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.

Good luck getting an ambulance, when DD had her seizure in half term we were told it’s would be several hours before anyone would be with us! We put her in the car and took her ourselves.

Hi op, my DD (14) was DX with epilepsy two years ago. She was having what we thought were autistic shutdowns, turned out it was absence seizures, she had EEG, it recorded something like 50 seizures in the period of observation.
She was placed on medication, then had her first tonic clonic last summer, she has now had her 6th tonic clonic. Her meds have been upped and so far so good, haven't had a seizure for over a month.

Eeeek that is utterly rubbish. I hope you DD was okay after. You are probably right about bundling them in the car and heading off yourself.

Oh thank god I found this thread. I’d never have known that about decongestants.

It also looks like my diagnosis journey was far easier than for some. I had been having simple partials my whole life and thought I was psychic. They felt good in fact. I had no issues until I suffered what I thought was vertigo and was referred to a neurologist. She said it was vertigo and off I went.

5 years later one crossed over to the complex partial in front of DH one day and I saw a neurologist after going to urgent care. Told it was TLE straight off, he even told me which side and was adamant as I’d seen a neurologist before and from verbal history. I had tests to confirm it, MRI showed no lesions but sleep test showed epiform activity. Everything the neurologist had said was correct. Now I take Keppra and all is good. I realise I had quite an easy ride.

I have to say that doctors in general say things like - if you didn’t wet yourself it’s not a seizure or if you didn’t bite your tongue etc. I have done these things and also haven’t. But it’s irrelevant, not all seizures are the ones we see on tv, I didn’t even lose consciousness more than 2/3 times. I was told maybe I shouldn’t have more children etc and all from doctors. In my experience they are very limited in details and recent knowledge of epilepsy. Love to everyone suffering x

@Smartiepants79 - fascinating that you experienced this. I wonder what the outcome of the pharmaceutical review will be? I reported my son's reaction on the UK GOV 'yellow card' site - might be worth you doing that too? I'll never let DS take anything with these ingredients again, and I'll certainly think more carefully about any OTC medication in the future...

Sorry the ambulance waiting time was so long for you. Ours was good - they arrived in under 15 minutes - but we are in London and not far from a major hospital...

DS was diagnosed with epilepsy at age 16. In hindsight, he had 2 seizures within 3 months that year, I say hindsight as he was by himself with no witness for the first one so we didn’t realise what had happened.

The second seizure was over 4 minutes in length and very aggressive. Following a hospital stay and numerous tests he was referred. The EEG and MRI confirmed Epilepsy straight away, immediate diagnosis at first neurologist appointment.

Initial recovery was very hard, recovery from aggressive seizures really is trauma recovery.

It’s been a difficult journey for him over the last 4 years. Adjusting to high dose meds was very challenging. He’s had additional seizures in that time, ranging from mild to severe. The cocktail of meds seems to be on point now which is great.

Managing sleep, never missing meds, alcohol free socialising and monitoring weight (prescribed meds linked to weight) is not easy when you’re in Uni and trying to have a straight forward ‘time of your life’ student experience. He has risen to every challenge and is an absolute inspiration….I wouldn’t wish it on my worst enemy.

@Wond3rment - sorry to hear it's been a struggle, but that's great that the medications now seem right for your DS and he is managing. I've also heard about the need to manage sleep and avoid alcohol (so difficult for uni students!) but I'm curious that you mention weight? Do you just mean in relation to the meds (ie if you gain weight dose needs to be upped?)

Just curious as my DS is very tall and thin - although not technically underweight, he is a beanpole and I wonder if that hasn't helped.

Sorry, I should have been clearer.

The meds are prescribed with weight being a factor in the dosage. Growing usually involves some weight gain which, in DS’s experience, meant increased dosage being needed.

@Nervousgoat my son is exactly the same - he’s always been skinny and has really shot up in the past few months, by 15-20 cms!

Does anyone on here have any experience of seizures and using antihistamines?
My Dd also suffer from hayfever and has been using daily antihistamines through the summer months for the last 3 years. No side effects at all.
BUT reading around it seems that antihistamines are not recommended for people with epilepsy and can lower the seizure threshold.??
I don’t know what to do for the best. She’s not actually diagnosed but I don’t want to take unnecessary risks.

My sister had one grand mal seizure at 12. Never repeated.

I’ve had four in my late 20s / early 30s. Nothing on any tests, I’m clear over 15 years now. The last one a consultant said ‘the brain damage must be mostly healed’ or similar. I’d had a temperature that day which is a trigger.

So not directly relevant but I’d always thought of epilepsy as a permanent thing, but it isn’t always.

My great grandma had ‘hysteric fits’ and was disabled with them, so there may be an inherited ‘low epileptic threshold’.

@Smartiepants79 - another similarity! I have the same dilemma as DS also suffers hayfever - it’s not horrendous but pretty annoying, and we have also used antihistamines in the past. Given diphenhydramine is an antihistamine in itself (I think?!), we will probably avoid in future.

How is your DD doing since half term? DS seems totally normal, possibly a tiny bit grumpier than usual - but that could be coincidental!

@Nervousgoat It’s funny isn’t it. I have read since that people who suffer from allergic rhinitis are much more prone to seizure than other people.
I would say that it took several weeks for me to feel that my raises back to ‘normal’ she was tired and emotional for a couple of week and we had a couple of odd issues with her memory but that seems to have stopped. I had thought I’d bother having a couple of absence seizures but nothing for a good couple of weeks. They so say that the effects of the medications can linger for some time.
She currently seems fine in herself but she’s 12 so it’s hard to separate it out from the hormones! 😆

OMG so many typos!
*she was back to normal

• I’d caught her having 🤦🏼‍♀️

@Smartiepants79 - glad your dd seems fine in herself. Have you seen a specialist yet? We are seeing a consultant tomorrow as it happens. I suspect that it will probably be a case of 'watch and wait', and possibly some emergency medication that we and the school have on hand in case he has another seizure, rather than start him on anti-seizure medication now. Obviously I don't want to rush into diagnosis or long-term meds on the back of one seizure, but the 'let's see if it happens again' fills me with anxiety.

One thing I have found reassuring though is the number of people who do seem to have a one seizure in their lives with no absolutely clear cause and didn't end up having epilepsy or any other condition - like your sister @newyeardelurker . It does seem to be more common than I realised.

We see someone in May. I was expecting some further tests. That was what happened to a colleagues child. The only difference was she was older but she only had 1 seizure and was sent for scans and eeg. I’m not expecting medication at this point.