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Taking Potiga

My 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

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!

Re: Taking Potiga

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

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

Hello Tonya,

My goodness your foundation is amazing!  I am so thankful to learn about your journey volunteering in the research of Potiga.  I hope that you and your daughter continue to see healing and less side effects through Potiga.  I can't thank you enough for your comments.  I was nervous about Potiga until you and Naori told me what to look forward to.  Because I've also tried nearly every AED, it's so encouraging to learn the Potiga has been your best treatment after taking the other AEDs on the market.  I will continue to be a frequent visitor of your site and share updates of my progress with you.

Thank you & Take care. 

Potiga as new med

Hi Nikki,

I'm so glad to hear from someone else who is beginning on the Potiga track! Yes, I started slowly moving up the milligram tiers - the research seems to show that the most side effects occur when changing doses.  I spent about 6 weeks getting up to my maximum dose.  I just finished my PhD so I waited until after graduation in May to add this AED, which wasn't much of a graduation present.  The side effects for me started with some disorientation and vertigo.  I had a lot of nausea, but I've found that with most seizure meds.  I have never had such fatigue with any medication until Potiga.  I had to sleep at least 10 hours a day.  The best thing is that Potiga has decreased my seizures dramatically - I have gone from about 20-30 partial and a few grand mals a month, to more like 10 partials that are much shorter.  One of the things I did experience was a lot of disorientation with my mid-day dose (I think I avoided this with my nightime and early morning dose because I was asleep).  My mid-day dose completely interrupted my day, where I wandered around disoriented and had a lot of trouble focusing.  Had this occurred during my work day there is no way I would have been able to be coherent.  My doctor lowered my midday dose and added to my night time dose - this might help for you if you experience the same issues during the day.  The only other significant side effect is clumsiness - I've never been a clumsy person but Potiga has caused me to trip and walk into things all the time - I have plenty of bruises :-)  Overall, it might seem like a lot of side effects for one med but I have tried a lot of meds to reduce seizures and this has helped immensely.  In addition, after being on Potiga for about two months my side effects are beginning to ease.  I can deal with walking into tables if it means that I spend the rest of the day seizure-free. Let me know what is going on with you and your Potiga-life. 

Re: Potiga as new med

Hi Naori,

Congratulations Dr. Naori! Thanks so much for your advice.  I'm thankful that Potiga has been a great med for you.  I began taking Potiga last week.  I'm slowly working up to my max dosage, which will be in mid Oct, and everything seems to be going fine.  Now I know what symtoms to look forward to in the upcoming weeks.  I still have short partials everyday but nothing worse.  I know what you mean about needing nearly 10 hours of sleep everyday.  Before Potiga and with my current meds, if I don't sleep up to ten hours overnight, I have to take mid-day naps unless I stay extremely busy.  Other medications that I have taken in previous years would make me so sleepy that I would feel nearly nonfunctional (and sometimes shameably falling asleep in my office) during the day. Thank goodness my colleages are patient and understanding.  Now I'm taking leave from work while going through this newest cycle of treatment.  I've been clumsy and bruised since childhood!  As an adult it's frustrating but I learned to slow my walking and not do other tasks too fast.  You will certainly be okay.  If we don't break anything, sometimes clumsiness can be a humorous part of our day :) I will keep you updated on my Potiga journey and I look forward to staying in touch.  Take care.

Re: Taking Potiga

My son has been prescribed Potiga and will be starting this medication tomorrow.  Thanks to everyone for your feedback on how the medication has helped and also the common side effects.  My son is 18 and taking a very light load at a local junior college, however for the past 2 weeks he has experienced clusters of seizures 5 out of the 7 days in the week.  He is currently on a host of medicines, Keppra, Vimpat, Depakote and Clonazapem for prolonged seizures.  We are hopeful that Potiga will offer some relief from the seizures and so that he can slowly get off some of these other medications.  Thanks again and this is my first time ever posting on a discussion board.  I will be checking back to see if there are any new updates and to let everyone know how our transition on the new med goes.

I have done lots of research on this med and hopefully these side effects don't crop up too severely.

Re: Taking Potiga

Naori,

I wanted to update you on my progress. I took Potiga for over three months before my doctor decided that it was not providing the best treatment. While taking Potiga, my daily partial seizures did not decrease and I was stiill having grand mal seizures near the days of my monthly period.

I began taking Onfi at this beginning of this year. It's doing okay without any severe side effects.  I take Onfi, Dilantin, and Lamictal. Onfi seems to have stopped all of my grand mal seizures. However, I still have the same partials daily and now also while sleeping. Thankful to not have the grand mals, but we're still searching to find my best treatment for the partials.

I took a neuropsycological evaluation last week and should get my full results by next month. I am diagnosed with left temporal lobe seizures and trying everything to avoid surgery.

I hope that Potiga continues to be a great treatment for your seizures. How are you?

Take care,

Nikki

Re: Taking Potiga

I've been on it for about a year. Started at 100 mg 3X a day along with Oxcarbazepine (600mg morning, 600mg afternoon, 1200mg night). My seizures occur at night about once a month. My neuro just increased the Potiga to 150mg about a month ago, and so far, success. I had been taking Vimpat before the Potiga, and it was driving me crazy. Never knew from one day to the next if I was going to have double vision, the shakes, or just feeling downright drunk. Potiga has been the best success for me so far. I don't seem to be having any side effects from it so far.