What is the physical damage of a seizure if I were to discontinue meds?

[Zara-Newman]

I've been on lots of medications and they've never worked, usually the side effects are just terrible.
My latest change I ended up in hospital very quickly due to them, my hospital and doctors aren't great so I ended up stranded with no meds pretty terrified.

So I was on 100mg lamotrogone twice a day as we were talking that down, but stopped so I still had something.

I felt amazing, no wmsode effects, no seizures for a couple of weeks and then suddenly 4 close together, I started taking clobazam because I sometimes use them for seizure prevention.

I'm coming back off the clobazam because it's awful, I can hardly think or see straight, I am having hallucinations and am dropping off every 30 seconds from the moment I get up.

So my question is, if I came off all the meds so kept my seizures and a few weeks okay what would they do to my body? Would I be damaged?

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[Nakamova]

It's different for everyone, so there's no way to know for sure. But generally speaking, untreated seizures are more likely to escalate over time. They may start happening more frequently or change in nature to become more intense. They could shift from partial seizures to tonic-clonics. Depending on the nature of the seizures and the area they originate in the brain there could be memory-related side effects. If you lose consciousness during your seizures there could be safety issues for you or others.

I'm not trying to scare you -- I've tried twice to go med-free without any luck. Both times I enjoyed a few weeks seizure-free, and then they returned. They were tonic-clonics so I pretty much had to go back on meds. If you are determined to go off the meds, 1.Let your neuro know. 2. Taper down as slowwwwwly as possible. 3. Keep a journal of your seizure symptoms so you can tell if they are escalating in any way.

 

[Zara-Newman]

I'm not on many meds now, because I can't speak to anyone.
When I am on medication, I have one a week plus myoclonic jerks every 1-2 days.
It's been the same on all pills, apart from the odd pills that have given me more.
Being down this low on meds (which I took down slowish) , I've never felt so good.
I had 3 weeks no seizures, then three in a 24 hour period.
I kind of feel that if this is going to be a pattern it could be good.

But my mum says unmedicated seizures will leave me long term damage to my brain?

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[Zara-Newman]

Do you get what I mean? I am worried about long effect issues, of my brain is gonna get damaged or I will have serious memory issues.
I started taking clobazam after I had the 3 seizures, I'm coming off them though because I feel awful and am even having hallucinations.

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[Nakamova]

There's no way to predict if you will end up having serious memory issues. It's not a given one way or another. But if you're not having any memory issues now, and your seizures don't get any worse, then that's a positive sign. You might find this link helpful: http://www.epilepsy.com/learn/impact/thinking-and-memory/thinking-memory-and-epilepsy

One thing you could ask your neuro about is having a neuropsych evaluation done. It's a series of tests that gauge your memory and cognitive functions. The eval takes a snapshot of where your brain is right now. You could have the same test administered every few years to see if there were any significant changes one way or another.

 

[Zara-Newman]

I will ask next time I go, but as I am at the moment I am totally cut off from the doctors and neuro. So all I have for help right now is the internet and others who are like me.
Thankyou for the links, I definitely have memory loss after seizures, but not long term, when on medication I find it hard to remember information. Off the medication I can remember information better

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[Nakamova]

It does sound like right now, the best quality-of-life decision for you is to be off the meds. But definitely keep tabs on your seizures, and hopefully some time in the future you'll have access to other treatment options if things get worse.

Good luck! Be well.

 

[Porkette]

Hi Zara-Newman,
Everyone is different but I know that when my neuro purposely cut my seizure med back when I had a veeg done I had many more seizures. Right now I'm on the drug
Diamox Sequels and the drug co. has stopped making the drug for some reason stating there's a shortage so I cut myself back 500mg so the med will last longer and I've had
seizures just about every single day. Years ago when I was on Neurontin the drug caused status seizures and that in turn caused me to have more brain damage do to the amount of seizures I was having every day. Be careful and speak with your neuro. I wish you the best of luck and May God Bless You!

Sue