Dr. Kevin Most: Epilepsy
Charles Dickens, Neil Young, Teddy Roosevelt, Prince, Danny Glover, Edgar Alan Poe. Any idea what they all have in common? Each of them are suffering or suffered from Epilepsy. I wanted to lead with this so we could set a tone of individuals who have been diagnosed with Epilepsy and help eliminate some of the stigma.
The reason I start with those individuals is to attempt to block or damper the stigma associated with epilepsy. Most individuals with Epilepsy can do the same jobs you and I do every day. They can handle jobs with responsibilities and stress. Now some may be limited in doing some jobs based on safety but for the most part they can do almost any job and can live a totally normal life.
November is Epilepsy Awareness Month and taking a few minutes to stop some myths and give some information about seizures may make an impact in your life or a loved one. Many are afraid or frightened by an individual having a seizure, this is slightly out of lack of knowledge but probably more importantly, it is scary if you don’t understand it or don’t know what to do when you see one occur.
Many of you may be thinking that they don’t need this information as the chance of them being in this situation is remote. Well, let’s discuss some stats. One in 10 adults will have a seizure at some time during their life. A person is considered to have epilepsy when they have 2 or more unprovoked seizures. In the US alone we have 3.5 million individuals with seizure disorders, so there is a good chance you already know someone who has been diagnosed. Close to 500,000 of these patients are children. We see 150,000 new cases each year, key point , this is not a rare disease.
Who is at risk for a seizure? Unfortunately we all are at risk, in fact we can see seizures in those over the age of 65 almost as often as we will in those under the age of 18. The brain is a complex organ and unfortunately it has a short circuit sometimes and we can’t predict if or when it will occur.
What is a seizure and why does it occur. Remember we have discussed how the brain is this very complex organ that is highly functional because of chemical and electrical activity. That brain activity allows us to do everything, from walking to doing math, from understanding what a picture is to singing an opera. The brain is absolutely amazing. Now occasionally in some individuals the electrical activity supplying the muscles goes a little haywire, strong uncontrolled electrically activity will cause a seizure. We all picture a seizure as an individual shaking uncontrollably or convulsing. However not all seizures have convulsions, in fact some seizures include individuals who just have a blank stare. So there is no typical seizure but instead a spectrum similar to what we see with many brain based illnesses. The impact of the seizure actually depends on where the electrically activity has jumped beyond its normal tracts.
The individual and family that are impacted by seizures need to know they are not alone. Although epilepsy is not well understood, the work on treating and eliminating seizures is going on in every city. We are fortunate here to have the Epilepsy Foundation of Greater Chicago as a great resource and support group. Kurt Florian leads the team here and is so important for the family as they first deal with this condition and try to understand what the next steps are.
One sad thing is that in many cases we do not know why a seizure occurred. There is a lot of work and research going on with Epilepsy. The research is working on trying to understand why they occur, can we predict them and what are the best treatment options. Our treatment options are growing as we begin to understand more about this condition. What is probably more important is what can we do if we are present and see someone having a seizure. Let’s go over a few things and hopefully we will all be better educated and more prepared to help a patient who is having a seizure.
– For some reason people are afraid of an individual who is having a seizure, they are not contagious, you can’t “catch” epilepsy!!
– It is impossible for an individual having a seizure to swallow their tongue, it is physically impossible
– Do not attempt to place anything in the mouth of someone seizing, it will do more harm than good
– More importantly roll the individual on their side and protect their head , prevent them from striking anything with their head, move objects out of the way
– Do not attempt to restrain someone having a seizure, they will only last a few seconds or minutes, it is more important to move items away from them and protect them from hitting items.
– The most important thing to do is prevent any injury by preventing head injury, removing objects they may strike and staying with them as they recover from the seizure.
Advances have been made in the treatment of Epilepsy however we still need research and advances in this disorder. It is an illness that cannot be “cured”, it can be controlled in many cases but there is no cure. After a diagnosis the doctor will discuss what the best treatment options are. For some it may be medication, for many this is all they need. The medication is not like an antibiotic, where it cures an illness, medications for epilepsy help control or eliminate the seizure activity. We have medications that can be used and the success rate is fairly high, but we still have about 1/3 of the individuals where current treatment options cannot help control their seizures. It is individuals like this that need more research and more novel alternatives for a cure. Brilliant researchers as working on other treatment options and they are very exciting.
One of the more fascinating new treatments is something called a Responsive neurotransmitter (RNS). This is similar to a pacemaker that we use for the heart, or a DBS that we use for Parkinson’s patients. It is a stimulator that we put in the brain. In some patients with epilepsy we can identify where in the brain the seizure is coming from, in these patients we are often able to detect when an abnormal electrical impulse is occurring. For these patients we place a RNS in that area and it fires an electrical impulse that over rides the impulse causing the seizure and it prevents the seizure.
Another very exciting minimally invasive technique is using a laser to ablate or burn the area where the seizure is coming from. For these patients a very small hole is place in the skull and using CT guidance the area of the focus for the seizure is identified, the laser is very fine and is passed thru healthy brain tissue without doing damage to the point where the seizure has been noted. The laser is turned on and that area is ablated and the seizures are eliminated.
Others may have heard that some diets may help control or eliminate seizures as well. In some cases where medication has not helped, doctors may try a ketogenic diet as it has shown to help in some cases. This is a diet that is high in fat, low in carbohydrate. It is a very strict diet that should be laid out and monitored by your physician. In fact some patients are kept in the hospital for monitoring as they start this diet. Some studies have shown that this diet along with medications work much better than medication alone.
I am sure we have some parents who have had an infant with a seizure when their child had a high temperature. This can be very scary for the parents, for most infants no treatment is needed. Controlling a fever to prevent high fevers may diminish the chance of future febrile seizures. Many children will have more than one but most will resolve prior to the age of 5. These can be quite concerning for parents but in no way make the individual more prone to seizures in the future. They are noted to run in families, so if an infant has a febrile seizure future siblings may be more prone. Treatment during a febrile seizure is similar to what we do for adults, place them on their side, protect them from hitting their head. If the seizure lasts more than 5 mins call 911.
Seizures can be very scary and confusing, but a well-educated individual will know what to do and understand that these individuals are our neighbors, our workmates, our friends and understanding epilepsy will make your life and others better.