To want to hear some positive stories about epilepsy

I have it, started in my mid 20's. Am medicated and haven't had a fit in about 15yrs. I'm a senior nurse, have had 3 children without any complications and it makes absolutely no difference to my life apart from me just needing to be careful that I'm getting enough rest and sleep - I also hate strobe lighting but that might be my age!

There are nutrients that ca make a big difference. We saw a reduction of seizures once we got blood vitamin D levels to 150nmol/L; lots of research on the positive effects of vit D on epilepsy. Selenium and carnitine are other important protective nutrients. We also saw a big reduction in seizures from adding a low dose of soluble fibre (Sunfiber/PHGG). I've seen research suggesting that probiotics are also very beneficial, and lymphatic stimulation eg dry brushing.

That doesn't sound right at all, did she have a fever?

To diagnose clinically a child needs to have had 2 seizures in an absence of a fever before its epilepsy. Otherwise it's febrile seizures or given she has several at 1 episode and assuming they were prolonged it's febrile seizures plus which was my son's diagnosis.

He had his first at 7 months then ever fever he had a seizure and they weren't seconds they were 10 minutes to the last one he had was an hour and we spent that hour in resua unsure he'd make.it.

I'm in 2onds about your situation because if my son had been taken seriously and medicated after they realised he was having prolonged seizures every 4-6 weeks he'd have been spared the worst of the seizures, the massive amounts of anti seizure meds it took to bring him out of his status epilepticus and the side effects of all that. Then he was medicated, once he was 2 yrs seizure free and had his tonsils out and the frequent fevers stopped we weaned off meds when he was 6 and he's 8 now and so far no seizures since.

I'd be demanding an EEG though ,your doctor sounds like she's not sure what she's doing

The stress is awful. I was in survival mode for years dealing with doctors who seemed to thing the problem was my anxiety not the fact his seizures were so severe he kept ending up in resua. It was as if in a and e the urgency was clear but by the time it filtered to neurology the information was so diluted he was dismissed. Then he got a new neurologist after his last seizure and it all changed.

Good luck with it all, it does sound like febrile seiUres in your car but when it's multiple prolonged frequent seizures our neurologist said it OS epilepsy at that point, it's frequent epileptic seizures and status epilepticus. It's not this benign thing like kids whose eyes roll back for 30 seconds and then they recover immediately

My sister had epilepsy caused my a brain haemorrhage when she was a baby. She used to have countless seizures a day resulting In most of her childhood spent in hospital. Eventually they were controlled with medication. When she hit puberty, the seizures stopped. I think she was about 11. She’s 46 now and not had a seizure since.

My daughter’s first was chickenpox, a few days before the spots came out. I know someone else whose else had seizures without a fever with chickenpox too.
My daughter’s first she became very vacant, unfocused and a high pitched soft- singing. I rang 111 and whilst on the phone she had a grand mal and didn’t come round fully until in hospital. She had two more in hospital, she was in there for a reaction to chickenpox-cellulitis, high temp. She had absence seizures on and off and some partial ones too, but no pattern. One eeg was clear and the next showed post seizure activity but nothing clear.

Not children experience but my DM has it. She hasn’t had a grand mal seizure in over 30 years and is in a good place now medication wise.

Epilim was v bad for my DM (on it far too long) and was harmful to my DSis in utero. Not trying to frighten you, but to be aware of when your DD grows up that sodium valproate can be v harmful in pregnancy. But hopefully your DD will indeed have outgrown it.

I was diagnosed at 18. I’m stable and medicated in my 50s and able to drive.

Sorry to hear that op. Dd was diagnosed with epilepsy at 4, I didn’t know much about it at the time and was convinced it was a brain tumour. It was awful. Her face would twitch and she couldn’t breathe and then the side of her face would drop afterwards. I was convinced that one day it would stay like that.
Dds trigger was sleep deprivation. She had a sleep deprivation EEG and that induced a seizure. She was diagnosed with benign Rolandic epilepsy.
we would find that she would have clusters of seizures towards the end of term when she was exhausted. The specialist said we could choose to medicate if we wanted to, we left it for a while but then the number of seizures increased so we decided to medicate. After not having a seizure for 2 years from the age of 10ish we weaned her off medication and she’s never had a seizure since. Fingers crossed it’s something that your dd grows out of. I remember dd having 2 in one night and I just sat there and sobbed, it’s so awful to see.

My dd had seizures 3/4 times a week. Sometimes multiple daily between the age of 1 and 7. She was on medication daily and had medication to stop the seizures.
she’s has been fit free now since the age of 8, off all medication since the age of 10 and is in her 20s driving, and doing everything every other adult does.
its a horrible scary time I really feel for you

Re Reddit I’d try to stick to UK threads. When I’ve read threads where posters are American it really is a different life experience when it comes to medication/access to health - they can’t necessarily afford or get covered for certain medications etc.

Former hospital doctor here. Have in the past had doctor colleagues who have epilepsy , work made reasonable adjustments such as not doing nightshifts as the sleep deprivation can be a trigger. Not sure if this is what you were asking for in your thread but these were successful, thriving professionals. Wishing you all the best OP

My brother and I both had/have it, I was weaned off medication by age 9, his is controlled by medication and he lives a normal life, can drive etc.

I know it will all seem overwealming as your dd has recentley been diagnoised. You will have so many questions and worries.

My daughter was diagnoised with nocturnal epilepsy when she was 9, when medicated she had a 1 seizure, she was on her meds for 4 years and has now been seizure free for 5 years and med free. They put it down to hormone changes.

Please also look after yourself x

My sister was diagnosed with epilepsy at about 20. She did have a rough ride for a good few years. Eventually they sent her to London, took her all off her meds, and monitored her for a week. They were planning on surgery, but they changed her medication. Touch wood she hasn't had a fit in about 15 years. She's driving again. She use to have a lot of grand mal seizures and a loads of petite mals.

Also to say I read a lot on line saying it’s likely she will have learning difficulties with epilepsy but she is doing fine- her teacher has no concerns.

My dd had seizures white a bit from 2-4 then sporadically until 15 (went through puberty late) nothing since. Dsd has severe epilepsy however since 6 months old. It’s a wide spectrum and many causes too

My dd was also diagnosed at 2 years old. She had a series of seizures over several months and was diagnosed off the back of a video of a seizure.
She was having tonic clonic seizures.
She hasn’t had a seizure in two years and is on no medication at nearly five years old.
I really hope you have a similar outcome.

FIL is well into his 80s with photosensitive epilepsy and is in very rude health. Im not sure if he has seizures much now as he's quite quiet but he is off on planes with his GF and driving regularly very happily. I know he had a lot of seizures when he had small DC and a demanding job from stress but overall he's had an amazing life, travelled all over the world. It did sadly prevent him from achieving his dream career but he was a successful businessman and has no complaints!