A 28 year journey with epilepsy
For many years she had no idea wat caused the strange sensations she experienced, the – often – absent minded stares, the "funny" feelings in her mouth and stomach, and the sudden feelings of invisible people watching or chasing her.
*Melissa’s journey with epilepsy due to an Epidural Hematoma (a type of cyst) started after a car accident in April 1994 when she was eight months old.
“In 2002 my grade two teacher called my parents in for a meeting. She had noticed small things in my behaviour, amongst other, the absent -minded staring and a type of anxiousness or scare when we covered certain topics. Right about that time, my parents also noticed the first time I had a seizure after the accident. They were busy talking to me and once again I looked completely absent minded. I can remember them speaking to me, but I had no idea what they were saying. To me it was just a buzzing sound of nonsense which I could not understand, nor could I tell them that I have no idea what they were saying. It was like standing but being paralyzed at the same time. Then, my cheeks started twitching/ jerking. It lasted for mere seconds before I returned to my old self.
Our GP who already had all the history from the time of the car accident, diagnosed me with epilepsy. A neurologist confirmed the diagnosis of epilepsy as absence seizures – also known as petit mal seizures. I was prescribed to use 300 milligrams (mg) of Epilim twice a day. I have learnt that the type of seizure you are diagnosed with in one phase of your life will not always remain the same during the rest of your life. That being said, just because you got diagnosed with epilepsy does not mean you are forever “doomed” to suffer from it.
Part of my struggle was simply due to using medication that did not work together with the rest of my body. However, if the seizure is caused by a traumatic brain injury such as those caused by car accidents, the chances of your epileptic seizures being part of the rest of your life is very high.
It is important to know that it is more often a combination of different types of seizures instead of only one specific seizure (Shafer and Sirven , 2014). Seizures can also change during a person’s lifetime as it is often linked to the chemical fluctuations in a human body. For instance: While a child between the age of 0 – 10 years can experience focal seizures that often turn into generalized absence seizures, it can develop into more aggressive seizures such as atonic and tonic or even clonic seizures during puberty (age 11-19 years). This may be as a result of the increased chemical, and so, hormonal fluctuations in a teenager’s body. As the affected person becomes an adult the severity of seizures can either reduce or increase – it all depends on that person’s chemical “makeup”. In my case I developed photosensitive, nocturnal and catamenial epilepsy. These seizures are categorized based on what triggers the seizure or the time of day they occur instead of the symptoms they have.
Each person suffering from epilepsy may be affected differently and can have different triggers for their seizures. Some might feel the seizure approaching (This is called an aura and is also the first stage of a seizure) while other people do not get an aura at all. The second group, from the above mentioned, only start experiencing the seizure at its middle point, also known as the ictal phase. The ictal phase starts from the first symptoms up until the end of the seizure. Even though the first symptoms also classify as the aura, the difference is; people that can differentiate between an aura and the rest of the seizure will be able to counteract the rest of the seizure from occurring (Schachter, Shafer and Sirven, 2014). This can be done by taking a few deep breaths, having a few sips of water – I found warm water works best for me – and just take a minute for the oxygen to refresh your brain.
In my second last year of high school the types of seizures and its occurrence were getting out of hand. My neurologist prescribed Redilev – an anti-epileptic drug (AED) usually prescribed for myoclonic epilepsy along with 10mg Urbanol tablets. Urbanol is normally used to treat anxiety, but when prescribed together with the right AED it also helps to control epilepsy.
As Redilev was only available in South Africa at the time, my medication was changed again and I continued with Keppra. The combination with Urbanol was somewhat effective together with additional things I avoided or learnt to do as I started my own research on how to prevent my seizures.
In 2019 I started keeping a journal, specifically for epilepsy, making notes on which days I had seizures, what happened during the seizure (if I could recall the events during the seizure), what was the aftermath and the specific times I took my medication. I made notes on the food I ate, what I drank and if any of that made me feel unwell.
During the Keppra/ Urbanol phase we tried quite a few combinations, changing the amounts of Keppra to be used. Urbanol was only changed once during that time. We lowered it to 5mg per day. The normal procedure would be for the neurologist to take your age and weight and work out the amount (in mg) of Keppra to be used, and they did. The problem was that my body did not respond the way it should to the calculated amount. My neurologist prescribed Dyna-Levetiracetam, the generic version of Keppra. My initial prescription was then changed to 750mg Dyna-Levetiracetam per day together with 5mg Urbanol per day.
Do not feel afraid to question your neurologist about your prescription if it does not work for you. However, before doing so make sure you have done enough research on your seizures and the medication available, as well as your current medication.
In 2014 I started studying at the University of Namibia (UNAM) and I truly enjoyed my first year. Then examinations started. Chemical and Mathematical related modules were usually the ones to trigger seizures, especially during tests or exams.
In my third year one of my lecturers said he could see I knew what I was doing but he could also see that I never answered enough questions to pass. To get extra time, I had to go to a specialist for some tests and to my neurologist to provide evidence that I did indeed have epilepsy. In 2016 I was diagnosed with catamenial epilepsy in 2016 and my medication readjusted to one extra 5mg Urbanol capsule.
I experienced almost two full years without epilepsy and I could finally go for my learners and drivers’ licenses.
If possible, avoid extra medication such as vitamin supplements, rather try and obtain it from its natural source. Sometimes I experience a major headache that starts from the neck, spreading across the skull which usually indicates a seizure that will occur sometime during the day. Try not to think too far ahead, this leads to panic and anxiety which trigger seizures.
If you feel you are on the verge of mentally breaking – just hold on a little bit longer, you’ll survive and gain life experience.” Resources: epilepsysociety.org.uk, www.medicalnewstoday.com, https://www.epilepsy.com, www.tabletwise.net
“In 2002 my grade two teacher called my parents in for a meeting. She had noticed small things in my behaviour, amongst other, the absent -minded staring and a type of anxiousness or scare when we covered certain topics. Right about that time, my parents also noticed the first time I had a seizure after the accident. They were busy talking to me and once again I looked completely absent minded. I can remember them speaking to me, but I had no idea what they were saying. To me it was just a buzzing sound of nonsense which I could not understand, nor could I tell them that I have no idea what they were saying. It was like standing but being paralyzed at the same time. Then, my cheeks started twitching/ jerking. It lasted for mere seconds before I returned to my old self.
Our GP who already had all the history from the time of the car accident, diagnosed me with epilepsy. A neurologist confirmed the diagnosis of epilepsy as absence seizures – also known as petit mal seizures. I was prescribed to use 300 milligrams (mg) of Epilim twice a day. I have learnt that the type of seizure you are diagnosed with in one phase of your life will not always remain the same during the rest of your life. That being said, just because you got diagnosed with epilepsy does not mean you are forever “doomed” to suffer from it.
Part of my struggle was simply due to using medication that did not work together with the rest of my body. However, if the seizure is caused by a traumatic brain injury such as those caused by car accidents, the chances of your epileptic seizures being part of the rest of your life is very high.
It is important to know that it is more often a combination of different types of seizures instead of only one specific seizure (Shafer and Sirven , 2014). Seizures can also change during a person’s lifetime as it is often linked to the chemical fluctuations in a human body. For instance: While a child between the age of 0 – 10 years can experience focal seizures that often turn into generalized absence seizures, it can develop into more aggressive seizures such as atonic and tonic or even clonic seizures during puberty (age 11-19 years). This may be as a result of the increased chemical, and so, hormonal fluctuations in a teenager’s body. As the affected person becomes an adult the severity of seizures can either reduce or increase – it all depends on that person’s chemical “makeup”. In my case I developed photosensitive, nocturnal and catamenial epilepsy. These seizures are categorized based on what triggers the seizure or the time of day they occur instead of the symptoms they have.
Each person suffering from epilepsy may be affected differently and can have different triggers for their seizures. Some might feel the seizure approaching (This is called an aura and is also the first stage of a seizure) while other people do not get an aura at all. The second group, from the above mentioned, only start experiencing the seizure at its middle point, also known as the ictal phase. The ictal phase starts from the first symptoms up until the end of the seizure. Even though the first symptoms also classify as the aura, the difference is; people that can differentiate between an aura and the rest of the seizure will be able to counteract the rest of the seizure from occurring (Schachter, Shafer and Sirven, 2014). This can be done by taking a few deep breaths, having a few sips of water – I found warm water works best for me – and just take a minute for the oxygen to refresh your brain.
In my second last year of high school the types of seizures and its occurrence were getting out of hand. My neurologist prescribed Redilev – an anti-epileptic drug (AED) usually prescribed for myoclonic epilepsy along with 10mg Urbanol tablets. Urbanol is normally used to treat anxiety, but when prescribed together with the right AED it also helps to control epilepsy.
As Redilev was only available in South Africa at the time, my medication was changed again and I continued with Keppra. The combination with Urbanol was somewhat effective together with additional things I avoided or learnt to do as I started my own research on how to prevent my seizures.
In 2019 I started keeping a journal, specifically for epilepsy, making notes on which days I had seizures, what happened during the seizure (if I could recall the events during the seizure), what was the aftermath and the specific times I took my medication. I made notes on the food I ate, what I drank and if any of that made me feel unwell.
During the Keppra/ Urbanol phase we tried quite a few combinations, changing the amounts of Keppra to be used. Urbanol was only changed once during that time. We lowered it to 5mg per day. The normal procedure would be for the neurologist to take your age and weight and work out the amount (in mg) of Keppra to be used, and they did. The problem was that my body did not respond the way it should to the calculated amount. My neurologist prescribed Dyna-Levetiracetam, the generic version of Keppra. My initial prescription was then changed to 750mg Dyna-Levetiracetam per day together with 5mg Urbanol per day.
Do not feel afraid to question your neurologist about your prescription if it does not work for you. However, before doing so make sure you have done enough research on your seizures and the medication available, as well as your current medication.
In 2014 I started studying at the University of Namibia (UNAM) and I truly enjoyed my first year. Then examinations started. Chemical and Mathematical related modules were usually the ones to trigger seizures, especially during tests or exams.
In my third year one of my lecturers said he could see I knew what I was doing but he could also see that I never answered enough questions to pass. To get extra time, I had to go to a specialist for some tests and to my neurologist to provide evidence that I did indeed have epilepsy. In 2016 I was diagnosed with catamenial epilepsy in 2016 and my medication readjusted to one extra 5mg Urbanol capsule.
I experienced almost two full years without epilepsy and I could finally go for my learners and drivers’ licenses.
If possible, avoid extra medication such as vitamin supplements, rather try and obtain it from its natural source. Sometimes I experience a major headache that starts from the neck, spreading across the skull which usually indicates a seizure that will occur sometime during the day. Try not to think too far ahead, this leads to panic and anxiety which trigger seizures.
If you feel you are on the verge of mentally breaking – just hold on a little bit longer, you’ll survive and gain life experience.” Resources: epilepsysociety.org.uk, www.medicalnewstoday.com, https://www.epilepsy.com, www.tabletwise.net
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