What is an Epileptologist?

An epileptologist is a neurologist who has taken at least an additional 2 years of specialized training in epilepsy and treats only epilepsy. The word was made popular by William Spratling, now regarded as North America’s first epileptologist.  Epilepsy as a specialty did not get widespread visibility until after World War II.  The invention of the EED, modern Neurosurgical practices, and much clinical and basic research helped the field develop.  The Veteran’s Administration spearheaded the movement by establishing Epilepsy Centers in the 1970’s.  This launched a new breed of Neurologist’s who began to specialize in the treatment and research of epilepsy.

An Epileptologist is a physician who is Board Certified in Neurology (or Pediatric Neurology, or Neurosurgery), Board Certified in EEG (Clinical Neurophysiology), and had Fellowship training at an Academic Epilepsy Center. The Epileptologist predominantly sees patients with epilepsy, seizures, and spells (the three are different) at a program which has multidisciplinary support (outpatient, inpatient; medical, surgical, experimental treatments; psychology, psychiatry; social; nursing; pharmacy).      In addition to patient care, an Epileptologist must concurrently be engaged in Research which may be either clinical e.g. antiepileptic drug studies, epidemiology, surgical, etc.; or basic e.g. anatomic, biochemical, computer modeling, EEG, genetic, etc.

The Epileptologist teaches others in the Health field (medical students, Neurology residents, Epilepsy Fellows, nurses, pharmacists, etc.) as well as researchers in training (predoctoral, postdoctoral).

An Epileptologist is concerned about the non-medical issues of Epilepsy (social injustice, driving regulations, access to employment and healthcare, quality of life). He may pursue this through local and/or national organizations.

An epileptologist is a neurologist who specializes in the treatment of seizures and epilepsy.  An epileptologist has acquired expertise in seizures and seizure disorders, anticonvulsants, and advanced treatment options such as epilepsy surgery. Her/his training typically extends from one to several years through post graduate work with a unique focus on epilepsy. An epileptologist is mainly consulted when an epilepsy case has not responded to the first rounds of treatment (poorly controlled epilepsy).

Not all patients necessarily should be treated by an epileptologist. But if patients are seeking a second opinion or are in some way concerned about the treatment they are receiving for their seizure disorder, it would be appropriate to make a consultation appointment with this type of specialist to discuss the current treatment being used and other options.

An epileptologist is an expert in seizures and epilepsy and may be better equipped to determine treatment options including newer available (including experimental) treatment options. If more advanced testing is needed epileptologists have extensive experience with these procedures. If surgery is required, of course an epileptologist would be the primary doctor on the case and would work closely together with the neurosurgeon.

Lola:

I have spoken with several people who have epilepsy this year; each has a unique story. I have answered messages and submitted my opinion on several Facebook posts and answered emails from people who are lost within their world of seizures. My goal in writing Epilepsy Unveiled has always been to inform and help others live a better life with their epilepsy than my late husband, Charley, and I did.

One woman spoke of having hallucinations due to her epilepsy. She thought there were ghosts in the room and was afraid to tell anyone for fear of being accused of being crazy.

Someone else left a post on my Facebook page asking if they were a complete failure as a caretaker because they did not know how to adequately help their mate who was having multiple seizures.

In 1980, when Charley began having seizures there was not one iota of information available to help us endure and cope with epilepsy.  We learned everything the hard way and Charley suffered greatly.  I did not know when I began my quest to help others living with seizures what type of questions might be asked or what my answers would be. No one likes having epilepsy.  Everyone hates having seizures.  However; there are thousands of people whose seizures are controlled by taking medication.  Though there is nothing fortunate about having epilepsy there is a lot to be thankful for if you have control over seizures.

I have been contacted by several people who have epilepsy and no control over their seizures. I feel the hopelessness their words portray and the misery in their words.  They have lost the privilege of driving, cannot work and depend on their families for everything.  They feel lost and alone and often express that they are miserable twenty-four hours a day and don’t know how much longer they will be able to cope with their epilepsy.  Oh, my heart just breaks when I hear from them.  I remember sitting with Charley after he had severe episodes of seizures, holding him as he cried, trying to find words to console him and having none.  He wept, we wept, as I listened to the sole plea of my husband, “I just want to be normal.”

When contacted by people who tell me they are living with constant seizures (and several have told me they are psychotic) I asked every one of them, “Is the doctor you are seeing an epilepsy specialist or epileptologist?”  Every response has been: “What is an epilepsy specialist?”  After I explain what an epilepsy specialist is their next question is, “Where do I find one?”

Having epilepsy isn’t like breaking a bone and being sent to an orthopedic doctor or having cancer and immediately being referred to an oncologist by a family doctor. For many years after Charley was diagnosed with epilepsy he saw our family physician who prescribed Charley’s medication and for the most part his seizures were controlled.  If the seizures became non-stop and he landed in the emergency room the doctor gave Charley shots of ativan until the seizures were under control (initially this only happened once or twice a year). Eventually Charley began seeing the doctors at the Veteran’s Hospital. Basically his care was the same.  Pills for daily control, shots and hospital stays for out of control seizures and this worked for many years.  But somewhere along the way the out of control seizures began taking over our life and the trips to the hospital became more frequent.  At this point, when the medication was no longer controlling Charley’s seizures, we should have sought a more qualified doctor.  We did not know epileptologists or neurologists who specialized in epilepsy existed. We thought that was as good as his medical treatment was going to get and Charley hopelessly endured a life of seizures that could have been much different.  If we had known about epilepsy specialists, their goals and ability to control or eliminate seizures Charley’s life would not have been so miserable.  I will always believe the psychosis he experienced would not have run rampant.

Charley had seizures for twenty-two years before we consulted with a neurologist who specialized in epilepsy.  Even after consulting with the doctors at U.T. Southwestern Medical Center and Charley’s following through with brain surgery I had not heard the term “epileptologist.”  I first heard that term while promoting Epilepsy Unveiled at a health fair as I spoke with a woman who had been the chairperson for the local epilepsy foundation.  My first thought after the long word “epileptologist” settled in to my thoughts was I should have known the term “epileptologist” and used it in my book. My second thought was if I, after experiencing epilepsy from the outside in for twenty-six years, had never heard the term “epileptologist” then I bet a lot of other people who have seizures don’t know that these doctors exist, much less their title.  I decided I needed to research the subject because I have been advising others whose seizures are out of control to seek an epilepsy specialist and I was not sure if every neurologist who treats epilepsy is an epileptologist or what qualifies a doctor to have this title.   I hope this article helps with clarification and leads those who need more expert medical care to seek these doctors.  There are not thousands of epileptologists available.  They cannot consult with every person who has epilepsy.  But, if your epilepsy is out of control and your present doctor cannot help with the situation ask for a referral.

If you are having non-stop seizures do not think there is no help or hope.  It is not acceptable to live with uncontrolled seizures or psychosis.  Help is available, qualified help, caring help, specialists who have dedicated their life to helping their patients control their seizures.  There are also many neurologists who specialize in epilepsy. I doubt that every one of them is an epileptologist but they still know seizures and how to get them under control.  Many of these doctors are found at universities where most specialized epilepsy clinics are located.

Get busy, search these doctors out and consult with them. Take control of your seizures if they are out of hand. If you do not I guarantee seizures will take and keep control of every aspect of your life.

Here are some links I found to information about epileptologists and neurologists who specialize in epilepsy:

The Epilepsy Foundation has a page called Find a Doctor in which you can enter a zip code or state and it will produce all the epileptologists in that region for you to look through.
http://www.aesnet.org/find-a-dr/find-a-doctor.

This is a link to Epilepsy Advocate:

http://www.epilepsyadvocate.com/living-with-epilepsy/specialized-treatment.aspx

These are from Epilepsy Talk:

http://epilepsytalk.com/2013/01/03/2013-top-ranked-neurology-and-neurosurgery-hospitals-for-adults-and-children/

http://epilepsytalk.com/2013/01/02/2013-comprehensive-list-of-good-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/

 

 

 

 

 

About Lola Jines-Burritt