This drug helps babies with rare form of epilepsy. But its maker is no longer selling it.

For the first six months of Christian Mumm’s life, his family lived on high alert. Christian, who has a genetic disease that causes severe epilepsy, experienced frequent seizures – at his worst, one every 10 minutes – that left him depleted and jumpy. His three older brothers and sisters tiptoed around the house in New Hartford, Connecticut, afraid that if they breathed the wrong way or clinked a dish too loudly, it would set off a storm in his brain.

Christian’s mother, Erica Mumm, recalled one heartbreaking day when her 9-year-old daughter came to her in tears.

“I kissed him, Mommy, and he had a seizure,” her daughter said. “I can’t kiss him anymore.”

After a half-dozen drugs failed to help Christian, doctors suggested the family try one called Potiga.

The medicine has had a powerful effect. Seizures that once struck multiple times an hour now come once every five or six days. But the drug came with a deadline: At the end of June, GlaxoSmithKline, the British drug company that sells Potiga, pulled it off the market because of declining sales, forcing families to stockpile supplies or wean their children off a drug that dramatically improved their quality of life.

The dilemma faced by parents whose children benefited from Potiga – and future families who potentially may never have access to the drug – highlights the limitations of drug companies’ business model.

Drug companies’ investor-driven business model allows them to make risky research bets to develop innovative drugs. But at the end of the day, it means products that are essential to sick people are being made by businesses.

That may leave few options to small patient populations who depend on a drug.

“There are people who’ve already been taking the drug, and based on their perceptions, it’s helping. I actually find this one more heart-wrenching,” said Alison Bateman-House, an assistant professor in the division of medical ethics at NYU Langone Health. “Yes, we realize you were getting benefits, but because of financial realities, and just what we choose to do with our business, we’re not going to make the drug anymore.”

GlaxoSmithKline said it has recently been in touch with two families, including the Mumms, to find a way to make the drug available. But the company is not presently making commitments to future patients, and its ability to supply the drug is not indefinite, because the remaining supply will eventually expire.

“We care deeply about patients and realize that any time a medicine is removed from the market it can be challenging,” GSK spokeswoman Sarah Spencer said in an email. “At this time, our focus is on the very small number of patients who are currently receiving the product.”

Christian’s severe form of epilepsy stems from a mutation in a gene called KCNQ2. That mutation causes electrical signaling in Christian’s brain to go haywire, and Potiga – though it was approved as a general seizure drug for adults – had a unique mechanism among epilepsy medications. It worked by targeting the precise biological defect that was at the root of Christian’s disease.

Christian still suffers developmental delays, but his quality of life is vastly improved. On the drug, he can interact with his siblings. He babbles and can learn and build on simple abilities, such as eating by mouth and smiling.

Physicians who treat and study patients like Christian say Potiga is a quintessential example of how 21st-century medicine is supposed to work. As scientists learn more about the biological causes of disease, they will be able to design drugs or rediscover old ones that treat not just symptoms but also the root causes of illness. Potiga was developed and approved to control seizures in adults with epilepsy, but it came with a bonus – it worked in a new way, by targeting potassium channels in the brain.

“Here we have 30 years of NIH-sponsored and industry-sponsored research leading to the specific understanding of a catastrophic illness. We have a drug that acts on that mechanism,” said Edward Cooper, an associate professor of neurology and neuroscience at Baylor College of Medicine. Taking it off the market “goes exactly against what our policymakers are explicitly trying to do, which is make available precision medicines to address unmet medical need.”

According to a 2011 study in Pharmacoepidemiology and Drug Safety, 118 novel drugs were withdrawn from the market between 1980 and 2009. Only a fifth of them were withdrawn primarily because of safety issues.

The plight of families who depend on Potiga is far from common, but it could become more so with the increasing recognition that a medicine that fails one group of people may be critical for another subgroup. There’s a major push in medicine toward using science to identify the set of people for whom a drug works.

But when drugs live or die depending on commercial viability, mass-market drugs that don’t fulfill their initial purpose may not be available.

From another point of view, Potiga is simply not a very good drug – an epilepsy medicine that was only ever approved for adults and turned out to have a big safety downside.

After it was approved in 2011, a scary side effect that caused blue-tinged skin and possible vision problems was uncovered, leading to a severe “black box warning” on the drug’s label. The safety problems made Potiga considerably less attractive than the other options available to the people it was approved to treat – adults with epilepsy. The drug was never tested in children because of the safety concerns and a hold on trials by federal regulators, according to Spencer, the GlaxoSmithKline spokeswoman.

“No neurologist has become dehydrated for weeping tears over the removal of a drug with so much promise and so little performance!” Robert Clancy, a professor of neurology at the Children’s Hospital of Philadelphia, wrote in an email.

Potiga sales peaked in 2013, at $14 million in U.S. sales, according to data from QuintilesIMS, a company that tracks health-care data – far from analysts’ original estimates that it could reach more than $200 million per year. When GSK announced it would discontinue the drug last summer, there were fewer than 500 prescriptions per month.

The Mumms have stockpiled as much of the drug as they could, spending about $1,200. They have about three months left. In late July, they finally got word that the company would help them get access to the medicine, but they have no idea how long the commitment will last.

“If they can do this to my kid, they can pull any other drug off the shelf of your medicine cabinet and do this to anyone else, without a second glance,” Erica Mumm said. “These companies have great power, and they shouldn’t be driven solely by profit. They do have an ethical responsibility to the patient.”

Spencer said that GSK is open to discussions with other companies that may want to acquire Potiga but has not seen significant interest in the drug. She also noted that if a company acquires the rights to Potiga, it would still be approved only for use in adults.

Doctors can prescribe drugs for off-label use as they see fit, but if the company wanted to market Potiga specifically for a rare disease, it would need to conduct a trial to get approval. It would have to get the hold on pediatric research lifted.

Other than selling the drug to another company, there may be other options.

“There are these really niche markets in the corners of the pharmaceutical marketplace that need extra attention,” said Aaron Kesselheim, an associate professor of medicine at Harvard Medical School. “If there was a nonprofit pharmaceutical manufacturer that wanted to jump in, this is the sort of place that could be a good possibility.”

The current solution is a piecemeal approach.

Amy Buches has been told the company will find a way to provide the drug to her son, Stephen. The Bucheses are one of the two families that GSK has agreed to help get the drug.

Buches said that she is personally satisfied. “Yet, it is unsettling to know that there could be an infant born in the world this very moment that would benefit from Potiga, but will not be able to use it,” she said in an email.

Mumm knows firsthand what it would mean to lose access to the drug.

In May, the Mumms – having heard that the company would not be making the drug available – began to wean Christian off Potiga. His seizures started up right away, multiple times an hour.

Mumm was in despair. Without the ability to control his seizures, the doctors were sedating her son. She emailed his palliative-care doctor. What was she supposed to do? Bring her son home in a fog of medicine and watch him disintegrate?

Just a few weeks earlier, Mumm had been hopeful, thinking about starting a new kind of therapy that could aid Christian’s development, thanks to the improvements she had seen while he was on the drug.

Instead, she found herself asking if there would be a way to ensure her son had a peaceful death.

“I want to get all my ducks in a row with knowing options,” Mumm wrote.

Mumm demanded that the doctors stop tapering his medicine, and her family went about securing as much of the drug as they could stockpile.

In July, company representatives got on a conference call with the family and Christian’s medical team to find a way to give him access to the drug.


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What causes seizures in sleep? Nocturnal epilepsy explained

Epilepsy is a serious condition that is characterised by uncontrollable limb twitching, jerking, and in many cases, loss of consciousness.

Caused by abnormal activity in brain cells, seizures can affect brain processes and lead to symptoms such as confusion, a lack of awareness, staring into space and loss of bodily control such as bladder function.

Symptoms vary according to the type of seizure, and some will only suffer from seizures while sleeping – this is called nocturnal epilepsy.

Here is everything you need to know about the condition.

What is nocturnal epilepsy?

Man in pajamas is sleeping. An alarm clock is standing next to his head.

A seizure disorder where seizures only occur while sleeping. Epilepsy is categorised as nocturnal if it’s triggered only while one is sleeping.

However, if someone is awake during a time they’re normally sleeping, a seizure can be had while awake.

What are the symptoms?

People who have nocturnal seizures may notice unusual conditions around them when they wake up, such as having a headache, bedwetting, discovering they’ve bitten their tongue, muscle strain, weakness or fatigue, lightheadedness, and bone or joint injuries.

They may wake up on the floor, or find objects near their bed have been knocked to the ground.

When do the seizures happen?

Most nocturnal seizures take place during light sleep – either soon after falling asleep, before waking or during arousal over the course of a night.

Early nocturnal seizures take place within the first or second hour of going to sleep, early morning seizures happen one or two hours before the usual time of awakening, and they can also occur an hour or two after waking up.

They’re not limited to just night time, either – nocturnal seizures can happen during an afternoon nap, too.

What causes nocturnal seizures?

The cause of seizures are often unknown, but can be linked to unusual brain development, stroke, brain tumours, serious head injury or reduced levels of oxygen reaching the brain.

Certain seizure conditions are more likely to result in nocturnal seizures. These include frontal lobe epilepsy, awakening tonic-clonic seizures, juvenile myoclonic epilepsy, Landau-Kleffner syndrome and Benign Rolandic epilepsy.

How is it diagnosed?

Such a condition can be difficult to diagnose, purely because the symptoms take place while the patient is unconscious.

Because of this, it can also be hard to know how long they’ve been present, or the average duration of each seizure.

Can it be treated?

When a patient suspects they have nocturnal epilepsy, a doctor can treat the condition with anticonvulsants.

It’s important to find the right type of medication, as anticonvulsants can disrupt a person’s sleeping structure – and a regular sleep cycle is essential, as undisrupted sleep will lower the likeliness of symptoms appearing.




































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‘Epilepsy Gene Network’ Identified in Brain


Scientists say they have identified a gene network in the brain that’s associated with epilepsy.

Although the research is in the early stages, the investigators hope their discovery can revive interest in finding new epilepsy treatments.

“Identifying groups of genes that work together, and then targeting these networks of genes, may lead to more effective treatments,” said study senior author Michael Johnson. He’s a professor of medicine at Imperial College London in England.

“Our proof-of-concept study suggests this network biology approach could help us identify new medications for epilepsy, and the methods can also be applied to other diseases,” Johnson said in a college news release.

The newly discovered “epilepsy network” includes 320 genes believed to be involved in how brain cells communicate with one another. When the network malfunctions, it triggers epilepsy, the scientists said.

Epilepsy is one of the most common serious neurological disorders worldwide, affecting more than 50 million people, Johnson and his colleagues noted. People with the condition suffer seizures of varying severity.

“Despite almost 30 different drugs licensed for the condition, a third of people with epilepsy continue to suffer from uncontrolled epileptic seizures — despite taking medication,” Johnson said.

In the past 100 years, not much progress has been made in finding improved therapies, and many drug companies no longer try to develop new medicines for epilepsy, he added.

Medications that restore normal function in this gene network could provide a new type of treatment, according to Johnson.

“The discovery of this network of genes linked to epilepsy opens avenues for finding new treatments. This uses an approach that is entirely different to the past 100 years of anti-epilepsy drug development,” Johnson said.

“Until recently, we have been looking for individual genes associated with diseases, which drug companies then target with treatments,” he explained. “However, we are increasingly aware that genes don’t work in isolation.”

6 Things That Can Trigger a Seizure Even If You Don’t Have Epilepsy

Harrison Ford has played a hero in the movies, but in real life, he gives that distinction to his 26-year-old daughter, Georgia. Earlier this month, the actor revealed that Georgia has epilepsy, and that it took years for her to get the proper treatment. “I admire her perseverance, her talent, her strength,” he told the Daily News.

Epilepsy isn’t always easy to identify. The disorder typically isn’t diagnosed until a person has had two or more “unprovoked” seizures—that is, seizures that don’t have a clear trigger, explains Vikram Rao, MD, PhD, an assistant professor of neurology at the University of California, San Francisco.

It turns out there are multiple things that can trigger a seizure, which is essentially a surge of electrical activity in the brain. And just because you have one, that doesn’t mean you’ve got epilepsy. But you should always get checked out by a doctor afterwards, says Dr. Rao.

Here, six things that are known to trigger seizures even in people who don’t have a neurological condition—and what to do when a seizure strikes.


Seizures triggered by stress look similar to epileptic seizures, mainly because they can have the same symptoms—numbness, confusion, convulsions, and more. But there are differences in the brain electrical activity between the two types. In fact, research suggests that somewhere between 5% and 20% of people with epilepsy may be misdiagnosed and, in fact, suffering from seizures provoked by anxiety or underlying trauma.

Low blood sugar

Your brain is a huge consumer of glucose, says Dr. Rao. When your blood sugar levels drop too low—a state called hypoglycemia—your brain has trouble functioning normally and the result could be a seizure. Since hypoglycemia is a potential a side effect of diabetes medications, diabetics may be at a higher risk for this type of seizure.


You already know that playing soccer for hours on a scorching-hot day can be dangerous. In that kind of heat (and under that kind of exertion), people can have trouble cooling themselves down. Once your internal thermostat reaches about 104 degrees Fahrenheit, you risk damaging your organs, including your brain: “The brain doesn’t function as well at higher temperatures,” says Dr. Rao. Once heat illness sets in, the brain can misfire, possibly triggering a seizure.

Alcohol Withdrawal

An estimated 2 million people may experience alcohol withdrawal every year, according to a 2004 study in the journal American Family Physician. People can develop a tolerance to (or dependence on) alcohol, and the wiring in their brains can reflect that. So when some people quit cold turkey, it leaves their brains in a new, altered state that can set them up for a seizure, usually within 48 hours after their last drink, says Dr. Rao.

Certain medications

Antidepressants like bupropion (a.k.a. Wellbutrin and Zyban) have been associated with seizures in certain studies. And some antibiotics, like penicillins and quinolones, and pain medications like tramadol (sold under the brand name Ultram) might increase the risk of seizures too.

Sleep deprivation

Too-little sleep is a powerful trigger for seizures, says Dr. Rao. (He’s seen seizures in college students who’ve stayed up for days in a row cramming for an exam.) “No one knows the exact reason behind this,” says Dr. Rao, “but sleep is restorative. We spend one-third of our lives sleeping, so we know it’s important.”

What to do if someone has a seizure

Oftentimes, less is more. Rule number one: Keep the person safe. That means making sure she doesn’t accidentally hurt herself, either on a nearby sharp object or by falling down the stairs.

As Anto Bagić, MD, PhD, the chief of the epilepsy division at the University of Pittsburgh Medical Center puts it: “There’s no ‘heroic’ measure necessary.” Don’t try to restrain the person (she might panic and lash out even more aggressively) and do not put anything in her mouth (she might choke on it). Besides, it’s a myth that people can swallow their tongue during a seizure.

Either give her some space or, if necessary, guide her to a safer area, Dr. Bagić explains. If she’s lying on the floor, gently turn her on her side so that her saliva doesn’t block her airway.

Most seizures resolve themselves within five minutes, so if it goes on for longer than that, you should call 911, says Dr. Bagić. More often, however, the person will regain consciousness after a few minutes—and when she does, stay calm.

“When people are coming back [from a seizure], that’s when they’re at their most vulnerable,” says Dr. Bagić. “It can be scary if the first thing they see is people staring at them or panicking.”

Another key point: Stay with the person until you’re sure that she’s completely recovered. Do all that, and it’ll be heroic enough.

Sudden Unexpected Death in Epilepsy (SUDEP)

By Orrin Devinsky, MD

Today, approximately 3 million people in the United States are living with epilepsy, a condition that is characterized by two unprovoked seizures or one unprovoked seizure with the likelihood of more. While most successfully control their seizures with drug therapy, at least 3 out of 10 people with epilepsy continue to experience seizures.[i]

The consequences of uncontrolled seizures can be serious, and in the most severe cases can lead to an outcome that, tragically, is often not discussed: Sudden Unexpected Death in Epilepsy, or SUDEP.

The leading epilepsy-related cause of death, SUDEP is said to occur when an otherwise healthy person with epilepsy dies unexpectedly. It strikes an estimated 1 in 1,000 adults in the U.S. with epilepsy each year, but among those with uncontrolled tonic-clonic (grand mal) seizures. the risk increases to 1 in 150. [ii]

What this means for people with epilepsy is that even one uncontrolled seizure could possibly lead to SUDEP. Unfortunately, too few patients are aware of SUDEP, which may lead some to accept continued seizures rather than working with their doctors to try and achieve seizure control.

We now know that these conversations are not taking place: in a new Epilepsy Foundation survey of more than 1,000 epilepsy patients and caregivers, only 18 percent of patients and 27 percent of caregivers reported that they’ve had a discussion about SUDEP with a healthcare provider.[iii]

To help drive discussion of SUDEP, the Epilepsy Foundation’s SUDEP Institute recently issued a special expert consensus report, #AimForZero: Striving Toward a Future Free from Sudden Unexpected Death in Epilepsy. The new report urges people with epilepsy to strive for their best possible seizure control to reduce their risk of SUDEP, to speak with their physicians about SUDEP, and to use the #AimForZero hashtag when discussing SUDEP on social media.

Epilepsy foundation

Epilepsy Foundation’s Four Key Steps to Reducing Risk of SUDEP

Given the link between uncontrolled seizures and SUDEP, strategies to help achieve seizure freedom can help prevent SUDEP in people with epilepsy. The #AimForZero report, therefore, recommends four key actions that people with epilepsy can take to reduce their risk of seizures: take epilepsy medication as prescribed; get enough sleep; limit alcohol; and strive to stop seizures.

People who live with epilepsy, or who help care for someone with epilepsy, should be aware of the importance of these four steps, and how they can help protect against SUDEP:

  1. Taking epilepsy medications as prescribed is critical because these medicines are only effective when taken regularly. The brain needs a constant supply of seizure medicine to continue to stop and prevent seizures. When doses are missed or the medicine is taken irregularly, the level of medicine in the body decreases. Changing levels increases the risk of more seizures.
  2. Getting enough sleep helps patients avoid sleep deprivation, which can trigger seizures. The recommended amount of sleep for children is 10 to 12 hours per day, for teenagers 9 to 10 hours, and for adults 7 to 8 hours. If people with epilepsy are not getting the recommended amount of sleep, do not wake up feeling rested, or do not have energy for their daily activities, they should work with their healthcare provider to find ways to ensure they are getting enough sleep.
  3. Lowering consumption of alcohol is important because the tolerance for alcohol can be lowered by seizure medicines and there is a higher risk of seizures after drinking alcohol. Anyone with epilepsy is at a higher risk of seizures after drinking three or more alcoholic beverages. While survey results show that only 2 out of 5 people with epilepsy avoid alcohol.[iv]
  4. Finally, striving to stop seizures motivates people with epilepsy and their caregivers to strive for zero seizures and talk to their healthcare providers about the risk of continued seizures and SUDEP. Regardless of one’s current level of seizure control, there are many proactive steps people with epilepsy can take once they have committed to exploring all options to stop seizures. These range from identifying and tracking seizure triggers to exploring epilepsy surgery or devices with an epilepsy specialist, to participating in clinical studies to accelerate new therapy development.

The Critical Role of Communication

Educational initiatives like #AimForZero can help raise awareness of SUDEP, but doctor-patient discussions during regular visits are immeasurably important opportunities to discuss SUDEP, and, as noted, these conversations are not happening enough. The fact is, healthcare professionals are often reluctant to discuss SUDEP because patients and patients’ families may not be receptive to discussing the possibility of death from epilepsy. According to the Epilepsy Foundation’s survey, however, 40 percent of patients – and nearly half of caregivers – said that learning more about SUDEP could make a difference in how they approach seizure control.

Healthcare professionals, patients and caregivers must all be part of the effort to raise awareness about the risks of having seizures and help people living with epilepsy take action to reduce these risks.

To learn more about SUDEP and spread the word about SUDEP prevention, visit

About Orrin Devinsky, MD

Dr. Orrin Devinsky is Professor of Neurology, Neurosurgery, and Psychiatry at the NYU School of Medicine. He received his B.S. and M.S. from Yale University, M.D. from Harvard Medical School and interned at Boston’s Beth Israel Hospital. He completed neurology training at the New York Hospital-Cornell Medical Center and his epilepsy fellowship at the NIH.

His epilepsy research includes translational therapies, SUDEP, healthful behavioral changes, phenome-genome correlations, autism, neural markers and imaging, therapeutic electrical stimulation, quality-of-life, cognitive and behavioral issues, and surgical therapy. He is a Principal Investigator for the NIH Center for SUDEP Research and the Principal Investigator for the North American SUDEP Registry and on the Executive Committee of the SUDEP Institute.

He serves as the lead investigator for the cannabidiol trials in Dravet and Lennox Gastaut Syndromes. He has served as a Board member of both for the Epilepsy Foundation and American Epilepsy Society. He founded Finding A Cure for Epilepsy and Seizures (FACES) and co-founded the Epilepsy Therapy Project and Outside interests include behavioral neurology, evolutionary biology and history of neuroscience.

15 Fascinating Facts About Epilepsy

Epilepsy, also known as seizure disorder, is a serious condition in which a person experiences a sudden surge of electrical activity in the brain, affecting how they act or feel. There are many portrayals of this disorder in television (all of which are wholly inaccurate and for plot reasons only). Being personally afflicted with the most commercially patchable form of this disease, the most accurate description I could describe you with would be to tighten all your muscles as hard as you can, past the point of discomfort. You’re starting to cramp, aren’t you? Now conceptualize this: while your muscles are tensing, you are repeatedly bashing your appendages and your head against other solid objects (Do not try). It is a disquieting scene to witness a man attempting to stand on his own two feet, but his muscles have been strained to the point that it’s too painful to do so. In order to enlighten some of you about epilepsy, the following list is fifteen facts I have learned about epilepsy through research, trauma and treatment.

15. Hippocrates wrote the first book on epilepsy, On the Sacred Disease, around 400 BC, recognizing that it was a brain disorder and claiming that people with epilepsy did not have the power of prophecy.

14. Single tonic-clonic (otherwise known as grand mal) seizures lasting less than 5-10 minutes are not known to cause brain damage, contrary to the belief that seizures cause brain damage, they are actually more likely to stem from head trauma.

13. You cannot swallow your tongue during a seizure; you cannot swallow your tongue now, can you?

12. There have been some recent implications that have caused many to believe epilepsy goes hand in hand with anxiety and depression.

11. Like a diabetic who is misinterpreted as a drunk driver, epileptics can often have a seizure that manifests itself as bizarre behavior, such as: repeating the same word, not responding to questions, speaking gibberish, undressing, or screaming. (In my case I was considered a threat to an entire classroom while I was suffering from a seizure of this nature.)

10. Early in the 19th century, people with severe epilepsy were cared for in asylums, but one of the reasons they were kept separate from psychiatric patients was because of the misconception that seizures were contagious.

9. Everyone is born with a seizure threshold. If your threshold is high, you are less likely to have a seizure. However certain activities or things, known as triggers, can lower your threshold, such as drinking alcohol, sleep deprivation, stress, illness, flickering lights and hormones (for women mostly) can have an impact on your seizure threshold.

8. Only in about 30% of cases is the cause of epilepsy determined. The other 70% remain unanswered, in what is referred to as idiopathic epilepsy.

7. About 1 in 20 epileptics are sensitive to flickering light, or photosensitive epilepsy. The contrast, or change in light, can trigger a seizure.

6. The official color for Epilepsy Awareness is Lavender, with the pantone swatch of PMS 2593.

5. Towards the start of the 20th century, some US states had laws forbidding people with epilepsy to marry or become parents, some even permitting sterilization.

4. Seizures have a beginning, middle, and end. The beginning, referred to as the aura, can have signs of the oncoming seizure such as smells, sounds, tastes, lightheadedness, or deja and jamais vu. The middle, is the seizure itself, whether it be a grand mal seizure, or a simple partial seizure. The end of the seizure is called the postictal phase and is the brain recovering, which can take anywhere from seconds to hours and is usually accompanied with disorientation and memory loss.

3. The proper treatment for someone having a tonic-clonic seizure is not what you see in TV shows (multiple people pressing their body weight down on a seizing person). Here’s what you should do: Pay attention to how long the seizure lasts, move objects that they could strike out of the vicinity, simply block their way to prevent them from moving too far (or into water, fall off a bed, etc.). Put them on their side after the episode and don’t put anything in their mouth. If it lasts for more than five minutes call an ambulance.

2. Diastat, or diazepam, is the medicine used to treat a prolonged seizure or cluster of seizures. It is a gel supplied in a plastic applicator that, most unfortunately, has to be inserted rectally.

1. Epilepsy is usually not a lifelong disorder, with only 25% of those who develop seizures developing difficult to control seizures. And in my experience, those who have lifelong seizure disorders have more serious conditions at play.

4 Ways to Manage the Rising Cost of Drugs for Epilepsy and Other Conditions

Research shows that the average price of medications in the U.S. is rising at nearly 10 percent per year. This affects the treatment of epilepsy and other medical conditions.

If you or your loved one has epilepsy, then perhaps you will recognize your own medication among these examples. From 2013 to 2016, the list or average wholesale price of brand-name versions of the following drugs rose significantly for zonisamide (185 percent), clobazam (96 percent), lamotrigine (75 percent), oxcarbazepine (65 percent), lacosamide (42 percent), topiramate (39 percent), valproate (32 percent) and levetiracetam (27 percent).

For some of these antiepileptic medications, such as clobazam, lamotrigine and lacosamide, only expensive brand formulations are available. For the other five drugs, generic formulations provide more affordable options. The cost of epilepsy generics has so far remained stable over time, but there are no long-term guarantees. For example, on Feb. 10, 2015, Valeant Pharmaceuticals obtained the rights to two well-established heart medications and raised the prices many-fold that same day.

If you have health insurance, then fortunately, the price you pay may be substantially less than the list price. Insurers contract with organizations called pharmacy benefit managers to negotiate price discounts with drug companies, and then cover part of your cost after you have paid the deductible upfront. Some insurance plans require that you also pay part of the cost even after you have met the deductible, and this is called a “copay.” As a rule of thumb, plans that cost more per month usually have lower deductibles and copays. But even with a solid insurance plan, if your drug is not on the insurer’s “preferred” list, or if it is being prescribed “off label” for a use that is not approved by the U.S. Food and Drug Administration, then the insurer may not cover it.

For patients without low-cost alternatives, the financial burden of drug therapy may be serious. People are starting to take notice. A recent poll reported in Kaiser Health News found that the majority of Americans want restraints on drug prices. Eighty-two percent of respondents said they want Medicare to negotiate prices with the companies, which Congress does not allow. Seventy-eight percent favor limiting the amount companies can charge for high-cost drugs, and more than two-thirds want to let Americans buy drugs imported from Canada.

Public pressure may eventually spark change. Meantime, what can you do to manage the costs? As concerned physicians, we offer the following suggestions.

1) Ask your doctor or pharmacist whether there is a generic form of your drug, or an appropriate less expensive brand-name alternative.

2) Enlist support in negotiating coverage for your prescription, if the drug you require is not on your insurer’s “preferred” list.

3) Compare prices on websites such as Good Rx or Consumer Reports Best Drugs for Less. Blink Health goes a step further and allows you to pay for your drugs online and then pick them up at your local pharmacy.

4) Know the out-of-pocket obligations of your insurance plan and consider whether you should change. Plans that cost less per month may appear tempting at first but then turn out to be more costly in the long run because of higher deductibles and copays.

5) Inquire whether your pharmacy or retail store offers drug discount cards, or whether you might qualify for the drug company’s patient assistance program.

In today’s challenging drug-cost environment, it’s important to take charge and manage your family’s situation. Maintaining open communication with your health care provider is an important part of the plan.

15 things you only know if you have epilepsy

I was diagnosed with epilepsy out of the blue at the age of 21 during my final year at university.

It changed my life dramatically over night and seizures continue to interrupt my life regularly.

But it hasn’t stopped me from always seeking new challenges including further studies.

There are some things I can no longer do that can make everyday life complicated at times.

Epilepsy has prompted many changes but learning to adapt and keeping focused on my ambitions helps me to continue moving forward.

Here’s 15 things you only know if you have epilepsy.

1. We don’t all drop to the floor and shake

There are over 40 different types of seizure.

A person with epilepsy may experience one or multiple types thanks to the condition.

2. Dignity ceases to exist

Anyone could end up seeing anything, at any time.

Seizures can occur in any situation.

Also, you’d be surprised how many ways there are to administer emergency medicine.

3. Someone knows exactly where you are at all times

Think you’re going on a secret date? 10 people know.

4. Your phone connects to hospital wifi automatically

Whether through routine appointments or emergency stays you will be visiting hospital multiple times a year, a month, a week.

Illustration by M Muffin for
5. We’re not ‘epileptic’

We are people with epilepsy and, while we’re on the subject of terminology, we don’t have ‘fits’, we have seizures.

6. You will receive funny looks

When someone gives you a strange look it becomes habit to automatically assume you had some sort of smaller seizure.

Where consciousness is impaired, the person experiencing a focal seizure may be totally unaware they have had one. Funny looks sometimes offer a clue.

7. Everything in life suddenly becomes a health hazard

Childproofing and seizure proofing are one and the same. Solitary, relaxing bubble baths that you dream about all day are simply out of the question.

8. We’re not all sensitive to flashing lights

Yes, some seizures can be triggered by strobe frequency in lighting, however only a small percentage of people with epilepsy (about 3%) are photosensitive.

9. We’re not all born with it

Epilepsy can affect anyone at any time in their lives. There are many different causes but for most people who have seizures a cause cannot be found.

10. No, we cannot swallow our tongues

It is impossible to swallow your tongue so unless you want your fingers bitten off, don’t try putting anything in anyone’s mouths during a seizure.

11. We still live life to the full

Jobs, responsibilities, education and family amongst everything else is possible despite experiencing seizures.

Different severities of epilepsy may need different adaptations but you can do it.

12. Looking like you’ve been in a punch-up is normal

Seizures, especially when they involve a loss in consciousness, can involve injuries.

People will eventually stop being surprised when you turn up with various injuries and just carry on like nothing’s happened.

13. Epilepsy is far from rare

In the UK alone there are more than 600,000 people living with epilepsy.

While there is no immediate cure, in some (but by no means all) seizures can be managed with medication, surgery or the Ketogenic diet.

14. Becoming the expert patient

You start to believe that you have some sort of medical degree when you’re asked to explain your condition.

15. ‘But you don’t look like you have epilepsy…’

Seriously, what is a person with epilepsy supposed to look like?

Epilepsy care boosted by wearables and machine learning

Dr Page
Dr PageEpilepsy is one of the most common, most serious and most unpredictable neurological conditions. According to the Epilepsy Society, one in 20 people will have a one-off epileptic seizure at some point in their life – but this doesn’t necessarily mean that they will go on to have epilepsy. One in 50, meanwhile, will have epilepsy for some period of their life – but not its entirety. People who do have epilepsy, meanwhile, may get little warning of an imminent seizure – of which there are around 40 different types. Afterwards, they may forget it ever happened.

It is in part this unpredictability that not only makes it very hard to live with epilepsy – social anxiety and isolation are common problems – but also tricky for medics to support people with the condition, especially against a backdrop of NHS cuts. Dr Rupert Page, a consultant neurologist and clinical lead at the Dorset Epilepsy Service, sums up the demands on his time like this:

We’re a team of three – myself and two specialist adult epilepsy nurses – and we support around three-quarters of a million people in Dorset. So we have to spend our time where it’s most needed. For example, we look to see patients who have had their first seizure as soon as possible, to identify whether they’re at risk of further seizures. But if they never have another seizure, and they’re otherwise well and there aren’t any other risk factors, follow-up appointments at three months, six months, one year and so on might be unnecessary. What we really need to do is direct that kind of support, and those appointment times, to the people who really need them most.

Mulling over this problem of prioritization, Page began to consider how technology might be used to address it. Information technology is an interest of his: he’s chief clinical information officer (CCIO) for Poole Hospital and also its clinical safety officer, which means he takes an active role in assessing new systems and applications that the hospital is considering implementing.

A more data-driven approach, he decided, would enable the Dorset Epilepsy Service to allocate appointments in a different way. More specifically, he saw a role for wearable technologies and mobile apps for collecting data from individual patients and then conveying it to the medical team supporting them:

This would open up the possibility of only offering appointments when people needed them. Because you’re not offering appointments – perhaps unnecessary ones – on a formulaic basis, you can potentially keep them open until much closer to the time of the appointment and then offer them to those who need them most, based on real-time messaging about their level of need. For example, if you’re getting notifications that a patient who you are expecting to get seizure-free through medication is experiencing more seizures, then this is the person who really needs your time. It just gives us an opportunity to be far more responsive.

New solution

Last month, the results of Page’s thinking – and his work on engineering a solution as part of a private/public consortium of medics and healthcare IT partners – were unveiled. Called myCareCentric Epilepsy, the solution combines a Microsoft Band wristband, a mobile app, shared care records, machine learning and data analysis tools.

MyCareCentric Epilepsy works by bringing a wide variety of patient information into a single record, held in a CareCentric system from clinical records specialist Graphnet Health. Some of that information comes from the patient themselves, either by them entering it into the mobile app or web portal, or alternatively via a Microsoft Band wristband that they wear, with sensors measuring movement, sleep patterns, exercise, heart rate, temperature and galvanic skin response. This information can be extremely useful in detecting a seizure and identifying its type, says Page. Other information is contributed by the patient’s GP, the healthcare Trust and other parts of the care community.

The combined data is presented to medical staff in a single dashboard view and alerts notify them when a patient has experienced a seizure. They’re also notified if a patient has been admitted to hospital, so that epilepsy specialists can be on hand to provide advice and guidance to the other medics taking care of them. This has already proved extremely valuable in one particular case:

We had a situation where a patient was admitted to hospital with a fracture, unrelated to her epilepsy. The orthopaedic team were taking good care of her, but were planning to put her on a fast, prior to surgery to fix the problem – but not giving her her medication might have led to her having frequent seizures and probably being admitted to the intensive care unit. But because we knew she was in hospital, the epilepsy team was able to catch up with her on the ward and advise the team looking after her on the medication she requires, in order to prevent that from happening.

Right now, myCareCentric is being piloted by a number of patients. And as more come on board, they will collectively be contributing significant volumes of data. This information, according to Page, will be invaluable in helping medics analyse, for example, to what extent medication regimes and lifestyle factors (such as sleep or exercise) impact on the frequency and severity of seizures. This analysis work will be performed in Microsoft Azure, using machine learning technologies, and over time, could help medics anticipate seizures before they occur and proactively offer advice to patients, so they might take steps to preempt them.

According to Graphnet Health, patient Sean Hamilton was keen to sign up for the service as soon as he heard about it:

The one key thing for me is about being able to have a safety net and a support system so I can actually regain my independence. What tends to happen now, particularly if I am out on my own, is that end up back in an ambulance or in A&E. I hope to get better control of my seizures and ideally to get the life back that I used to have.

What I Wasn’t Prepared for When I Started Having Seizures

I am one of the nearly 3 million Americans who has been diagnosed with epilepsy. One in 26 Americanswill be diagnosed with epilepsy. Some of them will be diagnosed as a baby, toddler or child. For me, it was when I was 23. Most of the causes of epilepsy are unknown. For me, there are several theories, but nothing can be certain. When I started to have seizures, I sat down and did a lot of research, I went to multiple specialists, and I asked questions. There are so many things the doctors could not answer, and many things I was not prepared for.

This journey has been a struggle for me, but it isn’t going to take over my life. This is my story.

I had my first seizure after Christmas break. I am a teacher at a small private school. I was standing at the door greeting students when everything started to spin, I became nauseous, and I felt like I was inside a washing machine. The next thing I remember was a group of people staring at me. I was lying on the ground, and paramedics were rushing to my side. I was struggling to make words, I couldn’t remember where I was, and I had such an urge to throw up. My mom came to the school and talked with me. I have had fainting spells since I was very young. This was nothing new! She went on her way, and I returned to teach my class.

It was just a fainting spell because I didn’t eat breakfast. Except… it happened over Christmas break. It happened the summer before. It happened when I was alone. I would wake up in pools of vomit, I would wet my pants, I would forget how to talk, I would forget who people are. I was losing control of my left arm. I was having such bad headaches. I was in pain. I was losing my memory, my ability to speak, and I thought it was time to question if these were “just fainting spells.”

I went to the doctor that week. I told him everything that was going on. I was having seizures every day. He finally listened and thought we should pursue this, just in case. He decided that, yes, these were not “fainting spells,” and maybe I have been having seizures since I was young. My mom had seizures as a kid. My brother had seizures. My cousin has epilepsy. We went through my family history; maybe there is more going on in my brain. In that week, I was sent all across the metro area seeing doctors and getting scans. I was sent to get an MRI the next day. I got a phone call about a spot on my brain. I had an appointment with a neurologist. I was having seizures. Having two or more unprovoked seizures is considered epilepsy. My neurologist called it a seizure disorder. This began my journey. There were so many things I was not prepared for.

The author at the hospital undergoing tests

I wasn’t prepared to be sent place to place to get scans, tests and opinions. I had MRIs, blood tests, EEGs, tests for diabetes, tests for anything you can think of. My MRI with the spot on the brain ended up being nothing. My glucose levels were fine. I did not have a heart condition. My lungs were working just fine. I was not prepared to go from place to place to be poked, prodded, hooked up to machines and told so many big words. When you go to the doctor, you tell them your symptoms, they swab your throat or nose or examine you, and they diagnose you. I didn’t realize epilepsy would take so many tests.

I wasn’t prepared to see so many doctors. I was sent from my primary doctor, to a radiologist, to a neurologist, to an EEG tech, to another neurologist, to a specialist in epilepsy, to a specialist in headaches, back to a neurologist, and then back to my first neurologist. I had seen so many doctors. Why couldn’t I stay in the care of one of them? I was not prepared to tell my story over and over and over again. I was not prepared for the nurses who would ignore my requests. I was not prepared for the doctors who seemed to try to catch me in a lie. I was not prepared for the “best hospital in the world” to question if my seizures were real. I was not prepared for a group of doctors to skip through my medical file and focus on only one sentence: divorced; abuse.

I wasn’t prepared for the doctors to dig so deep into my life. Am I right-handed or left-handed? Did I finish college? What is my occupation? Where do I work? Did my parents go to college? Do I take ibuprofen? When was the last time I took it? What is my living situation? Oh, I’m divorced? But I’m only 23. Why are you divorced? Explain the abuse. Explain everything about your family. Walk out in the hall for me so I can watch you walk. Hmm… your left arm shakes a lot. You don’t have a lot of feeling in your left arm. Your coordination is off. I wasn’t prepared to tell every single doctor about my past abuse, the story of my brother being born at 24 weeks and my depression.

I wasn’t prepared to have a set of doctors, nurses and a person in my life who believed I was faking it. I wasn’t prepared to be my own advocate. I wasn’t prepared to fight with everything I had left so my medication would change. I wasn’t prepared to put my foot down to a doctor and say, “No. You’re wrong. I know my own body and you are wrong. This isn’t just a cause from birth control or headaches. There is something else wrong with me.” I wasn’t prepared for this person in my life to tell my family, his friends, his family and the doctors that I was faking it. He wouldn’t let me speak at the appointments. He wouldn’t let me have control of my health plan. I wasn’t prepared to spend hours in a hospital and be all alone.

I wasn’t prepared to lose my license for over six months. I wasn’t prepared to hear that I couldn’t take a bath, I couldn’t live on my own, I couldn’t sleep alone. I could never live alone.

I wasn’t prepared for my depression and anxiety to spike. I felt like a child. I was in fear of when my next seizure would happen. When I would have a seizure, I would pee my pants. I would throw up on people. People would look at me funny. My anxiety was worse than ever. How would I pay for these doctor bills? How would I walk to my job without having a seizure? Did I take my medicine yet? What if I have a seizure in the shower? My depression hit an all-time low. Was it because I had to retell my past over and over? Was it because I had to move home again? Was it because I felt like I was doing this alone? Everyone gave me their opinion. One of my friends wouldn’t believe me and told me about all of the health care professionals she talked to. I know my own body better than anyone else, but yet they wouldn’t listen. I had so many people giving me their opinion, shoving their opinion down my throat when I was just trying to get through the day without a seizure. I was sad and alone. I was telling my story over and over again. About people in my life who didn’t treat me right or who didn’t believe me. I was going to live with my parents forever. I was “different.” Was my depression because of my epilepsy? No. I have been depressed since middle school. So many memories came back. I wasn’t prepared to struggle with being seizure-free and fight my depression.

I wasn’t prepared to struggle. I also wasn’t prepared to have such a loving family be there every step of the way. Even if they didn’t always know exactly what to say or do, they were always in my corner. They got me to my monthly appointments. They helped me clean up after I would throw up. They would keep me safe. I wasn’t prepared to find a boyfriend who would stand by my side and not judge me. He believed everything I said. He understood the depression. He helped pick me up when the dark was all I could see. I wasn’t prepared to have a village of people truly mean it when they told me they would help me out with anything I needed.

I am going to take medication my whole life. I will worry about having a child when I have epilepsy. I will need to be medicated if I am ever pregnant. But that is OK. I have a neurologist now who cares for me. I have a doctor who listens and takes my word for things. I have a wonderful doctor who is there every step of the way, and I can trust him. I have a family that will help me. I have a great boyfriend who will ditch our plans so I can recover for a seizure. When I have a seizure, it wipes me out. Maybe for a day. Maybe a week. My body hurts. My head hurts. I can’t think. But my boyfriend is OK with that. He stays with me, even if he has something else planned. I have a great support system. I know I am not doing this alone.

I have epilepsy. I am going to struggle. Every day I learn something new about my own diagnosis. Every person with epilepsy has their own story, struggles and limitations. I know I cannot have too much caffeine, I need lots of sleep and I need to be healthy. Each person with this disorder will have a difference experience and feel differently about it. This isn’t a “one size fits all” thing. There are different kinds of seizures. There are different kinds of drug interactions.