The Trouble with AEDs…

Sharing a very informative post from my friend, Phylis.

NO! I can’t believe this happened…

I received some disappointing news and shocking – it was a first. I’ve been with my Neurologist for 8 years. We’ve tried everything to get my seizures under control. We’ve consulted with the epileptologist in the group once years ago. The conclusion was that my Dr. was doing everything that he could. Over the years, I’ve been in and to so many Dr’s and different facilities due to epilepsy, it’s sickening to think about.
My current neurologist works out of a level 3 comprehensive epilepsy treatment center. At my last appointment on Tuesday when I told him about the problems I was having, he said with a heavy heart, “David, it’s not that I don’t want you here, but I need to transfer your care to a level 4 comprehensive epilepsy treatment center (which will be UCI) where you’ll be with a team of 5 epileptologists. Over there they have access to things I don’t.” It broke my heart.
Finding and developing a good relationship with a Dr. is so hard, and that’s what I had with him. I asked what are they going to do that we haven’t? I’m not interested in more medications (26 is enough) and I’m not a surgery candidate. I’ve already had a VNS, so what are they going to do that we haven’t? He explained that he feels, since my epilepsy case is so difficult, that’s where it’s best for me at this time because they’ve got access to new research programs, etc..
So, I’ll go BACK to the epileptologists at the UCI Comprehensive Epilepsy Treatment Center and see if they can do anything or make some changes that will improve my life…. I’m not hopeful. We found my first epileptologist over there when I was 19 years old.
On another note, I’ve been trying to manage some “issues” for months now. Since my mTBI in December, I have been dealing with things that are overwhelming me. Tuesday at the Dr. I was officially diagnosed with PTSD and also PCS (Post Concussion Syndrome). Although I’m glad to finally have a diagnosis so that I can move forward with treatment,  I was also saddened by the news. At times it’s been difficult just to breath.
God bless all of you that are fighting these horrible conditions.


David’s story with Epilepsy

The seizures in my life that have brought with them pains that will never go away. They become a part of us, they journey the paths we take and go wherever we go in life. We can never get rid of them, but we can try to understand, accept them, and learn to deal with them through acts of pleasure that we experience in life. Let me explain the seizures that I live with everyday. I have primary generalized epilepsy (onset seizures):

  • Motor symptoms may include sustained rhythmic jerking movements (clonic), muscles becoming weak or limp (atonic), muscles becoming tense or rigid (tonic), brief muscle twitching (myoclonus), or epileptic spasms (body flexes and extends repeatedly).
  • Non-motor symptoms are usually called absence seizures. These can be typical or atypical absence seizures (staring spells). Absence seizures can also have brief twitches (myoclonus) that can affect a specific part of the body or just the eyelids.

My battle with epilepsy began when I was sixteen; I was on vacation (the summer before my senior year in high school) in Blythe, Ca (desert) driving home from New Mexico. I had a very violent tonic-clonic seizure in the car which lasted over 12 minutes. This was just the beginning of a very long battle.

We now know that I’ve had epilepsy since I was a baby. It just took someone to witness the tonic-clonic before I was diagnosed and we started the research. I woke up in the hospital over a day later not knowing what had happened or where I was. I was as scared as I ever was and I didn’t know why I hurt so badly. I was so confused; I wanted to talk but couldn’t formulate sentences, then I would pass out again because I was so exhausted.

As you can imagine my parents were freaking out so to speak as to why their son had a seizure – NO I WASN’T USING DRUGS. Yes they actually asked that several times. They all wanted to know “what was wrong with David?” I began having quite a few tonic-clonic seizures as a teen and continued as a young adult that always seemed to cause some type of catastrophic failure in my life. But life goes on!!

At sixteen, I was issued a driver’s license and I drove for a while.  I was so excited to get my license. I always felt different from the other kids because I had epilepsy. I always felt like I had to prove something. This was short lived because I had another seizure and at that time the DMV suspended my license for a year and a half. During my senior year of high school, I was afraid to tell anyone that I had epilepsy except for my best friend (who always had my back) and never said a word to anyone about my seizures. He would always “watch out” for me whenever we would go someplace; I knew that I could count on him.

We had gone to see several neurologists, doctors and specialists of all kinds. I ended up going to see a holistic doctor in Santa Monica for treatments to see if there was a chemical imbalance. We went from Orange County to L.A. County, Inland Empire to San Diego County and we reached out to every organization that we could find at the time (Epilepsy Foundation etc.)  DSC01230We didn’t know anything about epilepsy and had to learn all we could. My mother has been my biggest advocate my help and friend (above being my mother) with my epilepsy.  I don’t know what I would have done without her. She is still the first one I look around for and want after I have a seizure; she is the only one in my life that has shared every detail and been involved of every aspect of my epilepsy.

When I was in my early twenties I was working at John Wayne airport in California, fueling planes. I was about ready to get inside of a 5,000 gallon jet fuel truck and head to the commercial ramp to fuel a plane, when suddenly I went into a seizure.  My muscles tightened and my foot went all the way down on the gas pedal. I crashed the van in to the side of a private jet which knocked me towards the runway right in the path of a landing DC-9. I crossed the commercial runway then the smaller runway hitting a helicopter that was on the tarmac and finally crashing in to a light pole. This as you might have guessed ended my career at the airport – and my license was suspended AGAIN! I slowly was falling into a depression and not even realizing it. I was withdrawing from the world and feeling hopeless inside. I was afraid to tell others how I felt. I felt trapped in a corner.

I finally met my first epileptologist who was able to actually get my seizures under control by getting me on the correct medicines. I remained (tonic-clonic) seizure free for almost 11 years. Keep in mind that I’d been put on drug after drug trying to control my seizures, but nothing had worked. 

When my daughter was three, we lived in NJ; we decided to come out to California for a visit. While on the plane my daughter had a seizure (3 yrs old.) It was the single most gut wrenching experience of my life. We had to make an emergency landing in Ohio and we spent a week at Children’s Hospital of Ohio, not the vacation we had planned. My daughter had a total of 3 seizures over the next year and luckily no more. She is now an adult and remains seizure free.

In July of 2006 I had a seizure while at work. TheKiera20in20the20Hospital20014y called it a breakthrough seizure and increased the medicine I was taking. Almost exactly a year later I had another seizure and at that time the Dr changed medicines again. A month later, I had another seizure and another, so off of those medicines I came and I started a different medicine regimen. My mom flew back to NJ to be with me and we had Thanksgiving 2006 together (at Boston Market) that was a first EVER!! Things seemed to stabilize and she left to go home for Christmas in CA.

The seizure that changed my life occurred just a couple of months later. It was in January 2007 outside a church in New Jersey, where I was picking up my daughter for her overnight stay with me. That night it was snowing so I had started my truck to warm it up and walked over to get her when down I went into a massive tonic-clonic seizure. This time it was no different; (as always landing on my knees) and falling on my face leaving me 3 permanent scars.  I was “beat up” as usual from the fall with scraping, bruising and sprains. I went into the hospital and stayed there for treatment, testing and medication changes (hooked up to a video EEG) for three and a half weeks. I lost that job too, during this time (not the first job).

We (family) decided that I had to fly home for a couple of weeks for support and talk about some possible life changes. During that time the decision was made for me to move back home (away from my daughter) to be with family. So, inside of two weeks we packed, sold or gave away all of my belongings in NJ and moved me back home to California.

It also seemed like it was time for me to do something to help raise awareness about epilepsy, which was slowly taking away the life I once new. So I became an advocate, speaking where I could and supporting people online. Then, eventually I created a non-profit organization called, The Epilepsy Connection.

Our mission was to help eliminate the many myths and stigmas associated with epilepsy and related diseases, advocate for more funding, and help to empower people affected by seizures, so that they can create a better quality of life and achieve independence.


I was on a mission to raise epilepsy awareness and improve the lives of people living with seizures. As I said, “This is my outlet. It’s my evil, and everything.” But can an all-consuming epilepsy lifestyle be healthy? Perhaps it takes a certain type of person to embrace it.

The goals that we were focused on at The Epilepsy Connection were straight forward.

  • Raise epilepsy and SUDEP awareness for the prevention, control, and cure of epilepsy.
  • Epilepsy support groups for adults, teens and children living with seizures.
  • Educate our community about the proper care and management needed for people with epilepsy.
  • Provide a community-based forum in which patients, professionals and loved ones can become proactive and involved.
  • Grants for service dogs and seizure detection devices.
  • Financial assistance for protective helmets/seizure medications/alternative treatments.
  • Network with existing foundations that provide services which will benefit members.

The Foundation was able to help people in many ways, both locally, nationally and worldwide, via social media. We were even able to provide assistance for seizure detection devices and service dogs from CA to FL. However, we decided to cease operations in 2015.

DSC01677 (5)During the period that I had the Foundation, I had been (tonic-clonic) seizure free again for almost two years. One day while riding my bike I had a tonic-clonic seizure that wiped me out for over a day. I can remember crossing the intersection (riding next to a bus) then waking up in the hospital hurting and exhausted. I just couldn’t believe that I had another (tonic-clonic) seizure. I suffered a mild concussion even though I was wearing my helmet and since then my seizure frequency has increased. One of the unique things about epilepsy is that it is not unusual for seizures to change type, frequency or intensity.

I also decided to have surgery to install the VNS (vagus nerve stimulator) as an adjunct therapy, in August 2010. Over the years, I’ve taken 26 different seizure medications to obtain good seizure control. I’ve been on a single medication and multiple different medications per day in varying doses and all different drug cocktails trying to find something that works. I’m currently taking multiple medications and still pursue alternative treatments. The VNS stimulator unfortunately was not very 527216680655950effective and due to a cervical surgery that was needed in 2015, it was removed.

Since we cannot seem to gain good seizure control I decided that it would be a good idea for me to wear a helmet. I am also doing this to help raise awareness of the dangers of seizures and epilepsy. 

Service dogs have long been an interest to me. I decided that a seizure alert/response dog would be worth looking into. Through Little Angels Service Dogs, We’ve been training a beautiful female yellow Labrador retriever named “Miss Chevious Allie Poochino” but AllieI just call her Allie. I have had a great opportunity to get excellent professional training and help training Allie. She goes everywhere with me and is with me 24/7. Allie has become my best friend and protector and is really helping to improve my quality of life.

With all of this going on in my life, I made the very hard, but I feel it was the smart decision – to give up driving. For the safety of everyone else, I just couldn’t drive anymore. I will never, ever, get behind the wheel of a car again, no matter how hard this makes my life. I have come to the realization that it is an incredibly irresponsible and selfish thing to do. Life I have learned is too precious! I have had to learn to go by other people’s schedule. I am not one to ask for people’s pity or ask for help from someone. I consider myself a strong, independent person. I want to take care of myself. Being able to have the freedom to get into a car and choose where you want to go, how you want to go, is something we all take for granted. This is a freedom that I no longer enjoy, and I miss it terribly.

In 2012, my seizures had become so out of control that I could no longer work. I’ve been disabled and on SSDI ever since. Living with epilepsy creates all kinds of problems like major depression, anxiety, cognitive problems, memory issues and SUDEP (sudden unexpected death in epilepsy). As well as all kinds of medication side effects. Trying to develop a relationship, date, etc. can be extremely challenging, for both parties. Needless to say, I’ve attempted and failed several times at dating. The last time was in December of 2017. IMG_3621I had a (tonic-clonic) seizure while out with a woman eating dinner at a restaurant. They informed me that I was in a state of status epilepticus. Two and a half days later I woke up in ICU at the hospital. I had a severe concussion and brain bleed, and hurt my neck and back during the fall out of the chair, and both would require surgery. I spent 17 days in the hospital and came out with cervical fusion from C4-C7 and double anterior plating, because I’m a fall risk. It’s now more than 9 months into the recovery process, physically and mentally. My lower lumbar back surgery has now finally been scheduled for November 6th, 2018.

When I’m having non-motor symptom seizures, (which happen every few minutes, everyday) unless you know what you’re looking for you wouldn’t even notice. I’m the only one that feels the impact, which can be frightening, confusing, frustrating, disorienting and tiring to give you some idea. However, the motor symptom seizures (the kind that you think of when you hear the word “seizure”) are devastating when they occur. I’m thankful that I don’t have those everyday.

After this latest seizure, my neurologist has added a third seizure medicine. I continue to have breakthrough seizures.

So the journey continues… stay tuned!