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 anti-epileptic drugs.

[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 anti-epileptic drug?

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
anti-epileptic drug 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/pra...dfs/gl0007.pdf

[brain]

*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 neurologist I do once a year.

Belinda