Unsure if this is focal aware or not
Potential Trigger:death, seizures, mental health
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Hi, I'm 26f, new to this sub Reddit. I usually stay away from anything epilepsy related (think I have PTSD or anxiety around it) But I wanted to ask about focal aware seizures. I came across it last night and I don't know how, probably doom scrolling until people's comments on a post caught my eye. And it's got me worried a little. It got me thinking about the seizures I had later in life when I was a teen finishing secondary school. They ended up putting it down to Vasovagal Syncope. And that was that. Recently I had surgery (not related, endometriosis) and a nurse mentioned maybe I had fainting/seizures was because of low blood sugar, not diabetic but now under investigation,.could be non diabetic low blood sugar tho (I had an episode years ago in a beach cafe, when I woke up my blood sugars were dangerously low and had paste shoved in my mouth to quickly bring it up)
Btw I hate talking about this stuff as you can tell, I hate to even think about it cause it makes me anxious, nervous and worried. So please be kind
But first, backstory as this is complicated as to why I am worried.....
When I was little I was diagnosed with epilepsy. I was on epilim from 2002 (b.1999) and diazepam when required. On my NHS Wales app I can see the last prescription was in 2006. (But my mum said I came off it alot later- which doesn't make sense cause my records don't show that, she may be getting confused with my sister's experience) Anyways, apparently my seizures were mostly absence seizures, and the most recorded I had in a day was roughly 30 seizures that they could tell, could be potentially more. I did have what you would call tonic clinic, full jerk type seizures.
Mum said previously that they were worried to take me off it as it could go horribly wrong... Thing is the reason they were so worried, was because I had a sister. Mum and dad's first child. Call her Z. Z had cerebral palsy and severe epilepsy. She sadly passed when she was 16, she had a big seizure and her organs started to shut down one by one.
As you can imagine this affected my whole immediate and wider family and friends who knew her.
Because of my seizures and I was in a mainstream primary school (kindergarten) they moved me to a different school and I had two LSA's assigned to me to watch over me and give me medication when I needed it. I also have learning disabilities too, and I had help for that. I was also diagnosed with Global Developmental Delay (GDD) My guess is probably from the seizures or/and genetic learning disabilities from my dad.
Anyways once I turned 7 I got put into a normal primary school again, back to the same one I was in before. I couldn't stay in the special school as the max age they allowed was 7 apparently.
During this time I developed really really bad migraines, bed bound type of bad when an attack happened. Before I started secondary school (aged 10) It.was so bad I would vomit one time, and my aunt and mum drove me to a&e (ER) I was kept in for a week, and on a constant drip of fluids. They don't know what it was. They debated meningitis, dehydration etc. They even thought about doing a spinal tap but in the end they didn't as I wasn't coping with the late night visits from the nurse to do my drip and change the needles to the other hand. They put me on migraleve I think. It went away.
Fast forward to secondary school I actually never knew I was epileptic till I was in year 7 or 8. (Age 11/12) I learnt about it and ever since then I was worried they would come back. Funny enough as I'm writing this I remember now and again when I'd walk the corridors, it felt like deja vu. Fast forward to the end of the school year, this is where it gets complicated....
I started to have seizures again. I must of been 16. I had an episode when I was on holiday in England I think, in a caravan park with family. Thing is I remember it so vividly. I was standing by the door of the caravan, which is where the mirror was, my mum was helping me curl my hair. All of a sudden I felt very funny. Felt lightheaded, very anxious all of a sudden, and my vision started to go weird, like TV static and I could feel myself going. Then I blacked out. Fell out of the caravan hit my head on the bikes and table. Later woke up very pale, was frothing at the mouth during seizure so my whole mouth and chin was wet. And as you can expect I got upset and scared cause I didn't know wtf had happened. I remember before and after but not during the actual jerky seizure.
They did their tests after I was rushed, didn't know what it was exactly.
Long story short, they did their investigations including a sleep deprived EEG. They think I fainted first and then had a seizure. They ended up putting it down to Vasovagal Syncope. Told me to work out the trigger as there always was one. Figured out it was food, I needed to eat something quickly. Also not getting enough sleep made me feel worse. But it was mainly quickly eating something, and then I would put my legs up in the air for the blood to pool back down.
After that episode I had several more. I would have one at least every other month. From 2015-2018/19. After a seizure I would be upset, then I think the adrenaline kicked in and I would be fine, laughing even. And then I would get super duper tired, unlike anything I've ever felt. I would sleep for days even weeks, getting up to eat and toilet. That's it pretty much. A seizure would knock me out for ages, and then I'd snap out of it by getting triggered via frustration, I'd cry and then once I got over that I'd be somewhat back to normal.
Here's all of my pre seizure warnings:
*Very strong sense of impending doom (feels like I'm gonna die)
* TV static vision (spotty vision)
*Sunset colours vision (red&orange)
*Weird light tingly all over body just before
*Panic
*Feel like I need the toilet
*Dizzy/lightheaded
*Been told I've made a grunting noise
*Feel sick
(I think there's more but that's all I can think of atm)
I'll see if I can find the post I saw as people's experiences was very similar to how I felt which was really weird and concerning.
I think that's everything I need to mention. I think I just would like reassurance I guess.