G.S. is a pleasant middle-aged woman who has been down on her luck for the past 20 years, following a motor vehicle accident. Well educated, with 2 masters degrees, she used to work as a journalist until just after her accident, in which she got a concussion and lost consciousness.
Ever since then, she has progressively worsened with difficult to describe symptoms that 20 physicians in the past deemed as being psychosomatic and related to an underlying psychiatric issue.
Being persistent in seeking an explanation as to why she has been having worsening symptoms, she finally came to see me.
I met G.S. in my clinic two years ago. She was my final patient of the day and she was frustrated with me at first, as she had to wait 30 minutes after her appointment was scheduled in order to see me (I was running behind, which is commonplace for me but hard on my patients in the waiting room).
G.S. began by saying, "every doctor I've seen before you has said that I'm crazy so I'm expecting that you will too." She already had it in her mind that I too, would fail her. I sat down in my office chair and leaned back stating to her that she is my last patient and that I would spend all evening with her if necessary.
After some brief chit-chat to break the ice, I started taking her neurological history. In 1989, she was driving home from work and her car was hit from behind. She was unconscious for several minutes afterwards and suffered from terrible whiplash. She was admitted to the hospital for a day and discharged home after being diagnosed with a concussion (bruising of the brain) and suffered from a terrible headache for 2 weeks after the accident.
Since the accident, she started to have this feeling like her stomach was rising, as if she was on a roller coaster. It would happen, all of a sudden, while she was at work and just as suddenly as it would start - it would be over. Occasionally, she would have describe smelling rotten-meat along with this sensation of her stomach rising. It would occur every day and as the months progressed, it seemed to be getting more frequent. She also was having more difficulty remembering things that just happened.
1 year after her accident, she was fired from her job as a journalist because her boss thought she was lying about her complaints, thinking of her as being crazy. She went to see a psychiatrist who said that she was suffering from depression, which often manifests as psychosomatic complaints. Despite starting antidepressant medications, she continued to have symptoms of smelling rotten meat and feelings as if her stomach was rising.
She saw internal medicine specialists, GI doctors, ENT doctors, other psychiatrist through the years, all of whom did their "workup" and deemed that since nothing was found, she was likely suffering from a psychosomatic disorder. Meanwhile, she continued to have difficulty remembering things.
Fastforward to 2009, when she came to see me as recommended to her from a friend. I was the first neurologist to see her and upon recognizing the symptoms as being classic for mesial-temporal lobe epilepsy, I ordered an MRI of her brain and an EEG. Just as expected, the left mesial temporal lobe was atrophied with an abnormal signal on T2/FLAIR sequences. Her EEG showed left anterior temporal epileptiform discharges and less frequent right anterior temporal lobe discharges. I put her on an antiseizure medication named Lamictal and advised her to slowly titrate up to the dose I would like her on. Despite being appreciative of the workup, she did not believe that she could be helped.
It was not until 3 months later, after she reached the therapeutic dosage of Lamictal that I wanted her on that I saw her again. She came up to me crying, thanking me profusely and telling me that she no longer had any of these symptoms of stomach rising or abnormal smells. Her life is now back together again, she met a wonderful man and married him and she now is working as a journalist for her local newspaper - as happy and as productive as can be.
I wrote this diary to provide an example that demonstrates that seizures aren't just what the TV makes them out to be. People don't have to be shaking/convulsing uncontrollably for them to have a seizure disorder. An epileptic seizure is the result of repetitive and synchronous electrical activity within a part of the brain (or the whole brain) that occurs as a result of some pathology.
Mesial temporal lobe seizures often present exactly as they did in G.S. Frontal lobe seizures present as hypermotor activity. Occipital lobe seizures often present as seeing unusual lights in one's vision. Generalized tonic-clonic seizures are the seizures that most are familiar with, in which the whole cortex is involved with abnormal electrical activity.
One can consider a neuron in the brain as being like a spectator within a full stadium. In a stadium, there is a background din of noise; rather disorganized as spectators have their own conversations. Normal background activity within the brain is similar where neurons interact with other neurons in their own special way - there is a sense of disorganization regarding the culmination of all the neurons in the brain.
A seizure is when neurons start firing in unison similar to when spectators in a full stadium start chanting a cheer synchronously, at the same time. It is a roar of repetitive, organized uniform activity and it can manifest in many ways from the classic convulsive seizure to the more esoteric non-convulsive seizure.
There are many Americans who suffer from epileptic seizures and my goal as an epileptolgist is to help my patients control their seizures either via medications and/or through surgery.
I welcome those who are interested in learning more about epilepsy and seizure disorders to join my group and submit diaries that can help to advance this community's understanding of epilepsy/seizures. I hope that this group will serve its purpose and inform you more about what it means for patient's to suffer from epilepsy. I dedicate my life to my patients and hope that they all will end up living their lives comfortably and without seizures. At this point, however, this ideal is far from being achieved.
Updated: I never expected this diary to get on the recommended list, so thank you so much for all of the interest. I've been meaning to start this group for a while now, and with some extra time on my hands during this holiday season - I'm really glad that I did.
It is truly touching reading all of the stories that some of you have written in the comments section about your experiences with epilepsy or experiences with people who have epilepsy. It is unfortunate that there still is such a stigma in our society about people who have seizures.
The world of epilepsy care is changing dramatically. We are now able to do much in terms of helping patients become seizure free. Surgical approaches are getting more complex. There are many medications now available.
I am concerned though, that people believe that cannabis is the treatment of choice for epileptic seizures. Although, there is some anecdotal evidence that marijuana has an anticonvulsant effect; there are no double-blinded, case controlled studies that have proven this.
In the absence of definitive evidence, I DO NOT recommend that people with seizures solely rely on cannabis to help with seizure control.
I also advise that people who are prone to having seizures do not drive, swim alone, take tub baths alone as a seizure during these activities can lead to major problems.
Again, thank you so much for all of the recommendations and please do consider joining the "Epilepsy and Seizure Awareness Group" as a contributor - just shoot me a message and I'll add you on.
I hope all of you have a wonderful, safe and healthy holiday!