I had a Stroke August 2021

I had my Stroke; August last year aged 46. I look after my Dad on a voluntary basis, coach sport, again as a volunteer and at the time was busy helping my Daughter who had just given birth - 2 months early.

I woke up thinking I had slept on my right arm as it was numb and I had swallowed some of the pond water the day before - had cleaned my Dads fish pond out. My speech was weird, I couldn’t pronounce ‘Alexa’.A CT scan and high BP confirmed I had suffered a stroke. I spent 5 days in hospital

I’ve made just about a full recovery, I still can’t play sport as my vision goes funny and my ears pop but the thing that gets me the most is my sleep.

I feel it’s holding me back getting back into work. Every night anytime from 3am to 6am I will wake up, visit the toilet and struggle getting back to sleep. When I then wake up at a normal time I feel like I’ve just fallen out of a boxing ring.

I may be awake for 2 full hours, completely wide awake having had 4 hours sleep. I’ve been diagnosed with mild to moderate sleep apnoea but I can’t remember being this bad just after the stroke - those first few weeks are a bit blurry actually.

I’m on the usual cocktail of pills consisting of Clopidogrel, Amlodipine, Rosuvastatin and Ramipril.

I’ve not smoked since, nor vaped and found it easy to quit. I promised the Doctor’s that helped me. I’ve not drank either, not that I did much before.

Coaching sport, Umpiring and being a Grandad along with cooking has helped me massively through my recovery and I feel like the luckiest person having read other peoples stories here and elsewhere.

I’m looking forward to being part of this community and seeking advice on the sleep issues I have.

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Hi Matthew @MatthewBirch welcome to the club no one wants to willingly join. You’ll find lots of support and encouragement here amongst us.

I’m pleased to hear you’re on the road to recovery, remember it’s a marathon not a sprint, take it easy listen to your body and rest when you need to.

Sorry to hear you’re having trouble sleeping and it’s impact on you. Personally I fall into 2 categories with sleep. I either fall asleep easily but only sleep for 4-5 hours or I can’t get to sleep. Fortunately for me the nights when I can’t sleep are infrequent.

I can’t offer any advice on how to get better sleep or I’d follow it myself :joy:.

As you’ve been diagnosed with sleep apnea, can your GP offer any suggestions?

Hopefully there are others that have similar issues and can offer suggestions that work for them.

Looking forward to getting to know you, best wishes

@MatthewBirch welcome to the forum. Sorry you’ve had a stroke. Sounds like you’re doing really well.

With regards to sleep i know lots of people struggle with sleep post stroke. I’m sure you know all the usual things to try.

No phones / laptops etc for at least half hour before bed.
Have a bedtime routine & stick to it. I go to bed at 10 every night & get up around same time most days.
Try doing something relaxing before bed. Reading used to be my thing.
No caffeine after mid afternoon.
Try not to nap in daytime.
Try writing down anything that might be worrying you so you can clear it out your mind.

Are they doing anything for your sleep apnoea? I’d hope they could. May be worth trying a sleeping tablet for a few days to try and break the cycle.

Some people use lavender on their pillow too.

I’m sure there will be some other suggestions too.

Look forward to hearing more about your journey.

Best wishes.

Ann xx

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@MatthewBirch hi Matthew welcome to SS club. I’m sorry you have had to join, but we are all friendly with a wealth of experience.

I agree with @Mrs5K about a pill to get you back into the swing of your sleep pattern. You could speak to your GP and ask their advice. Nothing worse than not getting your sleep.

We have zoom meetings Mondays Fridays and Saturdays if you wanted to join. @Bobbi has set them up and it’s nice to talk and see each other if you wanted to join.

Looking forward to chatting and glad you are making a brilliant recovery. Keep going kind regards Loraine

Yes. The sleep apnoea doctor has been really helpful.

During the summer when it was boiling and I couldn’t stay asleep I had to wear all this funny kit with wires, tubes up my nose and so on.

Now I’ve been diagnosed he suggests sewing a conked in my PJs :joy: keep me off my back. Very helpful

I can’t stand nabbing an hours sleep in the afternoon, I feel battered after it and fed up of falling asleep at 9pm on the sofa.

I don’t want to try a sleeping tablet incase I end up relying on them.

I can fall asleep easy, just wish I could stay there like I did every night up until 13th August 2021. Haven’t had a decent night sleep since

Thank you Loshy for the warm welcome and YES I’d happily join a zoom meeting to say Hello to you all.

I’m looking forward to getting involved in the ‘Cooking’ thread I have already seen along with being able to offer any small help I can.

It seems quite a lot of us leave hospital and get told to ‘get on with it’. I’m lucky in that I am able to just wish others could get that support easier that they need; having read some of the stories here

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Thank you Mahoney.

Sorry that your in the same boat.

I suppose I wear the tag of Grandad well now, often sleeping when I shouldn’t

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@MatthewBirch … so sorry to hear about your Stroke etc…I have Sleep Apnea and have been given a CPAP machine thru the NHS Respiratory Department. It took a little bit of getting used to - but 5/6 years on I now sleep way better than before, not perfect but I’m very grateful. It’s a Resmed model airfit f20…have found that’s the best for me. Before, I was stopping breathing c. almost every minute! I kept waking up thinking I was swallowing a spider (ugh) … basically I was trying to clear my airway, in hindsight. Ok, they’re not very attractive :sweat_smile: buuuut, I’m so grateful for the CPAP, I don’t care, and I’m not a vain person anyway. Once you get used to it, you don’t notice you’re wearing it, and there’s lots of different styles.

There’s also a water compartment if you get a dry throat with air going into your throat/nose.

Anyway, I hope you’re eligible, as I can relate to your description of how you feel when you wake up. Not nice. Wishing you lots of luck with it :sparkles:Anne :sparkles:

@MatthewBirch glad the sleep clinic were helpful. I did chuckle at the conker in your PJs but I believe it does work.

Prior to my stroke I only ever had 3 - 4 hrs sleep a night. I used to get by on that but have to say I was permanently tired. Since my stroke I seem to sleep at least 8 hours a night. Seems a stroke was all i needed to sort my sleep :rofl: suspect more to do with not being at work.

I did try some herbal sleeping tablets a couple of years ago and they did help. I only took them for a week so weren’t addictive.

You could maybe try adjusting your bed time to see if that helps.

My physio told me that day time naps were ok as long as they didn’t stop me sleeping at night. I still have the odd day where i nap but not so much now.

I hope you find something to help.

Best wishes.

Ann x

Hi @MatthewBirch welcome to the group, sorry to hear about your stroke, yours was the same time as mine I was 47, a lot of what you’ve said is very familiar. I struggled with sleep after my stroke, they gave me sleeping tablets in hospital I continued on them for a few months when home but decided to stop, I was sleeping far too much and felt out of it. The first few months I napped all the time but now I don’t like doing it, sorry I can’t really give any advice, I also wake through the night, I get a good sleep but it’s either in two or most often three stages with me awake maybe an hour between each stage. The strange things stroke does to us! You sound as if you have mostly recovered really well, hope you get your sleep sorted out

Hi all, and hello @MatthewBirch & @Sharon_B particularly…

I read both your comments and whooped a little spasm of joy that there’s people out there going through the same things as I, not in a bad way, more in a relived shared experience way.

For eleven months continuous my sleep has beed distrubted in the same pattern, I sleep like the dead for no more than three hours, wake, startlingly awake and sit for two hours actual at quite a high level of function, before grabbing another three hour bout before rolling into the morning proper and actually feeling happy that the suns come up and that I can now rightly be awake.

I’ve started to unpick mine, and yes apnea was one of the avenues, obstructive apnea would have suggested some sort of blockage and usually is accompanied by waking with gasping for air following a relapseof the tongue or pallete, Centralised apnea is again typically accompanied by the same waking by gasping for air, as the brain has fell asleep (a neurological failure to breath) and caused the same symptoms.
tbh neither of these match for me, I did and do still wake with a dry mouth, which can be attributed to either medication or much more likely a new fault of sleeping with my mouth open.

Our meds will cause us to be dehydrated so I’ve been front loading, a technique that involves drinking a large amount of water an hour before a set bed time, knowing that I need the hydration, knowing that I am going to get up for the toilet at some time, and so loading all that in to the system to come out of the system in one go, add this to only taking a small glass of water to bed with me, to literally wet my whistle should I wake with a dry mouth and this can and might start to help with hydration and over excessive toilet visits in the night.

Our meds can cause insomnia, add this to our likely suffering of PTSD and we’re all good for a crap nights sleep.

Almost every one of us here has PTSD, in the middle of our brain is our amygdala, a small alarm bell that rings our “fight or flight” mechanism and when triggered it floods our bodies with adrenalin and instructs our adrenal glands to flood with cortisol also, these chemicals heighten our senses, charge our muscles and allow us to flee or fight those pesky sabre toothed tigers.
When we had our strokes these two, our amygdala and adrenal glands went into overdrive, keeping us alive through the event, but then terrorising us post event, we were wrapped up in hospital, relatively safe and sound and yet they kept pinging, charging us over and over with a whole flood of chemicals we had no real need for and no real way of washing out either, other than drinking lots of water.
After my own stroke I suffered greatly with sensory overload, lights, noise and especially people. They sent me into a feverish clostraphobic near state of panic, I remember my three children coming to see me at home, all stood in my small kitchen with me, me trapped in the corner, my amygdala and adrenal glands were banging, I could literally feel them charging me to escape this overload and I’d never experienced anything like it. I stepped out and away but afterwards was left toxic and dibalated by the chemicals. For a long time post stroke I had super senses, I was like Spiderman to my own body, sensing and feeling every twinge and pang, living at a higher frequency in almost constant fight or flight mode.

The anxiety of having a stroke, the surviving, the trauma and stress going forward means not only did we survive a war, but for many we wake every day and feel like we’re still in a war, almost constantly under threat, almost constantly readjusting and seeking answers whilst our recovery and all the symptoms it comes with cascade through our bodies and minds.
The adrenaline that we’re loaded up with and the cortisol pumped out by our adrenal glands we ironically have no real way of getting rid of, ordinarily we would run from our threat, expending the chemicals produced to defend us, but as stroke survivors this seems highly unlikely, the best we can do is some gentle excercise, go for a walk and flush it down by dilluting them both with water.
Eventually we can end up with AFS Adrenal Fatigue Syndrome, where the gland has been pinging for so long it becomes exhausted which in turn causes another whole load of cascading transient symptoms in to our bodies for us to wonder, are they stroke related and so we go around and around and around.

Stress - Anxiety - Cortisol - AFS - Amygdala - Drugs - PTSD…
all ending up and adding to insomnia, we lose the ability to form a normal and regulated sleep pattern.

I would like to say to you both, challenge it, challenge the sleep pattern you’re accepting, I accpeted mine for a long time, but since have started to pull it apart, accepting that we have PTSD and are suffering with it, learning to dillute and switch off of amygdala and adrenal glands allowing both to recover are essential, yoga, meditation, relaxation therapy, whatever you works for you is an important part of wrestling back control and starting to feel more like our PTSD is being challenged and addressed is super important.
I front load with liquids at 8.00pm, accept that I’ll be going to the toilet at 12.00, that I’ll be going to bed at 9.00pm and so waking around 6.00am, accept that I have insomnia caused by meds, PTSD and possibly AFS but no longer accept that I’m going to wake up and stay awake for two hours.
Yes I wake up still but I now challenge that by not turning the light on, by not adding a cup of tea and a visit to a laptop or phone in with it and do stay in bed, demand that I challenge this pattern and relax and ground myself back to wanting a fuller longer nights sleep.
I figure it’ll take me a while yet to unlearn what my trauma and PTSD has given me, but I am challenging it, I will try every holistic and natural remedy and therapy I think will help and do not accept that this is just how my sleeps going to be post stroke.

I hope you both challenge your own pattern, and acknowledge that it’s normal with PTSD to struggle with sleep, we’ve lived through and may still be fighting a war inside ourselves, winning sleep is just another part of the battle.

Good luck both.
Al

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Hi @Pontwander firstly thank you for all the information so much of it makes sense, I’ve been sitting reading saying oh that’s me several times, it is reassuring to know your not the only one.
I nearly always sleep three hours then wake after being absolutely zonked, I laughed at you saying you feel happy when the sun comes up :grin: peeking out my eye mask I am always so happy if it’s proper time to get up, I would like to say I jump out the bed but we’ll I move as fast as I can :joy: I get the dry mouth as well, I had thought it was meds but I will be sleeping with my mouth open, I have a nose problem had pre stroke. I sleep with a splint on as well, I’m surprised I get any sleep :rofl:
I too suffered hugely with censory overload, I still do. My own small kitchen has been a place of many meltdowns, my Sons live with me I’ve learned to try and stay out the way when they are home from work cooking etc but it’s not always possible especially when you need to walk through it to get to the bathroom, making it through that kitchen to safety feels like walking through a battleground for me :rofl:
I will definitely try and challenge my sleep pattern, I’ll start with the water tonight. Good luck with your continued fight, let’s hope we both get better :sleeping: ahead of us.

Best wishes
Sharon

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Prior to my stroke i was someone who only ever got about 3 - 4 hrs sleep a night. I think a lot was down to being so busy I never really switched off properly. From reading everyones posts i think i must be in a minority of people who sleep well since their stroke. I regularly get 7 - 8 hrs a night but can be as much as 10 hrs.
I tried lots of things for my sleepless nights some more successful than others. The one thing that did work for me though was reading for a few minutes when i went to bed. I always put my phone / ipad away at bed time and even if i am wide awake i don’t look at them again until after i get up.
I can completely empathise with the sensory overload. I have this and i avoid the kitchen too when hubby is in there. The noise of cutlery, oven fan etc sends me into meltdown.
Good luck with trying to sort your sleep & to everyone else who struggles too…
Best wishes
Ann x

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Thanks for the replies. I’ve enjoyed reading each and every one and can relate to my own sleep struggles in each and every one of them.

I’ve tried so many things over the last year and a bit and question why it’s still like this?

I had a small/minor/light stroke, a lucky escape compared to so many here - I’ve Learned that in my small time.

Since Thursday I have done whatever it takes to stay awake until midnight and for the best part have slept through until 7am onwards and woken up feeling like I’ve slept correctly and I can fully function.

I’ve always been funny with loud noises close to me, never bothered me in my 90s and early 00s driving round with those large speakers :see_no_evil: and furthermore those even bigger speakers next to the DJ booth in the night club. Now though I can’t tolerate the scream my Grandaughter lets out, it feels like a moth is in my brain flapping it’s wings and I feel like throwing myself to the ground like a scene from any WW2 movie.

In 2019 I worked in the local airport as a baggage handler and my shifts often started at 3 or 4am, if only I had (up till recently) this sleep pattern then :joy: for now, it’s one day at a time and I’m so grateful that last few have given me real hope.

Thank You for every reply written, I’m so sorry it’s not just me :heart:

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@MatthewBirch sounds like you’re making a bit of progress with your sleep. Lets hope that continues long term. I do find a regular bed & getting up time helps a lot.

I’m with you on noise. I really struggle these days. I’m going to order some loop earplugs to try as not coping with noise is stopping me doing things.

Best wishes.

Ann x

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