Stop taking AED

Itr786

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I've been fortunate my seizures since surgery (2 years ago) have come to a stop. Things have moved on for the good, I'm now able to drive etc... Having a seizure isn't at the TOP of my mindset when thinking about doing anything. According to the neurosurgeon, the longer I go without a seizure, the less likely it is I'll ever one again.

At this moment in time, the next/final hurdle I have to overcome is to stop taking AED (keppra and lamotrigine.)

I can't help but worry about having a seizure whilst I'm being taken off the medication!. Is there a threat of having a seizure whilst I'm taking myself off the AED? Any personal experience?
 

CQ:)

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I had my brain surgery in 2011, I was told I would always be on meds but their goal was after the surgery to eventually get me to one medication.

When I reached the 12 month seizure free mark in 2012 my neurologist and I discussed reducing one of the 2 meds I was either Tegretol or Keppra. We decided Tegretol but did it really slowly, over 12 months as I was had stress in my life during that period.
During that time I remained seizure free and came of the tegretol in 2013 2 years after surgery.

Not long after I came of the Tegretol I started having weird feelings so at my next review I was put back on the Tegretol but continued to have the strange feelings. My neuro thought they were seizures so I eventually had a VEEG in 2015 which confirmed that these strange feelings I'd experienced were focal (partial) seizures.

I'm still having the partial seizures but they change and I had to have another medication Zonegran added. This seems to be the best combination as although I do still have the seizures they are further apart.

Ofcourse we are all different & I've just learnt to accept that my brain prefers to be on more then 1 med.
 

Itr786

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That's my biggest fear. As MUCH as I want to stop taking AED, I do wonder if I want to rock the boat!, or just carry on as I am. Looking over the reports from the neurosurgeon, he did recommend I get taken off AED after 2 years, so I think I need to do some chasing around on this...
 

Porkette

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Hi Itr786,

I had surgery to reduce my seizures and my Dr. lowered the amount of meds but then right out of the blue the seizures got bad again and I ended up going back on the meds.
My cousin had tonic clonic seizures for many yrs. but then they stopped and she didn't have a single seizure for 30 yrs. but she stayed on the med to play it safe.
If you want to go off the med try taking 2 Tablespoons of apple cider vinegar with mother in it every day along with putting coconut oil on your skin at least once or twice a day since I started doing that my seizures decreased a large amount. I wish you the best of luck and May God Bless You!

Sue
 

Nakamova

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I can't help but worry about having a seizure whilst I'm being taken off the medication!. Is there a threat of having a seizure whilst I'm taking myself off the anti-epileptic drug? Any personal experience?
My seizures are currently completely controlled by meds. At different times I've tried to go off meds, and the seizures have returned. So being seizure-free ON meds is not necessarily a guarantee that you'll be seizure-free OFF them.
If you do want to go off meds:

1. Taper very, very slowly in small increments. That will help to minimize withdrawal side effects, including a withdrawal seizure.
2. Keep your neuro and regular doc in the loop, so that if you do have a seizure, your taper schedule will be on record.
3. Ask your neuro about having an EEG done about halfway through your taper -- if it indicates the presence of abnormal brainwaves, then you'll know that it's probably not a good idea to continue with the taper.

Good luck!
 

CQ:)

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My cousin had tonic clonic seizures for many yrs. but then they stopped and she didn't have a single seizure for 30 yrs. but she stayed on the med to play it safe.
Hi Porkette
Did your cousin ever have another seizure?

I also had a big break between seizures. I had my tonic clonic 1st seizure at 9 months & took tonic clonics until I was about 3 1/2. I didn't take any seizures during my school / teen years and was taken off meds when I was 7.

But in 2002 when I was 24 the seizures returned out of the blue, had a tonic clonic in hospital. After that put back on meds & mainly took simple/ complex partials with the odd tonic clonic.

In the 17 years I've only been seizure free for the 2 years after my surgery & accepted I probably won't be completely seizure free again. Think we finally found the right med combo that helps with the seizures but it's still trial & error.
 

Porkette

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Hi CQ,

My cousin never had another seizures again, her Dr. thinks it all because she went through her change and that's what helped her out. Wishing you only the best and May God Bless You!

Sue
 

Sabbo

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Considering that I have seizures even while on AEDs, I don't think I could stop them. My neuro just raised my Zonegran dose to 400mg/day--the same as my Topamax dose due to my breakthroughs.
 

Itr786

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I have my neurosurgeons appointment in afew weeks, would you/should I INSIST on making changes with my medication?
I've been seizure free for just over 2 years, going by one of HIS reports before my surgery, he did mention looking at my medication and possibly taking me off them after 2 years.

I'm in a catch 22 situation, I think to myself why rock the boat, things are going OK, there's no need to make any unnecessary changes, on the other I'd still like to stop taking the medication I may still be reliant on.
I'm also hoping side-effects that the medication may be causing (fatigue, AWFUL anxiety, and afew others I can't think of right now!) are reduced.

What do you recon? If he decides to keep me on what I'm currently on, should I really push him to lower/stop taking the medication I'm on?
I'm MASSIVELY paranoid of having a relapse and having my seizures return.
 

Nakamova

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I'm going to repeat what I said above:
My seizures are currently completely controlled by meds. At different times I've tried to go off meds, and the seizures have returned. So being seizure-free ON meds is not necessarily a guarantee that you'll be seizure-free OFF them.

There's no obvious "right" answer. It's okay to decide to stay put, or decide to revisit the question later, or to do as I did -- give it a shot and see what happens. Just don't spend too much time second-guessing your decision (whatever it is).:)
 

resaebiunne

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Are you in a position where having a seizure is too risky? What do you do for work or are you on disability, etc.?

I'd say if you are willing to take the risk of having a seizure, try going off the medication and see what happens. Otherwise, stay on, ore merely reduce the levels of the medications.
 
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