Epilepsy Talk

Potiga — The First AED of Its Kind… | September 24, 2012

The latest and greatest new med seems to be Potiga (Ezogabine) which is certainly promising news for the epilepsy community. Developed for adults (18 or over) as an add-on drug for partial seizures, it’s a revolutionary new anti-seizure medication which prevents seizures in a way completely different from currently existing AEDs.

The way it appears to work is by enhancing the potassium currents mediated by a particular family of ion channels known as KCNQ. By activating these specific channels on nerve cells, Potiga is thought to stabilize these nerve cells and reduce brain excitability.

It may also have an impact on another neurotransmitter, known as GABA, which is known to cause the nerve cells to calm in some manner. There are several other seizure drugs that work via increasing GABA in the cell; however Potiga will be the first drug to prevent seizures by the potassium channel mechanism.

In three clinical studies, Potiga reduced seizure frequency by 27% for 600 mg doses…25% at 900 mg…and up to 24% seizure reduction for 1200 mg per day. Supplied in 50, 200, 300, and 400 mg size pills, the medication is meant to be taken three times a day, starting at a low dose and titrating up if necessary.

The initial dosage should be 100 mg, three times daily (300 mg per day). The dose can then be increased at weekly intervals by no more than 50 mg, three times daily (increasing the daily dose to no more than 150 mg per day) up to a maintenance level of 200 mg to 400 mg three times daily (600 mg to 1,200 mg per day), based on individual patient response and tolerability.

But lower doses may be recommended for people with liver or kidney disease. Similarly, lower dosages are recommended for people over the age of 65. For older individuals, the usual starting dose is 50 mg, taken three times daily and the maximum amount is 250 mg taken three times daily.

Potiga can interact with Carbamazepine, Dilantin (phenytoin), and Lamictal (lamotrigine), decreasing the amount of Potiga in your system by 31% to 34%. So, an increase in the dose should be considered when adding Potiga to those drugs.

It can also cause a “relaxed bladder” which results in urinary retention, or difficulty in emptying the bladder fully. When that occurs, it’s generally within the first six months of treatment, although it can also occur later. Because of the risk of urinary retention, urologic symptoms, such as the inability to start to urinate, weak urine stream, or pain with urination, should be carefully monitored. Urinary retention is a unique side-effect among medications used to treat seizures.

In clinical trials, the most common adverse reactions reported by patients taking Potiga included: dizziness, fatigue, confusion, vertigo, tremors, abnormal coordination, balance problems, blurred vision, memory impairment, and confusion.

Most of the adverse reactions appear to be dose related, especially neuro-psychiatric symptoms, such as anxiety, depression, confusion, hallucinations, psychotic symptoms and suicide thoughts. But, when Potiga is discontinued, these symptoms usually resolve within seven days.

There are also studies underway to see if Potiga might also be a potential treatment for migraine, neuropathic pain and some other neurological conditions.

Of course, since it’s such a new drug, the jury is still out on long-term ramifications. But hopes are high in the scientific and medical community that this indeed may prove to be a new and effective add-on treatment for partial seizures.








  1. For several years I was on Potiga, through the study and beyond. Recently under Dr supervision I weaned off the AED due to extreme and uncommon side effects. With side effects gone my quality of life has increased.

    Phylis, YOU are a blessing!


    Comment by Terrific Tonya Heathco — November 2, 2012 @ 12:04 AM

  2. Hey Terrific! Nice to see you…

    Sorry Potiga didn’t work for you. Do you want to share the side-effects with us — not. (Either is ok.)


    Comment by Phylis Feiner Johnson — November 2, 2012 @ 9:53 AM

    • Potiga made my daughter hyped up, keppra did the same thing. Not the drugs for her. She is on topamax and Lamictal XR .


      Comment by Susan Hamlin — December 3, 2012 @ 1:23 PM

  3. Potiga did not work for my daughter. The side affects were hyperness and aggressiveness. She had the same problem with keppra.


    Comment by shamlin57 — December 3, 2012 @ 1:26 PM

  4. Sigh. It seems you struck out twice.

    Have you heard of Perampanel?

    I don’t know if it would be appropriate or not, but it’s a new type of anti-epilepsy medication that selectively targets proteins in the brain, controlling excitability, and has been developed by Johns Hopkins led researchers and recently approved (finally) by the FDA.

    The purpose of this revolutionary new drug is to significantly reduce seizure frequency in people whose recurrent seizures have been resistant to even the latest medications.

    In a multinational, blinded, placebo-controlled trial of more than 700 people with uncontrolled partial-onset seizures, roughly one-third of participants saw the frequency of their seizures fall by more than 50 percent when they were given 8 milligrams a day of Perampanel.

    Those in this trial typically had about 10 seizures a day!

    For more information, go to:

    Perampanel — New Hope For Those With Uncontrollable Seizures — Newly Approved by the FDA



    Comment by Phylis Feiner Johnson — December 3, 2012 @ 1:48 PM

    • I have read about the new drug Perampanel but have not yet asked the neurologist about it. Our last visit with him was just a couple of weeks ago and he added Lyrica for my daughters headaches with hopes that the Lyrica may also help with her complex partial seizures. So far no luck but we aren’t at the full dose yet. Thank you for your quick response!


      Comment by Susan Hamlin — December 4, 2012 @ 12:35 AM

      • Phylis,
        Aggressiveness – have her B6 levels checked or talk to her doctor about adding B6.
        I wish I had known about Permapanel a few months back. Two months ago, Jesyka -my daughter- was told her seizure disorder was medication resistant. She was on 5 meds for seizures, including Potiga. 5 days ago she passed away from her last seizure. For almost ten years I had a tugging at my heart these seizures were related in some way to proteins. It was her mission to find answers for others. Now i see as she is transformed into Spirit, she continues to help others.

        Where can I find more info about Permapanel?


        Comment by Terrific Tonya Heathco — December 4, 2012 @ 3:01 PM

  5. Glad to see you’re on top of things, Susan. Good for you!

    One word of caution about Lyrica. (My husband is on it for his debilitating neuropathy.)

    It can pack on unwanted pounds. Yes, he can’t go without it, but that has been the side-effect for him.


    Comment by Phylis Feiner Johnson — December 4, 2012 @ 11:40 AM

    • Lyrica can also create suicidal thoughts unrecognized because they are not ordianary. I was on Lyrica for about a year. Noticed about 30 minutes after each dose I just wanted to walk out of my home and keep walking. Not telling anyone, just leaving. My Epi said that is a form of suicidal thought subconciously because I was trying to “kill off” my current happy life. I stopped taking Lyrica immediately and have never had those thoughts again. Please be careful.


      Comment by Terrific Tonya Heathco — December 4, 2012 @ 3:04 PM

      • As if I’m not scared enough of Arthur’s depressions.

        Some of them are a result of the persistent pain of his neuropathy (from his butt to his toes), but he’s on so many drugs, it makes me wonder.

        It’s changed his life so much over the past five years. And certainly, not for the better. 😦


        Comment by Phylis Feiner Johnson — December 4, 2012 @ 4:27 PM

      • The comment on Lyrica was meant to create awareness as it does not affect every seizure survivor on Lyrica. Just be aware, don’t be scared. I’m here for you.


        Comment by Terrific Tonya Heathco — December 4, 2012 @ 5:02 PM

  6. For more info about Perampanel, go to:

    Perampanel — New Hope For Those With Uncontrollable Seizures — Newly Approved by the FDA



    Comment by Phylis Feiner Johnson — December 4, 2012 @ 4:29 PM

  7. Terrific Tonya, I wanted to take the time in a separate post to express my condolences over the untimely death of your daughter.

    Sometimes life seems so unfair. Or as Billy Joel put it: “Only the good die young”!

    I hope happy memories, time and love will heal your wounds.


    Comment by Phylis Feiner Johnson — December 4, 2012 @ 4:32 PM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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