Being involved with literally hundreds of epileptics in epilepsy support groups, I’m amazed at those recently diagnosed as epileptics who had started out with simple illness symptoms that most of us wouldn’t consider as having anything to do with epilepsy; at least on their own.
The problem arises when over time and normal medical treatment by your General Practitioner these symptoms remain or even seem to increase.
Unfortunately, the GP prescribes a few tests which come back normal or maybe he or she gives you a Rx for a med that eliminates the problem but over time actually triggers other symptoms or even a seizure.
The attached drawing is an admittedly somewhat controversial drawing of many of the associated illnesses or symptoms of epilepsy. However, if you experience any of these, especially together, you should inform your doctor or neurologist immediately.
Any one of these illnesses can be signs of an impending seizure or related to an aura.
We all have these symptoms from time to time and as such the reason many consider this as controversial, but my experience has shown most epileptics have had these associated illnesses at one time.
I hope this drawing will help you better understand yourself as an epileptic or the epileptic in your life.
May God keep us all seizure free.
© 2019 Lee W. Outlaw III, PhD
Since many of us participate in various support groups for epilepsy as a means of strength and encouragement we are so excited to find others like ourselves with the same needs and concerns that we don’t give a second thought to the lurking danger of posting and sharing those feelings on line with others in the group.
This past week as I suddenly found my counseling articles on epilepsy being denied posting on Facebook even in a private and closed personal group, I became aware that Facebook has access to all the private conversations posted even in private, closed groups.
It seems that although the general public does not have access to these so called closed groups (which actually aren’t closed at all) Facebook can and does read everything.
The end result is that anything you post about your epilepsy condition or that of a friend or loved one (via Facebook) on line even in a CLOSED group Facebook sees and knows.
Likewise, hackers and trolls can also utilize such information for their own demented purposes.
You should also be aware that Facebook and possibly a few others are not only violating their own privacy policies that each of us are forced to electronically sign and agree with but with regard to anything concerning medical or mental health they also violate the Federal HIPPA guidelines for patient rights and privacy.
As such, I urge each of you to think twice on what and where you post your questions and comments. Consider personal one on one or genuine local support groups. If that isn’t convenient, then select real, genuine web sites such as this one or some of the new social media groups such as GAB.
Don’t say you haven’t been warned.
© 2019 Lee W. Outlaw III, PhD
Just when you thought it was safe
A personal epilepsy experience by Dr. Lee Outlaw
I am taking a short break from my six part Epilepsy series, “Six often overlooked associated conditions of Epilepsy” to write a special piece on my most recent experience as an epileptic.
I want every epileptic to know that I am not just a Christian Counselor and Psychologist; I am a real life epileptic. Although, my epilepsy is controlled fairly well, like you, I have my epileptic moments and just when I thought it was safe…, EPILEPSY reared its ugly head.
I was driving home (yes I drive) from a meeting feeling perfectly fine when suddenly out of nowhere I was hit with the ugly fist of a full blown Epileptic aura; not a seizure mind you but the next worst thing. I had taken my morning dosage of Depakote and CBD and had gotten my full 8 hours sleep. Apart from the slight stress of the drive itself, there was absolutely nothing to trigger an aura.
It was a very frustrating experience. Although I had had minor auras, this was the first major aura in ten years and that aura led to a major Grand Mal seizure; needless to say I was scared.
The aura was so intense, I had to pull over onto the frontage road from the freeway and eventually I pulled into a convenience store and purchased a diet cola. I finally felt I had walked the aura off well enough that I had control and drove on home; unfortunately the aura wasn’t over.
As I reached my home, I became extremely tired (every epileptic knows that severe tired feeling) and I practically fell out of my van. I made it inside the house and collapsed into my recliner where I remained fading in and out of consciousness for the next eight hours. I had no doubt as to what was happening so I finally took an extra dose of Depakote and ultimately made it to bed.
I woke up Saturday morning and felt some better but I knew things still weren’t right. As usual I took my Depakote and later CBD. I had a light breakfast but the aura remained; not as bad as the previous day but it was bad.
For those of you who might have never experienced an intense epileptic aura, here is what I (and many others) experienced:
It was as though I became semi-conscious, walking around in a hazy light yellow (some experience other colors but mine has always been yellow) fog (unable to focus or concentrate) intermittent déjàvu, weird smells (I smelled cigarette and cigar smoke even though no one in my home smokes and nobody is allowed to smoke in the house) and a thousand crickets in my head (some claim to hear strange sounds or music)(tinnitus/ringing in my ears). I also experienced a light head ache.
As a psychologist I need to point out here that someone experiencing a stroke can have a similar pre-stroke experience. Unless you have had an intense aura and discussed it with your neurologist (even if you are an epileptic) and have such an experience as I have described, you should call 911 immediately; it could be the difference between life and death.
Every epileptic’s aura experience is different but that was my most recent.
I continued to take my Depakote and CBD throughout the day and even an extra half dose of Depakote in the afternoon as my neurologist had previously directed when I experience an intense aura.
The aura seemed to decrease throughout the afternoon until I went to bed that evening.
Around 4:30 am Sunday morning, it happened, I had a “night (Nocturnal) seizure”; I woke up consciously shaking having bitten both my right side tongue and upper and lower lips. My tongue was bitten severely and outer lower lip bite actually bled.
The good news as most of us as epileptics know is that after the night seizure I am feeling much better and am nearly back to normal.
Keep in mind, increasing numbers of neurologist and researchers believe the epileptic aura is actually a simple partial seizure. Regardless, the aura for most of us as epileptics is a horrible experience.
I thank God for a good neurology team, support team which includes my family, great anti-seizure meds and prayer.
I am also thankful for the U.S. Congress having legalized CBD oil in all 50 states and the Texas State Legislature having legalized Low THC/CBD Cannabinol for use by Epileptics. I believe sincerely, had I not been taking CBD, my aura and seizure would have been much greater.
For all epileptics and non-epileptics alike, please remember that epilepsy is not a disease (although since 2014, many researchers have disagreed); it is a neurological disorder. At present there is no known cure and epilepsy does not get better (although most of us agree it is becoming easier to control); it is always there. But with proper care and support it is possible to live a relatively normal life.
May God bless every epileptic and their families and may God give wisdom to epileptic researchers as they seek a cure.
© 2018 Lee W. Outlaw III, PhD