Epilepsy or ‘low seizure threshold’ - confused

[Nervousgoat]

Currently recovering from 15 year old DS experiencing a large and terrifying seizure over half term. We were admitted to hospital for 3 days…tests confirmed DS had a low level viral infection but was otherwise well. He seems totally back to normal now. Headline message from doctors is that a lot seems inconsistent with epilepsy. They seem pretty unconcerned about it tbh - ‘anyone can have a seizure etc’ whereas I am absolutely beside myself with worry.

What’s also concerning is that DS had some kind of episode 2 years ago - I found him collapsed on the floor of his room. He came around quickly but was drowsy and out of it for some time afterwards - again ambulance was called and we went to hospital. They ran a load of extensive tests then (MRIs on his brain etc) and nothing concerning was found. Epilepsy consultant ultimately assessed this to be an ‘atypical faint’. That time DS also had some kind of cold/flu bug.

I’m still being told by doctors that even if DS has indeed had two fits, it still might not be epilepsy - particularly because they are two years apart (usually with epilepsy onset they are more frequent) and might just have a ‘low seizure threshold’ - ie tendency to having seizures if he’s unwell, a bit like febrile seizures in young kids (even though he didn’t have a high fever!) Doctors have suggested this is more common that one thinks, but I’ve never heard of this and can’t find much evidence to support this! Plus, he’s obviously going to get bugs again so what do we do then?!

i’m so so worried about him and what this all means. We are having EEG and seeing consultant next week but worried test will show as normal again and we’ll face more dismissiveness. If anyone could share experiences I’d appreciate it immensely. Thank you.

I've known people to have seizures without epilepsy, especially if they're ill in some way. But in your son's case it's difficult if his illness is so mild he doesn't notice it.

I started having focal aware seizures in my late 20s. I initially thought they were panic attacks. When I was finally diagnosed about a decade later I was adamant it couldn't be epilepsy as I associated it with a scary life threatening disorder.

The best thing you can do is stop panicking, if your son sees you panicking he will too. There's no point fretting and worrying until you know what's going on.

I hope he's ok, best of luck.

@WhoWants2Know - thank you. He did know he was unwell - had cold-type symptoms for a few days prior to the seizure but nothing major. On the day it happened he felt worse, but nothing major. I’ve heard of seizures being caused by serious illness like meningitis or encephalitis, but not just a cold. I think he had Covid right at the start of the pandemic (pre testing and vaccines) and wondering if there might be some kind of link - the rest of the family has had Covid twice and my son never ever tested positive, which could indicate some type of immunity from earlier infection perhaps.

@threecupsofteaminimum - thank you also. I am trying not to panic and keeping it very breezy around DS. Good thing is that he remembers absolutely nothing, but for us it was very very frightening. I honestly thought we were losing him, and can’t stop thinking about if this had happened when he wasn’t at home. His seizure was tonic clonic in nature but this is another thing doctors keep pointing out - because he didn’t bite his tongue or wet himself that is atypical of an epileptic fit, but still. We need some answers and I’m getting a lot of ‘no need to be hugely concerned/watch and wait’ attitude from docs, which makes me SO uneasy.

Other experience and advice very welcome…thank you! Xx

Anyone? I'd really love to hear from anyone whose child developed epilepsy in their teens, or anyone who has experienced non epileptic seizures that had no clear cause....thanks so much.

@Nervousgoat ive just found your thread and wondered if you had any more answers from the clinicians? I’ve got a similar-ish experience:
my ds had a tonic clinic seizure last year age 13. I had never witnessed anything like it and I thought he was dying in front of me. That may be over dramatic, but it’s how I felt. Had an EEG which came back clear.

9 months later he had another seizure, this time at school, but it was just as severe. The A&E doctor said they were unlikely to be linked and they were both ‘just one of those things’.
Now, having seen a paediatrician, he has to start epilepsy medication. He’s going to have another EEG and an MRI. I don’t know what to think and waiting for some web links & epilepsy info etc from the epilepsy nurse.

I was told you have to have 3 seizures before you get proper tests for epilepsy. I was diagnosed at 17 I had loads of scans. I really hope it isn't epilepsy

@xPissflapsx interesting. I wonder if guidance has changed now.

Most likely. It was 23 years ago :/

DD was diagnosed with epilepsy aged 15. She'd had one tonic clinic seizure aged 9 then not another till she was 15. There was then a three week gap before she started having them multiple times a day until the right meds were found. She also had multiple febrile convulsions as a baby which they now attribute to epilepsy as she was never unwell with the febriles (no temp before or after).

At that time (10 years ago) I was told that one seizure can be put down to illness, two or more and it's generally epilepsy. Her EEG was clear, and although her MRIs showed small lesions on her brain, the consultant thinks it is likely as a result of her autism as there is a proven link between the two.

It was one of the most frightening times of my life, and even now, despite her seizures being a lot less frequent, the fear instantly returns if I can't get a response from her when I can't see her. I wish your DS well and hope that the doctors get to the bottom of it soon

Hi there, I developed epilepsy at 15 (JME). My parents suspected it as I’d be found on the bathroom floor in the middle of the night a few times and I had been dazed/confused for a few hours on waking. Eventually they saw me have a seizure but diagnosis took some time. Nothing showed up on a normal EEG but they diagnosed me after a sleep deprivation EEG. I only ever had seizures within 10 mins or so of waking up. It took a few years but my seizures were well controlled with medicine and I was seizure free on medicine for 10 years before coming off meds 4 years ago and I remain seizure free. Happy to chat more if it would be at all useful!

I had seizures due to a combination of lack of sleep, caffeine and migraines. It was the panic about the migraine that caused the seizures. Stopped happening when migraines were more frequent and I started breathing normally during them.

Unfortunately the migraines are still with me but the seizures happened between 18 and 30. Got checked for epilepsy but that wasn’t it.

My daughter has non-epileptic seizures.

She has had a 1 hour EEG and then a 24 hour ambulatory EEG. She had several seizures during the 24 hour, ambulatory EEG but the results were clear, so we know for sure they are not epileptic

My daughter has been diagnosed with Functional Neurological Disorder, and the non-epileptic seizures are part of that.

She has a range of types of seizures - absence seizures where she looks like she’s staring into space through to the more ‘fit’ like seizures that we imaging when we talk about seizures.

There is no medical cause for them, but certain things can make them worse - flashing lights is one, but if she gets too hot she has them, they’re also related to stress - if you fire too many questions at once at her, and sometimes there’s nothing going on - she can be chilling on the couch watching tv.

They're not dangerous, other than if she hurts herself - she’s banged her head on a desk at college, and she once hit the deck while crossing a road.

They are frightening to witness, and she was quite frightened when she first had them but she’s quite blasé about them now

My husband had exactly this; he was diagnosed epileptic after having a major seizure at work, and was put on anti-convulsants. He was eventually diagnosed with dissociative/non epileptic seizures. He also reacted to bright or flickering lights, and stress.

Hi everyone,

Thanks so much for all this.

@WindUpBird - I am so sorry you have gone through this, it is unbelievably stressful isn't it? So the latest is that DH's consultant believes what happened in 2021 can't be assessed as a seizure, so what happened in February is viewed as a 'first seizure' and treated as such - i.e. no medication yet.

He had an EEG a few weeks ago which was clear - though they are apparently quite unreliable when it comes to any type of firm diagnosis. We also realised that DS had been taking some Benalyn Day and Night tablets in the days leading up to his seizure - they contain two ingredients which are the 'worst' seizure triggers in OTC meds. It's rare for this to happen but it doesn't sometimes happen. Obviously if that turns out to be the cause then great (and he just makes sure not to take them again) but I am still on edge because we simply don't know for sure. We are having an in-person meeting with the consultant next week to discuss outlook.

If it makes you feel any better I did chat to the school nurse who was saying that a number of kids in DS school are on epilepsy meds. They have emergency medication at school to help them if they have a seizure, but they are all doing absolutely fine and their seizures are brilliantly controlled with the meds - as it sounds like yours were @MSJK . That's great to hear it's all better for you.

@Makegoodchoices @xPissflapsx - One thing that is a bit confusing is that multiple doctors I've spoken to suggest seizures are quite common - apparently 1 in 20 people will have at least one in their lifetime, so it seems quite a leap that if you have two (that's the guidance now, rather than three) seizures, you are clinically diagnosed with epilepsy. I also know someone who (now in his 40s) would have seizures through sleep deprivation and drinking too much, but these were also 'non epileptic'. How do they actually establish this if the seizure appear to be epileptic - i.e. tonic clonic?

@alloalloallo and @DohADear - this sounds so stressful at times but it sounds like things are, for the most part, well managed now?

'It's rare for this to happen but it doesn't sometimes happen'. - sorry, meant 'it DOES sometimes happen' there! 😖

I'm so happy for you! I asked my neurologist what would happen if I stopped taking my meds.... he said I'd probably die!
I often wonder I'd feel different if I didn't take them.

@sueelleker - interesting and sorry to hear about your DH - have his seizures been well controlled with medication? They tested lights on DS when he had the EEG and they don't seem to be trigger...

Good question.. I've no idea. My first seizure was due to strobe lights

Thank you. It wasn’t an easy decision to come off meds, when I was diagnosed I was told I would be on them for life. I stopped seeing my consultant regularly once my seizures were under control and realised I had become pretty bad at remembering to take my meds so wondered what would happen if I just stopped altogether. When I started thinking about having a family, I went back to see a JME specialist who supported my decision to stop the meds. He said that thoughts around JME being a lifelong condition were changing as they were beginning to realise some patients had just stopped meds and were no longer in touch with their doctors because they had no need to be. I will say that I was on a very low dose to begin with but may be worth seeking a second opinion if it’s something you do want to do.

This is a really good question. Aged 5 my DS had a significant seizure non febrile in nature. It was a real shock when they diagnosed epilepsy because his sister had more seizures by many than he had but hers were febrile seizures.

DS had a focal point for an electrical something (I can’t remember) show up on the EEG and it was the combination of this and the seizure and other pre existing conditions that gave the epilepsy diagnosis.

My DS went on anti seizure medication (keppra) for about 4 years until there was a change in consultant who recommended that he come off all medication and wait and wait and see if he had any more seizures. Epilepsy diagnosis has significant implications for lots of things including things like driving and so they don’t want to give it without significant due cause. In addition the anti seizure medication has a lot of possible side effects so there is a risk benefit exercise that goes along with taking them. It sounds like for your son they are sitting in that wait and see space weighing up the risk benefit of a very low likelihood of seizures and anti seizure medication side effects. It might be worth asking them about the medication you can get to treat a seizure when if it happens. It is called bucculom or something similar which can be used if he has another seizure.

This is so interesting to me as my 12 year old DD also had a seizure during half term. Her first and we also have no idea why? Not seen a specialist yet or had and proper tests. She also had some kind of viral illness and was taking some medication for congestion. @Nervousgoat Any idea what the ingredients in the benylyn were??

Sorry I just looked up the Buccolam and it seems it is for kids. I wonder is there one for teens and adults.

@Lostmarblesfinder - thank you for this. Yes - buccolam can also be given to teens and adults and help stop a seizure if it's happening. I've been told by another doctor friend that we are likely to be prescribed this by the consultant when we see her. The caveat with it is that it's not something one can just take like a paracetamol in the event of a seizure because it can make the person fall into a deep/dangerous sleep afterwards - it's really only something to administer by us or a school nurse (for example) when an ambulance has already been called.

@Smartiepants79 - gosh that's so interesting, and so sorry you had to experience this too. I honestly thought we were losing DS in that moment...it's terrifying. So, in Benylin Day and Night, the dangerous ingredients are diphenhydramine - which Epilepsy UK describes as follows -

"OTC medications..... could even trigger a seizure for the first time. The most common OTC medicine that could do this is probably diphenhydramine, the active ingredient in medicines like Benadryl, which is used for colds, allergies, and promoting sleep.'

A lot of decongestants also contain pseudoephedrine - which is again referenced -

'Some OTC cold medicines may lower the threshold for seizures, for example cold medicines with pseudoephedrine.'

-- Benylin contains both these ingredients 😖

It turns out that the medical council is currently investigating meds with pseudoephedrine after a lot of reports of bad side effects like seizures - this was in the news just recently - www.bbc.co.uk/news/health-64742221

Yes you always call an ambulance with buccolam but we trained teachers, nursery workers up on it. You call the ambulance first is part of the training

This is really fascinating. I just found that bit on the epilepsy website but hadn’t seen that news report.
No more decongestants for her!! 😟 She’s going to be fed up next time she’s got a cold!