Im looking for help in understanding my stroke. Things getting lots and lots worse in four months since I had my stroke. Don’t feel very supported by hospital or GP who seem very dismissive every time I try and speak to them about my worsening state. Im looking to speak to others who like me have gotten progressively worse since their stroke. On leaving hospital I seemed to get a bit better each day but within a few weeks and now four months later and in last 10days I cant even do light housework and leaving the house is now impossible. Im extremely frightened about my constant chest pains breathlessness fatigue and feeling drugged/drunk if Im up and about for more than 30mins a time. Am I going mad?
This is the first time Ive reached out to others because I find it all too upsetting to speak about so very grateful for opportunity to write instead of speaking.
Welcome Maggers and thanks for reaching out. Stroke recovery is slow and full of ups and downs. Low moods are common. One problem is that we often compare ourselves to how we were before our strokes rather than looking at our progress since. You are in the very early days of recovery and emotions are much more heightened.
However, it is also true that support varies across health authorities and gps and hospitals are under great pressure. The cost of living crisis is also taking its toll. Are some of your physical symptoms an outcome of your frustration and anxiety? Take opportunities to rest and relax as well as trying to find those small steps to improvement that will make you feel better. All the best.
@Maggers welcome but sorry to hear you’ve had a stroke. Stroke recovery can be a bit 1 step forward 2 steps back at times. Did you have any exercises to do after your stroke? Are you still doing them? If not that can make you go backwards a bit.
You are still very early days and in the 1st six months lots of rest is required. Not resting can make you feel dreadful. I know when i get fatigue it xan knock me off my feet for a few days but I also feel sick & dizzy with it.
Your chest pains could be being caused by anxiety but I’m surprised the Drs aren’t checking to make sure it’s not something else causing them.
You’re definitely not going mad. Try and find ways to relax & limit your activity level to that which is right for you at this stage in your recovery. At 4 months i definitely could do 30 mins activity.
Try keeping a diary so you can see if there is anything specific triggering your symptoms.
I think you should persevere with the GP. They should be able to do some simple checks to help identify the cause of your chest pains.
Wishing you all the best.
Ann
Hi @Maggers sorry to hear you’re feeling worse, when I think back to the few months after my stroke I slept so much I was trying to do housework but was totally exhausted after it, it’s early days your body’s been through a heck of a lot and it takes time for everything to settle. It’s a juggling game of exercise and rest and finding what works for you. You’ll find lots of good advice on here, I learned more here than I did from health professionals. I hope things start to improve for you soon.
Thanks for reaching out Loshy really appreciated. My stroke was a lacunar infarct so called mild I was told and which I was relieved about. Think I had survivors guilt having been subjected to the horrors of A&E and stroke ward for three days. National scandal which people don’t fully understand until they have to access it.
I have the usual meds aspirin and a statin couldn’t take the clopidogrel due to extreme side effects.
I didn’t expect things to get as bad as they have and only after reading from these pages I kind of understand that I may be experiencing the norm. What is confusing for me is when the hospital and GPs seem to avoid talking about worsening symptoms as if its so unbelievable given that the tests so far state no problems. Due to your experience you were right though I think I have been suffering from panic attacks as the response of the GP practice when I try to get an appointment is ring for an ambulance or book an appointment for a month hence with a doctor. Now after waiting over a month I’m due to see the doctor Friday when Im hopeful he will refer me to a cardiologist. Will let you know…meanwhile did your symptoms get worse over time. A month ago i was experiencing the one step forward two steps back recover but now its just worse and worse each day with not much respite but thank god for Netflix 
Thanks John. Those chest pain checks were done eventually when no more that odd twinge month after leaving hospital. Results were fine. don’t really want to moan about things because in comparison with most stroke victims I know I have got off lightly. Just trying to find out if there are others like me who were told by medical services I was better and discharged by stroke unit without being seen and I believed them yet here I am few months later practically bed bound.
Thanks Anne . I will let you know what GP says about worsening chest pains. Ive kept a diary since hospital days Your right it helps but last few weeks especially its been very depressing to keep entering.
I have git a gratitude diary as well That makes better reading based on how brilliant my husband has been and how great Netflix is 
Hi Mahoney. Is this not the Stroke Association ?
Same here Sharon .
Learnt more from looking at this site than any medical services.
Maggers. Please remember that stroke is a brain injury. You cannot get ‘better’ in the sense of being cured. You can only improve and keep on trying. Good luck.
Shwmae @Maggers, sorry to hear of your concerns, but first six months after stroke, there are no textbook examples of progress, nor indeed many years after stroke. Sleep and rest is the key now, with gentle exercises on the worst symptoms. You may feel all sorts of uncomfortable and unnerving sensations throughout this time. I had dyspnoea (laboured breathing) for about six months, it was ghastly, and was also on and off with its severity. I used to walk around the house huffing and puffing without needing to do much. Controlled breathing exercises worked for me but it took time. For most of us, everything after stroke takes time. Even two years on, I have weeks where my symptoms are acute and I can’t function like I would. Some days, I can regress back to how I was soon after discharge, but I know I have cleared a few hurdles since then.
Keep positive, and keep anxiety at bay. Anxiety has a physical and mental response, it can exacerbate everything.
Hi Maggers welcome to the group i echo what everyone says. Keep going with the gp give yourself a break physically and mentally. speak with your stroke consultant for advice. check in here with us stroke survivors, we are always here to chat and do what we can.
@Maggers I feel for you, keep yourself on top of it. Life can be bearable.
As a free alternative to Netflix have you looked at All 4, loads of streaming content.
We (me and the Mrs) are binge watching ‘The Handmaids Tale’ right from the beginning at this time. Full of adverts, but there is a pay for version which is free of those ads.
All the best, Maggers and make good use of this Forum, you are very welcome here, lots of advice and experience on tap, listening ears in a safe place, a joke and some fun too. Just leave out personal details as anyone can view the content here.
Keep on keepin’ on,
It’s sxxt for months maybe year before you start getting better keep laughing 
bless you
@sosgez welcome but sorry you’ve been struck too.
You make some good suggestions there. I use those techniques too.
Best wishes.
Waited over month for this appointment. My practise now has about double staff they had before pandemic but refuse to let you see same GP twice have to wait months if you want continuity. Other than that advice is to ring for an ambulance.
Don’t hold out much hope for next appointment with best and longest serving GP in practise have a feeling I will be referred to cardiologist where waiting list phenomenal according to NHS waiting list. Meanwhile chest pain breathlessness and inability to get out of bed before afternoon getting worse. So glad for people on here letting me know they have similar symptoms. Definitely helps.
Thanks John your comment has certainly put some perspective on my stroke. It has really helped me. Im not frightened of not being cured just wondering why the little progress I was making in last three months has gone and condition has got worse than I ever expected given the slight but steady progress i was making. This forum has been most helpful to me as hospital and doctors seem to dismiss whats happening.
Thanks Mahoney. I will look more closely to other things on site Im sure they will be of help. My problem is at moment Im too emotional to speak to people. NHS tick boxing indifference has really taken its toll on my well being. Its taken me weeks to approach people on this forum And because of people like yourself it has been the best thing for me.
Jane Im so grateful for your reply. I thought I was the only one to get worse. Your stroke nurse sounds great I hope I find someone like her but Ive just found out that the hospital have discharged me because heart monitor I had month ago show no problems (pre chest pain currently having) No official test result or contact from them just something stated in passing from GP surgery.
Rups your reply has had a profound effect on me . Im so grateful you have taken the time to reach out. Your description of how things have been for you mirror mine so I now feel as if Im not going mad or being silly or imagining things. Your right my mental health has taken a battering and its that I have to look out for as well. Given your kind words I will look out for that side of things with the help of this forum as well