Epilepsy. Does it change? AIPU to worry?

[Shelanagig]

Hi all. I've a boyfriend I've known for around 6 months whom I've seen very rarely IRL life due to work commitments and now the lockdown. We live 90 miles apart.

He's been upfront about having epilepsy but it was controlled and he always had prior awareness of a fit and could get himself safely on the floor before it happened.

He ran out of meds early this year and had a month or so of not having any. After he'd been without a while, he went back on them and of course had the weird effects of starting afresh. Tegretol, if that means anything to anyone reading. Shortly after recommencing he fitted badly. Worse than before with no warning to get himself safe. As we were on the phone together he fitted again. No pre warning with an aura.

His GP kept him on the same dose but ensured he took them twice a day rather than his previous habit of taking both doses together.

Today he fitted again. Another bad one with no warning and again badly hurt as he collapsed.

I'm very worried that he's had two fitting sessions recently when he didn't have anything for months, and that he now seems not to get any warning. He's on his own, in his fifties.

Can anyone tell me if epilepsy changes with age? Can the changes be helped with different medication?

My instinct is to drive and collect him and bring him to my house once I've had some sleep today. BUT bloody covid-19. Plus, at my house, his GP could not send a new prescription to a pharmacy near me. I am not BU to worry, am I?

My sister has had severe epilepsy since she was a baby and it has morphed and changed dramatically over the years (the types of seizures she takes etc) so it's entirely possible.

I’m new to this epilepsy thing (my ds was diagnosed at New Year). However it is very clear that controlling epilepsy depends on a build up of the drug in the body. It will take a while for your BFs dose to build up to previous levels so seizures are very likely. Many people do seem to have more seizures when starting medication so he really must speak to his doctor about what he should do.
As for him coming to stay with you - do it. He’s ill and needs support. That is allowed. You’re not having parties or mixing families - it’s just the two of you. That said if you’ve rarely seen each other in real life it won’t be easy!

We had a family member on this medication. It was very sensitive to the dosage and the time of day it was taken. If that was changed in any way then it causes a change in the seizures.
In my experience the GP wasn't an expert in conditions like epilepsy. For a change in seizure patterns we used to contact a specialist epilepsy nurse especially if it was a long seizure. We had a contact number for one at the local hospital. The charity epilepsy action may be able to help as well. I understand that there may be alarm type systems that can alert other people / medics when someone is having a seizure.
We were recommended to keep a diary with dates and times of seizures to try and work out what was happening. Under lockdown all sorts of things could have changed - diet, exercise, sleep patterns and these could be the sort of things that may trigger seizures.
Epilepsy is the type of serious medical condition that it's still OK to contact the NHS about during the current crisis.

I’m epileptic and yes epilepsy can and does change over time. It can improve or worsen. It’s important that he takes his medication at the same time each day and doesn’t miss doses or double up on doses.

I went from seizures during sleep or soon after waking to absence seizures and at any time day or night. I’m now back to being well controlled.

There’s a lot of external factors that can also affect epilepsy including stress, sleep deprivation and food intake.

He might need a couple months to adjust to the tablets, plus stress can be a seizure trigger so he may be hitting the seizure threshold a lot easier right now, epilepsy does change with age but it sound like this was all brought on by not taking his medicine and now trying to adapt to a new one, does he live alone? He should be with someone who can look after him while he's seizing

Thanks everyone. I was so frightened last night.

He is living on his own. With stress, sleep deprivation and not eating. All factors mentioned by PPs.

Current plan is, he talks to GP on Monday and if new meds are required, pick them up locally and then come to me. I can't stay there as have responsibilities here. But as a PP noted, it will be strange and possibly difficult spending a longer time together.

Complications are that I've an injury that makes driving far painful, but I'll cope. I need the car, can't do this be train. I don't think. There isn't even a station in my town. But worry - he's in an area that has the highest death rates from Covid-19.

Well stress , not eating and sleep deprivation are all factors in triggering seizures . So could be no change in seizure pattern anyway just lack of being sensible . And double dosing tegratol ( carbamazapine ) could be dangerous . Seizure meds are strong drugs and need to be treated with care. Why isn't he taking them as prescribed ? Does he have a reason do you know ? He doesn't sound like he is taking care of himself at all but I am not sure you taking responsibility for his health is the answer.

My brother has had epilepsy since he had a head injury in his early 20s and it started getting a lot worse in his late 30s - he doesn’t usually have an aura and his previous meds (Epilim) has caused osteoporosis so he got a lot of broken bones when he fell - jaw/wrist/collarbone plus lost a fair few teeth - so went back to see his GP in a pretty desperate state. He was referred to an epilepsy nurse who works across three or four surgeries and she was amazing. She referred him to a clinic who reassessed his meds and had him at a sleep clinic for several days to see if that was triggering the seizures - it turned out that a lack of sleep did - and tailored his lifestyle and meds accordingly. Would recommend asking whether your partner’s surgery has something similar.

@chockaholic72 - that's really interesting to read, as my DC has begun having seizures out of the blue. We set up a night camera as hers happen during sleep or upon waking and it's captured that she moves throughout the night every 10 to 25 mins. She can't possibly be getting a proper sleep

@Seekingwellness it could be normal for her - I shared a twin room with a mate a few weeks ago on a weekend away and her bedding showed that she had barely moved in her sleep while mine looked as if I’d been fighting an unknown assailant but sleep analysis could help find out/rule out what is causing the seizures. Sleep was a massive trigger for my brother so he now has permission from his employer to start a bit later and finish later, and he is in bed and asleep by 10pm if not before.

Thanks, I'm definitely going to request referral to sleep clinic as I've also noticed she's only begun grinding her teeth in her sleep since developing anxiety just over a year ago and then seizures as of this year so something definitely has changed poor little love