Epilepsy

[72638YY]

If you have epilepsy..

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

Anyone?

I was 21 and having nocturnal tonic clonic seizures. I knew something was happening as it woke me up but I’d lose consciousness during the seizure.

It was only when I was with my boyfriend and had a seizure with him that I went to the drs. I also have Jacksonian March seizures (partial focal) and had the occasional brief absence.

I had an MRI, eeg and sleep induced eeg. It was the latter that showed the epilepsy.

At 48 I had a non epileptic seizure similar to a tonic clonic but without losing consciousness courtesy of peri menopause. That was during the day. I had an MRI, eeg, they also tested the nerves in my legs.

@Eze thank you!

Currently in the process of getting my daughter tested for epilepsy and awaiting MRI, EEG.

My son now almost 4 started with infantile spasms at around 6 months old. Hed had MRIs previously due to brain surgeries but he got diagnosed with an EEG. He no longer has the spasms but does have seizures.

@craigth162 thank you.

I’ve had a few people mention epilepsy can’t always be picked up on an EEG but was your sons pretty clear that it was?

Yes they knew immediately from his.

My DD is recently diagnosed at the age of 13.
3 tonic clonics and several partial seizures in the last 12 months.
Eeg showed abnormal activity (very common) but alongside her seizure history they diagnosed epilepsy.
I’m finding it very hard. She had a partial this morning. Her meds don’t really seem to be working right now.😟

@craigth162 thanks!

@Smartiepants79 so sorry to hear about your daughter 😢. I hope they are able to switch up meds and try something else to help 🤞🏻. Thanks for the info.

My little one had tonic clonic seizures at 8 months old and was diagnosed with epilepsy after the 2nd episode. Afterwards we also began to notice absence seizures which we probably missed before we knew to watch for them.

She had an EEG and two MRIs (because of her age a second one was needed once she was over 2 yrs old and that part of her brain was fully formed). Nothing abnormal was found on any of her tests.

Medication controlled her seizures with only occasional absences when she had a growth spurt and needed to adjust her dosage. Little ones can sometimes outgrow it so her doctors have said if she remains seizure free for two years we will try to reduce the medication.

Tbf ben was always expected to have epilepsy as he has hydrocephalus and a shunt fitted in his brain. Previously he had 2 brain bleeds that we know of. One before birth and one after a surgery

My daughter was diagnosed aged 5 which just an EEG. She has nocturnal seizures - only 1 tonic clonic we are aware of atm. The EEG shows generalised epileptic spikes across her brain. We might have to do the sleep deprived one to find out more.

We are undergoing diagnosis with my 2 yr old. She has had tonic clonic seizures while sleeping and one in the day. EEG came back normal but from a video I took of the seizure the doctors said it looks like epilepsy. She will have an MRI but doctors want to start medication straight away.

My son was diagnosed with just a sleep deprived EEG. We are awaiting an MRI just to rule out anything causing it but neurologist was able to diagnose based on how his 3 seizures have presented and the abnormal EEG. No meds as the type he has mean he might not have one for another year or so so she said we will keep him off meds until he has another one

I had my first seizure 2 years ago and have had 6 since . All tonic clonic , have not managed to get to a year so am unable to drive still . Struggling to get the right medication because of the horrible side effects they can cause . I'm 60 this year so it's a late onset diagnosis . I bloody hate it !

@BakerJ 8 months is so young 🥺, really hope your daughter is able to grow out of them.

@craigth162 poor thing!

@Frankgodno I feel like I’ve read into all the different types of seizures but not nocturnal, I’m away to look into that thanks!

@Thumberline thats great the doctors have put her on medication even after the normal EEG, hope you get the MRI soon.

@teenboymom I hope you get the MRI soon. This is what worries me. My daughters first possible seizure was 10 months ago (never witnessed so not sure if faint or seizure), and then a confirmed seizure 3 weeks ago, I’m worried they won’t medicate and will just leave her to have another one. It was the scariest thing I’ve ever witnessed in life so I’m constantly worrying about another one.

@supafish sorry to hear that ☹️, really hope things get better for you soon

Yeah well initially she said to us that she would medicate after two witnesses seizures but his first one was aged 5 then he had an episode of bedwetting and confusion one night and the following night he had a proper tonic clonic ( scariest thing to watch) so we know he must have had one the night before but she wouldn't class it as a seizure because it wasn't witnessed. So then she said she would medicate if one more or an abnormal eeg. He hasn't had another seizure but she could diagnose the type of epilepsy from the eeg (sELECTS) and knows that these are often infrequent and tend to come in twos then a gap of a year or two so she was happy to hold off based on this

I was mid 30s (62 now) when i developed simple partial seizure although didnt realise what it was initially until about a year in when it affected my consciousness also and id wake up on the floor…neuro specialist diagnosed complex partial seizure on presentation only as nothing was picked up on tests which isnt that unusual apparently, been on long-acting Tegretol since, take about 3 a week and been fine since thankfully

I was 15/16, I was found asleep on the bathroom floor in the early hours a few times and was dazed/confused on waking. I had an EEG which showed nothing than a sleep induced EEG which led to a diagnosis of JME. My seizures were tonic clonic and always happened within a few minutes of waking up. I was seizure free on the second drug they tried for over 10 years. At around 26/27, with my consultants approval, I came off my meds. I’ve continued to be seizure free for another 5 years now.

@teenboymom thats really interesting, thanks for the info

@Whylurkwhenicanjoinin glad to hear you’ve been fine since medication started 😄

@CherryBlossomNo1 that’s great news you’ve been seizure free while off medication!

I was late 20s, had four grand mal seizures, all when awake, over maybe ten years. Nothing on EEG or MRI, ECG was also done to rule out cardiac trigger. I was prescribed medication but never started it and now haven’t had a seizure for nearly 20 years. The last one I had I was referred back to neurology and the doctor said well the brain damage must be healing, it had been a long enough gap they would have stopped medication anyway and he saw no point in starting it.

I didn’t need to drive so was ok to take the risk.

@72638YY they will offer medication if necessary don’t worry. We were offered it straight away once results were discussed but have held off for now to see how my DD goes.

agree it is awful to witness, hope you're ok!

I was 16 when I had my first seizure. I was at school and just collapsed before having a tonic clonic seizure. The hospital said it was most likely hormonal so weren’t too concerned, but when I had another seizure 5 months later that’s when I started having diagnostic tests like an EEG and and an MRI. My EEG picked up abnormal brain waves which led to my diagnosis and that is when I was started on medication.

Diagnosed at 13. What they called Grand Mal seizures then (tonic clinic). Never really got to grips with why they happen. I tend to get an aura which feels like Deja vous.

I've been medicated for decades and have been seizure free for 7 years now including during pregnancy, birth and sleep deprivation.

DS had a tonic clonic seizure at 13, followed by several over the next 48 hours. Witnessed by two consultants as he was in A&E at the time. MRI and EEG. Started meds. Has a tonic clonic seizure roughly every 6 months and had recently started having nocturnal tonic clonic seizures. Always horrible side effects with meds. The meds he is on now have made him angry and irritable, they also makes him smell quite sulphurous at times - epilepsy sucks.

@newyeardelurker great to hear you haven’t had a seizure in over 20 years 👍🏼

@Frankgodno I’m ok thank you, just the fear of it happening again. Once I have answers I’m sure I’ll feel much better.

@HeadInTheSand0324 my daughter has also been told it could be hormonal and I felt like they were trying to fob me off. Glad I’ve put my foot down and pushing for more tests.

@kirinm my daughter said she had Deja vu too. As soon as she started feeling abit hot and dizzy she knew it was going to happen. Glad you’ve been seizure free for over 7 years 👍🏼👍🏼

@PilkosPumpPants i have heard about the nasty side effects of some medications so I’m sorry to hear about your son having to go through that ☹️