Crazy Stuff

Went to see my neurologist yesterday- epileptologist- to be specific. He’s been my doc for close to 20 years. I’ve never really been able to explain to him how my seizures felt, even after two observational studies where I stayed in a room for days with electrodes glued to my scalp and a camera trained on me 24/7. I couldn’t describe them to him yesterday either even when I was hit with a cluster of seizures while sitting in front of the doctor.

But that wasn’t the strangest part. I’ve had a series of MRIs over the years in an attempt to find an anomaly in my brain that may be the underlying cause of my seizures. Multiple scans have failed to locate any major abnormality. 

Then yesterday, doc tells me my most recent scan showed damage in my left temporal lobe- likely due to a STROKE I suffered in my youth. What say you?? And why wasn’t this located earlier? 

In any case, more invasive tests are now being planned (including placing electrodes directly on my brain) to determine if this is indeed the epilepsy source and map the exact location causing the seizures. A few additional tests remain, but a potential upcoming decision will be: do I want part of my brain surgically removed? 

Posted in Uncategorized | Leave a comment

Son of Sabril

Sabril is a very effective anti-epileptic drug that won approval in the US only in August 2009 after a tortured application process. It is indicated for the treatment of infantile spasms and adults with who have run out of treatment options. The reason for such a limited label is the drug’s very serious side-effect; up to 40% of patients may lose some or nearly all of their vision. What a trade-off to be seizure free!

Matthew Herper of Forbes gives a good background of the drug’s path to market here.

But there is reason for hope. A small biotech called Catalyst is working on a follow-up compound to Sabril that may have its efficacy without the ocular effects. It is only in Phase I and even if successful, won’t make it to market for years. But the compound, CPP-115, appears to be one of the more promising drugs in the thin epilepsy pipeline.

CPP-155, may the FDA look kindly upon you.

Aside | Posted on by | Leave a comment

Surgery for Epilepsy Gains Urgency in Trial

This excellent New York Times article cites a new study in a group of 38 patients with uncontrolled seizures randomized to either continue with current medication or undergo surgery. Of 23 patients assigned to drug, none became seizure free while 11 of the 15 patients assigned to surgery no longer had seizures.

The study published in The Journal of the American Medical Association (JAMA) advocated earlier surgical intervention then is common today. Rather than waiting, it is suggested patients seek surgery after two drugs have failed. By doing so, the detrimental effects of seizures, including increased risk of death, depression, and progressive memory loss can be stopped. If the wait is too long, even curative surgery will be unable to reverse years of accumulated damage.

Study author Dr. Jerome Engel Jr. notes less than 1% of the afflicted population is even referred to a specialized disease treatment center.

Says Dr. Engel, “Leprosy has been destigmatized. Cancer has been destigmatized. Epilepsy hasn’t been.” He also points out epilepsy just “does not get the media attention and dollars devoted to other medical conditions.”

For the full story:

Posted in Treatments | Leave a comment

Gene Therapy In Epilepsy

A newly published article in the journal Neuroscience showed delivery of the hormone somatostatin to the hippocampus with viral vectors potently inhibited seizure activity in Rat models.

Somatostatin was cloned and inserted into an adeno-associated virus to enhance long-term expression. Rats were tested with the widely used “kindling” seizure model, whereby animals are induced to seizures through electric stimulation. In treated rats, only 30% reached the “kindled” state compared to 100% for untreated.

Although the kindling model has its detractors and the data is certainly early, it is always good to see new progress. Somatostatin has long been known to be associated with epilepsy. As early as the 1990s, it had been shown to affect electrophysiological properties of neurons, modulate classical neurotransmission and have anticonvulsant properties in experimental models of seizures.

Patients with epilepsy had been shown to have lower levels of somatostatin; for a time, companies worked to develop mimetics of the hormone as a novel epilepsy therapy. The efforts haven’t panned out. Hopefully, the gene therapy method will have better luck.


Posted in Treatments | Leave a comment


Summer was over and it was time to start middle school. But something was wrong; at first they were little things. For no apparent reason, a strange feeling came over me I could not shake away, but I had to try. Perhaps if I kicked at it, walked quickly, something – it would go away; my heart beat quickly. Then, as quickly as it began, I was back to normal.

I don’t know if others noticed my behavior – I imagined that no one could tell. My parents, obviously worried, took me to the doctor’s office where they tested my heart rhythm with EKGs and released me with a clean bill of health. My tongue was tied, I couldn’t describe the sensations forcing me into strange behaviors.

At one point, I visited a friendly psychiatrist, asked me if I had many friends, got along well in school. I bolted for the door.

Finally, a lady doctor prescribed me the anti-convulsant, phenobarbital, and referred me to a pediatric neurologist – a middle-aged, gruff man, not the kind of guy you want to spill your guts to. (I’m not the best patient either, admittedly.)

As time went by, life became a routine of school, doctor visits, and meds. Yes, seizures remained, but they were a hidden part of my life; only my closest friends (and not even all of them) knew of my condition. My biggest dread was having a seizure when others were around. Epilepsy was embarrassing, and I did my best to hide it.

The ER became all too familiar. But things are better now.

Posted in Uncategorized | Leave a comment

Retigabine- a Controlled Substance to Treat Epilepsy

The anti-seizure drug Retigabine, also known as Potiga, originally developed by Valeant Pharmaceuticals and subsequently licensed to Glaxo was approved by the FDA in June 2011; it won regulatory approval in the EU a several months earlier in January. The FDA deemed it a controlled substance, requiring a delay for the U.S. DEA to classify the drug.

Retigabine is a new class of drugs that acts on neurons’ potassium channels rather than the more typical sodium or chloride channels. It is a KCNQ/Kv7 potassium channel activator which functions by enhancing potassium currents via stabilizing the open conformation of the Kv7.2-7.3 channels. Retigabine has been shown to accelerate the activation of neuronal resting potentials while slowing deactivation of these currents. Studies also indicate that the compound can act as a GABA enhancer by amplifying the production of GABA in cortical neurons.

Development of Retigabine began with a screening campaign in the 1980s. Three randomized Phase III studies involving a total of 1,239 patients were required to gain approval. In all three trials, the drug demonstrated a meaningful decrease in seizure frequency compared to placebo.

The novel mechanism of action makes for a nice add-on drug. But like the many approvals before it, Retigabine is unlikely to aid the one-third of patients resistant to treatment.

We now have an arsenal of some 20 anti-epileptic drugs, yet that same patient population remains underserved. It is time to take a hard look at our standard preclinical models- they obviously do not represent these seizure types.

There is money to be made for those who succeed. The epilepsy drug market in 2009 weighed in at $8.1 billion according to Thomson Reuters.

Posted in News | Leave a comment

Epilepsy And The Ketogenic Diet

This may be one of the most exciting “new” developments in epilepsy treatment today, in my opinion. It was quite popular about a century ago before the advent of modern medicines led to disinterest in this dietary treatment.

The key to the ketogenic diet is a high fat, relatively low carbohydrate intake, resulting in a shift in the body’s metabolism and increased production of ketones. The mechanism is uncertain, but these ketones are thought to have an anti-convulsive property, with some evidence in animal models of epilepsy.

Placebo-controlled trials of the ketogenic diet in epilepsy are relatively rare. Those that have been performed show it can have a very potent effect on seizure frequency in children, allowing some to discontinue medication after about two years of treatment. There is much more literature on single-armed trials suggesting very good activity in patients who have failed multiple prior treatments.

Yet for all its promise, its use is relatively low- perhaps due to doctors’ unfamiliarity with the treatment or lack of coordination between treating neurologists and dietitians.

Regardless, a revival is afoot as awareness grows. There is interest in using the diet in earlier stages of epilepsy treatment, before patients become refractory to other medicines. And while almost all current studies have been on children, many feel there is no reason why it should not work just as well in adults.

The original ketogenic diets were highly limiting, requiring exact food servings. New methods such as the Modified Atkins and Low Glycemic Index treatment are much less restrictive while retaining the same results. This should allow a greater number of people to participate and adhere to the treatment.

Farther down the line, the hope is to get this diet into pill-form. Now that, would be quite an accomplishment.

For more info: The Charlie Foundation

Posted in Treatments | Leave a comment