Epilepsy

[Chaddy96]

Hi my child has suffered with generalised epilepsy since he was 7 he is now 19, most medication and cocktails did not work so he had fitted a vns stimulator which for a few years has worked very well. Now he's 19 though he likes to go out with his friends as teenagers do and have a few drinks but he suffers really bad with seizures the next day, I started reading about electrolytes and I now give him a diarolyte when he wakes and for a few month now he's been seizure free from going out the night before. I wanted to tell someone about this it's helping my boy I wondered you you could look into this more if nobody has already and maybe it could help other epilepsy sufferers

Kind regards

Chaddy96

[Lorr2504]

Hi there.....

Your post is very interesting and it would be good to know if the electrolytes from the dioralyte help. My son is now 29 and a pt, and has been epileptic since the age of 11, when he had a knock to his head. He then didn't have any until he was 16 and since then they have been fairly regular. He is on lamotrogine now, and very rarely drinks now, but in the past has got very drunk and has a morning seizure. However drinking the same amount in the same scenario and has not had one the next day. Sometimes they've been caused by lack of sleep and stress as well.

What is the vns simulator and how does it work? What medication is he on now? My son has tried several but lamotrogine seems to control it the best.

[Chaddy96 in reply to Lorr2504]

Hi

Vns is a vagal nerve stimulater which passes pulses through the vagal nerve and into the brain. They set it at intervals and strength and if he feels one coming on he swipes himself with a magnet to pulse stronger, he had it fitted at kings college London. My lad is not on medication, I decided to take it off him as they were making him worse but apparently vns works well with the medication aswell. My son was the same with lack of sleep or stress, I know if I've been out myself having a few drinks I'm dehydrated and don't function 100% so with my lad I think he's a lot worse. When I was reading about electrolytes apparently if there is a imbalance or dehydrated it can cause of a lot of problems all around the body and brain so that's why I've tried diarolyte, I hope this helps.

Kind regards

Chaddy96

[Lorr2504 in reply to Chaddy96]

Hi... I'm glad this form of treatment helps your son. It wouldn't be any good for my son as his seizures are so random and he has no idea they are coming on. But I will explore electrolytes. Thank you.

[Chaddy96 in reply to Lorr2504]

Hi lorr2504,

My son also does not know when the seizures come on as they too are random but the vns is used with a magnet so if you see your son going into a seizure you swipe the magnet over him and it sends more pulses to the brain trying to stop it coming on. He was having granmals all the time but the vns is set to send pulses to his brain every minute. He had it fitted well before he was going out drinking and did help with the granmals it's only now hel have a granmal when he's been out apart from him going out the vns is controlling them.

Kind regards

Chaddy96

[zippytiptoes]

We have a 7 year old daughter who has had many many absence seizures since the age of 2. Her behaviour is horrendous on meds so we have opted out of medication for 8 months. It never seems to stop her seizures and I have often wondered about VNS. How did this come about for your son? Has he been ok with it or have there been any problems? I'd be really grateful for any information. Thank you. It sounds like you're a great parent, trying to fathom things out for your son.

[Chaddy96]

Hi zippytiptoes

My son was really poorly on medication it did not control his seizures and made him have learning difficulties. When I tuck him off the medication, against the advice of doctors, he was a like a new person he could actually hold down conversations and he said himself he felt a lot better even tho he was still having absences and the odd seizure he was doing a lot better. The doctors said about a ketogenic diet but again he had already lost a lot of his child hood putting him on a restricted diet of fat I didn't want to go down that route in case it didn't work that's when they told me about vns. He now goes to see his epilepsy nurse every 6 month to alter the settings if need be. He's happy so are we as parents we know now what can bring on seizures he does too but he's young he wants to be like any other young man going out with his friends, so until he grows up a little bit and stops his drinking he his still going to suffer the next day. He knows he has to get plenty of sleep have diarolyte and try to look after himself better, I hope this helps you with your daughter.

Kind regards

Chaddy96

[zippytiptoes in reply to Chaddy96]

Thanks so much. We have a multi disciplinary team meeting this month and our neurologist is looking to refer us to Great Ormand Street at our request. I am going to see if we can explore this possibility too. Thank you so much for taking the time to reply. I really appreciate it good luck to your son

[Roadrunnergreg]

I've found that avoiding fruit, eating eggs, fats, magnesium, Bacopa, sleep, and water helps out a lot. And a lack of sleep, and eating fruits especially citrus fruits aggravates things and become prone to seizures! A sign of being close to a seizure is a white flashing light in the eye, or argumentative when you otherwise wouldn't be. usually brought on by the lack of sleep n water. Hope that helps...