Epilepsy

[72638YY]

If you have epilepsy..

What age were you diagnosed?
What symptoms did you have/types of seizures?
What tests were carried out?

Not all medications have side effects although there may be some whilst they try to get the dosage right.

Controlled epilepsy isn't life changing - uncontrolled is (I've been the latter). I'm very much pro mediation but it can take time to find the right medication and dose.

@kirinm thank you, that makes me feel better

Just joining this thread as my DS11 is experiencing symptoms and currently being investigated for epilepsy.
So far we’ve had a slightly inconclusive EEG done, and we are booked in for the sleep monitoring EEG next month.

His seizures have always been fairly mild instances of absence, pupils independently and repeatedly dilating and returning to normal (eyes going out of sync to each other), a feeling of Deja vu, and a deep sense of fear and dread before an episode starts.
Today though I have just been informed by the school that he’s had a seizure and lost consciousness and control of his bladder as it happened, which feels like a massive ramp up in severity. (Hence why I was looking for threads on here about epilepsy).

Hes also put on a LOT of weight in the last 18months since symptoms first began to be noticed… I don’t know if that related or not. There’s been no noticeable changes in diet, and his brother (who eats the same meals with the same portion size) has remained rake thin. Has anyone else had any weight -related issues running alongside seizures? It’s hard to know what might be linked, and what might just be puberty affecting him differently…

What age is your daughter ? My 14 year old daughter has just started having seizure type episodes . Her face goes vacant and her whole
Body shakes . They last minutes . But after she goes pale and gets bad headaches . The epilepsy clinic has been fairly slow . She's had a normal eeg but is now going to be having a sleep deprived one. My friend has a son the same age and he has seizures. Bad ones , he looses consciousness and gets sick . His eeg was also normal . The sleep deprived one showed his epilepsy . I think my daughters ones have something to do with artificial light as they don't happen at home. It's only a school or a cinema or theatre . But also there seems to be quite a few teens at her school having the same issues. I wonder if it's Covid vaccine related ? I really don't know !!!!

My DD has had no side effects from her meds.
@Lovethesea1 why on earth would it be vaccine related?? Unsubstantiated conspiracy theories are not very helpful.

I'm not blaming it . It's just not researched . They don't know the long term effect on these things . At my child's school there are a high number of teens having seizures . There's got to be some kind of link to this happening .

@BassAce was there a reason for the EEG being slightly inconclusive? I hope you get more answers with the sleep monitored EEG. I’ve read (a lot!) about seizures over the months but i haven’t read anything about weight gain being connected. I suppose it affects everyone differently.

@Lovethesea1 my daughter is 9. That’s really scary. Hope you get the sleep deprived EEG soon. I’ve noticed both of my daughters episodes have happened around 9am so i wonder if hers could be sleep/tired related, even thought she’s usually been awake for 2-3 hours before it’s happened. My daughter hasn’t got the covid vaccine so definitely not related in our case.

@72638YY the whole thing is very scary . And life is very different now while we don't know what's going on. I have to stay local to school in case she has one and I have to pick her . I just want her back to her normal self . One thing I've noticed is my daughter sleeps more and when she's tired she's more likely to have a seizure .

My 8 year old has just been diagnosed. He had an absence seizure in November and was seen in A and E. No tests were offered and we were advised he'd need to have another seizure before investigations would start. He had a second absence seizure with facial twitching and loss of bladder control in February and A &E immediately referred for an EEG and MRI. It was all very quick thankfully. The MRI was normal but the EEG showed active general epilepsy with left focal.
The consultant discussed pros and cons of medication and said at this stage we could watch and wait rather than deal with side effects of meds.
I was made aware of SUDEP and status seizures and I must admit I've been off the scale worried. I'm finding it hard and worrying what will come next.

@Lovethesea1 yes I feel like even after one seizure your life changes completely and it’s walking on eggshells from then on. Hope your daughter has been ok recently.

@KellyMarieTunstall2 sorry to hear about your son. I understand there are some children who have 1 seizure and never have another, but I don’t understand why they won’t test after the first. It’s ok for the medical professionals who see seizures on a daily/weekly basis but for the parents it’s the worst thing. I’m glad he was referred quickly after the second seizure. I don’t blame you for finding it hard. I’m still waiting for an appointment for my daughter’s EEG, I just wish it would hurry up.

Quite a high percentage of people have 1 seizure in their life time. Also it’s quite common for eeg to show abnormal activity: It often requires the history or the seizure activity and the eeg to diagnose.
My DD was referred for testing after only one seizure.
Her meds have been increased this week.
It’s been 12 months since the first episode, the most traumatic experience I’ve gone through. Her life is altered forever. She has been incredible.
Fingers crossed it stabilises.

My daughter has Sunflower Syndrome. She was first diagnosed at 4 with General with Eyelid myclonia etc, she would have hundreds of absent seizures a day caused by the light.

It took about a year to go through all the levels of hospital referrals and specialist scans. It's taken years to find the right diagnosis and medication regime. We are on the right path now though and she is pretty much well controlled apparently.

It's taken years to come to terms with the fact that my daughter will have this for life, that she will have to take a lot of very strong medication twice a day for life. I just have to look forward and think of all the good things because otherwise I just sink into a depression. There are good things, we have it controlled and understand it, we don't have severe seizures like some people have everyday, she enjoys sports, and activities

I am so concerned about the future, she is desperate to be a mother and my heart sinks at the thought of her coming off her medication (the most effective medication is Valproate), the high risk of SUDEP in pregnancy and post-partem. I can only hope that in the very near future a new medication is found that is a good as valproate but I am not holding my breath.

I’m looking for some advise or support, my son just turned 9 and has myoclonic epilepsy just diagnosed 8 weeks ago - we are on Keppra but seizures are getting worse!! He is having so many everyday I just don’t know what to do

Does DC have an epilepsy nurse? If I were you, I’d contact the epilepsy nurse and ask their advice. If you don’t have access to an epilepsy nurse, I’d try the secretary to the neurology department, to pass a message to a neurologist.

@72638YYjust stumbled across this thread again. Did your DD ever get a diagnosis?

my ds wasn’t on meds at the time I responded to this but went on to have another seizure and went on keppra. He had a hard couple of months adjusting to meds with side effects but has been seizures free for over a year now.

he had two MRIs since and has focal cortisol dysplasia, which is basically an abnormality in brain neurons (I think!) which explains the cause of his epilepsy. We originally wete to be two years seizure free before trialing coming off meds but this has been extended to three years by consultant as he’s less likely to grow out of it.

we were linked with epilepsy nurse team who are amazing and luckily haven’t needed them much other then support starting keppra. We are so lucky he took to first drug and thankfully has been seizure free