“A couple of times she separately noted a stabbing pain behind one eye. A check by her optician could find no reason for it.”
This reminds me of a pain I had a few weeks before my stroke. It was a sharp psin across my cheek that went up behind my eye. I thought maybe a tooth infection do saw my dentist who ruled that out. I then went to GP surgery for some bloods which all came back fine. I remember mentioning it to a couple of people at work who advised I get checked (which I was doing) & remember being quite flippant saying to them it’s ok I am not going to keel over or anything.
Then I had my stroke.
I mentioned this pain to stroke team & they said it was likely connected.
Would I have expected GP to realise this?Probably not as could have been many things like a lot of symptoms we get.
Thanks Quarterp,
I am so sorry to hear about your wife - I lost my wife 8 years ago. I know there is nothing I can say.
There seems to be a common theme emerging? Namely vertigo and to a lesser degree headaches/migrane.
It made me remember that for months (more like a couple of years) before stroke, I had intermittent headache above my right eye - it was like a line drawn on my forehead. And my stroke was….. right frontal lobe. Not had it after stroke. Interesting.
I put the headaches down to Covid and u may have seen my earlier posts - i had periods of debilitating fatigue with general unwellness particularly after Covid boosters. If only I’d known what is written here.
Thank you for sharing your experiences i do think everything that everyone has written about in this thread to be very important.
Thanks again.
Hi and thank you for your comments.
As I see it someone needs to compile a database - perhaps a simple Excel spreadsheet, gathering information from people affected by stroke regarding any symptoms experienced in the year before the stroke.
That is relatively easy to do and the Stroke Assoc is ideally placed to set that up.
Imagine - data regarding thousands of people that have had a stroke could show obvious trends and hint towards which symptoms are important.
Sounds like an idea that you may wish to discuss with the Stroke Association.
I am sure they will be happy to discuss this and perhaps you can help with your knowledge and ideas on how this database can be developed?
Then if there are any trends perhaps some data analyst can identify them - you might even be that data analyst
Our Future Health has the Stroke Association partnered in their research. I recently completed the survey. It’s a similar premise to what you are suggesting. I found the survey to be too generalised for just stroke and struggled with a lack of options to elaborate but this is only the first stage, so who knows they may take the feedback onboard.
My own view on this is that for some reason Stroke is the poor cousin in NHS healthcare and possibly in world healthcare. There seems to be little or no interest in the subject compared to other subjects - it’s as if it’s “not sexy” to be a stroke consultant or something like that.
Personally, I have found the experiences of dealing with healthcare professionals at all levels in the stroke care truly shocking. This goes from the specialist stroke consultants and then the daily ongoing care team members e.g. district nurses, care assistants, GPs, therapists etc. Very few get anywhere near the level of expertise or desire to provide an excellent service and I really can’t understand why this might be.
For me, as carer for my Mum this was particularly unsatisfactory because it was obvious she was being discriminated purely on her age rather than her health condition.
With regards to could Mum’s stroke have been prevented, I can say that with the benefit of hindsight I believe it could have been. In her case she had shown the FAST symptoms that were likely due to mini-strokes but we somehow missed them or ignored them and she herself had not been told about them. Also, one of the strength of character of Mum was her stubbornness and she was always refusing to see doctors or accept medical treatments and so in that respect, she may have been her own worst enemy and so it might not be surprising that her stroke was not prevented - we had respected her wish not to be given medications for preventative measures and whilst she had the choice she chose not to have them. Post-stroke, decisions were made on her behalf and these were deemed to be in her best interest and so the doctors did what they could to keep her alive and comfortable even if this may not have been her wish. There was on lasting power of attorney in place.
No, you’re not being thick, webpages are so cluttered these days. To join it is here, it is a bit of a faff but you get ten quid after providing a blood test. I haven’t done that yet as there are no clinics in my area doing it yet.
abou a monht befoe an month efor io that I lostd thviiodniion inmy left eyey whilst looking a ao computer screen I thn rhn saw an auraro of rarow-sh aped ped brightly-ocloured lightdhts. i went againan both timse soI i idn’ think anything of it I eishsih i’d consultedthe medics.
Sadly this is so often the case i.e. we just think nothing of it and then we end up paying the price. It’s a shame too many of us have been “conditioned” to think like this. If only we were to say, “this is not right, I should get it checked!”
Thanks caggygill,
Yet another sign of impending stroke. I really think this sis so important. I am pretty busy atm but when things settle down it’s my intention to make contact with SA and ask if there is a way to collate all these pre stroke events and if anyone is doing research into this. I do think ther are warnings and for me at any rate i can only think - if only I had known.as ManjiB said we do have this get on with it attitude but again if these were as well known as FAST maybe so many strokes could be prevented?
Thanks again friend…..
Not sure how helpful this is to add but I just wanted to say I’ve found this thread fascinating.
Leading up to my TIA I experienced many of the incidents noted - dizziness, migraine, stabbing eye pain etc. I had no idea they could be potentially linked and, due to a (well-founded) mistrust of the medical profession I shrugged much of it off as just one of those things.
I wonder how many people are put off seeking care for temporary episodes like these simply because of the gatekeeping involved in NHS care. In hindsight, I feel very lucky. It was a private physiotherapist that told me I needed to get myself down to A&E and not leave until they’d checked me out properly.
Too true sole. And just the thought of sitting in discomfort in A&E for God knows how many hours is enough of a deterrent to do something .
Thanks for sharing your symptoms as I keep saying I think all this is so important and I think (i could be wrong) overlooked by the medical profession.
Thanks again friend….
When I had my stroke I had none of the symptoms that the FAST describes I could do everything that fast says you can’t do. I think they are trying to get this ad stopped now. My symptoms were pins and needles all down the left side of my body but couldn’t walk.
As things stand @Scotia , I feel all this is a bit of a lottery and no one can categorically state what may or may not cause a stroke. Also, it does not help there are all the variants of strokes and the mini-strokes and TIAs etc.
It seems to me, that you could spend a lot of time and effort trying to prevent something that no one really knows how/when it may happen. At least I haven’t seen anything that I can say explains what my risk of having a stroke is and how that might be reduced - there are too many variables or the language/terminology used is beyond my lever of comprehension.
Being a stoic and a believer in “what will be will be” I feel there is nothing for me personally to chase. My GP wants me to go onto statins because my cholesterol is high, but I have read or seen information that suggests people with high cholesterol lead long and healthy lives. Also, people with normal or “safe” levels of cholesterol go on to have strokes.
For now, I will just continue to learn as much as I can and when I feel I understand what my risk is and what my options are (to me a 25% chance of having a stroke in the next 10 years due to high cholesterol is not something I need to worry about and certainly no need to go on to take medication). Mother nature will do what mother nature does.
Wrt to FAST ads being stopped, I am not aware of that, but if they are stopped I am not sure if we’ll be any the better off for it. My guess is that some people may well have been saved by reacting to the FAST guidelines - I know we followed them and we got Mum to hospital within half an hour (999 emergency came and took us) and Mum was given a clot buster. So we could well have benefitted by following the FAST guidelines, but sadly for Mum the clot buster was unable to dissolve the clot and the attack continued to do the damage and Mum ended up needing long term care post-stroke. She even was taken to a specialist at another hospital again due to the quick response, but again, sadly for Mum, even this specialist was unable to remove the clot. So maybe FAST does work but only in certain cases. Certainly in Mum’s case the FAST guideline could well have saved her, but FAST cannot do anything about a clot that is so stubborn it cannot be removed
I’m not sure about the FAST campaign being stopped - it was credited with increasing stroke related 999 calls by 24% and allowing 16% of stroke patients to be seen more quickly (government’s own figures from 2012). So it seems to have been effective and it’s certainly snappy and easy to remember, even if excludes other possible symptoms. The NHS guidance is a bit broader, but I’d say it’s still a bit wishy-washy on all but FAST:
The Act FAST campaign was relaunched in 2024, but I’m increasingly thinking that we need a better “FAST+” campaign to move the dial in the same way FAST did in 2009. The difficult bit is making it as memorable as the original.
I don’t imagine the NHS would extend the acronym to include other symptoms as that would be opening up the floodgates for every person who feels a bit dizzy or has a headache to clog up A&E. I was one of the unfortunates who presented symptoms that were not archetypical and even when wheeled into emergency, a doctor got me performing the Epley maneuver amidst having a stroke. No clot busting drugs for me. I was left to sleep my four strokes off.
Ironically, last year, I thought I presented another stroke like symptom and presented myself to A&E. I waited there for nine hours while on the waiting room television screen, the FAST campaign was intermittently flashing up.
The cost of a CAT scan, apparently costs between £120 - £1000, depending on the complexity and the cost of an MRI can, apparently, cost about £400 per scan. So, if other more generic symptoms were to be included in the campaign it would significantly raise costs. Imagine if an itchy head was a possible pre-stroke symptom, that would really break the NHS.
