Epileptics and sleep

[drumlit]

Could any epilepsy suffer please tell me if you think you are generally more tired than the average person and need more sleep? Thank you

[JammyDodgersandPeas]

Generally I'm quite sleepy but that could be the kids! It can also be a side effect of meds rather than the condition itself - do you have epilepsy?

[kirinm]

I don't know. I don't think so. I suspect my mediation could've caused tiredness at some stage but I've been taking them for about 15 years so doubt they're still causing problems.

I am very conscious of sleep and / or lack of sleep because it is a trigger for me so I'm very aware of how tired I feel on any given day.

[drumlit]

I don't myself, it is DP, he has not been prescribed any medication yet and so I am wondering if it is typical of this condition or not

[kirinm]

No sorry. I would be very sleepy after a seizure but i was diagnosed a really long time ago so can't remember that well.

[BigGee]

Yes, im epileptic and its controlled by meds, so no seizures for years, but I know I need significantly more sleep than my husband. I rest as much as I need to, but I appreciate that its easy for me as I don't have small kids. Resting isn't just about sleep, its about relaxing and taking breaks when you feel the need.

[chockaholic72]

I'm not epileptic but my brother is following a head injury. His seizures are massively effected by lack of sleep. We found this out by accident when trying to rule out triggers during a particularly bad run of seizures; his epilepsy nurse referred him to a sleep clinic. They established that he needs a good eight hours, and to really cut down on booze. He's in bed and asleep before 10 every night and the difference has been incredible.

[EnlightenedOwl]

Yes I need at least 8 hours every night. Also good sleep hygiene is essential as otherwise its a trigger

[EnlightenedOwl]

@BigGee

Yes, im epileptic and its controlled by meds, so no seizures for years, but I know I need significantly more sleep than my husband. I rest as much as I need to, but I appreciate that its easy for me as I don't have small kids. Resting isn't just about sleep, its about relaxing and taking breaks when you feel the need.

Just picking up on your point - I'm also seizure free for many years and the doctor (GP) has made vague noises about reducing meds but to me that's a bit why would you as obviously no seizures as meds doing their job! Have you had anyone suggest this to you?

[BigGee]

Not yet, Enlightened owl, and I'd be kicking and screaming if they did. It took five years to get my driving license back after diagnosis and three different meds till we got the right one. A hissy fit of biblical proportions would ensue if someone tried messing around with me!

[EnlightenedOwl]

thanks i may have heard something that wasn't said if you know what I mean thinking back and made an assumption he was thinking of doing that as nothing has been suggested openly or since. I think I get panicky at the thought of and sometimes hear things that aren't being said!

[BigGee]

There's no danger a GP is qualified to muck around with seizure meds, so if they DO try to change anything, contact your neurologist immediately. That's way past the GP's level of expertise. I've had issues with the supply of my non branded medication - it needs to be consistent to the same manufacture, not chopped and changed. My pharmacy said they couldn't guarantee that, till my neurology nurse stepped in and said "fine, in that case we will change it to the branded version". A difference between £5/month and £80/month gave the pharmacy a bit of motivation to guarantee that supply. If you're worried please contact your neurology team x

[EnlightenedOwl]

Thank you x I've not had the branded and generic aggro as my meds are cat 1 must stay on same product. Yet anyway

[BigGee]

Wow, well if you're on cat 1 meds, there's absolutely no way anyone but your neurologist should be fiddling with it. Mine is cat 3, so technically it should be flexible, but I've been a bit of a challenge with severe reactions, so I'm treated with kid gloves. I was hospitalised with Stevens-Johnson Syndrome with one, never again I hope!

[EnlightenedOwl]

Well hopefully nothing has been said since and I am wondering if I have misinterpreted to be honest quite possible lol

[underneaththeash]

Anyone with a health condition will surely need more sleep since sleep it suppose to restore and repair the body.

[backseatcookers]

My epilepsy journey only began at 30 (now 33) after head trauma in a car crash.

I am exhausted all the time, but it has improved since my meds have started to help my seizures. I used to be absolutely fine on six hours sleep pre crash but now need 8/9 minimum.

Sometimes I'm tired because of seizures, sometimes I have seizures because I'm so tired. Sometimes that becomes a vicious circle.

Agree with others that when it comes to anything epilepsy related, your neurologist must be priority as even a fantastic GP (mine is awesome) can't be expected to know all the nuances involved.

I would also recommend speaking to the National Epilepsy Society in Chalfont. They have a helpline and have been an incredible support to me in times of confusion and upset about epilepsy related issues.

[MyfanwyMontez]

I have epilepsy as a result of a brain tumour .The epilepsy is controlled by meds and the side effects can cause fatigue.I need a lot of sleep.
With regard to reducing the meds because the seizures are more or less controlled, my neuropsychologist says that seizures may be controlled but there’s potentially a risk , so the meds stay at the level prescribed.