So I was diagnosed with epilepsy when I was 7 years old. I had nothing serious, just petit mal staring spells. It was hard when i was younger because it kept me from learning and i had issues paying attention. Now i'm 19 and in college, and I want to stop taking my medicine. No one but my boyfriend is supporting me in my decision. My mom also has epilepsy, and she thinks it is a terrible idea. What she and the rest if my family don't know us that I have done my own little "experiments" with my meds. I've gone almost a year not taking my medication and i'm completely fine. I drive fine, i have no issues focusing in school or anywhere else. Imm very active working two jobs along with school. I know it was a risk to toy with my medication, but no one believed that i have "grown out" of my epilepsy, which I have read and have been told is possible. Even my neurologist is skeptical. He said to get off my meds, i need to stop driving for 6 months straight, which is impossible with my schedule. I decided that when i go away to a university in 5 months, i want to stop taking it then. Everything is walking distance, and my boyfriend will be with me to drive my places if need be, even though i dont need him to. I want to stop the medication because 1. My dosage is too high and it makes me sick, and also because it keeps me up at night. 2, i know i dont need it. I just need some advice or support. Thank you
Need some advice
- Thread starter dselj
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Hi dselj, welcome to CWE!
If you've been seizure-free on medication for at least two years, then most neurologists would consider trying a medication taper to see if you can remain seizure-free. I don't know what the laws are where you are, but in the U.S., driving is restricted for up to a year after you've had a seizure but not before. You might want to do a little research to see what the laws are in your area, and whether your neuro is correct.
Your neuro can't force you take take medication that you don't want to take. He can make sure you are aware of possible risks of going med-free, but he can't forbid you to do so. If you decide to taper, he should help you do so. One option is having an EEG at some point during the taper to see if there are still epileptiform brain waves. If the EEG come up positive, that might be one reason to consider staying on medication.
With or without your neuro's blessing, if you decide to go off medication, you should do so "low and slow". This means in small increments over a long period of time. This will help help your brain adjust, and minimize withdrawal seizures or side effects. You should also make sure to avoid stressors like fatigue or caffeine.
Bottom line, with a history of only absence seizures (petit mals), and a long seizure-free period, then it seems reasonable to me that a taper would be worth trying.
Best,
Nakamova
If you've been seizure-free on medication for at least two years, then most neurologists would consider trying a medication taper to see if you can remain seizure-free. I don't know what the laws are where you are, but in the U.S., driving is restricted for up to a year after you've had a seizure but not before. You might want to do a little research to see what the laws are in your area, and whether your neuro is correct.
Your neuro can't force you take take medication that you don't want to take. He can make sure you are aware of possible risks of going med-free, but he can't forbid you to do so. If you decide to taper, he should help you do so. One option is having an EEG at some point during the taper to see if there are still epileptiform brain waves. If the EEG come up positive, that might be one reason to consider staying on medication.
With or without your neuro's blessing, if you decide to go off medication, you should do so "low and slow". This means in small increments over a long period of time. This will help help your brain adjust, and minimize withdrawal seizures or side effects. You should also make sure to avoid stressors like fatigue or caffeine.
Bottom line, with a history of only absence seizures (petit mals), and a long seizure-free period, then it seems reasonable to me that a taper would be worth trying.
Best,
Nakamova
You may wish to try paleo/keto diet and herbal supplements. I have been on very high dosage of both Depakote and Dilantin for years, and through herbal supplements and proper diet, my medication has been reduced significantly. Still having seizures from time to time, but they're not so bad.
Take a look in the kitchen where you will find lots of advice from others about diets for epilepsy.
And welcome to CWE!
Take a look in the kitchen where you will find lots of advice from others about diets for epilepsy.
And welcome to CWE!
I think you have a good chance of going med free but I want to underline what Nak said above. Don't just toss the pills cold turkey. Do a planned slow tapering off. Stopping the meds too quickly can actually cause a seizure and then you would be back at square one.
And Joy is right too about seeing that the rest of your body is healthy to support the transition off meds. That means no booze, caffeine, sugar, or all the other junk food staples of college life.
You can do this. Just do it the smart way.
And Joy is right too about seeing that the rest of your body is healthy to support the transition off meds. That means no booze, caffeine, sugar, or all the other junk food staples of college life.
You can do this. Just do it the smart way.
Yes, I agree w/ Nak & AlohaBird. Although my meds were greatly reduced, it was over a period of years, under the Dr.'s supervision. I still want to be medication free, but I also know of the dangers and I am willing to accept it if I can't.
Good luck to you !
Good luck to you !
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Does your state's Bureau of Motor Vehicles know you have seizure disorder? Has your license been suspended in the past? Does your license currently carry a restriction that says you must be medicated? Does your state have mandatory physician reporting that a seizure has occurred? If none of things are the case, then your license is valid until the BMV knows you have epilepsy and sends you a letter revoking your license. However, you would still be liable if you had a seizure-related accident while driving. I'm not encouraging you to drive, just letting you know that you may have more options than you think.
I recommend that you discuss the possibility of a very slow taper with your neurologist, with at least a month-long pause at each level before dropping the dose to the next level. That way, you and your doctor can evaluate how you are feeling at each step, with the possibility of an EEG when you've tapered down about 3/4 of the way to help with the making a decision about how to proceed.
Zolt
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That's a loaded question Dselj. One that each one of us has at one point contemplated. I also figured i didn't need medicine and for 4 yrs it worked ok, but then bam, a car accident. Luckily no one was injured. Lots of risk involved and best to talk to your doc. If you feel the medicine is not working for you, maybe try a different med, one that might work for you. There are something like 30+ medicines out there to give a try. I've found my med, gabapentin to be a great med for me, it feels like i'm not even taking any meds. But in fact it does work, since it's controlled my seizures to happen in the mornings.
This is definitely something you and your doc should talk about and the longer it takes for you to taper off of it, the less stress on your body, especially if you have been on it for a long time.
Cheers
iano: op:
But in fact it does work, since it's controlled my seizures to happen in the mornings. This is definitely something you and your doc should talk about and the longer it takes for you to taper off of it, the less stress on your body, especially if you have been on it for a long time.
Cheers
iano: op:I currently take Zarontin and it's not that it isn't working, it worked for the years I was taking it. And I didn't stop cold turkey, i've been doing my own thing for almost 5 years now. I take it when i know i'm getting my levels tested do they don't up my dosage. So only 1-2 months out of the year do i take it. I know I don't need it.
& Yes the BMV knows about my condition
& Yes the BMV knows about my condition
Okaaay.............. I'd be careful about it though. As much as I want to get off of my meds, I know that I need to slowly reduce it under a drs. supervision.
Not really a good idea to take it only b/4 getting your levels checked - you're only fooling yourself. The reason for getting your levels checked in the first place is to have an accurate reading of where you are.
If you really don't need it, the levels will show that. I know what you are going through as far as wanting to get off the meds. I've been tempted to do the same thing, but then, by remaining truthful and taking the meds even when I didn't think I needed it is exactly how I was able to reduce it b/c the levels showed it was too high.
If I hadn't been taking it, but only before getting the bloodwork, the Dr. probably would not have had the dosage decreased. He may even have increased it.
My point ? Be TRUTHFUL - to yourself and your doctors. Work together on this, and good luck!
Not really a good idea to take it only b/4 getting your levels checked - you're only fooling yourself. The reason for getting your levels checked in the first place is to have an accurate reading of where you are.
If you really don't need it, the levels will show that. I know what you are going through as far as wanting to get off the meds. I've been tempted to do the same thing, but then, by remaining truthful and taking the meds even when I didn't think I needed it is exactly how I was able to reduce it b/c the levels showed it was too high.
If I hadn't been taking it, but only before getting the bloodwork, the Dr. probably would not have had the dosage decreased. He may even have increased it.
My point ? Be TRUTHFUL - to yourself and your doctors. Work together on this, and good luck!
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So come clean to your neuro (he can't punish you!) and announce a final taper. It's actually safer to stay at a single dose or stay med-free entirely, rather than to go on and off just for 2 months.
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I'd definitely keep taking meds if you quit anything could happen later even if you tapered off , your seizures could even come back worse.
Belinda
Belinda
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How can you be so sure you don't need it? Maybe the last 5 years you've been doing your own thing, but by messing with the dosage, you're fighting with fire. Like Zolt said, some think they don't need meds until it's too late.... accidents can/DO happen, so IMO, it is better to be safe than sorry.
Read this story, another accident that happened recently here in Denver:
http://www.thedenverchannel.com/new...officer-john-adsit-during-high-school-protest