Epilepsy Talk

NEW Anti-Epilepsy Drugs | October 20, 2013

Although Epilepsy in America is as common as breast cancer, and takes as many lives, it is still considered an “orphan” disease, according to NORD (National Organization for Rare Diseases.)

Yet, more than 3 million Americans are affected by it — more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy and Parkinson’s disease combined.

So, as the orphan, you can see why epilepsy isn’t way up in the funding department.

If you take research funding for Autism, Parkinson’s, MS and Alzheimer’s per patient: They get $200 – $400 per person in research.

Epilepsy research gets about $35 per patient.

But, miraculously, there are 7 new drugs that have come down the line. Here’s a brief summary of each…

The latest and greatest new med seems to be Potiga which has about 100 references to its release!

Potiga (ezogabine) — is used as an add-on drug to treat partial seizures in adults. It’s the first among a class of drugs called neueronal potassium channel openers to be sanctioned for epilepsy in the United States. Side-effects: sudden changes in mood, behaviors, thoughts, or feelings;confusion, hallucinations or psychotic symptoms. Another side-effect is urinary problems.

Onfi (clobazam) — is a benzodiazepine. Clobazam affects chemicals in the brain that may become unbalanced and cause anxiety. Side-effects: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or you may feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), and depressed.

Banzel (rufinamide) — is an adjunct treatment for seizures associated with Lennox-Gastaut syndrome in children 4 years and older plus adults. Side-effects: Do NOT use Rufinamide if you have or a family member has a history of certain heart problems, or you have severe liver problems. Contact the doctor at once if you experience sudden or worsened depression, anxiousness, restlessness, irritable behavior or panic attacks.

Peganone (ethotoin tablets) — is used alone or in combination with other medications for the control of tonic-clonic (grand mal) and complex partial (psychomotor) seizures in adults and children. Side-effects: You should not use this medication if you have liver disease or a blood cell disorder. Call your doctor at once if you have any unusual bleeding, weakness, or any signs of infection; even if these symptoms first occur after you have been using the medication for several months.

Perampanel (fycompa) — newly approved by the FDA for the treatment of partial-onset seizures in patients with epilepsy ages 12 years and older. Side-effects: irritability, anxiety, aggression, weight increase, fatigue, weakness, dizziness, balance disorder, loss of muscle coordination, blurred vision, upper respiratory tract infection.

Sabril (vigabatrin) — is used in combination with other medications to treat complex partial seizures in adults and adolescents who are at least 16 years old and as monotherapy for infantile spasms. Usually given after other anti-epileptic medications have been tried without successful control of seizures. Side-effects: Before you take Sabril, tell your doctor if you have any vision problems, such as retinitis or glaucoma. Some people have developed mild to severe vision problems. Vision loss may be permanent, and eye exams are necessary on a regular basis. Call your doctor at once if you have new or worsening: depression, sudden mood or behavior changes, thoughts about suicide or hurting yourself.

Viibryd (vilazodone hydrochloride) — is used for the treatment of major depressive disorder. Side-effects: Do not use Viibryd if you have used an MAO inhibitor. To make sure you can safely take Viibryd, tell your doctor if you have: liver or kidney disease, a bleeding or blood clotting disorder, seizures or epilepsy, low levels of sodium in your blood (hyponatremia), bipolar disorder or a history of drug abuse or suicidal thoughts. (Kind of a contradiction, wouldn’t you say?)

These new meds may or may not be the answer for you. But where there’s research, there’s hope. And that, in itself, in a good thing.

Other articles of interest:

11/8/2013– New Seizure Drug Wins FDA Approval — Aptiom (Eslicarbazepine) has been approved by the FDA for adjunctive treatment of partial seizures. Side-Effects: Common side effects of Aptiom listed by the FDA included dizziness, drowsiness, nausea, headache, double vision, vomiting, fatigue, and loss of coordination. http://www.medpagetoday.com/Neurology/Seizures/42820?xid=nl_mpt_DHE_2013-11-09&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g678262d0r&userid=678262&email=pfjohnson@comcast.net&mu_id=5845719

Anti-Epilepsy Drugs Lose Effectiveness Over Time… https://epilepsytalk.com/?s=anti-epilepsy+drugs+lose+effectiveness
NEWS! AED Safety Risks Withheld https://epilepsytalk.com/2013/08/18/news-aed-safety-risks-withheld/
The Trouble with AEDs https://epilepsytalk.com/2013/03/11/the-trouble-with-aeds-2/
Epilepsy Medication Conflicts… https://epilepsytalk.com/2011/11/22/epilepsy-medication-conflicts/
Anti-Epilepsy Drugs Lose Effectiveness Over Time… https://epilepsytalk.com/?s=anti-epilepsy+drugs+lose+effectiveness
NEWS! AED Safety Risks Withheld https://epilepsytalk.com/2013/08/18/news-aed-safety-risks-withheld/
The Trouble with AEDs https://epilepsytalk.com/2013/03/11/the-trouble-with-aeds-2/
Epilepsy Medication Conflicts… https://epilepsytalk.com/2011/11/22/epilepsy-medication-conflicts/

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  1. Have you heard of the new drugs which are cannabis based? (Oct. 4th NYU conference re. Cannabidols..) G.W. Pharmaceuticals will be introducing them. CBD is the main ingredient. Cannabis which has a high CBD/low THC ratio has few side effects and can be very effective for seizures. (CNN special Dr. Sonja Gupta…)


    Comment by Kristi Solman — October 21, 2013 @ 9:51 PM

  2. Those research dollar stats always piss me off good..


    Comment by Doug — October 22, 2013 @ 3:26 AM

  3. Unfortunately, it takes an enormous amount of money for research and development (R&D) for ANY product in ANY field.


    Comment by Phylis Feiner Johnson — October 22, 2013 @ 8:59 AM

    • I know, it just bugs me that so many people are affected by epilepsy and research dollars spent aren’t proportional.


      Comment by Doug — October 22, 2013 @ 11:56 AM

  4. Maybe, maybe not.

    It takes loads of money to bring a product to market…not to mention the R&D.


    Comment by Phylis Feiner Johnson — October 22, 2013 @ 1:37 PM

  5. Please note, I am not promoting /advocating the drug company. Nor is my intention to’ dish’ them! I am forever appreciative for ALL the people who are dedicating their lives to helping solve the Epilepsy puzzle. I do however think it adds ‘credibility’ in some ways to what many patients already know! High CBD low THC cannabis can be a very beneficial ‘supplement’ to regular anti-seizure drugs…and without any other drug interactions, or negative reactions. Again, I am referring to the high CBD 20+/low THC-1 cannabis. FYI, another cannabis based drug from the same company is already available in Canada and the U.K., Sativex, closer to a 1-1 ratio, for cancer and M.S.? T
    hink this is also close to US approval/testing.

    How wonderful would it be to actually be able to grow your own medicine, even if it is part of a larger pharmaceutical mix? Who holds the only patent on CBD? Hmmm,..


    Comment by Kristi Solman — October 23, 2013 @ 8:02 PM

  6. Hi, Phyllis,
    I wasn’t sure where to put this question, but here goes: what do people do when they keep striking out on AEDs? My son has had horrible side effects and/or paradoxical reactions to Trileptal, Vimpat, Keppra (twice), Depakote, and now Topamax. His neurologist (whom I like better than any of the others we have seen) now wants to try him on Fycompa. But the side effects scare me to death, and are the very same things we are trying to avoid! What do people do in our predicament?


    Comment by Martha — December 8, 2014 @ 3:08 PM

  7. Hi Martha,

    Have you tried Vagus Nerve Stimulation?


    Trigeminal Nerve Stimulation


    Or any of the three anti-epilepsy diets?


    There are alternatives. Not any single one works for everyone, but you might read the articles and consider talking to your neuro about them.


    Comment by Phylis Feiner Johnson — December 8, 2014 @ 5:46 PM

    • Thanks, Phyllis. The patient is on the autism spectrum, however. Does VNS require a high level of cooperation from the patient? That wouldn’t be possible in this case. Also, isn’t the Ketogenic diet more suited to very young children? I will look into the others. My son has gained a lot of weight from Depakote, and it never came off when we discontinued that drug (due to elevated blood ammonia level). He is now on Topamax, which worked well for awhile, but now we are having all the crazy behaviors that Keppra caused! Doc is recommending Fycompa, but when I read the possible side effects, it scared me to death!


      Comment by Martha — December 8, 2014 @ 9:14 PM

  8. You’re right Martha, I don’t think the VNS would work for him.

    The Ketogenic Diet actually works for people of ALL ages, although it’s most often used by children with a good success rate.

    I think the best place to start is the Modified Atkins Diet.(M.A.D.) It’s user-friendly, easy and not difficult to follow. Plus the sacrifices are few.

    Why don’t you run it past your neuro to see what he/she thinks. And check for vitamins / supplements that may be needed. (A nutritionist would be good for advice.)


    Comment by Phylis Feiner Johnson — December 9, 2014 @ 9:08 AM

  9. Do you think we are missing the boat regarding an abdominal epilepsy diagnosis? I see in many other forums where epileptics talk about autonomic neuropathy, I then wonder “how many of them take miralax”? Miralax is meant to be used short term while many GI doctors and other physicians are prescribing this toxic medication to our children for years, maybe even a lifetime. Look at cancer.gov and their perspective regarding long term laxative use. Our son was diagnosed with temporal lobe epilepsy 14 months ago. He has simple partial seizures that are consistent with the Canadian government description of abdominal epilepsy. The main ingredient in miralax is polyethylene glycol(peg). The first anti-seizure medication he was prescribed was trileptal; it contained PEG and he had several seizures while on trileptal. Then some 4 months later, GI instructs us to do a clean out using miralax, several more seizures insued. Lastly, 4 months later, they admit us into the hospital and do a clean out with an NG tube and golytely(contains PEG) he had 21 seizures in 9 days. Finally we learned all about PEG but was it too late? Now he suffers from OCD, anxiety, social behaviors, aggression/rage almost bi-polar. None of this was present prior to the diagnosis.


    Comment by Mike Koehler — July 10, 2015 @ 8:49 PM

  10. Abdominal epilepsy is a real thing, often overlooked. However, to confuse this with colon problems is just plain ignorant.

    You know the story of PEG. http://www.webmd.com/drugs/2/drug-56192/peg-lyte-oral/details

    And you know how inappropriate it was.

    Who in the world tested him? What kind of tests did he have? https://epilepsytalk.com/2010/09/13/beyond-eegs%E2%80%A6diagnostic-tools-for-epilepsy-2/

    Why didn’t these goons see that their approach wasn’t working?

    Where were the neurologists? Asleep at the wheel?


    Comment by Phylis Feiner Johnson — July 12, 2015 @ 7:59 PM

  11. why is epilepsy is not talked about like diabets. isn,t epilepsy important, more people who never had it is now getting it,out of the blue and don,t know what they have, or don,t know what to do.


    Comment by michele metzger — June 24, 2016 @ 2:53 PM

  12. Hi Michele,

    Take a look at this article:

    Where’s The Funding? Epilepsy As An Orphan



    Comment by Phylis Feiner Johnson — June 24, 2016 @ 3:45 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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