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Taking Potiga
Fri, 06/08/2012 - 22:59My name is Naori and I recently started taking Potiga (an AED to my other meds, Lamictal & Vimpat). I was wondering if anyone else has started this med - I know it is very new - but I wanted to see how others are responding to it. So far it has decreased my seizure activity, and also made my seizures less severe. However, the time period of adjusting to the med has been somewhat long, with significant side effects. One of the most positive things is that it finally helps me sleep at night. One of the negative things is that I feel like I am asleep all day. Love to hear anyone else's experience with Potiga so far.
Comments
Re: Taking Potiga
Submitted by B117 on Thu, 2012-08-16 - 18:21
Hello Ladies ( Nikki and Naori),
I have been taking Potiga for over 7 years. I was in a study before the FDA approval. The drug at that time was named Retigabine. I know Potiga has different names in different countries, so in Googling you may find the names and reach more people.
I and my daughter have experienced side effects no other person has experienced. I beleive this is all because we have a rare form of seizure disorder and an inner ear disease ( Meneire's Disease) that may effect the ED. For more on the side effects I experience, read this article: http://nationalseizuredisordersfoundation.org/retigabine/
Potiga brought me from a recorded 150 seizures a month to a manageable 30 seizures a month. Now Gran mal seizures only occur about every three years - no reason why. All in all, Potiga has helped me more than any other AED. Although the side effects for me can be bothersome at times, the control is worth the side effect issues. One of the side effects to watch for is a delay or trouble in urinating. This issue is not mine as I was born with this trouble. But what needs to be considered is your own personal comfort - which is more important to you, seizure control or AED side effects? Discuss your concerns with your doctor and family
I have given every AED on the market a chance and Potiga has served me best. Now I am down to 2 AEDs daily: Potiga and Keppra. With other therapies such as stress reduction, diet, exercise, and medition I know I will be seizure free.
In closing, I want to invite each of you to consider visiting National Seizure Disorders Foundation ( http://nationalseizuredisordersfoundation.org and when on FaceBook, look up NSDF Community for more support. Always remember, you are not alone. You have 65 million people worldwide emapthizing with you and National Seizure Disorders Foundation ready to help you learn to live peacefully while experiencing seizure disorder.
Peace&Prosperity -
Terrific Tonya Heathco, Founder
National Seizure Disorders Foundation
Hello Ladies ( Nikki and Naori),
I have been taking Potiga for over 7 years. I was in a study before the FDA approval. The drug at that time was named Retigabine. I know Potiga has different names in different countries, so in Googling you may find the names and reach more people.
I and my daughter have experienced side effects no other person has experienced. I beleive this is all because we have a rare form of seizure disorder and an inner ear disease ( Meneire's Disease) that may effect the ED. For more on the side effects I experience, read this article: http://nationalseizuredisordersfoundation.org/retigabine/
Potiga brought me from a recorded 150 seizures a month to a manageable 30 seizures a month. Now Gran mal seizures only occur about every three years - no reason why. All in all, Potiga has helped me more than any other AED. Although the side effects for me can be bothersome at times, the control is worth the side effect issues. One of the side effects to watch for is a delay or trouble in urinating. This issue is not mine as I was born with this trouble. But what needs to be considered is your own personal comfort - which is more important to you, seizure control or AED side effects? Discuss your concerns with your doctor and family
I have given every AED on the market a chance and Potiga has served me best. Now I am down to 2 AEDs daily: Potiga and Keppra. With other therapies such as stress reduction, diet, exercise, and medition I know I will be seizure free.
In closing, I want to invite each of you to consider visiting National Seizure Disorders Foundation ( http://nationalseizuredisordersfoundation.org and when on FaceBook, look up NSDF Community for more support. Always remember, you are not alone. You have 65 million people worldwide emapthizing with you and National Seizure Disorders Foundation ready to help you learn to live peacefully while experiencing seizure disorder.
Peace&Prosperity -
Terrific Tonya Heathco, Founder
National Seizure Disorders Foundation
Re: Taking Potiga
Submitted by ryanlaird on Fri, 2012-08-17 - 22:32
Hi: My wife's been on Vimpat but not Potiga so I can't make any kind of a worthwhile comment on it but if you want to read about our success with a non-drug remedy my blogg on this site's http://my.epilepsy.com/node/999158
Regards, Ryan
Hi: My wife's been on Vimpat but not Potiga so I can't make any kind of a worthwhile comment on it but if you want to read about our success with a non-drug remedy my blogg on this site's http://my.epilepsy.com/node/999158
Regards, Ryan
Re: Taking Potiga
Submitted by nikkiwright1 on Thu, 2012-08-16 - 16:56
Hi,
My name is Nikki and my Neurologist recently prescribed Potiga for me. I also take Lamictal, Depakote and Dilantin. When I begin Potiga, I will slowly decrease and stop taking Depakote. I haven't began my Potiga because I'd like to ask how it's working for others. This will help me know what to expect.
I'm so glad it is helping you Naori. In addition to drowsiness, what are the most common side effects you experience? Did you start a very low dose and increase slowly? Potiga is nearly the only AED I haven't tried yet. So I hope this goes well.
I will love to know what everyone thinks of Potiga. Thanks so much!
Hi,
My name is Nikki and my Neurologist recently prescribed Potiga for me. I also take Lamictal, Depakote and Dilantin. When I begin Potiga, I will slowly decrease and stop taking Depakote. I haven't began my Potiga because I'd like to ask how it's working for others. This will help me know what to expect.
I'm so glad it is helping you Naori. In addition to drowsiness, what are the most common side effects you experience? Did you start a very low dose and increase slowly? Potiga is nearly the only AED I haven't tried yet. So I hope this goes well.
I will love to know what everyone thinks of Potiga. Thanks so much!