Advice and Experiences about terminating epilepsy / anti-seizure medicines?

In My Humble Opinion
1

Requisite Disclaimer: you’re not my doctor, blah, blah, blah.

Has anyone successfully weaned themselves off of anti-seizure medicines? I’m trying to decide whether I should try (under a doctor’s supervision, of course). Here is the situation:

I had seizure in 2009. I passed out for about 5 seconds. The only other time I passed out was another seizure in 2012 (again, about 5 seconds). Around 2011 - 2012, I also started to get (I suppose) minor seizures: sudden rushes of dizziness that would last 1 - 2 seconds with no loss of consciousness.

Then in 2012: neurologist visits, EEGs (showing epileptiform discharge in left temporal lobe), trying different anti-seizure meds, eventually settling on 200mg Vimpat twice a day.

I have had no more seizures since starting the meds. From 2012 to 2015, the EEGs still showed epileptiform discharges, but the meds prevented any seizures.

Since 2015:

  • Under medical supervision, I reduced my Vimpat dose from 200mg 2x / day to 50 mg 2x / day, then switched to Keppra 500mg 2x / day.
  • All EEGs in the last 2 - 3 years have shown NO epileptiform discharge.

I will have another EEG later in 2018. If it’s clean, I’m considering trying to wean off the meds, with my doctor’s supervision. (He has recommended against this, but will support me if I decide to try.)

My thinking: the seizures started out of the blue and were reflected in the epileptiform discharges on the EEG. Isn’t it possible that the cause of the seizures has “healed” since there is no more epileptiform discharge? And maybe I don’t need the meds anymore?

Why stop taking the meds?

  • Eliminating the clumsiness, tremor, cognitive and memory side effects would be nice. I can live with the side effects, but it would increase my quality of life if I didn’t have them anymore.
  • Cost: I switched from Vimpat to Keppra because of cost, and it would be nice to eliminate that expense.

Why keep taking the meds?

  • My doctor has warned about the likelihood of breakthrough seizures. (If I DO decide to stop, I will NOT drive a car for whatever period he recommends.)
  • I’m stable now, with mild-moderate but acceptable side effects from the meds.

So, here is what I’m asking:

  • Has anyone successfully weaned themselves off anti-seizure meds? What was your situation like, and how did you accomplish it? Did the seizures ever re-appear?
  • Has anyone tried and failed? I.e., had breakthrough seizures occur? What was that like? Were you able to restart the meds and stop the seizures successfully, or were there problems?
  • Does anyone know how prevalent breakthrough seizures are on patients with clean EEGs?
  • Anyone have professional experience with weaning patients off anti-seizure meds? What are your recommendations?
  • What other considerations should I account for in my decision-making process?

Thanks for your advice,
J.

2

Those are good questions, but they’re questions to bring to your neurologist, frankly. I’m just a Family Medicine doc, but I did institute our overall care plan for how to manage patients with epilepsy in our system, which has a good 1000+ people with a history of seizures at any one time. So I have a journeyman’s ability to manage epilepsy. NOT an expert.

But even I wouldn’t attempt to discuss the precise odds/probabilities for you, other than to say “we just don’t know enough to make a useful prediction in your case”. You may be correct in that everything’s healed, that lack of epileptiform discharges is a good sign, that going off the meds is safe, etc. But the only way to know in your case is to stop the meds and see, and it’s real common to have further seizures off meds, despite positive indicators.

I’d listen to your doc (seems like a good doc, willing to support you even if you’re not following the advice), and decide. But remember if you do seize, the clock starts running from the start again, regarding being able to drive. You’ll need to restart a med and go for a significant period of time seizure free on meds before you can legally drive.

Maybe we do have some neuro experts here that can give the latest data on cases such as yours; if so I’m all ears, I’m ready to learn more about it. Failing that, you could consult a 2nd neurologist, see if that one has a different perspective.

Good luck!

3

Thanks for the reply. I hadn’t remembered about the “no driving for 6 months after a seizure” rule, so this is definitely a factor to consider.

J.

4

I would love to know more about this as you continue this journey.
I can’t speak to weaning off any medication, but I understand why you’d want to. Keppra controlled my seizures for about 4 months, but the worst side effect was that I walked around like a pinball, bouncing off furniture and walls and everything around me. I don’t think it seriously affected my cognitive abilities, but I looked drunk all the time.
Unfortunately, I have an amazing ability to develop resistance to medications quickly. After trying 5-6 anti-seizure medications in different combinations and different dosages over 5 years, my neurologist decided that the was epilepsy intransigent, and my only choice was either brain surgery or a lifetime of barbiturates.
Not wanting to go the barbiturate route, we opted for brain surgery. I was blessed that the source of the seizures was in my right temporal lobe, it was operable, and I would not be cognitively impaired without it (I wasn’t using it anyway; it was atrophied and dysfunctional). My last seizure was a complex partial seizure on July 4, 2006. The surgery was July 6, 2006, and I have had no seizures since, other than small focal seizures around the eyes.
I know you’ve just started, but please keep us updated about your progress.

5

I’d like to hear about experiences of weaning off of anti-seizure meds. Anyone have any stories to tell?

J.

6

My wife had complex partial seizures starting in the mid 1980s. They became poorly controlled over the next several years, despite trying pretty much every med on the market (even taking part in the phase II trials for topirimate). In 1992 she had a left temporal lobectomy. She had one breakthrough seizure a couple weeks post-op, then remained seizure-free on a fairly low dose of Tegretol (with a little Klonopin added for a post-op problem with panic attacks - stopped after a month or so).

About four years later she decides to try weaning off the Tegretol (under a neurologist’s supervision). She experienced extreme insomnia and mood instability for the few months she was off. Then she had another seizure. She immediately went back onto Tegretol (with an even lower dose than before thanks to the new Tegretol XR) and has been seizure-free since. The insomnia also went away, and her mood stabilized.

Since she has been on Tegretol for so long (the better part of thirty years) any side effects are pretty much just normal life for her. Not worth the risk trying to go off the meds again.

7

Speaking as a doc who’s weaned people off of anti-epileptic drugs (AEDs), it is generally quite easy for the patient. The reason to take people off slowly is that abrupt discontinuation increases the risk for triggering a seizure. The patient doesn’t have much in the way of withdrawal symptoms (unless someone is using a benzodiazepine or barbiturate as an AED, which is NOT common anymore). Though some describe coming off Neurontin (gabapentin) and sometimes tegretol as unpleasant IF it’s done abruptly without a taper.

So I think most AED tapers really don’t result in much of a story, most of the time. However, there are always exceptions, as Marvin relates.

8

This needs to be done under the supervision of your neurologist.

My friend’s daughter was put on phenobarbital (ETA which does have minor addictive potential) as a toddler after she had several febrile seizures, and was taken off it a year later because it didn’t happen again. She was given a half-doze for a week, and then discontinued it. That was more than 20 years ago, and she has remained seizure-free and leads a normal life despite the fact that she was also a 26-week preemie.

9

I take anti-seizure medications for another type of different neurological problem. I have taken Keppra and weaned off of it with no issue.

Why does your doctor think you should stay on the medication? Is there a future time point when he thinks it would be acceptable to stop?

10

The neurologists I have dealt with have all said that once you’re on anti-seizure meds (for seizures) you’ll be taking them for the rest of your life. Apparently, the odds of what they call “breakthrough seizures” is significant for people trying to stop taking them.

My reason for starting this thread was to try to gather as much info as I could (including stories from others who have stopped taking the meds) before I decide whether or not I want to try to taper off the meds.

Thanks for your reply,
J.

11

Whether one can have a good chance at being seizure-free off meds depends a lot on the cause of one’s seizures, frankly. And for many folks with epilepsy, the cause is not known, so then the forecast must be made based on the type and severity of seizures that the person has. This is incredibly complicated to figure out, and I leave it to the expert neurologists to make their best judgment calls.

If your neurologist advises you against going off meds, I suspect there’s good evidence that folks with your type of seizures/circumstances/findings have a poor track record of success. But what does ‘poor’ mean in that circumstance? A 10% chance? A 90% chance? You can ask your neurologist if he is willing to make a guess at estimating, to get a better idea of the odds facing you.

As I mentioned before, the fact that your neurologist is willing to support you in going off meds, despite his recommendation not to, is a sign that you have a good neurologist, so pay close attention to his advice, ask questions, consider talking to a different neurologist about it, for a 2nd opinion, THEN make your decision.

Don’t depend heavily on advice you get online; I’m the closest thing to an expert in epilepsy in this thread so far, and I’m a looooooong ways from being an expert. Rely on the epilepsy experts in your life to help you choose.

My additional qualifier is that as an adolescent I had temporal lobe seizures, aka focal impaired awareness seizures, and was on phenobarbitol for 6 or 7 years. I did successfully come off the meds under neurology supervision, and have been without recurrence for over 4 decades.

PM me if you like, for specific questions.