Seizure Disorder

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I have non epileptic seizure disorder. This past Saturday I had an “absence seizure “ while driving, luckily I had no accident before awakening.



One foot forward

The doctor appointment went well Monday. He didn't have much information about it due to it being so rare and unfortunately understudied
He did try his best to explain it better and take more notes. He will send the scans to my new neurologist and hopefully he will have a bit more info.
His main concern for the most part are the seizures. He, like us want them better under control. No one can really put a label to what they are I have been told NES and I've been told Epilepsy. I know that colpocephaly can cause seizures among other things. It's been a frustrating journey since December 2020 when they first started.

On the upside my parents are glad that I have a name for what's going on with me. When I told one of my parents they said I had your mom look it up and this is definitely what was going on with you growing up but nobody had a name for it.

It was rough growing up in the 90s-early 2000s with some of the issues I was dealing with but I made it through. Thanks to the support I had growing up with school teachers and my parents trying probably pouring over books and phone calls trying to figure out how to help me.

I'm hoping here on out it'll be a bit more smoother sailing on trying to figure this out more. I know life has speed bumps and every day I have to adjust and accommodate to my needs but I just need to put one foot forward even if that means wheeling that foot forward too.

#Spoonie #Colpocephaly #SeizureDisorder #AmbulatoryWheelchairUser

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I was wondering how many other people have gotten shakier or twitchier since they started having seizures. #SeizureDisorder

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What’s worse – the physical or emotional pain of epilepsy?

When you go on Facebook and you look up the people with epilepsy you’ll find hundreds of people sharing pictures of the bruises or broken bones that they endured while having a seizure or they’ll share a paragraph or two telling others about the seizure the experienced and the physical pain they acquired from it.

My heart goes out to all of them because each time I read one of these messages on Facebook I can relate to them because at some time in the course of my life I experienced what they are experiencing now.


experienced concussions

acquired a hematoma on my head by falling headfirst on the ground

gotten broken bones

acquired many cuts and bruises

almost drowned in a bathtub

have cracked my head open

permanent memory loss from my concussions

experienced several near-death experiences

and the list can go on.

But I am not here to ask for sympathy or to have others recognize the extent of hardship that I endured, because honestly, everyone goes through tragedy and everyone experiences pain in their life.

My question to you is, “What is more painful the physical pain we endure or the emotional pain experienced from the tragic event that occurred?

What’s Worse The Physical Pain or Emotion Pain?

When I look back on the course of my life and I think of all the things I have gone through in life because of my epilepsy tears begin to fill my eyes. I have acknowledged that broken bones heal, hematomas eventually go away and the other physical pain caused by my seizures eventually healed too.

However, the emotional pain I have received in my life-long journey with epilepsy will never go away. I would be lying if I said it did. It’s embedded in my heart and will remain there for the rest of my life. So me personally, I truly believe that the emotional pain is much worse than the physical pain we endure from a seizure.

So How Do You Cope with The Emotional Pain Caused By Epilepsy

But what I do know just like with any painful event, the emotional pain will never leave us, so we must learn how to cope and move on. Just like when someone we love passes. The pain from that loss will never go away but we learn to cope with the loss and then we move on.

If you don’t move on then you’ll live the rest of your life in misery and depression and that’s no way to live.

Living with Epilepsy

Living with epilepsy, every day of your life is tough. For many who have a disability, they tend to hold their emotions inside. The emotions that develop tend to build up inside them until they are unable to deal with their emotions any longer. When you ignore your emotions and hold your emotions inside you set yourself up where you can easily fall into depression. This can happen when one focuses on the negative aspects of their disability and by pitying themselves.

Living with epilepsy can be difficult if you do not accept the disability into your life. When you accept epilepsy into your life, you must first realize that there is no such thing as a perfect person. We triumph each day of our life trying to master how to solve the daily troubles that come our way, and how to overcome the problems that have already occurred in our lives. You need to grasp the notion that no one on this earth is perfect and there is no need to feel a sense of embarrassment because you have epilepsy. If you look into any person’s closet, you will find plenty of secrets and imperfections. Overlooking your problems and not dealing with them is the easy way out, yet to face your epilepsy and the pain its caused is an accomplishment.

Accepting Our Epilepsy

Accepting our problems and dealing with them helps us grow mentally, physically and spiritually. One should not feel ashamed because they have a disability. When I opened up, telling people about my disability, I was shocked to find out how many people had some disability or knew someone who had epilepsy.

Education Is Key

People fear what they don’t know. Many individuals are uneducated about epilepsy and look at people who have epilepsy different. I believe God puts obstacles in our lives to strengthen us. When we are young, we have people in our lives that help to mold us. They help us develop the strength, wisdom, and knowledge we need to survive in this world. Yet if we become dependent on these people, we cannot survive and live the productive life that God has given us on this earth to enjoy. You must realize that everyone is on this earth here for a reason. We need to pass on what we have learned along to others.

I believe it is just selfish and pure laziness when we pity ourselves because we have epilepsy. You need to take your problems and learn how to cope with them so you can help other people. There is no reason why you should not live a happy and healthy life just because you have epilepsy.

The Key To Surviving Is Positivity

You need to accept your epilepsy into your life and look at it positively. To do this you need to open your heart and feel what your emotions are trying to tell you. Your heart will never lie to you because the heart only holds the truth. You need to develop courage so you can ask deal with the pain that lives in your heart. Usually, when we chose to hide things about ourselves, it is because we are embarrassed about whatever we are trying to hide. You should not be ashamed of having epilepsy. People with epilepsy are coming out into the open every day. They are learning to talk about the problems in their lives. At the same time, these people are educating society and healing the scars that lye in their heart.

Always remember…

We can’t change the past, so there is no point to dwell on what we can’t change.

We must positively focus on the present

Doing this, you will create a happy, healthy and productive life.

Society Is Getting Better, So Should You

The stigmatism still remains in our society, however, it is improving tremendously. As many organizations and corporations have approached me asking for help, asking “What can we do to help break the stigmatism of epilepsy in our society?”

Companies and organizations in the United States that have the power to initiate change are acknowledging the problem and the importance of solving it. They are asking advocates to help them solve it. We have more sponsoring support groups and research studies than ever before. People with epilepsy need to learn to accept what they have and learn to do something about it. Nothing is going to get better until you learn to help yourself and help others.

Bottom Line

Everyone with epilepsy suffers both emotionally and physically from the disorder. The emotional pain can destroy you if you let it. The only way to move on is to focus on your strengths and to look at life positively. I’m not giving up on you. You shouldn’t give up on yourself.

#epilepsy #epilepsyawareness #epilepsywarrior #Seizures #epilepsyfighter #epilepsysucks #Autism #CerebralPalsy #epilepsysupport #epilepsystrong #epilepsyadvocate #ChronicIllness #epileptic #Seizure #endepilepsy #SeizuresSuck #InvisibleIllness #epilepsylife #MentalHealth #repost #cureepilepsy #Anxiety #Disability #seizureawareness #Love #SeizureDisorder #epilepsyeducation #epilepsia #disabilityawareness #ADHD

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As time passed, I was accepted to Stockton University, and with all odds against me, I was determined to succeed. I was put on this earth for a reason, and I was bound to succeed no matter how difficult the ride was going to be.

I remember like it was yesterday, I was in class, and an aura came, I had a seizure, and I woke up in a classroom in dead silence with all eyes focused on me. Even the guy I couldn’t stand had a face of remorse and sympathy. It was the worst feeling in the world. Then my professor, in a calm and friendly voice, asked me if I was OK, and I said, “yes” then my professor broke the ice by saying, “My roommate in college had epilepsy, and he did just fine.” No worries, class. I must have taken every class he taught because he made me feel safe in his classroom.

Eventually, I graduated and then landed a job with a big corporation. I worked there for a while until one day, I fell to the floor and had a seizure. One of the big corporate employees walked over to me and kept going. Thirty minutes later, his associate released me from my position.

Was I ever going to reach the level of success I had always dreamed of achieving? Every time I took two steps forward, I felt like my epilepsy knocked me back another three steps.

By then, I was getting ready to marry the longtime love that I met after high school. I got married and helped my in-laws with the business they were starting. During this time, after three years of writing, I finished the book I started in college, “Epilepsy You’re Not Alone.”

Letters from all over the US and Canada poured in, and people thanked me for writing this book. One person even told me that they were on the verge of suicide, but they saw my book at Barnes and Noble, and they read it, followed my advice and guidance, and they gained purpose back in their life and the will to live.

It was then that I realized how powerful words can be and how a simple book could dramatically change someone’s life.

Then, I decided I wanted to be a writer, advocate, and life coach. I wanted to help others like so many others had reached out to help me in my lowest and hardest times of life.

The Epilepsy Foundation invited me to Washington, DC, where I spoke in front of Congress about job discrimination. Afterward, I met Congressman Rush Holt, who shook my hand, congratulated me on my courage and perseverance, and shed a tear as he told me about heartwarming moments watching his sister grow up with epilepsy.

During my years of writing in the health field and over 15 years behind my belt, I began writing for a herbalist. I used many things I learned and applied them to my own life. Amazingly, my seizures decreased and eventually stopped, and fifteen years later, I was able to drive again.

I was intrigued by herbals, vitamins, food for medicine, and natural life (alternative medicine). I researched for over two years, collected valuable information, and completed my book, The Complete Herbal Guide: A Natural Approach to Healing the Body and Maintaining Optimal Health Using Herbal Supplements, Vitamins, Minerals, Fruits, Vegetables, and Alternative Medicine.

I started with a blog of 400, then created a website of 10,000 monthly visitors to a redesigned website that brings an insane amount of monthly visitors.

Some would be satisfied to accomplish what I’ve achieved with the struggles I have to face.

Yet I am still determined to reach higher levels of success. I want to speak in front of large groups about the importance of a healthy lifestyle. I want to teach others about the power of positive thinking and, most of all. I want to help others who struggle will an illness, disease, disorder, or disability. My mission is to make a difference. I want to help improve the lives of millions.

I realize no matter what age you are or what illness you are suffering from; you can transform your life and create the life you always wanted for yourself. A life filled with happiness, inner peace, good health, and positivity.


This started a 25-year journey where I discovered the twenty-one principles that pulled me out of rock bottom and back to my pathway of empowerment, which led me to love, inner peace, and happiness.

I realized I was not the only one experiencing a rock bottom moment. I wasn’t alone, and so I decided to share what I learned on my journey, trying to pull my life back together and find my purpose in my life.

I help as many struggling men and women trying to cope with the deck of cards life has given them and help them overcome their challenging obstacles to find their way back to a meaningful life.

#epilepsy #epilepsyawareness #epilepsywarrior #Seizures #epilepsyfighter #epilepsysucks #Autism #CerebralPalsy #epilepsysupport #epilepsystrong #epilepsyadvocate #ChronicIllness #epileptic #Seizure #endepilepsy #SeizuresSuck #InvisibleIllness #epilepsylife #MentalHealth #repost #cureepilepsy #Anxiety #Disability #seizureawareness #Love #SeizureDisorder #epilepsyeducation #epilepsia #disabilityawareness #ADHD

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Life was grand as a toddler, going on weekend trips with my parents, playing with my friends, and listening to grandma as she shared one inspiring story after another about the good old days. What more could a child ask for than the love and comfort of her family?

Surprising life quickly took a turn for the worst, and that pathway I was destined to journey became rocky as traumatic obstacles crossed my life path and took me on a different journey. A journey, one no child should have to experience.


At age five, I contracted a sore throat and an ear infection. My mother brought me to the doctor’s that evening, and the pediatrician put me on penicillin and told my mother to have me rest. Of course, no one thought much of it at the time.

I rested in bed and was on penicillin for about ten days. On the tenth night, when she put me to bed, my lips were more red than usual. The following day at about 8:00 A.M., my mother woke up because she heard unusual noises coming from my room that sounded like I was choking on my saliva. She entered my bedroom to find me in my bed, turning blue and having a grand mal seizure. This was the first time I ever experienced a #seizure.

During the seizure, I fell to the floor, my eyes rolled to the left, and my whole body began to shake. My teeth began to chatter, and I started to foam at the mouth and choke on my saliva. My skin color began to turn bluish because of the lack of oxygen I was enduring.

My mother ran to the phone to call the ambulance and had me rushed to the hospital. They brought me to the emergency room and hurried me to the isolation ward. They had no idea if any type of serious or contagious illness brought on the seizure.

They administered many tests to try to diagnose the cause of the grand mal seizure. The doctors finally concluded that the grand mal seizure came from a virus. This was not an ordinary virus. It was a virus known as encephalitis.

The doctors had told my parents that the bacteria from the ear infection had traveled to my brain and that the virus was still in my brain. They were told that the viral encephalitis had to leave my brain naturally on its own. I was in an induced coma for four days. After the 2nd day, my parents were told that if I survived, I would probably have severe brain damage or I could become paralyzed and paraplegic.

My parents were devastated, but they never gave up hope. On the fourth day, while I was in a coma, my father lay by my bedside and began praying to a saint in Greece. As he prayed he was visualizing the statue in front of his old church. In Greece, water would roll down this saint’s eyes. As my father raised his head and opened his eyes, he looked directly at me to find a teardrop rolling down my face. Immediately after I woke up. They tested me right away. I had no brain damage, but the infection had traveled to my brain and caused scar tissue damage, which left me with epilepsy. For years, I endured endless seizures.

My seizures finally became under control after years of tests, trial groups, and trying every antiseizure medication known to man. My epileptologist gave me permission to drive a car, feeling that my safety was no longer in jeopardy or likely to endanger someone’s life while driving. I was so excited.

At eighteen, I was issued a license that right of passage so important for a young person striving for independence and autonomy. Since I have epilepsy, I was even more excited to get my license since I always felt different from the other kids and that I had something to prove. Now, the gap was closing and I was just like all the other teenagers, one of the gangs, the cool girl in school with a license.

Picking my friends up and driving to the mall quickly became a ritual. We shopped until we dropped and enjoyed every precious moment. We helped each other pick clothes, buying like crazy until our wallets were empty. The morning after a shopping spree you would find us at each other’s house, helping each other get into the new pants that we purposely bought two sizes smaller.

One of us would get on the bed and the other two would help pull up the pants. I can still hear Marie yelling at me to stop breathing and hold in my stomach!

No new purchase was sacred; we swapped our new clothes and could make three new outfits look like ten. As our closets grew, so did our friendships. We bonded, shopping being the experience that brought us closer. No matter how different we each were in personality, we all had a love for shopping in common.

At nineteen, life changed, as you would expect, it should for a young woman about to become an adult. Only my change wasn’t typical.

While I was driving with my boyfriend (who is now my husband) on a winding, country road in New Jersey, I suddenly went into a seizure. My muscles tightened, my arms curved to the left and my foot went all the way down on the gas pedal.

Our future together flashed before us as the car headed straight toward a telephone pole. Fighting me for the wheel was worse than fighting a boxer or wrestler. I had no control and while in the throes of the seizure, I had the strength of a couple of bouncers.

Finally, my boyfriend got control over the car, steering it safely away from the pole and bringing it to a stop.

By then my seizure had passed and a new era in my life began. An angel was watching over us and spared our lives that day, but my license was revoked and my days at the mall became fewer and more difficult to arrange.

I never expected that not being able to drive whenever I desired would have such an impact on my life, but it did. I became a prisoner in my own home, no longer able to hop into the car and go to the mall, to Dunkin’ Donuts for a cup of coffee, or Blockbusters for a video. I was at the mercy of other people’s schedules.


Not one to ask for people’s help, my isolation became chronic. I felt very alone. I was a strong, independent person and I wanted to take care of myself. I wanted to be a successful woman working in New York, shopping her heart out after work then going to the bar to have enjoyed an evening martini with friends. But that idea wasn’t realistic; my dreams didn’t seem to have a chance.

My confidence was shaken, my self-esteem at an all-time low. How was I going to be a success? I had epilepsy. Where was my life going? What was my purpose? I was depressed, hiding from the world, and feeling hopeless inside. Afraid to tell others how I felt, I was trapped.


#epilepsy #epilepsyawareness #epilepsywarrior #Seizures #epilepsyfighter #epilepsysucks #Autism #CerebralPalsy #epilepsysupport #epilepsystrong #epilepsyadvocate #ChronicIllness #epileptic #Seizure #endepilepsy #SeizuresSuck #InvisibleIllness #epilepsylife #MentalHealth #repost #cureepilepsy #Anxiety #Disability #seizureawareness #Love #SeizureDisorder #epilepsyeducation #epilepsia #disabilityawareness #ADHD #ADHD

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I’m new here!

Hi, my name is KerrySusan. I'm here because
I also have a diagnosis #fnd which is Functional Neurological Disorder, a seizure disorder and have just lost my job. I can’t drive. I am having an absolute meltdown. Hello! Hi! I am definitely the Problem. 🤡
#MightyTogether #Anxiety #BipolarDisorder #Migraine #PTSD

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I'm new here!

Hi, my name is Andrew Maynard. I'm here because I've been living with a seizure disorder since I was 3 years old.


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Guiding Principles in Conflict with Survival Instinct

Part 1 of 2 What would you do if, for 4 months, you had been trying, to no avail, to receive treatment for an excruciatingly painful infection in your jaw? The reason you have received no treatment was because your HMO dental insurance was unaccepted by all but one dentist in your area who required you to sign an $11,000 loan contract with a super high interest rate and $400 monthly payments before providing services, you have transportation barriers; you are on a small, fixed income and are unable to pay for treatment out-of-pocket; and, your debt-to-income ratio prevents you from qualifying for the usual credit programs. In addition to these barriers, you have found that, despite your condition originating as a dental issue, it has escalated to a medical issue as verified by your medical insurance carrier; however, no MD will treat this condition for the same reason as the dentists—they refuse to accept your medical insurance.

Being in this predicament myself, the best solution I could come up with was to drop the HMO dental insurance that was unaccepted by dentists and sign up for a PPO insurance that would be. Unfortunately, this PPO dental insurance is through my Medicare Advantage medical insurance as a supplemental coverage and only one dentist in my area is accepting this one, as well.

At first, I was overjoyed that this dental clinic would accept my insurance and I took the soonest possible appointment. Sadly, when I looked at my benefits documentation, I found that the sales representative had misread the outline of the coverage. She told me the coverage was 70%. I found out it is the copay that is 70%.

I am looking at an exam, x-rays, cleaning, scaling, root planing, and oral surgery with three extractions including general anesthesia preceded and followed by antibiotics and prescription pain medication. My estimated 70% share is $4033, before tax, with a $2000 deductible required to be paid before the insurance will pay the dentist. So, the dentist requires that I pay my entire copay upfront before they will provide services. Add to this figure the prescription copay for the antibiotics and pain medication as well as the $86, before tip, round trip ride-share fare. Even if I had a vehicle (a seizure disorder prohibits), the transportation would still be required because of the fact that a person undergoing general anesthesia is prohibited from driving within 24-hours of regaining consciousness.

It is important to note, Ride-share from my semi-rural location is hit and miss with reliability. Most drivers, upon seeing that the pickup is outside the metro area and only around 16 minutes in travel time, will decline the fare.

I am unable to rely on friends and family. The last time I asked my son for a medical ride he told me, “If you can’t take care of yourself, maybe, you belong in a nursing home. Don’t bother me.” Friends tell me either they work and are unable to take time off during business hours for a non-relative or that they have their own problems to deal with. I know these are excuses; because, I have told the working friends that I am willing to catch a ride to the clinic on their way to work and wait until the friend gets off work for a ride home and just bring a book to occupy myself while I wait for the clinic to open, spend all day there, and wait for the friend after the clinic closes. I also offer gas money and dinner. Their answer stays the same. My offer goes to the friends who say they have their own problems. Their answer stays the same and they only contact me, never to inquire about my condition, but because they want something from me.

So, there are community agencies I’ve reached out to for medical transportation—37 of them as well as the local Catholic Charities and Jewish Community Services. The community agencies have all turned me away; because, they either require I qualify for Medicaid or tell me I am out of the service area at my semi-rural address. I am ineligible for any Medicaid program; because, my gross income is $200 over the limit. The Catholic Charities representative told me COVID has tapped out their resources and they are unable to help me. Jewish Community Services has failed to return any of my messages. I have inquired with 211 and there is no transportation services they offer near me.

There used to be two transportation services available to me before COVID. There was a public transit bus; which, used to pick up the tenants in my area twice a month and take us to Walmart. From Walmart, we could access the public transit metro lines. This flex ride service was discontinued when one of the regular passengers, the man who advocated to get the program started, passed away. We were told by the transit system that the ridership was too low—because one passenger died!

The oth


rival coaches working together

Over the years I have been asked how did I manage to be a three season runner and more importantly to   be so respected everyone despite of having an NVLD and a Seizure Disorder.  What comes to mind is how my coach,Penny Sharrow, was so welcoming to me on the Varsity Winter and Spring track teams.She never treated me differently than my other teammates and through this Canton’s coach,John Casserly and other runners became close to me as well.By being so accepted and valued  I thrived as an athlete and as a person therefore I greatly believe being part of a team shouldn’t be so rare for someone with an NVLD.

This all started because Coach Casserly had known me from Cross-Country and was so impressed by my determination and perseverance. Having coached cross-Country and track for several years he had witnessed several athletes with similar difficulties give up way too quickly.  He gave me  extra support from the beginning till the end of my athletic career.What is special about this though is he always made sure Penny had already given me my pre and post race race talk  as he knew Penny was a fantastic coach and that she was incredible to me.

One of my most memorable moments was being able to lower my time by a minute as for the two of them this was like I had won the race. At first,  I thought their excitement was too much though I quickly realized it wasn’t as I was always told I couldn’t do varsity sports and these two coaches proved that theory to be wrong in the early years of my track career.  As time went on there were other moments like this for the many different races I ran and Penny and John were always giving me fantastic guidance and advice despite knowing I was always going to be slower than everyone else.

Due to the nature of my gross motor skills deficits along with a seizure disorder I never really got close to the performance level of the other distance runners despite my hard work. However for Penny and John too this was truly just a minor issue as what really mattered was that you did your best and did whatever you can to help the team and for me it was just to earn a  point for finishing each race. It truly taught me that success has a different meaning for every individual and hard work  can truly outweigh overall talent at times. Honestly,  I learned so much from distance running under their guidance and in the process was able to overcome the gross motor and social  deficits connected to my NVLD too by competing regularly and being with a great group of teenagers on a daily basis.

Understanding this led to me to becoming close to a few top runners. An example of this was during Winter track. The regular winner of the 1500 who ran for John always wished me good luck and waited for me at the finish line. This continued throughout my high school career and she was joined by one of her teammates  Cara and today the two of us are still great friends. Therefore I just wish more would understand how inclusion in a sport like track works so well as coaches and others love the most determined and supportive athlete and understand that success is all about doing your best.

Therefore by Penny Sharrow and John Casserly being incredible mentors to me , and other runners  supporting me and having some became great friends I believe inclusion works for individuals with an NVLD or a similar disability in sports. That being said inclusion just doesn’t happen. It requires hard work on your end and being able to trust and listen to your coaches.This starts by being honest about yourself and setting up realistic goals with your coach.With an  excellent work ethic and high level of determination I can say with great confidence that  coaches will become incredible mentors and many athletes will be come wonderful friends to you too.

Overall it is important to remember it  truly takes a village to raise a child so being and being an athlete increases the size of your village as your coaches and teammates support you. For me Penny and John’s endless  guidance and support  enriched my life  greatly so I strongly believe through hard work and determination you will have the same feelings about your own coaches and other coaches you meet. The same can be said about the friendships you will make with your teammates and other athletes. So think of giving it a try. I know you will think the world of your mentors and friends.