Has anyone suffered this or had a relative who.did. Does this mean a strict lifestyle, like regular sleep patterns, low stress, not going out alone when possible. Can it just happen a few times and then never return? It is one of my daughters 20 years old. Yes, obviously the doctor has given much advice etc, but I’d also.be interested to hear from people who have it, or close relatives of yours or friends who have had it or did have it. I’m really freaked out about it…I want to try and accompany her everywhere, but also know she has to have space too. Thanks
Sorry to hear. From what I understand it’s not an uncommon condition, and quite manageable for the most part. I would be freaked out if someone close to me got diagnosed, too, but I’m sure you will figure out how to manage it in time.
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Aww sorry about that , it must have been so stressful. I think that there are many variations as has been said, it seems to be quite manageable with meds.
It’s probably a shock having to worry about the unpredictability but all you can really do for now is learn about it and interact/ read up from others and the Docs.
Probably a good idea to try and meet up with other people in Taiwan to see how they cope .
I have had a couple of friends with epilepsy and had only very rare attacks triggered by something. Thinking of you and don’t panic old man 
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The Ketogenic Diet has been used to treat epilepsy for…probably a hundred years. A friend of a friend reported that seizures essentially stopped from using it.
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Yes, my little brother suffered from epilepsy. It was caused by a brain tumor, which he had surgery to remove when he was 15. The surgery was high risk, but thankfully it was successful and now he’s epilepsy free.
What can I say… it’s traumatic, not just for the sufferer, but family as well as they’re always on edge. My mom would constantly watch him, but even so he had some nasty spills due to seizures. It’d help to know what causes your daughter’s epilepsy, the severity and her treatment plan. Beyond that, all I can say is you have my sympathy.
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Plenty of sleep with a strict ketogenic diet are essential to maintaining brain health. From time to time, ask your neurologist to perform an EEG and MRI of the brain to rule out abnormal action potentials or chance of tumors and aneurysms .
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Medical marijuana (or at least THC based medication) has shown promise too. Unfortunately it’s impossible while in Taiwan.
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I did everything wrong when she had her first attack , she was face down totally rigid with her head on a slightly opened draw. Her teeth clenched together the upper ones biting onto.the lower ones. There was blood (not much) coming out her mouth. The family was screaming and I presumed I needed to open the mouth in case she was biting her tongue or was choking on somerging (right if choking wrong if epilepsy, now I know this). Therefore I gently moved her into a recovery position making sure her neck was ok , but then did what you are now not meant to do, I have strong hands,so I opened her mouth and looked that she hadn’t swallowed her tongue or got something got stuck in. As I removed the hand the tips of my fingers got bitten down on and then her dog attacked me. I managed to speak calmly enough to the family while getting my hand bit and the dog going wild to just pull the dog off lock it in the room and call the ambulance.
@DrewC it was caused they believe by a previous head injury which damaged a lot of neurons. They said to reduce stress, and have more regular sleeping patterns, and remember to take the medication.
Thank you for all your kind advice everyone I’ll look into the Ketogenic diet and the other advice.Thankfully she is still able to play music and function pretty much normally after the initial brain injury (except some balance issues and the epilepsy).epilepsy first aid
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How old was she? I thought this kind of thing generally happened from childhood.
There’s not really a standard age for onset. I think it can affect people of any age.
20, she had a head injury at 18.
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AV malformation, Aneurysm, brain tumor, elevated intra cranial pressure can also trigger relapses. If the seziure activities recur regularly definitely get a neurologist to run some test particularly a brain MRI with contrast to look for possible causes and to rule out any serious problems. Wish her a speedy recovery.
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@crusher on the positive side , you can arrange MRI / CT scans and quickly , Taiwan is good in that way . Worth pushing to get all the tests you can get to get a really good idea of the cause . I hope it goes ok for you
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Thank you, we just got all those tests and waiting for the results.
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Good man . Just do what you can and let us know . If you get down , I will have to come and see you and give you a severe slapping … wait …I forgot how big you were . Everything will be ok … trust me .Seems like you have things under control
There is a medicine (can’t remember the name) that’s available for her condition, in the US you have to have a doctor’s prescription to get it. It’s to prevent seizures in anybody who’s suffered head injuries. The last time one of my friends went on this medicine (you have to take it the rest of your life), it was because she fell while crossing a street and managed to fall on her head.
https://msktc.org/tbi/factsheets/seizures-after-traumatic-brain-injury
Yeah I’m pretty strong , but I put my back out last week too, so now would be a good time to slap me or ask me out to.the parking lot. I’d have to bottle it for the next month at least.
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I’ll let you know next week what they put her on. Yeah, they said it can be caused by different reasons so there are different medications depending on the test results. Thanks
I might be repeating some things but I’ll tell you what I know about it from someone I’ve been close to in Taiwan and watched deal with this for years. It can be caused by brain injury, but the cause can be completely undetectable.
The doctor may start out with a very strong medication, and these can have side effects like paranoia. If that happens, the doctor might put her on different medication. The standard seems to be Tegritol or it’s generic versions. You can buy that in a pharmacy here, but if you get it through your neurologist it’s basically free. The doctor might combine it with other medications to help her sleep, or other anti-convulsives.
This person lives a basically normal life. He tries not to drink too excessively (though he shouldn’t at all) or go swimming alone. I don’t think a person needs a constant minder. I’ve actually known a few others who have had this. The only risk is falling, and also having one seizure increases the likelihood of having another. This guy has had a few seizures over the years, but he says if he stays on his medication regularly he’s basically ok. He was diagnosed first in the UK when he was a kid and took Tegritol for years until he had a seizure in Taiwan for the first time. That was scary as it was a bad one and his wife called 119. At the ER, they made him see a neurologist and he’s been going every since. He had something called ‘auroas’ after the last seizure, which is something like a mini-seizure, but got that under control with the right mix of pills.
The neurologists here will give you an MRI about once every 6 months, and they take your blood every six months to check your liver.
This guy is basically just lucky that he didn’t have a problem that caused more frequent seizures. I knew one guy in China who regularly had them and treated it with every medication including acupuncture.
I can get a recommendation from him because he likes his doctor, but from my experience with another health issue, it’s best to find the top doctor at the hospital and make regular appointments with them to get the best results. Like if you live near a certain hospital, find the head of neurology if he/she keeps office hours or a doctor that specializes in epilepsy. I put some research into it and found a doctor at my local hospital who is chief surgeon in his field at all of that hospital’s branches and he keeps office hours once a week at the branch near me. He knew what he was doing and put me back together properly. Most doctors are ok for common situations, but with brain stuff I would want the person who knows the most about that specific problem. They’ll know best what to look for when they look at an x-ray or blood test.
Some people have mentioned the keto diet. There’s nothing wrong with it and it’s probably healthier than the diets most of us eat normally, but it’s not proven to have an effect on epilepsy. This guy I know certainly doesn’t use it, unless fried chicken and pizza are part of the diet. But a better diet is good for the brain so it doesn’t hurt. Caffeine is bad also, and obviously alcohol, but the right anti-convulsive medications can lower the chances that a seizure will be triggered.
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Thanks for the advice. Actually last week I found out who is the head of neurology at the local hospital. She’s already had her scan, MRI, blood test etc. She is taking Sodium Valporate 1000mg per day since 3 days ago. She will see the chief neurologist on Tuesday. I will let you know how it goes. They are very fast in Taiwan with this, much faster than the UK to be honest. I will ask if she can drive etc. My daughter is sometimes forgetful because of the brain injury, so I write a list of things to ask before we go in. I was reading an interesting article on music and brain plasticity apparently although neurons cannot regenerate they can form new connections when doing things like playing music which she is still good at. I really wish it was me with the injury not her. Anyway thank you for your long and thoughtful reply.
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