You were very with it to recognise your stroke. I don’t think many people do. I worked with a GP once. He was a kind and well informed (if somewhat paternalistc) doctor. One day he was consulting with a patient when she came out of the room in the middle of the consultation and said to the receptionist “Dr L thinks he has a migraine but I think it might be more serious”. He DID have the classic FAST symptoms and thanks to the patient and his receptionist who recognised them got immediate treatment, but he completely failed to recognise them himself
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Yes I wished they had unblocked my artary too thrombectomy so my brain could have began to heal. But they said it was too risky. I have to accept this and move on but it’s difficult. At six month check up they said yes it hasn’t unblocked so optical lobe bit of brain is now dead! I was still very confused about what had happened to me, even six months in. 4 years on I feel very sad about it and wish they had tried sight loss has been difficult to deal with, my deficits are all hidden, everyone think i look very well and I’m fine x
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Hi all,
NHS England run the public-facing FAST campaign, and we will be working with them on how to improve it. FAST is based on academic research. While we are aware that some countries use “BE FAST” or alternatives, the impact of these messages have not been researched in the UK and could potentially have detrimental consequences to individual patients and to stroke units.
For example, we already know that too many people wait for all of the FAST symptoms and don’t understand that you need to call 999 when you see any single symptoms. BE FAST has not been tested to see whether this would increase the delay suspected stroke patients make in calling 999. It will take a long time to carry out this scientific research.
In the meantime, we are raising awareness of non-FAST symptoms among clinical staff including paramedics and triage staff and funding research that could lead to new ways to identify whether someone is having a stroke. We also have information on non-FAST symptoms on our website which we promote on social media.
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We never took my mother to the stroke doctor very much because they seemed to be of no use. My mother didn’t have a blood clot stroke, so no need for blood thinners, etc. She was also quite combative when needing to go places she didn’t want to go. We tried a few different anti-psychotics but to no avail. We eventually gave up on Western medicine/doctors to help her with her stroke, etc.
Also, as I sometimes forget to mention, my mother had a rare autoimmune blood disease called aplastic anemia that had come about quickly 7 months before she had her stroke. It causes low hemoglobin and low platelets. The low platelets were said to have played in role in her stroke’s severity, but they did not trigger her stroke. They have no clue what did. High blood pressure was thrown around, but hers never got past 180/95 or so.
Sometimes we can go to the doctor’s way too much. We just have to know from our instincts when we need to go and when we don’t. It is often a waste of time.
But if you’re spaced out feelings become too severe, or you just “know” something is wrong, you might need to go to the emergency room.
Please take care of yourself. Stroke effects are just so hard to live with. I know from my mother. 
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Mine was like somebody had hit me over the back of the head with a plank of wood, My eyesight dropped out and the my legs gave way. But I had no trouble with my face, my arms worked fine and I could speak fine. On the other hand I had no idea how old I was or what year it was - that was very weird!!
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Thanks
the professional peer review process has inherent weaknesses - as well as some strengths.
Community such as this - I hypothesize - as they source of lived experience can feed into those strengths and counter the weaknesses .
There is an irony when the specialist association defers to a generalist organisation as taking the lead when there is a community of thousands of examples that can inform the specialist organisation as advocate to get the generalist and enormous, so clumsy and slow to move its knowledge forward
By the time we have all of our contributions will be able to inform and improve elements of the message. The metaphoric whack to the back of the head is I guess impossible to miss! It tells you something
Perhaps the most difficult is when the signs are subtle - We need more examples - I should contribute mine too
Thanks Rod
Ciao
Simon
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@Matthew1798 - I hope the neck induced headaches are gone. I am sorry I am a bit late to the reading this time. Only because of your propensity for these headaches along with your mothers stroke, I hope you will keep that in mind if you ever feel something is not quite right. Better to risk wasting someones time than to neglect yourself.
@Pando -Amazing that you recognized. So glad you were able to say so before losing words!
@Nigelos- my stroke brain already forgot what I wanted to say to you. Going back through to find your comment seems a little too much for me at the moment. Seems like you may have been saying something just didn’t feel right, or seem right. That was the only real feeling I had before finally summoning an ambulance 3 days later. I was hoping to magically feel better after sleeping through 2 of those days. I didn’t want to waste others time, nor my money knowing I had no insurance. I really still am not certain why I okay’d an ambulance, because my ‘right’ mind would not have done that. I’m probably lucky I woke up at all.
I have recognized stroke in others almost immediately. Odd behavior for that particular person or weakness are the two traits that spelled it out to me from watching and listening…them saying something that doesn’t quite make sense, or is not generally their personality.
@Simon- I forgot to finish this and have no idea what I wanted to convey to you. My brain has been not foggy, but more like a tornado inside of it.
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@DeAnn - you tagged someone who isn’t active so I guess you meant me?
If it comes back to you then fine if it doesn’t I don’t suppose it will matter - I hope you having a good day I
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Thank you. I do pay attention to strange/unusual symptoms. Again, thank you for showing concern.
I’ve had them for years. They are arthritis-induced/tight muscles.
How are you, DeAnn? How are you feeling these days?
Take good care of yourself.
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I have been meaning to add my story - especially because it feels like it’s restarting
I woke up one day, went off to feed the cats and make myself tea in my dressing gown as I always did before Lea would wake up - about an hour later. I was a bit surprised that I bumped into the foot of the bed, the chest of drawers, the door frame & the bathroom door frame on the way to cleaning my teeth.
I went and made the tea, fed the cats sat at my computer, did some emails, Lea got up, We had breakfast, I said I felt a bit odd. I got showered and dressed but I still felt a little odd - I described it as Spacey, I had felt this sort of spacey more than a dozen time over the previous few years, as I sit writing this I feel spacy again - that’s scary.
I recorded 2 hours of training video and I remember testing whether I could place my mouse pointer very precisely over the “X” to close a window and I had full dexterity. About 11:00 still feeling odd I had another discussion with Lea and concluded that maybe it was sensible to go to a&e . That was doubly scary because it was full locked down for covid.
They had me do grip tests and peripheral vision and etc. For some reason the junior doctor said I think will keep you in overnight. The following morning I got up and when I tried to clean my teeth I found that I couldn’t do the backwards and forwards motion, when I got in the shower I had to hang on to save falling over. They did more tests and admitted me to the ward where my memory gets hazy but by the evening I could no longer use my right hand side my face had drooped a tiny bit - and I still dribble from the right hand side of my mouth like I am currently .
So my loss of ability took at least 36 hours maybe 48 to finally manifest. Because there was no clear incident time the conclusion was that they couldn’t give thrombolysis. Almost certainly they could have done it when I first reported if they had had sufficiently reliable tests, and I believe the guidelines since have been changed to administer it in more cases.
I had a CT scan sometime in that admissions process but no MRI. Some months later I had an MRI but only because I had enrolled in a study. About a year later my neuro psychologist or neurocognitive something said I’ve been looking at your MRI and I see you’ve got six or seven lesions - that was news to me.
So my objection to fast is partly how rarely it is a stereotypical description of what happens to us while it is positioned in the layperson’s mind and it seems the medical professions to be definitive
and partly
It’s detecting the “oh shiit / spilt milk” moment not detecting the early warning signs which would give hope of reducing the number of strokes that happened to families
Ciao
Simon
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No FAST for me because it was a cerebellar stroke which has primarily different symptoms, however, I am not sure if this is across the board with cerebellar stroke but on the whole it entails dizziness, imbalance, and vomiting. I am also to believe that brain stem stroke has different symptoms also.
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Hi - I didnt have any classic FAST symptoms, I had unremitting vertigo and nausea - like many others, these were not classic stroke symptoms, so the emergency services didn’t classified my symptoms as life threatening, 5 hours later I was on my way to hospital in an ambulance.
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Slurred speech and dropped foot
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I had an ischemic strokevin my brainstem. No FAST symptoms. Couldnt stand, numbness on the right side of my face (but no physical drooping), also developed some double vision.
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My wife did. 999 ignores 2 hour rule in west Wales. Amber alert not red. 5 hour wait for her. Yesterday adverting 7 hours wait. Really proud of Wales efforts. Same effort with police. Education. Social services. Everything they control. Wait on. There are at own pay rises and now want more people to mess up more. Go figure. They will get voted in again in few months.
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I’ve had two strokes, one either side of my brain. The left side I had speech issues, which at the time was just listed as ‘slurred speech’ via FAST. Would probably be considered a FAST symptom today…I wasn’t slurring and I could understand what was being said,I just couldn’t remember words. The right brain, much larger stroke was actually hindered by FAST. Because I NEVER lost strength the first paramedics said it wasn’t a stroke. Two days of dropping my phone and falling over and my sister diagnosed me over the phone. Ambulance still did not think I’d had a stroke, because I still had strength but they took me to hospital in an ambulance anyway. While in the ambulance the paramedic asked me to touch my nose and somehow I managed to turn on a machine behind and above me 
That is when they knew.
ETA. Just rememberd the ambulance was initially called because I was speaking to my partner and the right side of my face drooped for a few seconds. Always wondered about that because the stroke was in the right side of my brain and all subsequent affects have ben on my left side.
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I had all the classic FAST symptoms, recovered within seconds so checked my blood sugar and went again a few minutes later. Face droop, weakness all down right side, couldn’t lift arm far, leg didn’t want to carry me and speech just abandoned ship 
Ambulance called immediately, arrived with minutes it felt to me and was promptly whisked off to hospital alone 
In A&E they promptly gave me a tablet and proceeded to conduct all sorts of tests, heart, ultrasound, ct, mri the lot. And still, with all the classic visual signs in front of them, they found nothing…go figure! The doc could only conclude I had a TIA/mini stroke but they’re all strokes and the next could be a full blown one 
3 years on I’m still recovering!
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It was a very hot day in June 2023 and I was feeling dehydrated. Was about to get a drink when I felt a weakness in left shin and maybe a little lightheaded. Then I found myself hanging onto a door because I felt like I was going to fall. Managed to move to the bottom of the staircase where I sat on the stairs and closed my eyes for about 5mins, initially thinking it was just a funny turn because of the heat. I decided the moment had passed but soon after standing up, it happened again and I called out for someone to ring for an ambulance because I was pretty sure I was having a stroke. I was hanging on to the bannister and let myself fall gently to the floor. I couldn’t move because my left side appeared to be paralysed. Paramedics were there within 15min or so. Had very slight drooping of mouth but wasn’t noticeable when I smiled. Slight slurring of speech which didn’t hang around too long. 30min drive to hospital, found to be in hypertensive crisis and consultant said what he was seeing wasn’t normal stroke behaviour because I was switching between paralysis and recovery. It actually happened 10 times!!
The first CT scan revealed nothing ( they were looking for a bleed, I guess) so as soon as my blood pressure came down enough, I was quickly thrombolysed and not long after that, I remained paralysed. Follow up CT scan the next day confirmed stroke.
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@EmeraldEyes
I guess a few folk have got to show these typical symptoms but I wonder about their definition of a typical!
@Trace57
How’s your new normal comming on?
Your stroke presentation highlights why FAST when positioned (mainly but not exclusivley in the public’s as opposed to med. professional mind) as a definitive & complete diagnostic is unhelpful
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My new normal is…………hmmmm. A mixed bag, if I’m honest. I was due to retire at the end of 2023. I didn’t have any amazing plans but was looking forward to not having to work anymore so I could pursue the things I WANTED to do. I still can, to a degree, of course, but everything requires so much more effort. I was what I would consider reasonably fit and active pre stroke and although I’m medically fit now, I’m disabled.
I believe I received very good care after the stroke. I was on a stroke unit for a week and then moved to rehab for a further 7 weeks. By the time I was discharged, I’d gone from being totally paralysed down the left side to being able to walk with a stick, able to eat with a knife and fork without spilling everything down me (which was amazing because I couldn’t do that PRE stroke😂) able to shower/wash hair and dress myself. And much of the sensation had returned to my hand which was totally numb. So I came home with high expectations of a quick recovery. The illusion (delusion??) dissipated quite quickly.
I can do pretty much everything I could do before - not quite as well, but in the bigger scheme of things, I’m so thankful for that. Not driving again yet but it’s on the cards for early this year. I walk without a stick at home but mostly prefer to use it outside at the moment. I went for my first walk alone last week to the post box and back - about a mile. I walk at least a mile every day at home, round and round the downstairs area😳. I’d do it outside but it’s been a bit icy recently.
I struggle with…….not knowing what’s going on in my body. I’ve had more bad days than good although I want to believe the tide is slowly beginning to turn. I don’t always feel that great due to sensory issues. I’m still pretty numb down the left side but there’s still some sensation if that makes sense. Also lots of tingling which changes from time to time and sometimes the numbness gets worse, especially in the hand, arm and leg. The hand tingling tends to override any sensation I’ve gained although I can still tell whether something is soft or rough and can identify items by touch alone which again, is amazing bearing in mind everything felt exactly the same at the beginning. On a positive note, I’ve noticed the hand tingling has been calming down in the evenings for the past few weeks. There’s numbness and sometimes tingling on left side of head and neck too, including the eyelid/brow/nose and lips which is annoying and changes in intensity. If that wasn’t present, most days would be better. Left arm often feels tight from the wrist to shoulder but range of motion is still good, not perfect. The shoulder tightness is fairly new. I saw GP last week. He doesn’t think it’s frozen, maybe a rotator cuff problem. I’ve got an X-ray next week. Was also getting muscle spasms in the leg for a while but they seem to have eased off. I’m guessing I’m not alone with these issues. My worry is always whether it’s the brain still healing or something not very nice developing.
I’ve never been that good with routine but I have one now because it helps. Before I go downstairs, I like to have a little tinkle on the piano (keyboard). It’s great exercise for the fingers. I hit wrong notes of course but I’m determined it won’t always be like that😁 Most days, I prepare dinner in the morning and throw it all in the slow cooker so there’s something nutritious and tasty for when hubby gets home from work. I’ll do the chores that need doing - I have to push through these on a bad day and sometimes I’ll only do the bare minimum.
I walk in the afternoons and then usually settle down with a good book or knitting and might snooze for a bit. Friends/family occasionally visit which is nice but can be quite stressful. Hubby is home by 4pm. He’ll dish up the food, we’ll catch up with the news, or if that’s too depressing (it usually is) we’ll watch something that isn’t depressing. I might clear up after we’ve eaten and I try to get to bed by 10pm where I read until I fall asleep.
I hope things will improve with time and especially when the warmer weather gets here. My main immediate goal is to get back driving again so I can get out on my own.
Sorry for the essay. I need a rest now!!
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