Has anyone ever been successfully weaned off their epilepsy meds?

lavatera

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Hi there, :e:

I got epilepsy from a bad hit to my head years ago. I have been on Primidone and Dilantin for many years. Since there is a lack of Primidone right now, my DH and I made an appointment with a neurologist.

The neurologist says that if my EEG and MRI come back clean, that he suggests I slowly wean off my meds, to see if I need them or not.

Has anyone done this, or does anyone know of anyone who has successfully done this, and never had more seizures?

What would happen if I slowly was weaned off my meds, but had a seizure and needed them again. Would they work as before or would I need to have a stronger dose, or another med as well?

What other withdrawal symptoms did you or someone you know have?

I really would like to make an infomed decison.

Thank you so much,

lavatera
 

momof3boys

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Well, earlier this year, my doctor tried to wean off of Keppra. He was doing it slowly, going from a full 3000mgs a day, and every week going down 250mgs, which would take 3 months total to get completely off the medication. I got down to 2500mgs, and had the tingling feelings in my left side of my body, and headaches. It would happen all the time. I told him about it and he didnt think it was seizure related, til I went back and told the other Physican assistant about it and she put me back to the 3000mgs. The headaches and tingling feelings all went away within a few days of being back on the full dose.

I know everyone has different withdrawal symptoms, but for me, those were the two that bugged me the most. My dr wants me to try it again, next year, in august when I see him next. He said he would like it if I can try to get completely off the medication. I would love to be off seizure medications! Ive lived my whole life with Epilepsy. But, after going through the withdrawal process earlier this year, my gut tells me its going to be the same thing if my dr were to try it again in 9 months.

I just wanted to let you know my experience when my dr weaned me off the Keppra.
 

Blythe

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I am Not going to get thrown to the Wolves

My doctor offered it to me before he retired. If something happens, I am my sole support. What happens if is doesn't work? I have such mixed feelings now that I know the Meds have decimated my bones ( especially the 20 years of Dilantin to Age 35), in light of my injury this last summer.
 

epileric

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I don't remember who but I'm sure someone on this site talked about going off of a specific AED but when going back onto it, it didn't control the seizures like it did before.
 

lavatera

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Thank you so much for all of your replies.

If anyone else reads this, and has had the experience I mentioned above, I would appreciate your responses as well.


Thanks so much,

lavatera
 

Nakamova

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I've gone off meds a few times, unsuccessfully. I haven't had any trouble going back on meds afterwards. I haven't needed to go on a higher dose, or to change meds, or to add a med.
 

elizzza811

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I know every time I'd try to slowly wean myself off Klonopin, my symptoms would escalate with just the slighest drop in dosage. Cold-turkeying it was a true nightmare - I can attest to that. It pretty much damaged my brain.
 

Nakamova

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Yes, I want to stress that when I went off meds, I did so very slowly and under a doctor's supervision. Avoid stopping cold turkey if at all possible.

I think in the case of Lamictal, stopping and starting can lessen how well Lamictal will work in the future.
 

lavatera

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Thank you Nakamova, for letting me know. Since there is a lack of primidone right now, I have no idea what is going on, but, yes, I agree that stopping cold turkey is the worst thing to have to do.

I will remember what you said about stopping and starting Lamictal, and wonder if primidone can also be the same, which makes me wonder why neurologists want us to stop our meds if going back on some of them could mean a higher dose. I say don't rock the boat, if only they would listen to me.

lavatera
 

Brent

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I have no direct experience, but I know people who have gone off meds with no future problems, some who have stopped but had one or two breakthrough seizures years later, and even a couple who just quick cold-turkey on their own with no future seizures (not something I recommend).

I think that it is important to be with a neurologist who has getting you off of meds as one of the top two or three goals. This is important for me anyway.

When I started treatment, I told my neurologist that, in considering treatments, multidrug therapy was off the table - I would not consider it. I am currently on Keppra and Carbatrol, but only with the intent to ramp up Carbatrol and ramp down Keppra (since Keppra wasn't being very effective for me).

For me, taking the meds is almost as bad as daily seizures. So, my goal is to get off of them as soon as possible. My neurologist has this goal in mind in prescribing my treatment.
 

Endless

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Lavatera,

If someone has been seizure-free on medication for over 3 years, about 75% can discontinue medication without the seizures coming back.

http://www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm?css=print#188343109

I was taken off Topamax cold turkey due to a serious side effect. The withdrawal was horrible. I've found reducing by tiny amounts over a long period of time isn't bad. In your case, If you wean yourself slowly, if the seizures return at any dose you can ramp right back up again.

You stand a good chance of being seizure free without meds now. I know it feels scary but maybe it might be worth finding out??? Tough choice to make either way, because of possible seizures, loss of driving privileges, safety, etc. But I'm envious that you have the opportunity to choose. Med-free is the brass ring for all of us.
 

lavatera

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Thank you for your replies. Please keep them coming, if possible.

Once I get my MRI results back, as the technician told me that my EEG does not show any seizure activity, I guess I can then decide what to do. This is why I am asking people here about it.

Can an EEG miss any seizure activity that is possibly still happening? Just wondering, as my neurologist says the MRI and the EEG can't say for sure that I do not need the meds.

Thanks so much,

lavatera
 

CQ:)

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When i have been taken of a med it was usually replaced by another med.
My neuro once weaned me of a med too quickly which caused me to have a tonic clonic, after that any time he changed my meds he would slowly wean me of the old med while gradually increasing the new med. Luckily when my neuro did slowly change my meds the main side effect I would have was being a bit dopey like I was on my own planet lol.

The only med I have been taken of cold turkey was the neurontin but it was done while I was in hospital for my Video EEG & had asked the specialist if I could be taken of the neurontin because I didn't like the side effects it caused.

In March it will be 12 months since my surgery & if I am still seizure free then the neuro is going to start to gradually wean me of one of my meds. There is a good chance it will be the Keppra they take me of but I believe they do it very slowly.
 
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Brent

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Can an EEG miss any seizure activity that is possibly still happening? Just wondering, as my neurologist says the MRI and the EEG can't say for sure that I do not need the meds.
Yes, definitely. The EEG pretty much will only show a seizure if it is happening while the seizure is occurring. Mine tends to also show an abnormality (from previous damage) but that is not specifically indicative of seizures. An MRI just shows an image of the brain and surrounding hardware. It will show things like brain tumors, but more commonly, it will show damage that is caused by seizure activity. It won't indicate seizures directly.

Basically, your neurologist is looking for things that will definitely rule out the idea of taking you off of meds. Catching a seizure on the EEG or seeing significant edema on the MRI will rule out those options. Not seeing those things, the decision moves on to other factors.
 

lavatera

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Thank you so much for such quick input.

Brent, I like the way you see things. I am very distrustful of neurologists, it sounds like you must have a good one. If they do not see anything on the EEG or the MRI, I am wondering what factors the decision would be based on according to what you just told me. For the record, I am on Dilantin 100 mg twice a day, alternating with a third capsule every second day, as well as primidone, 250 mg, twice a day.

Thank you so much,

lavatera
 

Endless

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My epi told me that sometimes even tonic-clonic seizures when in progress can't be seen on an eeg. He had one patient go about 20 years before they finally showed up.

When they can't see something on an eeg they go by case history, and often by the videos from the inpatient video eeg (which I assume they did for you at some point). When it comes to seizures stopping they'll go by how you say things are, plus look to see if your brainwaves are normal on an eeg. If eeg isn't showing something, they just go by what you are telling them.
 

lavatera

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Thank you for your reply. I do not know what a video from an inpatient EEG is, so chances are if I had one, it was years ago when I was a teen, which means they probably do not have it anymore.

At this point, I guess all they can do is go by what I say, as well as the results of the MRI, which I will not have until sometime in the New Year. I do tend to worry so am not sure what I will decide, unless of course I have no choice, if they stop making primidone. I am not sure how they can wean you from a med (dilantin) which is a capsule, as it cannot be cut in half.

How can they wean a person off of two meds? I take both Primidone and Dilantin. I am guessing that they somehow work together.

Sometimes I think that as long as they slowly wean me off the meds, I am willing to try it, but other times, I change my mind, especially since my DH travels for a month at a time because of his business. He may need to put that on hold for a few months or so, I guess. Thanks so much for letting me know.

lavatera
 

Nakamova

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Interestingly enough, there's a caution on both meds being prescribed at the same time: When Primidone and Dilantin are taken together, your body may not process primidone properly, and its levels may become too high. So it's good that you'll be making a change!

Your neurologist should help you come with a taper schedule., but my guess is that you'll start tapering off of the Primidone first. Since it's a phenobarb, it may have some withdrawal symptoms that will be somewhat mitigated by having the Dilantin in your system. Dilantin comes in increments as small as 30mg, so when the time comes you can taper slowly using those.
 

lavatera

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Where would I be able to find out what withdrawal symptoms I might have? The neurologist calls them dinosaur meds, so probably doesn't prescribe them to anyone, unless necessary.

lavatera
 

CQ:)

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Where would I be able to find out what withdrawal symptoms I might have? The neurologist calls them dinosaur meds, so probably doesn't prescribe them to anyone, unless necessary.

lavatera
Have you tried looking on google for side effects or withdrawal symptoms of the meds you're on?
 
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