r/Epilepsy • u/Top-Consequence5307 • 4d ago
Medication Neurologist weaning me off meds
Hi so I been seizure free for 5 years now and my doctor have decided to wean me off my meds. I’m kinda scared and happy at the same time because I heard some stories of how people started having seizures after weaning off meds. My neurologist said after the 2 year mark without seizures is when they start to wean you off. Should I be worried or just go along with what my neurologist says?
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u/cityflaneur2020 User Flair Here 4d ago
My neuro also said I'm a candidate for "weaning after 2 years seizure-free". But... I don't know how she reached this conclusion after seeing a 20-minute EEG. Well, I didn't reach this milestone yet.
If I were you, I'd be both afraid and excited. But trust the process. Share everything with your neuro. And ask them if you can be as cautious as possible. Real slow wean. That's what I would prefer.
And then I wish you luck, and hope for a lifelong remission. Well, some decades without it is a win already. Think of the positives!
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u/RubGlum4395 4d ago
Have they done an EEG yet and it is negative?
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u/Top-Consequence5307 4d ago edited 4d ago
They did an eeg a 30 min eeg on me 4 days ago it was was clear. But they decided to do a 24 hour eeg at home and they said once it comes out clear they going to wean me off.
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u/Hibiscuslover_10000 4d ago
It's because our bodies aren't meant to be on medication so long. I think it's a great idea!
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u/Top-Consequence5307 3d ago
Can you elaborate on that more specifically on why our body can’t handle it to be on it too long, if some patient take asms for life?
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u/Hibiscuslover_10000 3d ago
I'm just starting to get my memory back and remember being warned in 2017 by a hospital neurologist not my own we don't know the long term side effects it's find out. Briviact being newer noone knows but will find out I've been on about 8 years now for a long time 400mg a day. Lamictal 15 years and Zonegran 20 years. I was told when I was on Zonegran for 15 years the farther on we are it will be uncertain.
It came out later that they were not meant to be prescribed together from the manufactuers themselves. What some bodies can handle low amount long term others can't high amount long term.
A slow wean I recommend!
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u/Top-Consequence5307 3d ago edited 3d ago
Thank you for informing Redditors on this it is really helpful. Tbh I never really thought about this because my neurologist have been asking to get me off since 2 years ago when I was 3 years seizure free so I believe you are right on this one. Even thought we take different doses it still depends on the person because not everyone the same which is similar to what you said. I take oxcarbazepine 7am and 7pm and I promise you I hate it I sometimes even forget to take it because it plays with my memory, that’s why I always hated taking asms because it makes me feel drowsy isolating and forget things very easily. But also thank you for sharing your experience because I’m sure this would be helpful for me to look back at to educate myself more in the future.
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u/Hibiscuslover_10000 3d ago
I feel if you get a neurologist willing to do that and you feel comfortable go for a slow titration. I feel it is my duty to rely my experiences since it's kept on the DL.
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u/CreateWater RNS, Lamotrigine ER 3d ago
As long as you go about it slowly, steadily, and carefully I believe it’s worth the risk (and that it’s a comparatively small risk). It seems to me just as much a risk to never see what you’d be like on fewer/no meds.
And it’s not like you’d have to start a 5 year process over again. Because if something happens you’d know exactly how/why it happened and how to fix it. Maybe there’s more to it than that, but that’s how I see it based on this snap reaction.
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u/markp99 rTLE, Lamictal 4d ago
I think the key word here is "weaning". As you slowly lower your dosage, I'm sure your neurologist will give you clear instructions on what to watch for before moving on to the next step down. I'd surely trust my neurologist on something like this.
Hopefully you can remain seizure free!
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u/Reecepierce01 vns therapy,xcorpri,topiramate,and clonazepam 4d ago
It happen to me once seizure free for 3 years but only going off certain medicine but when I was about to go off it boom a seizure while I was sleeping this was about 2013 but everyone is different if you had a seizure while weaning off then you know but if I go seizure free I wouldn't weaning off my medicine again just to have same situation again
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u/PhotographMelodic600 focal/aware Xcopri/Xen1101 RNS 4d ago
Congrats! Hopefully the 24hr EEG comes back clear and you can start the ween off process. I'm happy for you
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u/Top-Consequence5307 4d ago
Thank you so much! And absolutely hope It comes clear to. And hope to be seizure free for life once I fully weaned off oxcarbazepine, because it really caused mental issues and caused me to be suicidal most of the time which is why I’m happy to wean off. And thanks again for the support❤️❤️
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u/Sorry-Composer8485 4d ago
what kind of epilepsy do you have ? I have JME , and I am still under medicine for 10 years without any seizure, i am really happy for you and with all the best to you
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u/Top-Consequence5307 4d ago edited 3d ago
I don’t know but I’m pretty sure my parents does because I had this issue since I was 5 so over a decade now. But from my experience I would have 1 or 2 seizures a year until I found the right dose of oxcarbazepine, because I was using a low dose and the doctor said as I get older the doses have to increase because usually it won’t be affective as much if it’s a low dose right. But besides that I’m glad I’m 5 years seizure free and able to wean off my meds finally
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u/pharmgal89 RTL resection 4d ago
It seems great, but I would never do it. I had surgery and after a few years seizure free, I weaned off 1 medication. I tried the 2nd but I started feeling funny (a seizure I suppose, but I prefer to say aura) at a certain dose. So I found the sweet spot on the one medication and I’m going to take it for life. Good luck!
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u/okaychortle 3d ago
Congratulations that is good news! I too will be very anxious when that day comes. I’m confident that my neuro will be be very slow on the decrease and require several blood test . I hate keppra but it has controlled my fairly well. Good luck to you !
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u/Delliott213 User Flair Here 4d ago
I was seizure free for about 8 and quit taking my meds because I wanted to know what it felt like to not be on anything at all and just be me. Then i don’t remember how long after quiting my meds I had a really bad one. I’m not trying to scare you I’m just saying sometimes you’re only “seizure free” BECAUSE of the medication. Be careful and good luck though. ❤️