Younger Stroke Survivors

[kris450]

So I guess I'll start with sort of the obvious in the fact that I'm not even sure why I'm writing this. Perhaps to just get this out rather than bottle it in... who knows.

Any other people here who had a stroke when they were considered 'younger' than the norm if you know what I mean ? How did things affect you ? Hows life been since it happened ? Has it happened again ? I've so many questions I don't know where to start so apologies for that.

I'm currently 44 but had a stroke when I was 37. There was no know or discoverable cause. I was generally fit and healthy, not overweight, cholesterol was great, no real stress in my life, good diet, not a drinker in the slightest and no drugs at all. And then bang...one random night in September 2017 I'm in the car singing along to the radio when all of a sudden I notice I can't speak... Flipping brilliant !! I knew the words and what I wanted to say, just no matter what I couldn't make a sound. It was more confusing than scary to be fair. Only lasted around 30 seconds perhaps, but that was long enough !

Its most likely, the docs say, that my brain decided to try and blank the memory of it as I didn't go to hospital for 3 and a half days afterwards to find out what happened. It just took that long before it truly sunk in that whatever had happened wasn't normal. What felt like 378 blood tests and a MRI later I had the diagnosis. A stroke (full stroke not a TIA).

Bizarrely one of the hardest things was telling my folks about it. I'm not sure why but I really felt like I'd let them down in someway. I absolutely know thats not the case, but I couldn't get the thought out of my head. They had worked so hard to give me the best childhood and upbringing they could, but somehow it seemed like I'd thrown it back in their face by failing at life so young. Again I KNOW thats total nonsense. Wow the human brain can be fun can't it...

No pun intended but I've managed to walk away from it with no physical issues at all. I can walk, run, jump, talk etc etc. The original docs said they would have bet their mortgages on it being a TIA seeing as I appeared so unscathed by it. If you met me on the street you'd never tell. But nope, it was a full stroke.

Mentally however I'm a bit broken. I've done 2 courses/sets of sessions of CBT which were great, but which also haven't quite hit the spot if that makes sense. I've lost count of the number of times I've tried to go back to work but my brain won't handle it. 30 minutes of concentration and I'm destroyed for a few days. The mental fatigue then translates to physical fatigue and its a goodnight from me.
This is the part I'm struggling with. If this is my life moving forward then so be it. I understand that and I know I'm about as lucky as you can be seeing as the other possible results could have been so much worse. Its about learning how to accept that this is possibly my life now. How to embrace that and not let it pull me down. The fatigue has led me to neglect friendships as I don't have the energy and this is killing me. My close mates have been wonderful but I always feel terrible when I have to cancel plans as I just don't have the energy or motivation to go out. Perhaps I'm being too harsh on myself, but again I can't help it.

If there are any other survivors here how have you coped with this ? Any tips or tricks (even though I know it doesn't work like that) ?

As stated I'm not even sure why I've written this post, for whatever reason it felt like the right thing to do at this moment. Anyhoo I've rambled enough and for any of you who have got this far then I commend you !!

Ps if there is anyone who would rather not answer on a private forum I completely understand. Please feel free to PM me, not an issue at all.

Pps and yes, its taken me 20 minutes of proof reading before I posted this as my spelling has taken a hit as a result of what happened

[Hoofy]

Sounds terrifying... and the aftermath sounds annoying!

[kris450]

Hoofy said:

Sounds terrifying... and the aftermath sounds annoying!

Haha kind of !! Granted I've no experience (thank god !) of any other major aliments that life can throw at you, but so far I'm fairly convinced I'd have almost anything other than a brain injury effect me. There's nothing you can do to go in there and physically fix it. Thats the annoying part for me.

[Hoofy]

Going forwards, I think the only thing you can do is come to accept that this is how it is for you. If it improves, great, but assume that where you are now is your life and you have to accept it. Call it Stoicism if you want. I guess you have two choices - accept it and find peace or don't accept it and get annoyed with yourself/life/God/Noodly Monster.

[ChrisH79]

I am a stroke survivor. Also 44 but mine happened in November last year. In bed after work, woke to go to the loo and felt odd, but put it down to tiredness. When I woke again I had my phone in my hand and could read messages but couldn’t find the words to reply.

It was a couple of hours before I spoke to anyone, first my girlfriend who was struggling to understand me but was driving so didn’t know if it was her phone. Then my best mate who told me to get dressed as she was coming to see me, she took me to A&E and a few hours later I was admitted. The same as you I thought it would be a TIA, but no it was a full stroke.

After a night in hospital and a couple of days sleeping I decided I needed to start looking after myself. So I went for a walk, came home and slept for 4 hours. But I wasn’t going to stop. Fast forward to today and I’m back to work on reduced hours, swimming, walking and in the gym regularly, eating better and I’m determined to get back to normal. Or as normal as possible.

Fatigue is a thing, but it’s liveable with. The only thing that seems affected apart from that is my right hand has lost some motor skills. But importantly I can drive, although I think I’ll be going automatic when I can change my car.

Happy to chat about things off here if it helps. I’m very much still learning to live with this

[kris450]

Thanks for the reply Chris, appreciate that. And sorry to hear what happened.

I'm totally open to getting whatever help needed and I've no issues in asking for it, I'm trying so hard to get past this. Just feels like 2 steps forward and 1.95867 steps back at the moment. Added to fact its been 6 years and I've accepted the window for the biggest improvements has passed. Ultimately its about coming to terms with that somehow.

I think a lot stems from me being a scientist and not an artist in my personality. 2+2=4. Done. Simple and easy. Trouble with a brain injury especially is there is no calculation you can do to ascertain when you'll be 'healed' as such. I don't like that. Completely get the world and life doesn't work like that, but wow its tough to fully accept it.

Best of luck with your journey moving forward !

[ChrisH79]

I have just accepted that I can’t change what happened. But I am able to minimise the risk of another stroke and I am in control of how I deal with it.

It would be very easy for me to use it as an excuse and isolate myself from the world, but I don’t want to do that. I’ve got a lot of life left and I intend on enjoying it

[r3g]

Had one myself just over 3 years ago (was 44) and it came completely out of the blue ! Other than having a sweet tooth for ice-cream and being a bit overweight, I eat a good diet and am (and was) in good health. I bent down to pick something up off the floor one Monday night and when I stood up straight, massive dizziness and all my right side from head to foot went absolutely bonkers with pins and needles . I think everyone gets those times when you get up a bit too fast and cause a rush of blood, making you dizzy for a few seconds, but you think nothing of it, it clears and then you're fine . So naturally, being a bloke, I just dismissed it and then went to bed.

Woke up next morning 5.30 and was still the same, no feeling other than constant pins and needles. Drove to work as normal, no problem driving although felt a bit weird, but was in full control and nothing wrong in my head anyway (well, not any more than usual ). Didn't see anyone until lunchtime and immediately upon my colleagues hearing me talk, starting laughing and asked how many pints I'd had for my breakfast . Apparently I couldn't talk or walk straight for st and sounded and looked like I'd had about 20 pints, and the right side of my face and cheek was drooping. Never even knew til I looked in the mirror! The laughing stopped when I told them what had happened the previous night and then there was grave concern that I needed to get to A&E immediately as they were sure I'd had a stroke. Obviously, not wanting a fuss I told them to stop being drama queens, said I was fine and would be right tomorrow and carried on as normal .

It soon became clear to me that it might actually be a bit serious when I realised that I couldn't walk straight, could no longer write with a pen, couldn't hold anything like a pot of tea without dropping it or spilling it everywhere, couldn't hold or open a bottle or jar and couldn't type on a keyboard either (the latter being a big part of my income), all due to having no feeling or sensation in my right side.

I left it until Friday until I got sick of them all mithering me to get checked out, so went to the hospital. BP and ticker rate all checked out, but the CT scan with the purple dye showed that a pipe in my noggin had burst and there was a blood spill. By this point, apart from having the numbness in my hand, arm and right side of my face, I was feeling otherwise fine. Was prescribed a bunch of statins which I never took due to the controversy over them and now 3 years on I'm about 70% back to normal.

Took me about 2 months to properly 'learn' how to type again (mostly due to lack of feeling in my arm/hand - brain was okay sending out the signal to my arm, hand and fingers to press the buttons on the keyboard, but the signal can't reach destination due to severed electric 'wires' and so my hand and fingers just flail around all limp!). With enough practice I 'retrained' myself and can type just fine now, although weirdly I often miss out complete words from the middle of sentences which I never used to do.

It's taken pretty much 3 full years for me to be able to grip bottles and jars with my right hand without dropping them. I can now hold them with my left hand and grip them strong enough with my right hand to undo the lids. It sounds pathetic, but you really do take this stuff for granted when you are working properly and it is incredibly frustrating no longer being able to do simple stuff like this anymore.

Lasting effects are :

- face has never 'healed' itself and the right side of my face where my lips are is permanently numb (feels like being under constant anaesthetic for dental work), but it doesn't bother me now, my face is no longer droopy and no longer affects my ability to eat.

- still speak with a slight but noticeable slur, and I get voice fatigued after about an hour of chatting and the slurring becomes more intense with much more 'effort' needed to speak 'properly'.

- still can't write with a pen - not even my own name without it looking like an illegible scrawl. Could probably fix that with enough practice and 'retraining' myself if I wanted to.

- all my fingers on my right hand from the mdiway knuckle up to the fingertips are still numb / mild pins n needles.

- still got severed nerves between my brain and right arm / hand, making coordination difficult, like holding a plate or full cup of liquid level.

I've just put it down to a one-off event. As mentioned, nothing wrong with my diet or health up to that point and my ticker and BP are within the right ranges. If there had been then I would have made whatever changes were needed and then monitored the situation, but 3 years on here and no other issues so I think I'm done and don't even worry about it . I'm just thankful that it wasn't any worse as I saw first hand with my mate's mother how it could have turned out for me, as her stroke basically turned her into a wheelchair bound cabbage (to put it bluntly) who could no longer speak at all and had to have everything done for her until she died a few years later (natural causes).

Sounds like both you guys (Kris, Chris) have also come out the other side mostly unscathed so you shouldn't let it worry you . These things happen and you'll figure out ways to deal with it if you haven't already. For me, I just ensure I eat a good diet with a broad range of vitamins, minerals and nutrients to get all the essential stuff the body needs for good health. I mostly avoid carbs and processed carbs as they're not good for you, and also avoid medication, drugs and vaccines (raw onions, garlic, honey, lemons are my natural fixers on the very rare occasion I feel a bit groggy).

When it's your time, it's your time. Until then, don't worry about it and live your life.

[kris450]

r3g said:

Bl00dy hell !! Great effort on the recovery so far. Sounds properly scary. Again really appreciate the reply. Gonna take me a while to digest all that but its helpful even if I can't quite describe how. No offence intended in that at all if you know what I mean !

[r3g]

kris450 said:

Bl00dy hell !! Great effort on the recovery so far. Sounds properly scary. Again really appreciate the reply. Gonna take me a while to digest all that but its helpful even if I can't quite describe how. No offence intended in that at all if you know what I mean !

It's only scary if you let it be scary. There's a stigma around strokes and heart attacks where everyone panics and are like "oMfG hOw aRe yOu sTiLl AlIvE dUdE ?!" which, if you let it, can strike the fear of God into you that you're on your last legs and better start getting your will written and ensuring your life insurance policy is up-to-date. Whilst I'm not playing down the severity, in many cases (like yours and mine) it's just one of those unfortunate events that happens sometimes for no identifiable reason. If you're in reasonably good health, reasonably good diet and decline to partake in having experimental substances injected into you , then you've done all you can do to look after your body and give it its best chance of a long life. The rest is down to luck which none of us have any control over!

To quote from Red in Shawshank Redemption : "“I guess it comes down to a simple choice, really. Get busy living or get busy dying.” Good summary of the meaning here. In short, you can let it hold you down and live in a constant state of worry wondering "what if?" or you can put it behind you as something that has happened, can't change any of it and be thankful that you are still functioning right 95% and not a cabbage in a wheelchair unable to wipe your own arse, and move on with your life with the cards you've been dealt.

I note your paragraph about your mental struggles and fatigue. I don't have (and haven't had) the mental struggles but I can relate to the fatigue. I get fatigue suddenly come out of nowhere, particularly if I'm sat down for some reason. I go from being absolutely fine and plenty of energy to tears of tiredness from yawning rolling down my face and being totally drained, needing to go sleep right now and I'm out like a light in minutes. The only way I can avoid it or pull through it is if I'm kept busy doing something physical, even if it's just walking about or doing some household chores. You might want to try it. I'd go further and say that actually working a job involving plenty of moving about is exactly what you need, rather than staying at home telling yourself you're too fatigued to work. I think you are kinda compounding the issue there and not doing yourself any favours? You have to force yourself out of that mindset, think of the future (positively), set goals, make plans and do whatever you need to do to make them happen. Setting targets and goals gives you the motivation, which while you're concentrating on making that stuff happen, will take your mind off other stuff .

Just going off on a tangent but still very much fatigue related - don't overlook the effect your diet has. This has been a revelation for me in killing most of the fatigue and instead having the energy and feeling to go out and do stuff. That is to cut out most of the carbs and refined carbs from my diet and consume mostly unprocessed natural meats, such as fresh chicken, pork, lamb, beef joints, fish, eggs - all stuff absolutely swimming in nutrients (protein especially), vitamins and the protein gives you tons of energy. If you don't want to feel knackered and bloated all the time, cut out the pizzas, pastas, potato based stuff and also anything bread or pastry based. You don't have to go full keto or carnivore, but it really makes a difference to your mental state and clarity when you're loaded up with protein.

[Chamon_Lee]

Wow
Having a bit of a rubbish day today and came on to this thread out of pure curiosity.
It has certainly put things in to perspective and I applaud all of you having had something like that happen and pushing through the up hill battle post events.
Good luck to all of you and best of health wishes!

[Ozzie Dave]

not me, but my wife had her stroke ay 22, caused by avm. lift her paralysed(locked in syndrome for a week) with the doctors discussing how long she was likely to live. almost 30 years later mow and we realise that its as much mental as physical. when tired speech is an issue
we joke walls move in the house as she often walls into door frames when tired, no feeling on RHS. she carries a notepad as no short term memory. she drives an auto an is a medical receptionist, most have no idea as she has created coping mechanisms gor issues. the biggest issues were depression and her feeling she could not do things properly due to the memory. a young stroke survivor group she only attended once made her realise what she thought was just her was infact really common

[GT03ROB]

18 months back I had a TIA so not a full blown stroke.

I didn't notice but it was my wife who said there was something wrong. She said I sounded drunk. She got somebody to call an ambulance * it was all a bit chaotic from there on in for the next couple of weeks. I had a cT scan within a few mins of getting to the local A&E They could see something had happened but not a bleed & no sign of a clot. I was then shuffled around between various facilities, having numerous ECGs, drips, etc. I was stuck in a private ward of the local heart hospital (which resembled a prison cell). My wife had to be smuggled in to see me. After 2 days we got a private jet out to Istanbul. Where it seemed just as bad. I got no straight answers just a lot of confused statements. I eventually got home after 10 days in istanbul. By this time meds had been chopped & changed, I was put on blood thinners & frankly I had no idea what the real problem or seriousness was. I managed to get to speak to my GP quite quickly & they really put my mind at ease. I then saw a cardiologist within a week of getting back. He was totally chilled about the whole episode, said it was clear what had caused it & it could be fixed, but that I 'd had a timely warning . The cause had been AFib.

For the first couple of months, it really played on my mind, this wasn't helped by my meds being chopped & changed. On one occasion I got up out of a chair in the garden & the next thing I knew I was picking myself up off of the lawn.

The cardiologist who did the procedure for Afib was even more chilled about the whole thing, basically saying "Your on blood thinners, take them religously & just get on with your life". I also had a full check at the local stroke clinic. They performed numerous tests & checks, but basically said all is good so don;t worry. Maybe its how they are supposed to be but seeing the UK doctors so chilled about it all is very reassuring

Its still there at the back of my mind though, it's never far away. Any slight feeling of dizzinees or similar & it all shoots back.

I can't begin to imagine how I would feel if the cause had not been identified. It would be a struggle for sure.

[Acorn1]

A good friend of mine big lad always the joker, life and soul of the party type bloke had a stroke about four years ago and lost the ability to speak, and the use of his right arm.

He pretty much got back to normal 2 years ago and seemed in pretty good shape considering.

In September last year he had another which put him in hospital for months undergoing various treatments but mainly speech andphysiotherapy.

He can no longer walk unaided has a noticeable droop on the right side of his face and mumbles and slurs.

I am hoping he will get back the abily to at least walk and talk in time, but this time it was a lot worse this time.

He's only 52 and ran a successful solar business.

He is now in an assisted living Council flat.

He is actually in very good spirits considering his life has fallen apart in an instant and I take him out as much as I can for a pint or two although drinking is strictly against the rules according to the hospital.

I wish you a speedy recovery OP and R3

[ChrisH79]

r3g said:

To quote from Red in Shawshank Redemption : "“I guess it comes down to a simple choice, really. Get busy living or get busy dying.” Good summary of the meaning here. In short, you can let it hold you down and live in a constant state of worry wondering "what if?" or you can put it behind you as something that has happened, can't change any of it and be thankful that you are still functioning right 95% and not a cabbage in a wheelchair unable to wipe your own arse, and move on with your life with the cards you've been dealt.

This is very much my attitude, I could have spent the past ten weeks moping about and bunkered myself down under a blanket. But that’s not who I am, and I’ve never felt fitter in years. I’ve got a long way to go, especially my diet, but it’s given me the kick I needed to start looking after myself.

[Badda]

r3g said:

Had one myself just over 3 years ago (was 44) and it came completely out of the blue ! Other than having a sweet tooth for ice-cream and being a bit overweight, I eat a good diet and am (and was) in good health. I bent down to pick something up off the floor one Monday night and when I stood up straight, massive dizziness and all my right side from head to foot went absolutely bonkers with pins and needles . I think everyone gets those times when you get up a bit too fast and cause a rush of blood, making you dizzy for a few seconds, but you think nothing of it, it clears and then you're fine . So naturally, being a bloke, I just dismissed it and then went to bed.

Woke up next morning 5.30 and was still the same, no feeling other than constant pins and needles. Drove to work as normal, no problem driving although felt a bit weird, but was in full control and nothing wrong in my head anyway (well, not any more than usual ). Didn't see anyone until lunchtime and immediately upon my colleagues hearing me talk, starting laughing and asked how many pints I'd had for my breakfast . Apparently I couldn't talk or walk straight for st and sounded and looked like I'd had about 20 pints, and the right side of my face and cheek was drooping. Never even knew til I looked in the mirror! The laughing stopped when I told them what had happened the previous night and then there was grave concern that I needed to get to A&E immediately as they were sure I'd had a stroke. Obviously, not wanting a fuss I told them to stop being drama queens, said I was fine and would be right tomorrow and carried on as normal .

It soon became clear to me that it might actually be a bit serious when I realised that I couldn't walk straight, could no longer write with a pen, couldn't hold anything like a pot of tea without dropping it or spilling it everywhere, couldn't hold or open a bottle or jar and couldn't type on a keyboard either (the latter being a big part of my income), all due to having no feeling or sensation in my right side.

I left it until Friday until I got sick of them all mithering me to get checked out, so went to the hospital. BP and ticker rate all checked out, but the CT scan with the purple dye showed that a pipe in my noggin had burst and there was a blood spill. By this point, apart from having the numbness in my hand, arm and right side of my face, I was feeling otherwise fine. Was prescribed a bunch of statins which I never took due to the controversy over them and now 3 years on I'm about 70% back to normal.

Took me about 2 months to properly 'learn' how to type again (mostly due to lack of feeling in my arm/hand - brain was okay sending out the signal to my arm, hand and fingers to press the buttons on the keyboard, but the signal can't reach destination due to severed electric 'wires' and so my hand and fingers just flail around all limp!). With enough practice I 'retrained' myself and can type just fine now, although weirdly I often miss out complete words from the middle of sentences which I never used to do.

It's taken pretty much 3 full years for me to be able to grip bottles and jars with my right hand without dropping them. I can now hold them with my left hand and grip them strong enough with my right hand to undo the lids. It sounds pathetic, but you really do take this stuff for granted when you are working properly and it is incredibly frustrating no longer being able to do simple stuff like this anymore.

Lasting effects are :

- face has never 'healed' itself and the right side of my face where my lips are is permanently numb (feels like being under constant anaesthetic for dental work), but it doesn't bother me now, my face is no longer droopy and no longer affects my ability to eat.

- still speak with a slight but noticeable slur, and I get voice fatigued after about an hour of chatting and the slurring becomes more intense with much more 'effort' needed to speak 'properly'.

- still can't write with a pen - not even my own name without it looking like an illegible scrawl. Could probably fix that with enough practice and 'retraining' myself if I wanted to.

- all my fingers on my right hand from the mdiway knuckle up to the fingertips are still numb / mild pins n needles.

- still got severed nerves between my brain and right arm / hand, making coordination difficult, like holding a plate or full cup of liquid level.

I've just put it down to a one-off event. As mentioned, nothing wrong with my diet or health up to that point and my ticker and BP are within the right ranges. If there had been then I would have made whatever changes were needed and then monitored the situation, but 3 years on here and no other issues so I think I'm done and don't even worry about it . I'm just thankful that it wasn't any worse as I saw first hand with my mate's mother how it could have turned out for me, as her stroke basically turned her into a wheelchair bound cabbage (to put it bluntly) who could no longer speak at all and had to have everything done for her until she died a few years later (natural causes).

Sounds like both you guys (Kris, Chris) have also come out the other side mostly unscathed so you shouldn't let it worry you . These things happen and you'll figure out ways to deal with it if you haven't already. For me, I just ensure I eat a good diet with a broad range of vitamins, minerals and nutrients to get all the essential stuff the body needs for good health. I mostly avoid carbs and processed carbs as they're not good for you, and also avoid medication, drugs and vaccines (raw onions, garlic, honey, lemons are my natural fixers on the very rare occasion I feel a bit groggy).

When it's your time, it's your time. Until then, don't worry about it and live your life.

Wow. A lot to unpack there.

A learning point for everyone I think.