Struggling to cope

Hi, my 19 year old son was diagnosed with generalised ideopathic epilepsy 3 years ago - basically, they don't know the cause. Later, as we discussed it, he told me that he had smacked his head against a wall in anger, which caused him minor concussion ( he had to sit and wasn't speakig properly). We told the neurologist, but was told that this was unlikely the cause, even though this happened a week or so prior to his first tonic, clonic seizure ( he also suffers absence seizures about 10 - 20 times a day, more frequent in the mornings). Initially, my husband was here to help, so I didn't have to cope on my own. However, we have since seperated (2 1/2 years ago) and I am now trying to deal with this by myself. I fell that I need to be here for my son upon his waking, but as he is a teenager, he stays awake till stupid hours, talking with his friends etc, so I never know when he will wake. Fortunately I work part-time evenings, so I am able to be here for most of the time, the problem is affecting my family life ( I have another son and four grandchildren), my social life (I rarely go to visit people) and generally my whole life. I am afraid of not being here when he wakes as I see the fear in his eyes at the onset of a seizure and I despair at the thout of him suffering that whilst on his own : ( Any suggestions as to coping strategies that may help? How do others deal with this?

2 Replies

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  • Hi,

    Thank you for your message. It sounds though this has been a very challenging time for you. Supporting a family member with a diagnosis of epilepsy can be tough, especially for a parent. The frustration of not knowing what caused the epilepsy can produce a mix of emotions for both the person with epilepsy and the people around them.

    There are two main types of epilepsy. These are generalised and focal. Both absence and tonic-clonic seizures are types of generalised seizures. There is often no known cause for generalised epilepsy. Focal epilepsy is more likely to have a cause such as brain injury. So it is possible there isn’t any explanation as to why your son has epilepsy.

    Balancing the challenges of teenage life alongside a health condition will have presented him with challenges which many teenagers never face. For some people it takes time to work out how to live with epilepsy. It may be helpful to let him know about our young person’s website which has information about this. It also has advice from other young people living with epilepsy: youngpeople.epilepsy.org.uk/

    It is positive that he is working with his neurologist. With the right treatment seven out of 10 people can have their seizures fully controlled. It may be helpful for him to learn more about seizure triggers so that he can try to reduce the chances of having a seizure. Our website has more information about seizure triggers: epilepsy.org.uk/info/triggers

    Learning more about epilepsy as a family will make you feel more confident in how you support your son. It may be useful for his sibling to learn more about epilepsy and explore how it affects him. Our website has some information which may help him to do this: epilepsy.org.uk/info/people...

    It sounds like you have many pressures in your life at the moment. Wellbeing is vitally important for the whole family. Your GP may be able to support you if you find these pressures becoming overwhelming in any way. We also have a great e-learning module on wellbeing which may be useful to you all: learn.epilepsy.org.uk/cours...

    If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Action Helpline freephone 0808 800 5050.

    Cherry

    Advice and Information Team

  • Dear elnino,

    I agree with all Cherry has said, however, I was a Springboard Diver and hit a diving board at the age of 14. At the age of 16, my tonic clonic seizures started which we are convinced was from the hit on the head, stress from exams and hormones at that age.

    Supporting a family member alone is also difficult. Separation from your husband could also have a main impact on your son's emotions, even though he may not share his feelings with you. Trauma of the relationship can bring back memories, missing his father and more can also have an affect. I am from a divorced Mum and Dad who both re-married and PTSD (post traumatic stress disorder) is common.

    Acceptance that one has epilepsy is so important, but hard to understand whilst a teenager, especially when one has a group of friends who bully and tease him about it.

    Well being is so important for you and your son. Please discuss with the Neurologist or G.P. should you feel uncomfortable with the way his life is going.

    We are here for support - feel free to make further contact.

    Regards,

    Les

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