To need tips for nighttime seizures and incontinence

[silvershark22]

Posting for traffic.

I am currently going through the process of having tests for seizures and am awaiting on an EEG. The seizures I have had have been at night during sleep and I typically wet myself or sometimes both. I have a waterproof mattrice protector but its difficult to keep washing.

Any tips on how to manage. I need to be able to do this at home and also will be going away. If possible would prefer a washable option as this is not a regular occurrance and don't want to make landfill unnecessarily.

Its all super tough as don't know what's happening medically. Am worried that I could hurt myself during seizures, especially at night when nobodies there to see it. I wake up feeling sick with a pounding headache and dealing with a wet bed and being covered is the last thing I want to do as just need sleep.

do you have an epilepsy nurse ?

Second high absorbency period pants

Goggle washable bed pads (Kylie pads are one brand but can get cheaper). Can get ones with wings that hold in place.
Also either high absorbency period pants or Washable incontinence pants.

Get the disposable bed squares, they gently stick to your bedding, you find them in the nappy section. Double up the layers, so mattress protector first, disposable square next, bottom sheet, another disposable square then another sheet. When it happens you remove the top sheet and pad and your bed is ready made up and protected underneath so you can go right back to sleep.

DD has a mattress protector like they have in hospitals - feels like green rubber? She gets incontinence pants for free from the NHS incontinence service - I am all for saving the planet, recycling, whatever, but it’s one sacrifice we don’t make. We don’t give her drinks after 7 pm, but she has plenty in the daytime. We make sure she goes to the toilet at bedtime.

She has up to 4 seizures in her sleep a night, but it’s very rare now we get a wet bed.

We have these washable mattress protectors. They are towelling covered so not too sweaty.

https://amzn.to/3OUpUVR

Thanks don't have an epilepcy nurse. Waiting on an appointment for an EEG. Have been told that will be at a different hospital then the one I was in and nothings showing on my NHS appointments. Trying to get an appointment with my GP to chase and ask what I should do in the meantime but never any appointments available.

Thanks period pants including with an extra pad are just not enough to hold t. I typically go to the toilet somewhere between 2 and 4 and the seizures have been at some point after then.

Yes probably should get some disposable pads and pants as am going away in a fortnight. Any brands any good? It feels so degrading to wake up in a wet bed. Obviously moving around a lot with the seizure so things need to hold up to that.

Just get disposable bed square. Don’t worry about landfill at this point when it’s not regular and likely temporary. Just make it easier on you until it’s sorted.

Yes hoping it will be temporary. Its super scary happening at night as no-ones around to know what is happening or if I need help. I do where an Apple watch but don't get notifications of falls or anything.

I sometimes get a warning something may happen with a tinglie arm and mouth and a odd smell / taste but not sure how best to be safe.

I’m sorry you are going through this. My daughter started having seizures last year. Hopefully you will ge5 a diagnosis and medication. My daughter hasn’t had an6 seizures since sh3 was on a full dose of medication.

she did wet the bed once when we were in a hotel. She didn’t wake up until the morning. I let reception know about it so they were expecting it when cleaning the room.

Sorry @Auditangel your daughter went through this. How long did it take to get tests and the full dose of medication?

Feel like I have been told things like not driving and not taking baths but no real clue how to manage in the meantime.

Have chipped a tooth in a seizure and banged my head and brooses on my body. However, non of these seem bad enough to go to A&E and can't get a GP appointment so not really sure what to do in the meantime.

Could you set an alarm for 1am and empty your bladder?

Desmopressin? I’m sorry you are going through this.

I could try going to the toilet earlier in the night but not sure it'll help as its usually after I have been for a.middle of the night wee. It hasn't happened every night either just a few times over the last month but obviously causes problems when it does.

Have you been told the basic stuff:

1. 3 meals a day at regular times, preferably low GI
2. get enough sleep
3. take medication on time
4. control your stress if possible
5. don’t over do it
6. watch how much alcohol you drink
7. keep a seizure diary and note triggers (the next day obviously for nocturnal ones)
8. inactivity or boredom can cause seizures, so keep moderately active for you
9. enjoy green spaces - nature calms people down
10. have your flu jabs every year - temperatures don’t usually help epilepsy?
11. track your seizures against your menstrual cycle - hormones can affect seizures in women (it’s called catamenial epilepsy)

We always suspected nocturnal seizures occur in relation to sleep cycles - in DD’s case, around 5 - 6 am, as she is coming out of deep sleep? We also think they occur then, as she is getting hungry after the long fast since dinner; and the medication is wearing off, as the next medication time approaches (8.30 am in her case).

Try maybe a snack at bedtime?

Ask your GP for a referral to the Continence Service. It was some time ago, but they gave me samples of various pads and pants, to see which worked best for DD. We find Tena Ladies Maxi are best, although the Continence service here will only supply Tena Super! You can either buy them from Boots or online. If you get a choice, tick no VAT as there is no VAT on medical supplies.

Seek advice from Epilepsy Action or The Epilepsy Society.

Thanks @quisquam no haven't been told any of that stuff. So don't have meds at the moment but the seizures do seem to happen at between 5 and 6. I went through a couple of weeks without having any but am on my period and had 3 this week. I hadn't known that could be a factor.

What sort of things do you prep for low GI meals. Last nights white pasta tomato sauce and icecream wasn't the best. Today was planning on chicken salad and avacardo choc pudding with berries.

I don't really drink and have not drunk alcahol at all since this started.

When writing it down assume good to note potential triggers E.G. sleep period ETC.

Can't believe the internet is prooving so much better than the hospital.

Have done an order for some disposable pants and some bed mats.

Given that I haven't been having seizures every night if I put a pair of knickers on under the pants could I use them more than one night if dry? Don't want to upset the absorbancie but feels a waste to throw away dry pants.

In addition to apple juice and lollies raising blood sugar may also help with hydration. Not sure if a factor but in A&E was given a bag of fluids after two seizures in a day.

I would wear tena pants at night to save the washing.

Sorry you're struggling - hope you get good support from your medical team soon.