Worse since stroke

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.

4 Likes

@Maggers welcome to our forum and sorry you had your stroke.

You’re pretty much early days still. Are you making sure you rest so you can recover?

Lots of us SS haven’t had very good medical support I’m definitely one of those. I’m finding in time I have learnt to listen to my body. Fatigue is the worst as you can do to much one day and be wiped out fir next few days.

I know it’s really hard to take on board as it’s a big shock to the system. Someone will give you advice from their experiences on this forum.

What sort of stroke did you have? I take it you have your medication now?

Did you have a heart monitor to wear, you might be having panic attacks too, though I’m not medically trained I am speaking from experience.

I wish you well and keep going kind regards Loraine

3 Likes

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

1 Like

@Maggers welcome, though sorry you’ve had a stroke.

Stroke recovery can be a marathon rather than a sprint, there’s so much to manage at first, fatigue, emotions, physical and cognitive symptoms, anxiety to name a few. Of course it doesn’t help if you’re feeling unsupported and dismissed by medical professionals.

Have you contacted the Stroke Association? They can be very supportive and understand the varying symptoms SS have to deal with.

Keep contacting your GP if your symptoms continue as they should check you over to confirm you don’t have heart issues.

Best wishes

1 Like

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.

2 Likes

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 :face_holding_back_tears:

2 Likes

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 :smiling_face_with_three_hearts:

1 Like

Hi Mahoney. Is this not the Stroke Association ?:grimacing:

Same here Sharon .:slightly_smiling_face:Learnt more from looking at this site than any medical services.

@Maggers great you have an appointment on Friday.
Write a list of questions as you are bound to forget.
Tell them your symptoms and ask to be referred for counselling it done me the world of good talking about it.

Lacuna infarct where? Mine was cerebella left back lacuna infarct. It doesn’t matter what size you still had a stroke. I think some of these doctors are a disgrace.

I’m not physically disabled so I always feel guilty but it’s had such a knock on effect with me and it’s frightening especially when you don’t get correct support.

This forum is full of experienced SS you will read information and think “oh that’s a bit like me”.

I rang the stroke association and they rang me once a week for support as my emotions were everywhere. Then as I settled down I read all the threads on here and started to feel better. Try breathing exercises or meditation for about 2 minutes morning and evening.

Good luck hope you get your answers Friday best wishes Loraine :hugs:

Email for a contact to get in touch with you . Just ask for telephone support.
Mystroke@stroke.org.uk

2 Likes

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.

Hi @Maggers yes, this forum is part of the Stroke Association but there is also helpline, info here and articles and blogs on the website here

1 Like

Hi, I’m agreeing with everything everyone has said. This is just to let you know, I recovered so quickly after my stroke ( or as I thought ) only to be hit down about 4 months later, it was like I had gone backwards and not forwards… Horrendous treatment from the NHS apart from one Stoke Doctor, who actually said, “she didn’t like it when people recovered so quickly, as it usually caught up with them later” and she was 100% right. I am now 2 years post stroke, and managing much better, still have problems, but am better at coping with them now. I too suffered awful anxiety and have managed to cope with that now as well.
I wish you luck in your recovery , you will get there, just don’t give up!
Thinking of you, Jane.

1 Like

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.

4 Likes

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,
:smiley: :+1:

1 Like

@sosgez welcome to our forum but like all of us sorry you had a strike.

I agree with everything you say and it’s great advice.

Keep going kind regards loraine.

@Bobbi I’m up to new series 5 love watching it but some of it is a bit strung out now.

Blessed day everybody :rofl::rofl::rofl:

It’s sxxt for months maybe year before you start getting better keep laughing :rofl::joy::rofl: bless you