Epilepsy and coming off tablets

[Deb12345]

Hello all :hello:
I haven’t been on here for a while because I have been coping ok and haven’t had a Tonic Clonic since August last year. Yippee. :woot: Now I believe I no longer have epilepsy even though I still get mini auras, which I tend to put down to the tablets I am having but could just be in denial. Anyways, my question is to do with tablets and coming off them. Plus, I also want to know; if people have been epileptic in the past and no longer have any systems (i.e. off tablets, can drive etc) would they still be classed as an epileptic or not, if that makes sense?!! onder: I hope you are all good. I think I need to do a bit of catching up on this site again. Thanks in advance for your replies.
Kind Regards
Debbie
:banana:

 

[epileric]

Hey Deb,

Glad to hear things have been going well re. your seizures.

Anyone who has had regular seizures is considered epileptic even if the seizures have stopped. I know that the medical profession considers someone epileptic if they've had 2 or more seizures.

IMO, I don't think it matters much how we're considered. If I've had no seizures for years (like in my dreams) should I really care if others think that "technically" I am epileptic?

My experience is that I'd never had a tonic/clonic in my life & thought I never would until I decided to stop taking my meds. That provoked a full out T/C that took 3 days before I could talk straight. Hearing you talk about stopping when you still have partials is pretty scary and tells me that it is not a good time to stop.

Something else to consider is that if you have driving (& other) privileges now & you have a T/C that means you have to wait again before you get that privilege back.

 

[Nakamova]

I agree with Eric -- the mini-auras are most likely a sign that your seizure threshold is still low. But I think it's great that you've been seizure-free for over a year. Have you talked to your doc about tapering off your meds? Most neurologists say it's safest to wait until you're seizure-free at least 2 years before trying to taper off. I've tried to go off meds several times (the last time I waited the 2-year mark). Unfortunately I haven't been able to stay seizure-free. My current plan is to wait until the 5-year mark, and hopefully do neurofeedback (after I win the lottery) for 2 years before tapering off.

 

[Endless]

Hi, Debbie,

I am so happy you have been free from your bigger seizures! Now for the bad news. I really hate to say this, but your mini-auras are most likely seizures themselves. They are milder seizures, but seizures nontheless. Now may not be the time to go off the meds. As was mentioned above, typically people need to be seizure-free for at least 2 years before they stop taking their medication. And you start counting from the last day you had a mini-aura (in other words, a seizure, no matter how weak or strong).

I agree that it would be a good step to talk with your doctor about whether or not to taper off of your meds. If you do decide to go off of them do it with your doctor's advice and help. Listen to Eric - his experience is an example of what happens when you don't.

Hang in there.

 

[Deb12345]

Thank you for your replies. I suppose I am in denial again that I have got epilepsy / haven’t got it anymore. The reason being is since I split up with my chap after 9 years together, I have been doing adventurous things such as climbing up Ben Nevis, tallest mountain in UK (without training – eek), Airkix (see profile pic), Go Ape (high ropes in trees), visiting Alton Towers theme park and going on most rides (never really ever been on big rides before) etc. Doing all of these didn’t even touch my epilepsy (great news :woot which made me think have I got it anymore. Since being diagnosed with epilepsy I have become very aware of my body and surroundings. I never know now what is normal or epilepsy related. If I don’t feel great / not myself / weird / strange I don’t know whether it’s maybe lack of sleep, side effects of tablets, maybe not well or could be to do with epilepsy. When I say auras, they are so small and quick I wonder whether it was one. Last year, before I started any epilepsy tablets my auras were so vivid, I couldn’t help but notice they were there i.e. very sharp, bright zig zag lines, loads of floating numbers etc.
Night times are still weird for me because sometimes I can wake up and i.e. a photo in a picture frame would look distorted / not my photo but this would last for at least 2 to 3 minutes but then everything would eventually go back to normal. I never know if this is to do with epilepsy or maybe tablet related, just waking up etc. I’ve had the 5 day probes on my head last year and showed up nothing (knew it wouldn’t ). I am one of these people who suddenly developed epilepsy with no proper explanation as to why? I admit there have been times I wanted to just stop taking my tablets to convince I haven’t got it or to prove to myself I have. I know it’s silly but can’t help it. I know I wouldn’t because I wouldn’t want to be classed as mental / mad, though that wouldn’t take much convincing. :brock: lol

 

[Elsie]

Be careful going off meds. Only do it with drs. permission and taper gradually. I went off after years of no seizures and was fine for 2 years, then had another tonic-clonic. Have been back on meds ever since, fine again. I just know I need something to stay seizure free. It sounds like you are having some sort of spells still. They could get worse if you weren't medicated. Know that isn't what you want to hear, but please be careful whatever you do.

 

[Jake]

Came off them and went into Status and lost 15 years of memory which has never returned. Was 15 at the time.

 

[Hand of Blood]

i think its way to soon to come off meds i was 4 years free b4 and they wouldnt bring me off!

 

[Crash]

I was on just Tegratol,but the nuero and doc thought i would get better seizure control on just Epilim,so they changed me to Epilim which was a total disastour.I had many,many tonics on the peroid i was on Epilim,but i realise some medication just does not suit some people.So i was put back on Tegratol while keeping taking the Epilim as well and regained far better control.But i kind off feel i dont really need the Epilim,but im still expericing abscence seizures and the odd tonic so all the proffesinals seem to be quite happy with the dose now 2000mg off Epilim and 800mg off Tegratol a day.

But i would love to know how i would feel if i wasnt doped up all the time,even if it was for a a few days!!! Its been nineteen years coming on twenty since i was diagnosed so i cant remember what it was like to be med free,but i suppose its one of the many prices we have to pay.Unfortnatly this is the life off us with epilepsy,but never mind theres nothing we can really do about it,apart from get to grips with it as soon as possible.

 

[marika853]

THINKING ALOUD
Once you've been diagnosed with Epilepsy, Seizure Disorder, you will Forever be that!
No cure? Just like mental illness?
I often wonder, too whether what I'm experiencing is Epilepsy related or just stress? I don't know. The doctors don't know. So what to do? Continue to take drugs? Or risk having another episode and perhaps hurting yourself, or worse yet, someone else?
VERY DIFFICULT TO MAKE THE RIGHT CHOICE!
M

 

[Belinda5000]

I've been on so many AEDs it's not funny with so many different combos.
If I seize I seize in public or at home, there's no shame to it.I hardly ever have aura.

My epilepsy been all my life.I've busted my head open more times I care remember and broke bones.
If someone can't accept me because I have epilepsy there the one with the problem.


Belinda

 

[averz21]

Hey Guys, I have been dreaming of the possibility of coming off meds over the past couple of months....I have had tonic clonic nocturnal seizures every 3-6 weeks since i was diagnosed 8-9 years ago (how time flys!). I am currently 12 months without a seizure, i am on 2000mg of Keppra a day, supposed to be taking 1000mg extra in the mornings but never managed to keep up with that and as things are looking good i just stick to the 2000mg at night. The news that you have to wait 2 years to come off meds is disappointing....although i guess it makes sense.....still, i look forward to seeing my neurologist in a couple of months as we have failed to make an appointment in the past year! I am just desperate to find out the real me and just what difference these drugs make to the way i am, also as i am now a degree student and could do without the learning disablity side effects! I really dont feel like I am epileptic anymore, dont even have early morning auras or anything so i get what some of you have said about that. Take care.
Dan