Hello
I have decided to come back to this forum after a few months away in the hope someone can give advice or may have experienced something similar. My original stroke was exactly a year ago and came out of the blue (as they usually do). I had all the usual heart tests and was discharged very quickly over the phone in February. I moved house in March to a different area and tried to ‘get on with my life’. I have suffered badly from fatigue and occasionally felt off balance. In July I had what I thought was another stroke, same symptoms as my first… ambulance, hospital ct/mri stroke ward. They said I hadnt had another stroke (relief) but a decompensation of my original stroke. It happened again in Aug then a couple of weeks ago, exactly the same and with no further stroke diagnosis I have been referred to neurology. It happens everytime I try to increase my activity levels, I am aware of the extreme fatigue and feeling off balance in the run up to the events. After the last episode I feel like I did after my original stroke. I am at a loss to understand what is happening, maybe Im overdoing it and havent allowed sufficient time to recover from my original stroke. My gp visits have been fruitless as on paper I look very healthy, bloods etc. Has anyone else experienced anything similar or know anything about this and can advise. I feel exhausted, worried and dont know how to move forward.
Hi @Ktrean60
Decompensation seems to me one of those words the medical profession put on simple things to make them more complicated than they need to be. Of course that’s probably just my ignorance
There are an awful lot of topics and posts on here about people Who have fatigue and related challenges when they push the boundaries .
Apart from the advice that says “don’t overdo it” other common advice is to keep a diary of your nutrition, hydration, sleep, activity (including people, lights, noise, physical and cognitive effort, attempts at multitasking and complex activities), anything out to the ordinary, stress, other illnesses, medication, BP, If your diabetic then your sugars, exercise…
And a diary of your decompensations or fatigue, aches, pains, vertigo, spactity etc etc
Then compare the two - probably with a window of 3 or 4 days but longer maybe required, maybe weeks…
This might reveal some meaningful patterns .
Your GP should also be the gateway to further services in support of your needs - & more knowledgeable than me
The magnifying glass is at the top of the page and it is a great way to find posts that contain the contributed wisdom of all the other people who have shared their experiences during their recovery journey. There’s a rich vein of information to be read - It has to be found first - via the magnifying 
glass
Ciao
Simon
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 can’t 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 that’s 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 ‘grounded’. 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 stroke…pretty exhausting.
I wrote in another thread within the last week that I’m experiencing the same symptoms I had prior to my stroke and I’m 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 it’s 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 it’s not until perhaps a year? Has gone by that we properly understand that it isn’t 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 it’s not 100%. Perhaps one should have a mental picture similar to getting married or starting a family one doesn’t 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 i’ve 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 isn’t 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. That’s 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 i’ve 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 you’re 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 it’d all go away. As I’m 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 before…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.
It’s very hard and like you say it helps to know it isn’t just us.
Happy Christmas and best wishes for your continued recovery in 2024
Wow! It’s 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 wasn’t having another stroke, thankfully. Stroke consultant wasn’t too concerned about any of it but didn’t mention decompensation. But that’s what it is. My right eyebrow crashes down to almost closing the eye when I do too much or haven’t had sufficient rest. Only lasts a few minutes and has been what has helped lead to hospital visits. It’s tricky because we also have to be aware to not just ignore it too as my GP has been at pains to stress but didn’t really understand these repeat symptoms. Don’t 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 I’ve 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 I’ve 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 hasn’t hasn’t left yet
Prospect of an MRI is zero and maybe a CT might be useful but would end in an “oh well, brown stuff happens”. I went to the GP last week - asked for scans on my neck - told you’ve had one in the last 2 years let’s do bloods instead make an appointment - so that’s 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!¿
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.
I’m 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