Disbelief all around. My stroke story

Hello.

In late October I suffered a stroke. I am 46. I am ( or was ) extremely fit, apparently healthy, didn’t smoke or drink. I didn’t fit into any of the high risk categories.

My stroke began with a sudden and severe headache. For me, the first sign of something more serious was when I went to type on my laptop keyboard and noticed I was struggling to type with my right hand. I’ve had quite a bit of first aid training, so I got up and went to the bathroom to look at myself in the mirror. I had no facial drooping, I could raise my hands in the air and I could talk to myself. It was ok, I told myself, I wasn’t having a stroke! I went back to my desk and tried to work and my right hand gradually got slightly better. About an hour later, with my headache persisting and whilst sat at my desk my vision suddenly went completely blurry, I could not see anything. At this point I got scared. I lay on the floor and hoped it would get better, which after 15 or minutes it did. I went to have a lie down before deciding to get some tea, it was at this point that my eyesight began to fail again and I realised I needed to call someone - so i called my GP, I could not convince myself that I was a medical emergency. Only after they told me to ring an ambulance, did I dial 999.

Even when the paramedics arrived they were not convinced I had a stroke. By this time I could use my right hand at least partially, my eyesight had mostly recovered and I got through most of their tests but they were concerned enough that they advised I needed to go to hospital.

I spent 8hrs in A&E, I was seen promptly, had a CT scan etc but the doctors I initially saw thought I had a bad migraine. I was about to be discharged when a new doctor came to see me and thought my CT scan showed an abnormality (but not a stroke) that was of sufficient concern that he referred me for an MRI scan. I was then handed over to a medical team to treat a ‘bacterial infection and dehydration’. It was now 12 hrs or more since my first symptoms. I got given a corridor suite and bedded down for the night.

Then at 3am I was woken by a nurse and, for reasons I still do not know, found myself in the stroke ward with a nursing team saying they would need to treat me as if I had a TIA. I am not sure even they thought I had a stroke.

It was 0930 the following morning when I had my MRI scan, 24 hrs after my symptoms began. The MRI scan showed I had suffered an Ischaemic stroke, on the right hand side of my brain.

I was not told this initially. I discovered my fate some 2 hours later whilst sat in my hospital bed overhearing a conversation between two ward nurses who were evidently shocked that the patient in bed number so and so had had a stroke. It was only when I looked up at my room number that I realised they were talking about me!

It was 2030 that evening, 36 hrs after my stroke began before a doctor finally came to see me and told me face to face that I had had a stroke, and 48 hrs before someone came to tell me what happened and ask how I was feeling.

Not the greatest experience, on all fronts, but I cannot fault the caring nature of the nurses, trying to do a job in evidently very challenging circumstances. As frustrating as things are I count myself lucky, I just struggle with reminding myself of that fact at the moment.

I have since been diagnosed with a PFO (hole in the heart) but with the exception of that ‘pathway’ no other cause for my stroke to have occurred in the first place has yet been found. I may never know why.

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Hi @Rufus
Thanks for sharing
Seems many of us travel a similar path. Elements of your experience are also fairly typical in the rough structure if not the detailed to many others here

A number of similarities to my story - and a number of differences - did you get thrombolyasis with all that faffing about?
I went to a&e when I was having a stroke - early on in the journey BUT they didn’t manage to persuade themselves for a day and half by which point they said it was too late to do anything

Have you done the fast survey and the how do you spot a TIA

Ciao
Simon

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@Rufus thank you for sharing your story. In some ways it is similar to mine. I started with dizziness & vision issues & i thought it was just some virus that’d pass. I was typing rubbish on my keyboard although in my head it was ok. It was 4 days before I ended up in A&E after my GP said he thought I’d had a stroke. Like you no risk factors & i was just 49. I was on the stroke ward for a few days begore I started to believe I’d had a stroke. Despite being told I had I didn’t want to believe it I think.

Hopefully they will fix your PFO which will lower your risk of anything else happening. Many people don’t find out a cause for their stroke which doesn’t help when we want to do everything we can to prevent it happening again.

Wishing you all the best.

Ann

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@Rufus I’m just new here. Diagnosed with a stroke last week. Some similarities. Hope your recovery is going well

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Yes, it amazing how even after you have been told it is quite hard to take on board. I sat in hospital like a bomb had gone off. I would wake up thinking it was a bad dream but then realise I was hooked up to all these monitors. Even several weeks late, it still felt like I was talking about some one else when telling people ‘I had had a stroke’

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I wasn’t aware at all of mine . After an op my legs didn’t work properly but as didn’t improve after 4 weeks I went to see my GP. Sent to hospital, CT scan done, admitted and nothing was said. However anticoagulants and statins given so I presumed it was a stroke. Dr following day told me I probably had but CT wasn’t clear. After review by stroke team I was told it wasn’t conclusive so had MRI, still awaiting results. Meanwhile I have fallen backwards twice in last today’s. Feel more unstable too. Could be loss of confidence but who knows. I hate the waiting. Something wrong but need to get clarification before treatment or more tests. I am so frustrated as many probably are. Exercises given caused sciatica. Shoot me now! My innate sense of humour is disappearing as my confidence drops. :woman_shrugging:t2:

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@HelenW1 i hope you don’t have to wait much longer for the MRI results. The waiting is the worst bit i find. Once you know what has happened you can start to get the appropriate treatment.

Best wishes

Ann

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@HelenW1 please don’t go that way into the potentially vicious spiral.
Humour is the thing that allows Lea and I to cope and was vital in the early months. Her “sponge on a stick” quip is still a source of mirth - humour is an important mechanism for dealing with fear.

How is your sleeping? Sleep is important for resilience including against stress.
Lorraine @EmeraldEyes has just posted about how stress affects the post a stroke brain so fundamentally in ways that we wouldn’t of imagined pre-stroke. I wonder from reading between the lines of your original and this post if you’re finding the uncertainty and the time scales stressful?

Best is the virtuous circle of focusing on tiny micro wins that build to be small victories that mark the path towards improvement . It’s very hard to see them earlier on - most folk treat a day when they have managed to have a snooze and make a cup of tea or just drink one made by someone else a victory at the start

Progress is a case of 3 step forwards two step backwards for most of us and it is a process with time scales of months and years for most of us. That might be hard to accept and it might be overly pessimistic in your case I don’t know - but the emergence of things like a sciatica (which I also got - although I put it down to altered gait rather than exercises) are definitely the ‘steps back’

a lot of us do have to live with uncertainty from what was the cause etc etc. I think we mostly posted about this when you first introduced yourself :slight_smile: ?.
Generally I have seen those who report recovery have managed to grieve and then accept and move on.

You say you’ve had two falls? Did you just tip over backwards? Where you aware of going over? I’m just wondering whether some fall management might help you pro-temp? IE learning how to fall as safely as possible - there are YouTubes that cover that sort of thing. In any case it definitely sounds like something to see the GP about - being the gateway to more specialist help.

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Now you know otherwise :blush: Welcome to the forum @Rufus and thank you for sharing. You’ll find that every man, woman and child can be at risk of strokes as it’s also genetic, can even skip generations :roll_eyes: Poor lifestyles choices merely increase that risk :face_with_diagonal_mouth:

Thanks Simon
I just fell backwards, no warning! I’m am beginning to think something else has happened! But at this stage don’t want to go to hospital until drs strike is over. I have lost bladder control too! As I only regained this after the op I had in November, this is a real blow.
I like many hate the thought of putting my husband of less than 2 years through all this crap!
Think I will discuss this latest determination with him tomorrow.

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Thank you . I live in hope xx