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Epilepsy

5 replies

weakpanda · 11/02/2021 15:09

I've just been diagnosed with epilepsy. I'm 38 and I've had 3/4 seizures (3 definitely 1 were not sure on) each time when the seizure stops I'm in a confused state and "wake up" after up to an hour with paramedics trying to calm me down.

I've just started anti seizure meds today, can any one give me some tips or advice?

My shoulders/arms are quite sore and painkillers don't seem to help. Luckily my husband had this week off but I'm worried for when he goes back to work, I have a couple of teenagers so have help but I don't want to scare them, I also apparently start stripping after a a seizure but I have no memory of this

OP posts:
SpudsandGravy · 11/02/2021 16:38

I'm sorry to read this. I haven't got any experience of it, but just wanted to send you some best wishes while other people are coming along Thanks

RandomPatternedTiles · 11/02/2021 18:46

Have you had any tests to determine any cause, OP? (Sometimes epilepsy is idiopathic - ie. no cause).

Sending sympathy as my husband is epileptic and seizures and their unpredictability is scary Thanks

LindaEllen · 11/02/2021 19:01

Hey :). DP has epilepsy so I'm very familiar with seizures, though obviously this won't be much use until you know it's what you have.

The good news is that once you are diagnosed, you won't need medical intervention every time. DP always has his shortly after waking, so luckily he's in bed (he does fall out occasionally while fitting) and he'll have 4 stages..

The actual fit (jerking etc, starts with him crying out as air is pushed up past his vocal cords - it always sounds scary like he's in pain but it's just the air, he knows nothing about it)

A period of difficult breathing as a lot of spit/blood (from bitten tongue) has built up in his mouth. So breathing will sound like he's breathing underwater and gradually gets back to normal as his body lets him swallow again. Eventually it just sounds like little snores and he just seems asleep.

The next stage is waking up and confusion. Often he can't speak properly. He always wakes up wanting to go for a wee (even though more often than not he did that during the fit) so I help him up. I have to help him to the bathroom as will try to go somewhere random to wee if I don't direct him 😅. It's just the confusion - your stripping off is probably your version of this!

Fourth stage after he's been to the bathroom is going to bed and sleeping for a long time! He will sleep for hours, then will wake up and ache all over and have a very sore tongue from where he bit it. He'll come downstairs and have something to eat, be really sleepy and we'll go for an early night. It wipes out the day if he fits in the morning, but by the next day he's back to normal luckily.

Sorry for the long post but it's useful to know other experiences - plus fits can get predictable in their progression, so whoever is with you will learn when you need to call an ambulance and when all you need is supervision until your fit is over.

Importantly - it's worth pointing out that DP, along with the vast majority of others with epilepsy, has his fits completely under control with meds. That's to say if he takes them and they remain in his system, he won't have a fit. The only time he ever has them now is if he's ill with an upset stomach so his tablets aren't in his system long enough.

It can take a little while to find a med/dosage that works for you, but once you do, you should be able live completely as normal, without fear :).

wizbit93 · 11/02/2021 19:07

I was diagnosed at 43 after having a seizure. I had almost got my licence back and had another one Sad
Mine were brought on by a lack of sleep. Both times I had barely slept and my consultant said this can be a trigger. I'm on meds now and touch wood, I've been ok since and got my licence back. Unfortunately a side effect of the meds is insomnia so I've been advised by the consultant to keep a stash of sleeping tablets.
Hope you're sorted soon, hang in there. Smile

spacegirl86 · 11/02/2021 19:28

My husband has recently been diagnosed. We have found a Facebook group (uk epilepsy support or something like that) really useful for general support and as they have information live streams that are really helpful.

From a perspective of seeing a loved one fitting it is scary, but luckily I had had some training at work so knew vaguely what to do and most importantly had seen a video of different types of seizure so when he started making the horrible breathing noises I knew it was normal. It may be an idea to teach your teens exactly what to do abs expect. It may be scary for them but seeing one unprepared will be more scary.

Hope the meds sort it out for you - it seems to for most and know you are not alone!

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