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Naori

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Hi Everyone,

My name is Naori and I am new to this site, and new to talking about others with epilepsy in general. I am a professor, musician, and poet and have had epilepsy all my life. My epilepsy has gone through severe and not so severe times, but now is pretty bad. I'm having about 14 seizures a day without much relief. I'm on Lamictal, Vimpat, Aptiom, Versed for severe grand mals and Ativan for sleep seizures. I was hoping I could get some advice on Aptiom. I feel like my doctor has a tendency to put me on whatever drug is new, which results in serious side effects and eventually makes everything worse.

A year and a half ago he put me on Potiga and I ended up in the hospital due to toxic levels of the drug in my blood. While I was on it I was a zombie, could barely function - bad head aches, vertigo, began to have extensive complex partials and occipital seizures and then severe grand mals - and coming off of Potiga was awful. Now he is putting me on Aptiom working up to 1200mg. Has anyone taken this? Do you know anything about the success or side effects of the drug? I can't find many testimonies about how it works and I'm afraid it's gonna be just another Potiga that will immobilize me. Thanks for any help you can give and it's really nice to meet everyone.
 
Hi Naori,

I really can't give you any info about Aptiom but I can relate to being on just about every drug out there.

I was diagnosed with epilepsy about 12 years ago when I was 27. I was having at least one seizure a day, usually more. My neuro tried all sorts of different drugs, dosages and drug combos. Some worked, some didn't do anything and some caused more seizures. Some I couldn't deal with the side effects so even if they were working I had to stop taking them.

I got a VNS (vagus nerve stimulator) about 8 years ago. It helped with my seizures a lot but I still had to take meds. I had to go through the whole med thing again trying to figure out what meds, combos and dosage thing again. Lots of fun.

I'm sure you'll get a lot of help and answers here.

Nice to meet you!
 
Hi Naori,
Welcome to CWE

I've had epilepsy more than 50 years and Ive been on about 22-23 different drugs.
I had brain surgery a RTL in Montreal,Canada, and I've also had the VNS and it also stopped doing what it was suppose to after I had my 2nd battery change and had it quite a while.
You can refuse to try a drug I know I have. I researched Potiga and decided with my other health problems and it side effects I didn't care to go for it.
I'm refractory and just hhave put up with my seizures.
 
Hey Valerie and Belinda,

Thanks so much for writing back! It's so good to relate to the frustrating journey it is to try med after med and never get better. My epilepsy is also refractory which is hard because you have to live with the knowledge that medication will never provide relief. I try not to let it define me, but when you're seizing all the time it's pretty hard not to have it consume your life. I am hesitant about Aptiom but I trust my neurologist; he's been trying to get me to try a new med for a year but I've refused because another med change would mean I would have to stop teaching (I only teach part time). However, it's imperative now so I'm gonna do it in between semesters and hope it improves this situation.

Belinda, you were smart to stay away from Potiga - I'm pretty tough and if the benefits of a med outweigh the side effects I'll probably hang in there, but Potiga was so much worse. I would take my afternoon dose and literally not be able to move, think, sometimes I even drooled. In the end it gave me more seizures. Part of why I'm hesitant about Aptiom is that when I started Potiga I had a lot of trouble finding testimonies on it at the time. It was only later that a lot of people said it didn't work for them. I have also heard similar things about VNS being ineffective long term so I have opted out of that. Have either of you tried CBD oil? I'm in NY so it's not available yet but so many people who are refractory have found it really helpful.

Anyways, I'd love to hear more about how you both deal with things in general - work, family, etc. Even though I've had epilepsy for 30 years, I honestly have almost no contact with the rest of the epileptic world.
 
I take CBD oil and I'm fairly certain that it does help. I quit taking the tincture due to all of the brands having too many other ingredients like sugar alcohols and such. I still take the capsules and an oil vaporizer pen.

Welcome to CWE, Naori.
 
Naori,

I'm med resistant to so many drugs it's not funny.
I've tried my share of drugs and the only things that even help me in least bit are phenobarb Tegretol I've been on for 40 years.my neuro wants to try me on the oil but it's just been approved in Georgia my state and they haven't figured out how were going to get it. I have heart problems and have to watch the side effects of other drugs.That's how I got my heart problems because of Darvocet most likely.
I have partial seizures now but I have a tonic-clonic-absence,generalized,atonic seizures. My seizures are changing all the time.
 
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