I was diagnosed as having had two strokes between two scans. The first scan was clear in 2016 bur the second scan in August 2024 showed two strokes had occurred. Thinking back I deduced the second stroke was June/July 2024 and this was the more serious of the two. I attended a stroke clinic and was then fitted with a heart monitor which did not show any problems. I feel very isolated but have now enrolled at a local support group starting next Wednesday. What is really concerning me at present is that suddenly I canât carry out simple tasks on my iPad and yet up until two weeks ago these were not a problem. In fact I struggled to put this story on line. I couldnât work out how to start. What also annoys me is when people say how well I am doing. My reply to this is, Yes but you are not in my head. I am also extremely tired and tend to sleep a lot. To me I am not progressing, but I am managing to walk a bit better without reaching out for support all the time but have to use a stick.
Hi @Rachel-Anne
Hello and welcome.
Apparently Iâve had (multiple) silent strokes too as well as one that hospitalised me - I expect other here have too.
There are lots in the general population - I blame promotion of FAST and not a focus on how to spot TIAs
If youâve noticed a deterioration in capability then you could be suffering a âdecompensationâ or another neuro-event; thereâs no way we can say which - go see the GP for a referral. Unless you get an MRI I guess youâll be left with inconclusive statements
Take your meds, know & manage risk factors then âdont worry about it but live lifeâ (easy to say but after youâve managed risk there is nothing you can do except reduce stress levels caused by anxiety of something now uncontrollable
Sleep is IMPORTANT take all that comes your way
Yes people say âyou look wellâ - they mean well. You can reply âthank you I am but Iâm permantley damaged, parts of my brain irreversibly suffocated - learning to compensate will be life longâ
If you canât see your progress then keep a diary. Compare entries 6/12wks or more apart. Iâm now seeing progress regularly but Iâm 4yrs on and I work constantly at incorporating my affected side into my daily activities - itâs been a slog & will be for years more
We got together and wrote the welcome post for the things we often repeat - you might find it helpful
Good luck on your journey
Caio
Simon
This is terrible, but can you have brain bleed strokes without ever knowing it? My mother had a moderate hemorrhagic stroke, but it is possible she had a mini or micro brain bleeds before or after her big event?
I know that TIAâs have to do with isch1emic strokes (blood clots), but brain bleed strokes are less talked about.
We still donât know why she had a brain bleed. They say her very low platelet count made the bleed worse, but it didnât cause the stroke. She didnât even really have blood pressure. Itâs all a mystery to us.
Could she have had mini-strokes without our ever knowing it? Are there brain bleed TIAâs? I never get definite answers on anything.
Thank you for your response, it did put my mind at rest. Sometimes I do too much physically and get tired. I have to learn to pace myself but having always kept my days full with hobbies such as gardening, sewing and general handicrafts I find it difficult. It also frustrates me that I cannot do my housework to my satisfaction. I keep everything tidy and dust but itâs the things which are out of reach that annoy me. This seems very petty compared to other peoples issues and should feel more gratitude for my strokes not being more severe. Thanks again for your kind reply
Hi @Rachel-Anne
Perhaps the hardest thing for me -and I think I read a hint of it in your post? - is Iâve now had to adjust my standards.
Iâve erected a tarpaulin in the garden because I too like gardening. Itâs now hard to move my shredder around and I need weather protection for it if I am leaving it out.
I used poles and cord to secure a dry area. In the past I would have tied interesting knots using cord with maximum economy. Often those knots would take me a minute instead of 10 seconds to tie a simple reef/ square knot. Last week the simple reef was taking me 20 minutes (!! The frustration of a half-tied knot slipping and releasing the tension and having to start over time and time again )
I simply had to accept 20 minutes for a shit job where once would have been 1 minute for elegance. instead of economy I had metres of cord lying idle because I could not get the knot and the arrangements where I wanted them.
My wife helped for the last hour of what would it be in a half hour job PS[1]
At the end I was left with the satisfaction of achievement of job done despite all the adversities - and that is the relocation of my satisfactions
Is this a parallel for your dust on high?
Itâs not the dust or the lost cord or the removal of the satisfaction in using a pleasing knot. Itâs acceptance that standards lived by for a life of decades have been changed without my consultation or agreement - the adjustment has been in the source of satisfaction. Iâm still busy and still achieving just the arena and the metric are changed
That same frustration occurs in the implacability of the administration of this platform
There is no pettiness. We all have metrics/ measures standards against which we used to perform and a new standard. But we also have damaged brains that mean our emotional responses and our resilience may also be changed - donât confuse lack of physical challenge with pettiness because itâs attitude and emotions and adjustments or the quality of life that matters and itâs entirely a mental health need that we all share and define in different ways
3¢
Simon
Post Stroke âŠď¸
Thank you Simon your reply is spot on. Following your advice in earlier i have an appointment with a GP this afternoon. I only got the appointment by telling the surgery that I was taking advice from this forum. Under normal circumstances we can only make appointments a week in advance. What I donât understand is that since being discharged by my consultant at the local hospital I get no follow up so am delighted I have found this forum. I agree that too much emphasis is put on FAST. When I lost my balance back in the summer I had no idea I was having a stroke. When I had regained my balance I went home and prepared lunch and didnât think any more of it. Even now, if I get wobbly I donât know if I should be worried. Thanks again. I hope down the line I will be able to help people in the same way as you are doing.
Hi @Rachel-Anne
Iâm glad I or we have managed to be of some help and I would be delighted if you paid it forwards later.
I suspect your GP wonât know enough to be directly helpful and I suspect any consultant will be wrapped up in a world with tram lines that avoid the messy reality of acknowledging their knowledge and investigative powers are still below the level needed to bring the sort of clarity we expect of all things in this century. The dissonance leads to absolute statements where probabilities are uncertainties are more suited
There are a very small number of us who are the flywheel of this community that give it momentum and enhance its viable - We get no thanks except by the odd reply such as yours; Indeed I think the opposite is true
We are in the throws of forming a Stroke Improvement Group and all you need to do too record sympathy with the aims or membership is to include âSIGâ or write it out in full as the last line of your posts here and Facebook etc.
I hope you wonât mind me being a slightly amused thatâs a conversation with me open the door to your GP There is so much irony in that!!
Caio
Simon
@Rachel-Anne hi & welcome to the community. Sorry to hear of your strokes. Although probably hard to believe silent strokes can happen. We probably think at the time âoh I feel a bit off or weirdâ then just move on.
If your last, more serious, event was June/July this year then you are still very early on in the journey back to ânormalityâ. You will get very tired & need to rest a lot. This is very normal and your brain needs that rest to start itâs repair work. You may find your worsening symptoms are because youâre over doing it but if they are worrying you you should seek medical advice. I see you have a GP appointment so hopefully they can reassure you.
As Simon mentions adjusting to new capability levels post stroke is hard but essential. I am like you & get frustrated that I canât do what I used to. I still get frustrated 3 years on but I have lowered my expectations now. If something doesnât get done iâll get round to it eventually or I just leave it. I also take help where it is offeredâŚaccept whatever help you can even if you feel it unneccesary. It all helps the fatigue management.
Best wishes
Ann
Hello Rachel and welcome along.
Hi Rachel-Anne
Fatigue and concentration are aspects that you need to learn to work around by taking rest when you are tired and doing things in short sessions when you feel able to do them.
I am 14 years down the road and much improved but still have to pace myself.
Good luck on the journey
Tony
Hi Tony thanks for your reply. I did type an answer earlier and saved it to send later and now canât find it. The story of my life at present. I canât find my way around this community chat as in the last three or four weeks I find everything difficult to work out. This frustrates me as I didnât have problems before this. Simon suggests it is deconcentration as a res.ult of being tired. This forum is the only support I have apart from visiting the GP and this is not as easy as it used to be.
I can manage emails and simple texts but have to check them before pushing the button as sometimes they donât make sense.
I didnât realise how complex a stroke can be until I joined this group and although I find it very helpful itâs a bit scary. I just thought I would learn to walk an d that would be it. Silly me!
Thanks again.
Hi @Rachel-Anne
If your wrote a draft here itâs saved under your profile
Locating Draft Posts (click to expand)
Swipe down if you donât see your avatar (the R in a circle)
Then click the R to show the menu and select your Profile - the bottom option
Then you should see Drafts
If it was something else thatâs confusing then if you can tell us what Iâm sure people will offer help
Caio
Simon
SIG