Hi, my name is Racheal. My son had his first seizure last year in May. (19 years old) We took him to see a neuro and he had an eeg which was clear. He then had 5 more seizures until February this year when he was dignosed with Generalized Epilepsy. It has been an extremely challenging time for him, for me I am constantly on edge thinking when he will have another. He is on Epilim now 800mg daily, and I am praying that he does not have another seizure. I feel extremely anxious for him and worried that something bad will happen. My husband (not his dad) literally checked out of the situation and is not helpful at all. So, I am a foreigner in SA my son lives in my home country - my only support so far has been me. It is somthing i would like to get a handle on so that I can be a strong and positive motivation for my son and he can live a full unlimited life.
I've read so many positive stories on here and it has been a help, I am also thinking of maybe joing a support group or something before I loose myself in anxiety and worry.
Thank you for reading
Written by
Koukla7
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It is very difficult to accept the situation - I know, from personal experience.
I have lived with epilepsy for the past 46 years - since age of 10. With positive mind, knowledge on how to manage the condition and determination, anything is possible and you can live a normal life.
It is hard for a parent and a person with epilepsy to accept but that is life, nobody is perfect and this is how we are - things could be worse. Your son needs to learn to take control of his condition and not the other way around - in fact needs to champion it.
I experienced lack of confidence and self-esteem in my teens and early twenties.
It may take a while for doctors to get the dosage or, lets call it recipe of Medication right initially for an individual as we are all different with different metabolisms DNA, lifestyles, levels of activity, etc. What is important is to manage medication by taking it consistently, more or less as prescribed, so that there is a consistent level in ones bloodstream. He must take care in monitoring his condition to reach good control and the correct medical management of his condition. Most new generation medications of today target the type of condition. There are a lot of options and advancements are ongoing. Not all of the side effects on the box will necessarily affect your son - we are all different with different metabolisms, lifestyle, size, blood pressures etc.
Embarrassment & Humiliation is often the cause for people to shy away: he needs to rise above this - it is humiliating having seizures in front of people - some wet themselves, but by turning the situation around and using the opportunity to educate those around you.
This condition can crop up at any time, at any age in one’s life - no matter who they are, as it did with your son at 19 years of age. Anybody can have a seizure - they cannot say it will never happen to them - we all have a stress threshold and with other contributing factors - bang. There is no proof that this is a hereditary condition and it can be brought on by a knock to the head, stress and a number of other factors that affect the chemical and electrical activity in the brain.
1 in 100 people have epilepsy on average worldwide - there is sure to be another in the school, university, college, working environment, etc. who may have a different type of epilepsy i.e. nocturnal or absences - they may not even be aware they have seizures until it is drawn to their attention or identified. He needs to understand his condition and learn about epilepsy in general so he can put himself in a position to educate others around him, who are not in the know but you are not alone.
Most people with epilepsy underestimate themselves and tend to withdraw in case they may have a seizure. Epilepsy is primarily stress related and we can help ourselves in better managing our lifestyles to manage unnecessary stress. I realized in my twenties that there is a possibility that subconscious stress may make me more susceptible to seizures. I had various imaginary barriers holding me back from doing what I wanted in the event I would have a seizure. This is where the focus of seizures tends to take control and creates subconscious stress. Breaking down these barriers pushed epilepsy aside and I then took control of my condition. I then stepped out and decided to do what I wanted, within reason of course and, yes, I did have seizures, but I rose above them and got on with my life.
I know its not easy but one needs to start somewhere. I did long distance swimming, cycling and mountain biking - things that made me happy and where I have reached personal achievement. If I entered a race or challenge, whether it be in sport, education or whatever, I did not to win, but for personal achievement and goal setting and general betterment of my personal well being in life. By doing this you can lift a load and it can be a positive life changing experience.
I also started a support group in my twenties and in doing that, I found it was easier talking to others with the condition and sharing - it need not cost anything. No matter what colour, creed, education, etc. we are all together in a similar situation with a similar goal in improving our lives with epilepsy. There are Facebook support groups as well. Don't hide the condition, speak to others about it. People are a lot more accepting and educated today than they were in my day 30 to 40 years ago.
Monitoring: It is important is to keep a diary and after each seizure, write details, when, where, what activities, what you ate or drank in the past 24 or even 48 hours. Some foods stimulate people like caffeine, alcohol, coke, coffee, or other fizzy drinks, sugar, chocolate, etc. This does not mean that he has to stop them, but maybe reduce quantity. Use this diary to understand his condition - he is an individual and needs to accept what he has.The medication maintains a certain level in our blood and if left too long, those levels may drop below a threshold, which may make him more susceptible in having a seizure i.e. the risk may be there.
Another important factor is to keep hydrated with water. Dehydration is a contributor. I drink almost two litres per day. Cool drinks and coffee don't count. Try to live as much of a normal life possible.
I turned my whole life around and epilepsy has fallen away - I maintain mountain biking, long distance road cycling and basically lead an active lifestyle - I also have a very demanding job as a Senior Engineer, specialised in Traffic Engineering. I may have one seizure per annum but only due to my own stupidity - not listening to myself.
I am a volunteer and currently Vice National Chairman of Epilepsy South Africa. Epilepsy SA has a youth program, which may be very useful for him to belong to.
Look up the following two Youth ambassadors - there are many others:
Justin Dekker on Facebook - also motivational speaker
Kai Fitchen on Facebook - adventurer and motivational speaker
Thank you so much for your reply, I really cant thank you enough for taking the time. Yes I agree it was quite difficult to accept and he refused to accept that it may be epilepsy after the first seizure. Not to mention my family went through a period of fear and shock trying to deal with it all.
I will definitely get in touch with the youth ambassadors as well, and I am printing your post for my son, so he can see it really is not the end of the world and people go on to have great lives, and overcome the challenge.
Thank you for sharing your story. I was wondering if you would be willing to write a short article about your experiences that we could publish in Epinews? This is a publication by persons with epilepsy for persons with epilepsy (and those affected by the condition) published under the auspices of Epilepsy South Africa. If you are keen to do so, please email me at nationaldirector.no@epilepsy.org.za so that we can discuss this.
In addition, please note that Epilepsy South Africa is the South African chapter of the International Bureau for Epilepsy (IBE). As such, we are able to refer requests for assistance to sister organisations in most countries. If you and your won would like such assistance from us, please email me more information, particularly in which country your son lives and how we can contact him. I can the facilitate interaction with the relevant organisation where he lives.
You can also visit our website (epilepsy.org.za) and connect with us via Facebook. Our organisation also offers assistance and support. You can simply call us on 0860EPILEPSY to connect with the Branch closest to you.
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my daughter has down syndrom and she is 16. She developed Epilepsy last year in August.