explains the research (with citations) and considerations: Should someone who no longer has seizures stop taking epilepsy drugs?

Your doctor will be able to help you weigh up the pros and cons of stopping treatment. Most doctors recommend that people have no seizures for at least two years before they think about stopping treatment.(1)

However long it's been since your last seizure, you could still have another one sooner or later if you stop taking your drugs.

• Around 3 in 5 people who have not had a seizure for at least two years will stay seizure-free for another two years after stopping treatment.
• But, this means that about 2 in 5 people will have another seizure within two years.(2, 3, 4)

It's hard for doctors to say exactly what your chances of having another seizure will be. The longer you are seizure-free after stopping treatment, the more likely it is that you will stay seizure-free.(3)

Some things can make it more or less likely that you will have another seizure. Your doctor may consider:

• Your age
• The type of seizures you have
• The number of drugs you take
• Whether you've had seizures since you started taking epilepsy drugs
• How long ago your seizures stopped.

...
Here is a list of things that can raise or lower your chance (or risk) of having a seizure after stopping treatment.(2, 3, 4)

Things that raise your risk

• You got epilepsy as a teenager or adult.
• You have severe epilepsy and take at least two drugs for your seizures.
• You have had seizures since you started taking epilepsy drugs.
• Tests show abnormal electrical activity in your brain.
• You have had a tonic-clonic seizure or myoclonic seizure. Both of these affect your whole brain (they are called generalised seizures).

Things that lower your risk

• You got epilepsy as a child.
• Your seizures were controlled quickly and easily with one drug.
• You have been seizure-free for a long time (at least two years).
• Tests show no abnormal electrical activity in your brain.
• You have seizures that affect only part of your brain (partial seizures), and you have not had any tonic-clonic or myoclonic seizures.

...
Some types of epilepsy are more likely to go away than others.

• Children who have benign childhood epilepsy are very likely to stay seizure-free after they stop taking drugs.
• On the other hand, those with juvenile myoclonic epilepsy are unlikely to be able to stop their treatment. There's around a 90 percent chance they will have seizures if they stop taking their drugs, and these seizures can be severe.(1)

...
Stopping drugs safely

You or your child should not stop taking epilepsy drugs suddenly or change the dose in any way. This could cause very serious seizures and permanently change the way your epilepsy responds to drugs.(5)

The National Institute for Health and Clinical Excellence (NICE), the body that advises the government on health care, says you or your child should see a specialist (usually a neurologist) if you want to stop or change your treatment.(1)

When people with epilepsy are coming off their drugs, their treatment is tapered. This means their dose gets gradually smaller and smaller until it's safe to stop taking the drug completely. The daily dose is normally reduced by about a quarter every two to four weeks.(4)

If you take more than one drug, you should come off them one at a time. And, before you start, the specialist should make sure you know what to do if your seizures get worse.(1)

You may not be able to drive while your drugs are being cut down, or for the six months after you stop taking them. This is because your risk of having a seizure is higher during this time.(6)

 

[Bernard]

I wanted to follow up on this. The article states that:

Tests show no abnormal electrical activity in your brain.

is a factor that indicates reduced risk. EEG neurofeedback can help normalize brain function and may help eliminate the need for AEDs.

 

[brain]

Bernard:

I had read, read, and read that
article many times; and CORRECT
me if I am wrong - because I'm
getting BRAIN FRIED here.

Basically it is implying that "if
the coast is clear - INCLUDING
your EEG's are NORMAL (meaning
there are NO ABNORMALITIES)"
you are then eligible to be reduced
and removed from AED?

Otherwise, even if you had no
seizures for a few years but yet
you still have abnormal EEG's
you're not a candidate for any
AED reduction or removal?

Is this what I am reading
correctly? Sorry... my brain is
getting screwy here trying to
sort out the implication of it
all and it's fried at the moment.

 

[bedolaga]

Here you'll find more strict professional guidelines for discontinuing anti-epileptic drug therapy, developed by AAN:

http://www.aan.com/professionals/practice/pdfs/gl0007.pdf

Edit: Link no longer works. Here's a link to AAN's guideline page. I couldn't find the document any more:

https://www.aan.com/policy-and-guidelines/guidelines/

 

[brain]

Thanks Bedolaga

*sigh*

Thanks for that link! Doesn't look
like I'm going to be anywhere near
there on the Discontinuance of any
anti-epileptic drug's even when I had
periods of being seizure-free .. my EEG's
were still all abnormal.



I sure am glad you found that link,
I have it on my PDF files - saved.

 

[Bernard]

It's not about being a candidate - it's about the risks and potential for being able to do so without a re-occurance of seizures.

 

[bedolaga]

Yeah, it's necessary to add, that there are quite authoritative opinions, that EEG itself in not so crucial indicator in this issue.

Some famous neurologists say: "Cure brain, not EEG".

By the way, though EEG biofeedback is dealing with EEG, actually it shapes new functional connections in the brain, stabilizes it.

So it's possible, when EEG still contains some abnormalities, but all clinical manifestations of epilepsy are gone.
And sometimes vise versa.

So, EEG is not the very crucial indicator.

Best to all!

 

[Belinda5000]

MY husband has epilepsy he had LTL in 1972 his seizures stopped but his auras didn't.
He stopped takingthe phenobarbital but he stays on tranxene to control his auras.

He see's the same neuro I do once a year.

Belinda

 

[Bernard]

Mayo Clinic Finds it Generally Safe to Withdraw Anti-Seizure Medication in Children with Epilepsy

Sunday, December 07, 2008

ROCHESTER, Minn. — A new Mayo Clinic study found that it is generally safe to withdraw anti-seizure medications in children with epilepsy who have achieved seizure-freedom while on the medication. Researchers found that these children were not at high risk of subsequently developing intractable epilepsy. The study will be presented on Sunday, Dec. 7, at the American Epilepsy Society's annual meeting in Seattle.

VIDEO ALERT: Additional audio and video resources, including excerpts from an interview with Dr. Nickels describing the research, are available on the Mayo Clinic News Blog.​

Epilepsy is a disorder characterized by the occurrence of two or more seizures. It affects more than 3 million Americans. Approximately 10 percent of affected children have intractable epilepsy, a condition in which medications alone do not control seizures and seizures have a disabling effect on quality of life.

"It is often recommended that children with epilepsy who become seizure-free on anti-seizure medications be withdrawn from the drugs to avoid side effects of long-term use. Those potential side effects include cognitive slowing, incoordination, weight change, behavioral decline, and liver damage," says Katherine Nickels, M.D., a Mayo Clinic pediatric neurologist and an author of this study. "However, few previous studies had examined the risk of intractable epilepsy following withdrawal of anti-seizure medication, and the reported risks varied widely."

Dr. Nickels and a team of Mayo Clinic researchers set out to determine the frequency of intractable epilepsy in children who withdrew from anti-seizure medication after a period of seizure-freedom. The team reviewed the records of 241 children, ages 1 month to 16 years, who were diagnosed with new-onset epilepsy between 1990 and 2000. They identified 152 children who were diagnosed and treated with anti-seizure medication and had at least five years of follow-up. Of those, 56 children (37 percent) achieved seizure-freedom and were withdrawn from the medication. After an average follow-up of eight years, 20 children (36 percent) experienced at least one seizure recurrence. Fifteen of these children re-started the anti-seizure medication, and eight (53 percent) achieved seizure-freedom within one year, two (13 percent) achieved seizure-freedom after two years and only three (20 percent) developed intractable epilepsy. Overall, only 5 percent of the 56 children who withdrew from anti-seizure medication following seizure-freedom developed intractable epilepsy.

"The risk of children developing intractable epilepsy after withdrawal of anti-seizure medication was only 5 percent, which is similar to the risk of intractable epilepsy at the time of initial diagnosis of epilepsy in children," says Dr. Nickels. "Therefore, the children who achieve seizure-freedom on anti-seizure medication should be considered for withdrawal without high risk of intractable epilepsy."

Other members of the Mayo Clinic research team included Elaine Wirrell, M.D., and Jeffrey Buchhalter, M.D., Ph.D.

Press Release

"children who withdrew from anti-seizure medication after a period of seizure-freedom" - It's too bad neither the press release nor the study abstract explain what the period of seizure freedom was before medication was stopped. I wonder how that might correlate with the patients that had a seizure recurrence.

 

[brain]

That is wonderful news to hear!

Great Post Bernard!

:tup:

 

[RanMan]

I was advised by my neurologist several years ago not to quit the AEDs.
Reason? I've had an EEG every year since 1979 and although I'm not having seizures, the EEG still shows (after 28 years) that I still have "seizure activity" in my lower tempral lobe. I still get small auras but my neurologist says that if I didn't take my AEDs, these auras would be full blown seizures. That's proof to me that the AEDs are doing their job.

Another factor to consider is if you're on any other meds that could react differently without AEDs (such as my case),it could affect the rate of metabolization of other meds.

Randy

 

[drarvindr]

On the other hand, those with juvenile myoclonic epilepsy are unlikely to be able to stop their treatment. There's around a 90 percent chance they will have seizures if they stop taking their drugs, and these seizures can be severe

Learned that the hard way:roll:. I was sick and tired of 7 years of being medicated and feeling drugged and sleepy all the time . At the time around 6 years ago i was on 500 mg of depakote (epilim). Two months later i go into status epilepticus on a train with no means to get to a hospital. Another two months later , my dose is tripled to 1500mgs , gained 20 kgs over 6 months , lost a lot of hair, dad took away the car keys and i got screwed for being an idiot and not consulting before i stopped my meds.

What really pissed me off was that my neurologist wrongly diagnosed me as having petit mal and gave me the false hope that taking meds for 5-6 years would solve my problem . So i took the meds diligently for 5-6 years and went expecting to be told that i could cut them down , when he says he was wrong and that i had JME and would need drugs all my life. So i responded in typical moronic teenage fashion by stopping my meds.

Ah well , C'est la vie! (est ma vie a vraiment sucer!).

 

[walsh]

Can someone please give an example of how they stopped taking medication, or how it should be done? When does the quartering stop? For example, if i'm on 1000mg Keppra, I should go to 750mg in 2-4 weeks. Then keep quartering, but at what dose do you stop quartering and quit the drug.

 

[Bernard]

AEDs can have different "half lifes". A weaning schedule can be different for each of them. You should talk to your doctor about any medications you are taking. FYI - http://www.coping-with-epilepsy.com/forums/f23/when-weaning-off-drugs-ramp-down-675/

 

[RobinN]

I went slower with my daughter, than what the doctor recommended.

I would like to add to the above reasons as to why you would not see positive results to weaning off of drugs,
would be your overall physical condition. I would think if you are not eating well, not exercising, not taking care of your emotional health, you would be more likely to have a re-occurance of seizures. If you have not worked on correcting the cause, or creating a healthy environment, I would think your body would just react again in a similar way that it did before.
However, that is just my opinion.

 

[googly389]

I went slower with my daughter, than what the doctor recommended.

I would like to add to the above reasons as to why you would not see positive results to weaning off of drugs,
would be your overall physical condition. I would think if you are not eating well, not exercising, not taking care of your emotional health, you would be more likely to have a re-occurance of seizures. If you have not worked on correcting the cause, or creating a healthy environment, I would think your body would just react again in a similar way that it did before.
However, that is just my opinion.

A very sound opinion. As mentioned in the other thread (somewhere), I'm still fairly new into the GFD and every 6 months I ago without an aura then I'm going to decrease the Depakote by 250mg (if it's ok with the doc). Withdrawing from D in just a month, the standard protocol, is just too dangerous in my opinion. We know our bodies better than the doctors

 

[RobinN]

I hope you appreciate how you are feeling, and continue to stay strong with the changes to your daily nutrition. It isn't easy, with all the people encouraging you to eat the Standard American Diet, but it seems to be working for you. I applaud your focus.

 

[RobinN]

I was advised by my neurologist several years ago not to quit the AEDs.
Reason? I've had an EEG every year since 1979 and although I'm not having seizures, the EEG still shows (after 28 years) that I still have "seizure activity" in my lower tempral lobe. I still get small auras but my neurologist says that if I didn't take my AEDs, these auras would be full blown seizures. That's proof to me that the AEDs are doing their job.

Another factor to consider is if you're on any other meds that could react differently without AEDs (such as my case),it could affect the rate of metabolization of other meds.

Randy

Randy, I don't know if you saw the post I put up, where children with celiac disease, when fed gluten, they have abnormal EEGs. I do not have a medical degree, I am a mom of a girl with seizures, and I read a lot. It just seems to reason, that if you have had issues with your intestines that this "might" be the cause of your abnormal EEGs.

 

[RanMan]

Robin,

It sounds like you've been doing a lot of research into this ~ BUT:

I don't think your post above applies to me in this case, I had seizures and abnormal EEGs BEFORE I was dx with Ulcerative Colitis but it does stand to reason since the two conditions go hand-in-hand, (at least in my case).

 

[RobinN]

Yes, but.... it is known that you can have sensitivities prior to any digestive symptoms. So I was wondering if you could have had damage to your intestine / colon, that you were unaware of, prior to your dx. resulting in abnormal EEGs ?