Hi @Ktrean60 i have heard of decompensation before. Seems it is quite common when increasing activity levels. Have a look at this link - it covers decompensation
Noswaith dda @Ktrean60, I canāt comment on any acquired conditions post stroke, but for me, three years, and I am still on the stroke train with recurring symptoms, regressions and relapses. The possibility is that increasing your activity levels, your brain has to work harder, suffers fatigue, symptoms regress, and thatās the pattern until the next hurdle overcome.
Thank you @SimonInEdinburgh there does seem to be a pattern and I have started keeping a diary of my activity. I have noticed I struggle with noise and crowded places since my stroke. I am used to being an active person and as I live alone its hard being āgroundedā. Thank you for the information and advice
@Mrs5K thank you, I have seen this information but didnt realise it was common. When it has happened it is exactly like I am having another stroke! It is hard because each time I am discharged from hospital I am told to come in if it happens again only to find it isnt a strokeā¦pretty exhausting.
I wrote in another thread within the last week that Iām experiencing the same symptoms I had prior to my stroke and Iām 3 years passed .
In fact could say that your post helped alay my fears by reminding me that these things happen to us. So thank you for posting
In my first year post stroke I was in a a&e two or three times and they said come back when you need to itās never the wrong thing - I suggest we should take that at face value
I see that many of us believe a stroke can be recovered from like a broken leg and itās not until perhaps a year? Has gone by that we properly understand that it isnāt like that in so many significant ways .
Learning where the trigger points are so that you can evaluate if they are worth passing seems to be part of the new life journey
I think words like recovery do us a miss service because in so many ways post stroke life is an adjustment not a recovery. Of course there is recovery included but itās not 100%. Perhaps one should have a mental picture similar to getting married or starting a family one doesnāt recover from either one adjusts
It is a new book, not mearly a new chapter in the book
$0.02 of bar room philosophy
Ciao
Simon
@SimonInEdinburgh thank you these words have helped alot. Coming back to this forum has been the best thing I could have done for support.
@Ktrean60 iāve had a couple of trips to a&e in similar circumstances especially in the first year. I try & ride it out now but if you are at all concerned you should get checked. Accepting that we have to slow down is so hard isnāt it.
Could I ask what your symptoms were? I get leg weakness and cant stand and my face feels a little numb, like my stroke but not as severe. Other than that I am perfectly lucid and no other problems. It goes away in a few hours. It definitely seems to be linked to how much I do and if I have a bad nights sleep. I think riding it out might be the way to go unless it gets more severe, cant face going to hospital again. 4 hours in an ambulance outside then trolley in middle of a&e obs ward 24 hours.
It is very difficult admitting you need to slow down, Iv probably bought this on myself. It is also ver frightening when it keeps happening.
My symptoms were dizziness, nausea, balance issues, feeling generally very rough. Thatās exactly how my original stroke presented so always worries me. I have permanent leg weakness so not noticed if this gets worse. I do find if iāve overdone it then it brings back all those symptoms. Ladt time I went to A&E I was there 24 hrs after which I said if there were no beds could I go home & rest & come back to a clinic as being in a&e was doing nothing for my symptoms.
If your symptoms get worse when you increase your activity it could just be that. But if youāre worried you should always get checked. You could always try 111 as an alternative to A&E.
Best wishes
Ann
Same then, original stroke symptoms representing, makes me feel better its not just me (although of course I wish it wasnt happening to any of us) Its all pretty exhausting isnt it? I would definitely still go if it was more severe. Thank you for your helpful words.
Its definitely exhausting. Ive just been saying to hubby i wish itād all go away. As Iām sure we all do.
Hope things settle for you soon.
I too have had repeats of some of my original symptoms. In my case loss of balance to the left.
I have never gone to hospital because total rest for several hours has always allowed the symptoms to go away.
Learning to manage my week and been the only way forward for me. I am two and a half years post stroke and still improving slowly but managing my exercise and exposure to noise and larger groups of people is still essential. Every time I get over confident and push myself too hard I suffer extreme tiredness for several days.
I guess we have to accept ourselves as we are now and move forward slowly
Exactly what I am doing, think Im doing ok, up my activity and it happens again. I am a year post stroke and have had three episodes in the last 6 months. Yes I think accepting the new normal is what I have to do and stop thinking I can go back to being the woman I was beforeā¦hard isnt it. Fatigue has been a real problem for me, I guess its a warning we are doing too much. I hope that your recovery continues to improve, thank you for your input, helps that it isnt just me (although I wish it wasnt happening to any of us).
Wishing you a happy and peaceful Christmas.
Itās very hard and like you say it helps to know it isnāt just us.
Happy Christmas and best wishes for your continued recovery in 2024
Wow! Itās like reading my recent history! A couple of rushes to A&E to spend a few delightful hours or a 48 hour stay in an obs ward to be told I wasnāt having another stroke, thankfully. Stroke consultant wasnāt too concerned about any of it but didnāt mention decompensation. But thatās what it is. My right eyebrow crashes down to almost closing the eye when I do too much or havenāt had sufficient rest. Only lasts a few minutes and has been what has helped lead to hospital visits. Itās tricky because we also have to be aware to not just ignore it too as my GP has been at pains to stress but didnāt really understand these repeat symptoms. Donāt you find everything feels a little better if you can name it? thanks for this, I feel better already xx Happy Christmas to you all and thanks for being my sanity and sanctuary this year
Its a very vexed question all this thread.
Balancing unknowns or unknowables in both cause and consequence
Night before last I woke in the middle of the night.
I had a very strange feeling in the index and second finger of my left hand- unaffected side. Unlike anything Iāve ever had. no pins and needles. A cross between being numb and being able to feel in a way that is not right and was totally different to anything in the past.
It went when I moved within a couple of minutes. Is that because I was laying on my arm? If so why have I never experienced this before? Putting pressure on a carotid artery? In a state of half awake half asleep unable to separate imagination from reality?
Add that to the spacey feelings Iāve now had constantly for nearly three weeks . the balance between going to a&e to be told take aspirin on top of your meds for a month. Something is causing Spacey and it came on quite suddenly hasnāt hasnāt left yet
Prospect of an MRI is zero and maybe a CT might be useful but would end in an āoh well, brown stuff happensā. I went to the GP last week - asked for scans on my neck - told youāve had one in the last 2 years letās do bloods instead make an appointment - so thatās 5 weeks given Christmas, and then 10 days to get the results - although when the cat had bloods done the results were back in 2 hours - go figure!Āæ
So all that is left is to live with the anxiety - which has its own physical manifestations which also look like a stroke - BP at the moment 155/ 88 btw
Stroke certainly is the present that keeps on giving.
Iām 37 months post the last confirmed stroke although my MRIs show I have had several that were not recognised by previous GPs
Ciao
Simon
Hi,
I wonder if this may help some of you.
Recently I have tried some classes in Neuromovement which I have found tone beneficial both for mental and physical well-being.If anyone is interested I can put them in touch with a qualified teacher for zoom lessons at very reasonable rates
Iād never heard of it before your mention above - so I would be interested to hear more
Do you have an affiliation? Have you direct experience?
It doesnāt have a Wikipedia page although there is one on something that seems parallel Feldenkrais Method - Wikipedia
There are a number of advertisements for it as a service under the name Anat Baniel - and a few YouTube [edit Iāll look for a decent YouTube that was just an advert]
Iād want reassurance because of what my searches have pulled up before paying & I would pay for something that was a valuable intervention
Now to watch the YouTubeā¦ [Edit: Watched it - Iāll search for more informativeā¦]
Ciao
Simon
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