Unless you ask me about the scar on my head, you might never know I have epilepsy. The mark left by a thrown brick and subsequent metal plate that had to be inserted in my head serve as a visual reminder of the day my journey with epilepsy began, nearly 45 years ago. I consider myself fortunate because my epilepsy is medically controlled and I have not had a seizure in over 40 years. I am able to go about my daily life. But it wasn’t always this way. 

A portion of my medical records from the injury

After my injury, I was rushed to my local hospital in Swindon and within an hour, I had my first seizure. I didn’t realize that I had a seizure, I didn’t know what was happening. Actually, I didn’t know what a seizure was, or as they were called in England, “a fit”. It was clear I needed a specialist neurosurgeon and I was quickly rushed to The Radcliffe Infirmary in Oxford, England. I have a foggy memory of these hours. My first memory of being at Oxford was in the recovery room after surgery to remove a piece of the brick and some of my skull.  I can still see the tile wall and my mum and dad. 

I spent a week in Oxford in an adult ward of about 20 men with various injuries: broken legs, broken arms, one person with severe brain surgery and me, now with a hole in the front of my head where the skull had been removed. I have some vivid memories from that time: when the tube that was inserted in the skin of my head to suck out excess blood was removed. A quick tug and it was out. It still turns my stomach. Another was when the stitches were removed, as well as the four times a day injections of antibiotics into one of my buttocks. I continued to have seizures during this time, although by taking phenobarbitone the frequency was reduced.

After a week, I was transferred back to Swindon for another week. In the transfer from Oxford to Swindon neither hospital gave me my noon time anti-convulsants. I sat at the bedside seat for lunch, then I recall being tired and confused in bed wondering why the floor was wet. Slowly I remembered: I was starting lunch then I had an aura, a seizure must then have occurred which caused me to spill my food – hence the wet washed floor. I was deflated and slept for the rest of the day.  

Much of the next few weeks are unclear. The high doses of phenobarbitone caused me to be constantly tired and drowsy. Even the next few years of memories are confused. I think that some of this missing time is also a result of having blocked out much of this difficult period from my memory. For example, during a Sunday lunch with my family, I had a seizure. My mum tried to clear food from my mouth to prevent me from choking and I ended up biting her finger, down to the bone. My brother recently reminded me of this event and I have no recollection of it all.  I am thankful for how supportive my family was of me during this time period. I do remember wanting to resume a normal life. In fact, I didn’t realize what had really happened to me, and that’s probably good.   

During this whole period there was constant fear since my medication levels were being adjusted to try to reduce the sedation and allow my brain to function better. There was a constant see-saw between retaining sufficient anti-convulsant to prevent seizures and reducing the drowsiness. It’s a very personal and lengthy experiment, reduce too much and you might have a seizure. Increase too much and you’re not able to live the life you want. 

I remember times where when I started taking less medication and I kept thinking that I would have a seizure. If I heard a sound I thought a seizure was coming (my aura includes sounds). There were many times when I thought I was about to have a seizure. But I didn’t and gradually I gained confidence and turned the fear into positive thinking. 

I found ways to do things. It wasn’t easy and resulted in some embarrassing moments.  I once had a seizure after running around the school track. One summer I tried to get a job. I was walking down a street 3 blocks from my home to go to a job interview. Boom. Another seizure. I remember regaining consciousness, the confusion, the exhaustion, people around me concerned and even panicking. When I had the aura, I managed to sit on the ground before losing consciousness. I was now on my back looking to the sky and into the faces of the concerned people. I asked them to take me home. But they had called the ambulance and it quickly arrived. I pleaded with the paramedics and asked them to take me home. “I have only had a seizure”. But off to the hospital I went. 

My parents and I at graduation from University. Their support and belief in me was instrumental in my success today.

A month before going to University, my family doctor decided that I should come off medications so that I wouldn’t need them at University. We tapered them off over three weeks. Initially I was fine – but just for a few days. I arrived at University and to the Hall of Residence (dormitory). The first evening there was a social event.  I had a seizure in front of everyone. What a way to be introduced to my new university mates! The next morning, Charlie, my neighbor, put his arm around me and said “Phil, what can I do to help?” He was amazing. Everyone was.  

That was the last seizure that I had. Since that time my medications have been adjusted and I am now on Valproic acid and Keppra.  

The journey with epilepsy is a strange one which can feel very isolated. Even with a strong support network around you, you’re still the one having the seizures. While my medications were being adjusted, I remember asking myself, when will the next seizure occur? To this day, this worry is in the back of my mind. I am able to participate in activities like sailing, but I do so with guardrails in place.

To help overcome this worry, I have tried to turn it into a positive. Instead of thinking of the next time I’ll have a seizure, I focus on how long it has been since I’ve had a seizure. A week seizure free, a month seizure free, and luckily in my case – years seizure free.  

16 thoughts on “My Journey With Epilepsy

  1. Thank you for this. My son is 18, autistic, nonverbal . He developed epilepsy at age 15. We have had lots of ups and downs. Right now we are 15 days seizure free. I think he had an aura because he will get himself to a safe place before the seizure hits. He is the light of my life .

    1. Hi Harriet – 15 days and counting. From my memories of my period with seizures the support my family gave me was tremendous and so helpful. I am sure that your son appreciates your support.

  2. Ps, Phil my brother had epelepsy for 20 years, he just had a fit one day in his thirties and was diagnosed, where did it come from? He got hit with a small stone to the head 20 years earlier but no operation was needed just cleaned it up at home? He died last year at 55yr old of stomach cancer, miss him loads.

    1. Dear Mark – So sorry for your loss. I only wish that more people knew the potential long term consequences of throwing stones at people. Be well. Phil

  3. Hi Phil.
    My name is Janet I am Tyler’s mom he’s 12 and right now battling to come to terms with his epilepsy. He had it since a baby of 8 months, but now he I aware of it as such. I am trying to get to as many people and situations for him to relate to. He has auras and his last seizure was just at the beginning of lock down here in South Africa. Tyler and I will both be on this journey with you. I was an avid young sailor myself thanks to my dad he taught us on hobies and a stadt. I am absolutely blessed to have come across this now as it really makes my heart sore that Tyler is battling with it. Thank you

    1. Thanks for writing Janet and for you and Tyler being on this journey. I imagine that as a mother it’s a tough battle for you. But stay strong for Tyler and help him expand what he does to live a fuller life. Please reach out and let me know how his journey is progressing. regards Phil

  4. Thank you for sharing your journey and good luck for your forthcoming travels.

    I was diagnosed at the age of 53 but my seizures are thought to have started in puberty very infrequent say one every year or two. Decided after various drugs over a few years, which in one case caused me to have a cluster seizure, to come off all medication would rather take the risk of a seizure than suffer the side effects of being medicated. I appreciate that the medication is a lifesaver for some though. Now at 61 am doing much better.

  5. Interesting to read about your epilepsy journey – mine has been a 35 year battle and is still ongoing. It started whilst at work at age 23; I suddenly went into status for three and half hours, with no known issues before. Originally from England, and now living in Canada, I contacted my family back in England and discovered that I had had febrile seizures as a baby, and that my aunt had also been diagnosed with epilepsy as a teenager. Medication initially helped to control the seizures, but they resurfaced again after a few years and have consistently gotten worse, despite two brain surgeries and two neurosurgeries, including the VNS implant. I finally had to stop working after dealing with multiple daily grandmals for many years. I used to sail and race all the time growing up, and used to even own a boat myself and race. Losing the ability to drive, as well as other activities that are too risky with uncontrolled seizures, has drastically changed my life. I have many scars on my body from accidents whilst during a seizure and count myself lucky to still be alive. I was approved for the RNS surgery in the USA (not available in Canada or the UK) but covid prevented that. On permanent disability for many years now, I do as much volunteering as possible, and am currently writing a book. I wish you well on your sailing adventures and look forward to seeing where you go!

  6. I am very surprised and intrigued by your sailing with epilepsy. It is sailing that caused my husband to get epilepsy. He was hit in the head by a boom 9 years ago. And only recently diagnosed with epilepsy. He has had migraines since the day he was hit, and he would go through episodes of zoning out in his mind… But he didn’t know what it was. Through many phases of seeing different doctors. They figured it out with an EEG test.

    1. That boom! Sorry to hear about how his epilepsy has developed. Hopefully with the EEG information and formal diagnosis he can get medical control. It took me many years to get control but thankfully I am now able to do many things with safety guardrails in place. Do you think he will try to sail again?

  7. What kind of sailboat do you have? My husband is a sailor and he sailed the length of the west coast of the USA between British Columbia and Puerto Vallarta, Mexico. He misses sailing! He is curious to know what kind of boat you have, so I told him I would ask.

    1. Thanks for reaching out. I currently sail a Sunfast 3300 which is specialized for shorthanded sailing offshore. A really fun boat. Please pass along my regards.

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