Struggling with post stroke me

Hi everyone. So I had a stroke in February, I was in hospital for a week and rehab for 5 weeks before I was discharged and have been continuing physio etc at home. There’s a couple of things that I just can’t seem to get used to and I was hoping anyone with similar post stroke symptoms could tell me if they had or still have any issues with the following things, or had any ideas if they are normal after a stroke.
Before my stroke I was often up multiple times on the night to go to the loo, Mainly I think because I’m diabetic. Since my stroke when I’m asleep I don’t wake up like I used to and because of this I have been buying incontinence slips (the nappy type ones) and wearing those every night. It was getting better while I was in rehab but I seem to be regressing now I’m home and I’m waking up with them pretty much at capacity! Im just wondering if this gets easier over time? I’m 37 years old and I’m worried I’ll be buying these slips for the rest of my life!

Also with all the lovely weather we’ve been having lately I’ve noticed my tolerance for heat and the sun has dropped dramatically! I used to be able to sit outside and read/watch random YouTube videos etc for hours, but can barely make it to an hour at the moment without feeling ill.

Lastly, I know fatigue is a big issue with many people and I’m getting used to dealing with it, but I’m struggling between being fatigued but not being able to sleep… I’m usually wide awake around 4am even if I can’t sleep the night before. I think all in all I’m getting between 3&4 hours a night and it’s driving me mad!

Thanks for reading and I would appreciate any advice


Hi @LouCookson
I can’t offer any experience on either the diabetes or incontinence directly I would repeat what Jane said that generally things get better & your early days .

What I can offer experience of is not sleeping very well - which isn’t so much of a problem now 2 years on. what I did find in the first year or so was that getting up when I woke if I was awake for more than 10 minutes or so was to get up for about 15 minutes and then going back to bed. I established the pattern that when I went to bed I went to sleep so even though I wasn’t sleeping through I did find a useful strategy for getting more sleep.
I offer it in the hope that it might help you


@LouCookson and @jane.cobley i love the sun, I try to get out in whenever I can as I suffer with low vitamin D. in terms of sleep i have been using an app called balance. It is free for a year I do meditation on it, plus use the sleep section at night. he talks me to sleep. hope that helps


Hi @LouCookson
I’m type2 diabetic and still have to get up in the night, but I know that’s more from the amount of tea I drink than anything else. I do however, suffer from bladder retention. So after the stroke, when I’d eventually get off to asleep, I’d stay asleep, but would wake up with a painfully full bladder that would take two trips to empty. I’m 2½ post stroke and don’t tend to have that trouble anymore, I think it stopped sometime in the first year.

The only trick is to not have anything to drink for at least 2 hours before going to bed. Take any night time medications after your last drink and then nothing more until morning.

It does get better in time, the first 6mths is the most rapid period of recovery, then it slows somewhat.

Night time sleeping is disruptive anyway, particularly if you are napping in the daytime as well. As is to be expected, considering you are still going through an awful lot of healing and your brain has so much to do to function as best it can. You are basically on a baby’s sleeping pattern and there’s no point in fighting it as that may only slow down/hinder recovery.

Tolerance for anything was all over the place in those first 6mths, reading, watching tv, physio exercises, any house work, anything and everything I could only cope with in short bursts, 15-20mins tops, gardening was completely out for obvious reasons. The brain could only take in so much so I would cycle through 2 or 3 activities at a time then I’d sit for 15mins shuteye and start around again.

Eventually over the first 6mths to a year, all these disruptions should settle down into more normal patterns. You’re currently in baby mode, your brain is being reborn in part - rerouting, repairing, mending, re-learning and remembering…or trying to…and it’s all very exhausting work for it and maintain some semblance of functionality. Give it a break, don’t try to run before you can walk, be kind and patient with it, it’s doing the very best it can do. Really it’s amazing and fascinating what it does do in order to get itself back online :smile:


Stroke - the gift that keeps on giving! I am nearly 2 years post stroke and things are still (very slowly in that annoying stroke type 2 steps forward 1 step back sort of way) getting better. Today I even had two cups of tea at a coffee morning and was able to visit the library to change my book before making for the loo so I was quite pleased with that. On the other hand I did try to get money out of the ATM using my bus pass so maybe I’m not so clever.
All the things you have described are fairly typical. It’s particulary annoying that I am less likely to sleep at night if I’ve had a busy day and yes, having complained all winter about the cold I’m now too hot. My internal temperature control seems to have gone very wonky. All I can say is that very very gradually things seem to be getting a bit better.


@LouCookson sorry to hear of your struggles. I echo what others have said re it all being pretty common post stroke. Things should get better in time. Have you tried some pelvic floor exercises for the incontinence? They’re definitely worth a try. You could also speak to your GP. I take medication to help mine but was on it pre stroke.

My temperature control is all over the place. Last week i had the heating on i was so cold. This week i’m struggling with heat. Never happy us humans :grin::grin:

There’s plenty of reasons to be hopeful of improvements but if symptoms are troubling you please speak to your GP / Stroke team.


Thank you all for your advice and guidance!


I do notice that if I pee about 9 then when I normally settle at about 11 I’ll need to pee again then not till the morning.

It takes two trips with a decent pause between


I’ll give that a go tonight!


Who’d have thought pre stroke anyone would be having such a conversation


:joy: indeed! I wouldn’t even talk to my other half about stuff like this pre stroke… now he probably thinks I tell him too much


Welcome to the forum @LouCookson but sorry you’ve had a stroke. I don’t have the same issues as you but did have a similar themed one where I had several accidents of the other toilet kind! This was particularly due to the lack of sensation down there which has slightly improved now I’m 2 years post stroke.

I do have a bit of a problem sleeping sometimes even though I’m often very fatigued. A bit like @SimonInEdinburgh I seem to go off to sleep easily but regularly wake at 3 or so in the morning. Sometimes I put my headphones on and listen to music for 30 minutes or so which seems to help.

You will probably notice various changes to lots of things like taste, sleep, fatigue etc. over the weeks and months, but in general many things will probably return closer to how they were pre stroke. That’s my experience anyway. Initial frustration will hopefully develop into patience.

Good luck with your recovery.


I just had a televisist call with my doctor and she had asked me have i ever had Seziures before I said no i have been really shaking since April


If the bus pass works at the ATM, let me know. I will purchase one to use as well! :money_mouth_face:


I hope you are getting answers and help.


I have had issues with incontinence, much relieved I finally received some help for it. I got to see a urologist who specialized in neurological issues. The thought was the issue was related to my brain not telling my kidneys and bladder what to do. She gave me exercises to do. 1. go to the bathroom every two hours, then do nothing but focus on using it. 2. after finishing, don’t get up, but repeat 1. The idea is to retrain your brain, and your muscles to work together. It took me about two weeks of that but now I have no problem. PS, do not get up from sleep to go every 2 hours unless you really need to.

As far as sleep, I am all over the place! No telling if I will be up 24 hours or sleep 15 in a day. The harder I try to keep a schedule, the worse it gets. I think some may be anxiety for me, as I am afraid I won’t get up for an appointment and can’t sleep the night before, or that I will forget something important. I definitely had anxiety while hospitalized thinking I needed to stay awake or I may never wake up again and miss the opportunity to spend time with whoever was my visitor that day, or that I would not relearn the stuff I needed to if I did not constantly work on it.


That training regime is interesting because I have an opposite issue. I can ‘forget’ to go to the loo for several days if I wait purely to be prompted by my body.
That resultants in constipation problems.
I’ve had to train myself to be mindful and establish a conscious routine that does not rely on my autonomic nervous system because it’s not quite doing its job properly.

There’s actually a lot of stroke related disruption to aspects of just living that don’t ever get discussed much. I’ll bet interruptions to the whole ailementary canal function are as common as, say fatigue - which I am always reading about, incontinence occasionally but I think this is The first time I’ve mentioned or seen any other mention of things like having to retrain those functions - odd because a swallow test is always a standard thing done immediately after a stroke.


My urologist told me that after stroke those problems are quite common, but that it is not well known even in the healthcare field, where nurses , P.A.s and Aide’s were not very kind when accidents happened, even if one had to wait a few hours for a bedpan. I hope no one else experienced that, but as a former aide, I worked with people who got very upset as well.

I also have the issue you are speaking of. The proported ‘cure’ for that is everyday dose of Miralax. I don’t do that, although have it on hand for just in case necessity mandates it. I use the same idea with this issue…sit, at least once a day, as long as it takes. Relax, take a book along, or in my case a magazine as I can distinguish pictures and colors much better than words in a line, even if not as clearly as I would like. It also seems to be working, however, I must admit to a proper cleansing for colonoscopy in mid May that probably helped that along to begin with. I also have diverticulosis (newly diagnosed) and had 19 polyps removed that may also have helped a bit. Thankfully only precancerous cells, but new fun with annual colonoscopies. At least the cocktail they use to sedate gives a pleasant feeling…one of those times not knowing what is going on is a lovely experience.


hi lou,

with sleep I suggest regularity.
if you can tighten up with times, and stick to them that will help
just go for small improvements… and stick to strict bedtime
& your body will thank you one day

good luck, Roland


My old doctor haven’t seen in long time asked me how got be in power wheel chair

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