The Terrifying Reality Of Refractory Epilepsy

 

I try my best not to shy away from tough topics on this blog, no matter how hard they are to talk about as a mother of someone with epilepsy. Which is why I ended up writing an article about SUDEP over a year ago.

But today, I decided it was time to talk about another terrifying possibility for people with epilepsy… The possibility that their epilepsy won’t respond to drugs, and therefore their seizures will remain uncontrolled…  The possibility that they’ll have or develop refractory epilepsy.

I want to shine a light on this topic, especially since my daughter suffers from drug resistant epilepsy. So we’ll be talking about what refractory epilepsy is, what can be done when someone has it, and ultimately… what it means for people who suffer from it.

What is refractory epilepsy?

Refractory epilepsy (also known as drug resistant, intractable, or uncontrolled epilepsy) is a term used to refer to any type of epilepsy that doesn’t respond well (or sometimes at all) to medication. Meaning that the person suffering from it will be unable to fully control their seizures.

Now, to be clear, there are varying degrees of refractory epilepsy. Some people, like my daughter, may still be able to reduce their seizures with the help of anti-seizure medication. Whereas others may not be able to gain any semblance of control over their condition.

But regardless of the severity, this is obviously a scary concept! Because any lack of seizure control can really impact someone’s life… And sadly, refractory epilepsy is far from rare. In fact, about one third of epilepsy patients will eventually develop refractory epilepsy to some degree. Even if their seizures were once able to be completely controlled.

What are the risks associated with refractory epilepsy?

Having uncontrolled seizures increases a person’s risk for many things. Such as…

• Sustaining an injury from a seizure

• Developing emotional or behavioral issues

• Having learning or developmental issues (these are seen quite often in young children with refractory epilepsy)

• And sadly… even SUDEP

Plus, having uncontrolled and unpredictable seizures makes it harder for people to… build families, further their careers, and even make day-to-day plans. And it renders driving impossible, so their transportation is often limited as well.

How do you know if someone has refractory epilepsy?

Doctors will typically start to suspect refractory epilepsy if their patient has tried multiple seizure medications at varying doses, and has experimented with different combinations of these medications to no avail.

They’ll do this experimentation first because each person is different, and sometimes it takes a very specific combination of meds to achieve seizure control. But eventually, if nothing is working, it could signal that the person has drug resistant epilepsy.

What causes uncontrolled seizures?

Unfortunately, we don’t yet know what causes some people to have or develop refractory epilepsy. 

But having said that, there is a list of reasons why someone’s seizures could be temporarily uncontrolled. And I feel they’re worth discussing. Because all of these potential causes will need to be ruled out before someone is officially labeled as having truly drug resistant epilepsy.

So, someone could have uncontrolled seizures because…

• They need a different treatment plan; which is why experimenting with different anti-seizure meds is so important.

• Lifestyle factors are leading to seizures that wouldn’t occur otherwise. These factors could be anything from sleep deprivation to missing doses of medication.

• The patient is being exposed to seizure triggers. Examples of this could be alcohol consumption, flashing lights if they have photosensitive epilepsy, and so on.

• Or… because they don’t even have epilepsy in the first place. (There are multiple conditions that cause seizures that may be misdiagnosed for epilepsy.)

What can be done if someone has refractory epilepsy?

Now, having drug resistant epilepsy doesn’t mean that all hope is lost! In fact, there are many other treatments that could potentially help someone with refractory epilepsy gain (at least some, if not complete) seizure control.

And these options include…

• Changes to diet, such as adopting the ketogenic diet

• Having a device implanted that stimulates the vagus nerve

• More experimentation with ASMs

• Genetic testing, to figure out if the root cause of the epilepsy is genetic. Because if so, it could help your doctor figure out a better treatment plan

• And potentially even surgery. Sometimes, if the seizures are coming from a specific area of the brain, this area can be removed… Therefore, eliminating a person’s seizures. Obviously brain surgery is a serious matter, so this type of treatment plan must be considered carefully.

Conclusion

There’s no denying that the idea of refractory epilepsy is terrifying, and my heart goes out to everyone who’s currently unable to control their seizures. But I hope this article helped ease some of the fear that comes with not knowing the facts. And I also hope it painted an accurate picture of all the things that could still be tried in order to gain seizure control.

Because, nobody should ever have to give up all their hope of seizure control.

Sources

As always, here’s a list of my sources… So that you can dive further into the subject of refractory epilepsy if you like.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/refractory-epilepsy

https://www.cedars-sinai.org/health-library/diseases-and-conditions/r/refractory-epilepsy.html

https://www.webmd.com/epilepsy/refractory-epilepsy

https://www.epilepsy.com/treatment/medicines/drug-resistant-epilepsy