Hi everyone I need help, my daughter is 17yrs diagnosed with epilepsy from September 2015 because she had a seizure at school, she is in matric and she already had 7 seizures in counting. she has seen 2 different neurologist from 2 hospitals. MRI/CT SCAN, EEG were done and nothing was found. she is on epilim CR300, Lamictin and she now seem to be getting worse, hallucination, constant tiredness, terrible headaches/migraines, unbalanced, i need some advise as I do not know the sickness, no family members has it, it a new to me and she cant go to school as this affecting her.

I need to understand if this is normal and if does it go away after some time or what advise can be given. I desperately need my daughter to be back to normal, go to school and live a normal life.

What do I need to do

9 Replies

  • Hi - I am sorry to hear of your daughters condition, especially at her age. I experienced epilepsy from the age of 10 and had to find my way in overcoming the barriers, discrimination, etc. in my own live. Seizures may well be stress related and I am sure doctors would have mentioned menopause may play a role.

    We all have different metabolisms and lifestyles, so what recipe works for me may not work for her. I am pleased to hear you are seeing a neurologist - not everyone does - our lives are very special and one cannot put a price on them.

    I would advise you keep a diary on the seizures she has, when, where, how, time of day, tiredness, stress, what she ate/drank over the past 24 - 48 hours, etc. try to pick up a pattern that may be similar in all cases i.e. identifying potential triggers of the seizure and then discuss these at your next visit to the neurologist. It may be her lifestyle that is contributing to her having seizures i.e. eating habits, stimulants such as caffeine, excess sugar, lack of water, exercise, etc. Our bodies need some sort of balance. The Neurologists need to identify the type of seizures she has and what triggers them.

    If medications are not working or reacting negatively (side effects), immediately contact your doctor. There are a number of different medications and strengths that can be trialled. It may take a little while to find the most suitable recipe of medication to regulate her condition.

    I changed my outlook on life and turned my life around from a low point in my life with low self esteem to completely opposite. By setting greater personal goals eventually saw myself growing beyond the barriers in my life - resulting in fewer seizure frequencies and better medication control.

    Most cases can be controlled in one way or another, whether by medication, surgery, etc. We have some of the worlds best neurologists/epileptologists in this country and the one I see is Dr Butler at Constantiaberg Hospital.

    I have a lot of knowledge but just cannot put all into an email.

    I hope I have been of some assistance but feel free to call.

    Kind regards

    Tim de Villiers

    082 925 0404

  • Thank you so much Tim will definitely use your advise and if I'm having problems will contact or sms, hope you don't mind

  • Hey i have epilepsy sins i was 9 years old. The neurologist i went to is down in cape town and he got everything right I use epilim cr500 and epitec 100mg. The doctor was very good. And the headache thing is not normal not any of does things is normal the only time you have does tipe of stuff is when you had a seizures. One thing try and see if she gets it in her sleep because i did. The person that had a seizures in there sleep doesn't know it but some of those symptoms can be there like the headache and the tiredness

  • No Problem - feel free to contact me if you need further assistance.

    FYI: Voluntarily, I founded and ran an Epilepsy support group, Epicare, for 26 years, which I closed, as it was not feasible to continue and it started to impact too much on my professional career. I am still involved voluntarily as Vice National Chairman of Epilepsy South Africa and also edit their biannual Epinews newsletter so am fairly well connected in this field.

    Kind regards

    Tim de Villiers


  • Sorry to hear about your child. My daughter is now 19 and had her first seizure 5 years ago. She is also a downsyndrom child. I do not know what triggered her seizure on the first instance but we suspect she was unhappy as she had to move from one hostel to the other and we came to know that she was unhappy with the move as her new hostel mistress was very loud and would shout at the girls. She was not used to that kind of environment. She moved back to the old hostel but the seizures never stopped.

    Like it was said earlier, you need to identify what triggers her seizures. We have discovered that my daughter's seizures happen when she is excited. If we go for parties or weddings or other happy events, we know that we must be ready that the moment she goes to bed, within 2 hours of sleep she will have an attack. So you need to identify triggers and report to your neurologist.

    It is important to have one neurologist rather than taking your child to any doctor. It is important to build a relationship with one doctor (neurologist).

    The most important thing is to accept the challenge. Go for counselling if you need to. It is important to be strong for your child.

    Good luck.

  • thank you so much, I pray and wish you child wellness and happiness she deserves. Stay blessed

  • I would like to encourage you that your daughter will have a fully productive life, I was also diagnosed at 14, 25 years later I am a professional, bore two healthy daughters and live a full life. She just needs to find the right meds and lead a healthy lifestyle! Support her as well, that helps a lot

  • thank you so much for words of encouragement

  • Hi Bienkiehb, I feel for you as my son 13 yrs also had his first seizure in November here at home. It was the most frightening experience. I was so overwhelmed and at a loss as to how to help him. After many scary tests MRI,CATScan etc. nothing was found. Dr Butler is also our Neurologist. He is apparently one of the best in SA. He started my son off on 50mg x 2 a day and then he had a petit mal at school in the beginning of the year, so he put him up to 75mg x 2 a day. I am relieved to sat that thus far he has no side effects. Subsequently I have taken him to a Naturopath Eva at MOYO Health care in Fish Hoek, she is also brilliant. I do believe a healthy life style and eating habits have a lot to do with these seizures. She has suggested he take a combination of multivits and Omega 3. She picked up a couple of things like his breathing is very shallow and thus is a build up of stress. He needs to be aware of his breathing and learn to breath deeply and control his internal stress level. So as other people have advised you each case is different, but I do believe seeing someone like Eva gives one a bit more insight into the reason behind the seizures and help your daughter manage them. It's still not easy and I worry about him often but the more you equip yourself with the knowledge the more confident and in control of the situation one feels.

    Good luck and I hope your daughter starts feeling better soon.

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