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.

I have a child with a v rare seizure disorder and he has a lot of seizures at night.
seizures are much more likely to happen when he is in that dreamy stage of falling asleep.or coming out of sleep which is v typical with epilepsy. It also explains why people have them at roughly the same time of night as they cycle through the various stages into and out of deep sleep. So my child typically has them falling asleep and waking up.and around 2am and 4am.

It's likely temporary so in this case I would put landfill concerns aside for a few weeks
/months and focus on your comfort while you're awaiting diagnosis and correct treatment

Yes do reuse the dry incontinence briefs, wearing them doesn’t affect future absorbency. Different brands fit differently and note they come in male and female versions.
apple juice and lollies are high sugar, I’d avoid. Yes you want to be hydrated but not high blood sugar.
my dh had a seizure disorder for many years, successfully tx with surgery.

You can get washable sheets that sit on top of the sheets - we’ve got lots from brolly sheets but they’ve closed down now - my son bedwets a lot and they’re good for just ripping the top layer off in the middle of the night. We then have a normal sheet and a waterproof sheet underneath that (and then that again). This must be quite scary for you ((()))

Thanks all. Yes is super scary.

Found two washable bed pads in a cupboard that had from potty training so have put these on the bed.

Hoping the tests come quickly. Its really disconcerting to not know if will have a seizure or if people will notice. Others seem to have slept through the ones recently. Hoping I don't end up needing help.

Its interesting about potentially being at a certain sleep stage. Was super sleep deprived when this all started.

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.

It’s called an aura. It’s difficult to know from your posts, what happens during your seizures although I recognise you might not know yourself; but if I were you and I had an aura, I would sit down somewhere safe, but also

1. if cooking, switch rings/oven/grill off, then go to sit down in a chair with arms - it is possible to fall off a chair with no arms sideways
2. if eating or drinking, put anything like a cup, cutlery, plate out of reach - for instance DD can fall face down into her hot dinner and suffer burns. You wouldn’t want to fall onto a glass, or cutlery
3. if in the bath/shower, turn the water off, get out and sit on the floor
4. move away from the edges of train platforms, pavements or waterways
5. use lifts rather than stairs or escalators out and about, whenever possible
6. keep a distance from sources of heat, like fires, radiators, etc in the winter

The biggest risks from falling during a seizure for people with epilepsy are injuries, burns, and drowning.

Nobody told us how to manage epilepsy for years. DD had a tonic clonic, we didn’t know what to do, so we took her to A & E. She was admitted until they could do an emergency EEG. The consultant gave us the diagnosis of epilepsy on a busy ward, a prescription and a few leaflets on safety as above. There were no paediatric epilepsy nurses, where we lived.

As for low GI, I’d avoid things like a Mars bar and a can of Coke for breakfast - I’d go for high fibre, lowish sugar cereals like Shredded Wheats or Weetabix or porridge instead of Coco Krispies; or protein like a boiled egg, wholemeal toast, fresh fruit or Greek yoghurt and fruit, whatever you prefer? Ditto lunch - avoid say just a chocolate doughnut. We eat brown bread/rice/pasta. We also find food colourings can send DD into orbit, seizure wise although I mean bright red, orange or yellow like you get in food in Indian restaurants! (It might just be her though, for all I know)

Thanks for the info its super helpful.

I think the seizures are tonic clonic, but sometimes just have the wierd feeling and nothing else happens.My understanding is I go rigid and then jurk about. Afterwards I am super confused and tired for a bit. I think I fell out of bed in hospital having one as was found on the floor but haven't done this at home.

Sorry, you are going thru this,

I use bed pads for incontinence. They hold up to 3 litres and wick it away from the skin. They are washable and dry well. i finish off in the tumble dryer this time of year, can double up if moving around a lot.

if you don't like handling the wet bedding, i use Red bags as can dump everything into it, tie up and i do a couple of days worth of clothes and bed pads at a time, tying up to stop smells and straight into the washing machine in the bag,

How about a Lifeline alarm that you can press to alert someone? or if you have a couple of alexas you can set up to make phone calls so if you fall you can shout at it, alexa call family member etc

I don't have any tips but just to say thinking of you and hope you can get some answers soon- at least then you know what you are dealing with, as it may be medication can help a lot. I've had a lot of neuro stuff since late last year and since then I've developed a new found empathy for anyone coping longer term with a chronic condition-

My DH had seizures. He wore incontinence pants at night.

Thanks all, really appreciate the support.

I am not sure an Alexa or alarm I would have to do anything would work. During the time when my arm tingles I can get help if I needed to. However, during the actual seizure I wouldn't be able to get help and afterwards am too tired and confused to do much. I do wear an apple watch so can use that for calls if not with my phone.

Mum swear by tena pants with pair of absobancy shorts. Layer up you bedding. So get 3 sets waterproofs sheets. Layer them up waterproof sheet, fitted sheet, waterproof sheet fitted sheet etc then disposable bed pad then another sheet.

Going to try calling my GP again today. Had another seizure some time between 4.30 and 6. Not sure if I should be working or if there is anything to do to speed up the tests.

You shouldn’t be driving, but as for work, it depends what you do? We know a dentist, who had to give up work when they developed epilepsy.

The period or leakage ones wont hold it. Tena Pants or Comfort Maxi pads with 8 drops will work. No need for under pads etc.

Spoke to my GP today. They advised to log the seizures and await the tests.. The GP only advised getting medical input if I have signs of infection.

Hi OP. Did you have your EEG? I'm going through something very similar to you at the moment and am awaiting an appointment with neurologist for EEG.

Speak to the helpline at epilepsy action to see if they can suggest what you can do.

https://www.epilepsy.org.uk/?gclid=Cj0KCQiAwvKtBhDrARIsAJj-kTimYrRsNEhHWz4zyfzEEKAjziZlT9X-so-HHMm46soNjeYMKmnigcAaAoPiEALw_wcB

Epilepsy action tel: 0808 8005050

Yes had a normal eeg but am awaiting a sleep deprived one any sense of how long of a wait for your neurology appointment.

No appointment yet. I only had the one night seizure though, where I wet myself, so I'm not sure they'll be able to tell much anyway.

Tena pants (boots own brand are cheaper) & mattress protector ,period pants don't absorb enough as you empty your whole bladder rather than a leak.
Have had epilepsy with night seizures for nearly 40 years & have never injured myself or had a serious seizure (status) even if it's not controlled by medication (and the drugs are very effective now) you can still drive etc if you only have seizures in your sleep.
Its actually very common and most people continue as normal work, family, driving etc .
Once you have a diagnosis you don't need to go to a&e after having a seizure.
Paracetamol and a glass of water and a lie in if possible is usually enough & iglu pastilles if you get sores from biting tongue & cheek.

Aldi do pull up pants - just under £4 a pack.
Puppy training sheets are worth trying, was recommended by Parkinson Nurse - got them from £1 shop (but not £1)