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Epilepsy South Africa
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Recent diagnosis, really looking for guidance.

Beginning of January I started my new job ended up only beeing there a day as the following day I started having seizures. So I'm still in the inititial stages and everything is done through our state hospital, so it takes time. Also finally going dor a private EEG, otherwise the 1st appointment is end April. I'm trying to be positive as my independence is disappearing. Any words or advise from your side would be dearly appreciated.

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Hi. Trust you are well now. I am sorry to hear about the misfortune. However, I have been where you are now with my son whose had seizures since 12 years old (19 now). Been a long journey, last year was the worst. I really want to encourage you to keep on going, don't loose hope. There is a light. Perhaps contact Dr Butler for a telephonic consultation, if he can help you you should then go to Cape Town. He is a pro bono doctor. It will go faster that way than with the gov hospitals. Gov hospitals have the ability to test ones patience. My son even at one stage said he feels useless to mankind but I assure you that is not the case. Meds do make you depressed, if it gets too much maybe ask your Dr on the next visit what you can take or he can refer you to a phsycologist for help. I know how you feel. Maybe get people in your area for moral support, create a group on WhatsApp, has done the world's difference to my son. He is more positive and even started working today. Keep it up, you can do it.

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Hi ColetS,

Thank you very much for your message. Your kind words has helped a lot. I understand now how your son must have felt, cause I'm there at the moment. I had an EEG done yestersday which now suggests that I don't have epilepsy, but I'm still ecperiencing the seizures. The extra meds rhe doc put me on helps to spread the seizures further apart, but I'm lost at the moment, because I've lost my job, due to the fact that in not allowed to drive anymore. My mom came from another province to take care of me and then take me home as I have to be out of my house by mo.th end. So I'm really trying to be possive and we will consider the Cape Town option. Thank you so much for taking the time to reply, I honestly appreciate it.

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I am sorry about your job and your house. There is an app (Epilepsy Toolkit) you can download where you keep record of your seizures and feelings which will be helpful to any neurologist. Dr Butler's number is 021 797 2099.

You might also want to try phsycologist, apparently he has an awesome machine that can pinpoint the problem causing seizures. Johan Fourie, his number is 084 750 9528. Appointment and test costs R600. My son has appointment for 3 March.

Best of luck to you, you are in my prayers and trust that you will find the cause of the seizures.

Keep me posted. Kind regards

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Hi ColetS,

Thank you again for taking your time to reply. I have downloaded the toolkit and will definitely use it and I will phone Dr. Butler in Cape Town.

My mom is here driving me around and roday is another hospital day, time for blood tests to see how things are going. Lucky the seizures has become less since they added the second tablet, but like they say everywhere, it's trial and error until they get it under control.

I wish you all the best with your sons appointment and you are also in my prayers, every morning and every night.

I've started feeling a bit more positive after chatting to you, so I went to CNA yesterday to buy books and CD's on Thai Chi and Meditation, maybe that will keep me focused when I move back to my mom.

We might also make an appointment with the other doc and take a trip to Cape Town.

Willl let you know if that happens then maybe we can go for coffee.

I hope you and your son have a wonderful day.

Xxx

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Thanks. Be blessed and keep it up. If your mom needs support in coping, believe me she will, she can always contact me if she needs a chat. My nr is 0823397372

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Dr Riaan van Coller at Wilgers hospital in Pretoria has helped me since 2012 while pregnant . Had 2 kids healthy 6 & 2. Have been seizure free for 2 years. Try him also.

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I'm willing to try anything at this point ,went to the state docs yesterday and they pushed me up to CR 600, although I still suspect they will push it even higher again as the drug was very low in my system. But I have my referral letter for the hospital in my mom's proovince and luckily they have MRI and EEG and Ihope those docs will be able to help.

I'm just going to go in with an open and my prayers and hope they get me back to my bormal self some say soon.

Thanks for the feedback. You guys are amazing.

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I'm sorry to hear of this situation. Remain positive, don't give up, fight for your freedom. Don't let this condition take control of you. Don't feel ashamed or embarrassed - consider yourself unique 1% of the Worlds population have epilepsy - the percentage is slightly higher in SA. People are more accepting today and more informed than they used to be years gone by.

Analyse what may have been contributed to you having seizures. You are now in a working environment, which places different stresses on your life so you need to adjust your lifestyle slightly. The sudden changes in your lifestyle from one of not working to that of being fully employed is a change in your lifestyle alone. Take a look at what may have been contributing factors; Late nights, alcohol, stress, dehydration, food, etc. Water is life and many people do not drink enough in a day. As a person with epilepsy, you need to remain suitably hydrated. It can make the difference between being susceptible or not. Certain foods increase metabolism or they may be stimulants - coffee, chocolate, sugar, and the list goes on - loads of research.

I am a patient of Dr Butler and have been for as long as he has been a specialist - I also know him. He is one of the top Epileptologists and Neurologists known abroad as well.

Don't think that driving is out of the question - this may be a temporary phase in your life. I am fortunate to have a well controlled epilepsy and I drive. Its about knowing yourself and how your conditions, identifying triggers, etc.

These are a few thoughts I have put out there. I wish you all the very best for the future.

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Hi Tdevilliers,

Sorry for late reply, but thank you very much for your message, it really meant a lot to me and came at the right time.

I'm pushing forward and staying positive. I'm being transferred over to a hospital that fortunately has all the equipment (CAT, MRI, EEG) and even though it's a state hospital I have full confidence in our doctors.

Every morning I stand up and just remember all the amazing things I still have in my life to be grateful for.

This is just another one of those challenges that I we need to stand up and savour all the good moments in our lives.

Thank you again for your support and kind word.

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Hi, hope you're ok. Just keep going, a journey of wonder and several other feelings lay ahead.

It's an unfamiliar but unique phase of your life you'll be experiencing!

After two brain surgeries my siezures are not under control but I live a full life even though there are days that I'm simply tired of everything.

Unemployed and frustrated with epilepsy hampering my self-confidence, I'm positive the future holds good things for myself, twins in gr.7 and my wife.

It's nothing to be ashamed or afraid of, simply a big speedbump.

Get to know yourself and open up to people around you, the condition is not contagious and there's nothing wrong with you!

Manage your stress and focus on tomorrow and beyond.

All the best, I hope you can find some inspiration in my message.

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Hi Ettienne,

There's definitely a lot of motivation in your message. If you can manage all of that and still make the best of your life with a wonderful family, then who is to say that I can't.

I actually woke up this morning feeling very positive even after a seizure at 1am this morning.

I'm a fighter, just like you.

Thank you for your kind words and I also wish you all of the best with your speed bumps, the ones you have conquered and the ones still to come.

I'm facing mine now head on, it's one hell of a learning curve, but I won't let it get to me.

All of the best and thanks again for your kind words.

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