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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
Potiga as new med
Submitted by hlbidell on Thu, 2012-08-16 - 23:43
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.
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
Submitted by nikkiwright1 on Wed, 2012-08-29 - 13:06
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.
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
Submitted by nikkiwright1 on Wed, 2012-08-29 - 18:19
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.
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.