My experience - I feel like I've taken a step backwards

I’m 59 and had a stroke on 25th January 2023, I was on a cruise at the time and spent a week in hospital in the Canary Islands. It was a mild stroke and I could still walk and talk but fatigue was an issue. When I returned to the UK I then had another stroke and spent a night in the local hospital. My strokes were in the cerebellum. The consultant thinks I also had an earlier ‘silent stroke’. After my discharge from hospital in the UK my confidence was really low, anxiety levels high and I was very wobbly when I walked. I’ve made quite a good recovery so far but fatigue is still an issue. After a busy week (for the new me), we decided to visit a local agricultural show on Sunday, but after about 90 minutes I felt really tired and my eyes were straining. We sat down and had a cup of tea and I felt a bit better but we came home. Since then Ive been really anxious again and the heavy/fuzzy feeling in my head has returned. I’ve spoken to my GP today and they’ve done a blood test. I feel like I’ve taken a real step back with my recovery. My subconscious self nags at me that I might have had another stroke but my logical self tells me that is silly as I didn’t have any symptoms. My GP didn’t have a major concern. I"ve read on this forum that symptoms returning for a while is quite common. If anyone has any advice or support to help manage how I feel, I’d really appreciate any help. Sorry for the really long post.


@Pinch welcome to the forum although sorry you’ve had cause to join.

You may well have overdone it on Sunday & that could explain your current symptoms. I had rhe fuzzy head for months & whilst it isn’t there constantly now when i have over done it it comes back to remind me.

Try & keep your anxiety levels under control as that won’t help.

You are only 6 months in to your recovery & it often takes a lot longer than that & fatigue can still creep up & bite you for a long time. I’m 19 months on & still get bad fatigue although it’s different for everyone.

Wishing you all the best.


Thank you for the replies and advice. I am trying to pace myself but last week seemed quite good and I think I was on a roll - but have been brought back down to earth with a bump. They haven’t found out why I had strokes, my BP is fine, I’m not overweight, I had a reasonably healthy diet and have never smoked. A 2 week ECG monitor found no issue with my heart. I’m now on Clopidogrel and Avorstatin. The anxiety is really difficult at the moment.

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@Pinch stroke recovery is often 1 step forward 2 steps back & i guess we need to avoid the temptation to overdo it on the days when we feel good. I think we’ve all experienced the consequences of doing that.

Not sure if you’ve read it but have a look at SA leaflet on fatigue.

This may help you understand it a bit more.


Hi Pinch–My stroke was 5 years ago, and I still get the heavy/fuzzy head feeling --especially when I overdo or am tired. Remember, even though you can’t see it, your brain is doing double duty, working hard to “keep things going” and heal damaged tissue as well as build new nerve connections. It gets tired. I wouldn’t feel worried or anxious. I’d just be patient and rest more. A 90 minute agriculatural show would still tire me out. Such it can be with a stroke. :smirk: :heart:Jeanne

Thank you for all the information. I have got the Stroke Association leaflet about fatigue, and I called the helpline yesterday and the person I spoke to was really supportive. I’ve also benefited from the calls from the ‘Here for You’ service which have now finished, they were so useful. Saying all that, I still feel a bit alone in all this and I think that’s because of the gaps in support from the NHS that I feel. I saw the consultant at the beginning of May but won’t see them again until September which seems ages. My son has ulcerative colitis and he has a nurse he can call at the hospital but they don’t offer that for stroke patients. I feel slightly wobbly when I walk again, but I think I have a bit of muscle pain in my left leg and my wife says I walk fine. My mind is just working overtime worrying about everything. I’m so pleased to have joined this group, the posts I have read have been really useful and everyone is so supportive.


I am now on the same medication. I similarly had none of the obvious risk factors for having a stroke, but mine was caused by endocarditis (an infection of the heart valves) and one of them threw off a clot that caused the stroke. I too was on an ECG trace, but it took an echocardiogram. to discover what actually caused the stroke. But I had also been running a high temperature for around 24 hours prior to the stroke.

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Thank you for all the support. To be honest, Im struggling most with anxiety at the moment. It had got a lot better, but after Sunday it seems to be worse than ever. Im really struggling with the thought that I may have another stroke or might even have had one on Sunday. However it has reassured me a bit that these feelings are not unusual, Im just struggling to get past what seems to be a setback.

@Pinch after my stroke 2+1/2 years ago i spent months thinking will i have another one, I’ve given up on worrying about that. just take each day as it comes, as many will tell you, every stroke is different be patient and make your gp your new best friend, mine is fantastic, call the helpline @AshleyTH has the number it’s good to talk

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Thanks for tagging @chris67

@Pinch you can reach our Stroke Helpline on 0303 3033 100 or email

They really are fantastic even if all you want to do is just talk to them about what you’re going through. They may have additional resources to suggest for you as well.

I would also recommend getting in touch with our Here For You team. Being able to talk with someone who has similar experiences may help you with some of your anxiety.

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Your journey sounds a bit like mine which was May '21. Cerebellar, no lifestyle issues, lots of tests, eventually found mine most likely due to having a hole in the heart (patent foramen ovale in medical speak) that’s been sorted and recovery has been very good.

The stroke team in the hospital were great, the therapy team explained what had happened and the likely effects mentally. Anxiety about further strokes is very normal, I’ve always had a very positive outlook but we always think about it. I was told to try and NOT wrap myself in cotton wool ‘just in case’ it might happen again, we could spend years doing that and nothing happen, in the mean time life has moved on.

Sounds like your doing just fine, you’ll find your limits. Listen to your body, rest up when you need to, do what you can when you can. My new motto is “Be Kind to Yourself” we’re all different, to a greater or lesser extent, post-stroke and it can be difficult to understand that but you’ll find here we all on the same page, and happy to share our experiences. This forum has been priceless to me over the last 2 years. :+1:


Unfortunately Im still really struggling with bad anxiety and the fuzzy feeling in my head. I called 111 today and the nurse who called me back thinks I may have PTSD, and was fairly sure I haven’t had another stroke. I told her that my subconscious voice really wants me to have another scan of my brain, but she didn’t think that was necessary, she’s told me to see my GP tomorrow and go through how Im feeling both physically and emotionally and find out what support I can access.

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@Pinch sorry you’re struggling with anxiety. That won’t be helping with the fuzzy head. Your GP will be able to check you over & hopefully help settle your fears a little. Anxiety about having another stroke is very common but does ease over time.

I had a really bad fuzzy head for many months post stroke. I thought it was never going to lift but it did. I still get it but it’s not there all the time now. Yours should get easier in time but it could take longer than you want it to.

Hope you get some reassurance from your GP tomorrow.

Best wishes


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Hi @Pinch
Welcome to the forum and so sorry you had to join us

You may not be aware - there’s a new stroke survivors online cafe this morning (that’s Thursday 6th) at 10:30 on
Hossted by Louise and next a Thursday it’s up 1:00 run by me - (there are places just to chat freeform rather like this forum does in text but interactive via zoom) and so on through the year

You’ve made a lot of reference to anxiety. it’s completely understandable that you’d have it. Possibly the stroke messed with your emotions but even without that having such a life changing thawwp out of left field is naturally going to make you anxious it will happen again. First have faith that your meds are now dealing with a lot of that risk

The anxiety won’t help! my even cause it to some degree :frowning:
I’m 2 and 1/2 years on and I have a oh my god I think I’m having another stroke feeling about once a week in a bad quarter - some months a better than others. the combination of factors is so person dependant and there is so much complexity from the combination of light sound relationships food drink medication emotional state that establishing true cause and effect for things may actually be impossible - but it would be significantly helped if you kept a diary and then look back for the proceeding 3 days each time you have a wobble - the discipline work for some but not for others

There are quite a few anxiety management techniques You can find them on YouTube You can find them in mobile phone apps.
My nuero psychologist or neuro something else gave me a link to one that otherwise saved about £2 a month - but it was just a download from the play store. I can’t remember the name of it but I did find a link to the recommended ones I don’t know how free of commercial interest the recommendations are but it is Apps

Personally I find them a bit sandals and crystals but I did take from them the implementation of a virtuous circle rather than a vicious circle. The anxiety causes physical sensations that fuel the anxiety. For me knowing that was enough to break the circle. Rarely do I have to resort to breathing exercises (which I just can’t do on as commonly describe I just can’t breathe that slowly!)

You might find this picture useful
Anxiety post

If you use the spyglass icon at the top of the my stroke guide forum page and search for anxiety you’ll find lots of posts about it


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Thank you to everyone. The posts on the forum have been so supportive and helpful. I think Im starting to feel a little less anxious but still worried about the fuzzy head feeling and also Ive had a tingling feeling in my left thumb ever since the second stroke and I feel sure it has got a little worse. The trouble is Im focusing so much on every symptom and maybe finding it difficult to determine what is real and what is in my subconscious. Ive done all I can for now, Ive spoken with the Stroke Association Helpline and my local contact, Ive had fantastic support on here and on a Zoom session this morning, Ive called 111, been to see my GP, had blood tests and blood pressure checked and everyone tells me that my current feelings are not unusual and I haven’t had another stroke. Ive also registered for a quicker counselling service after referral by my GP whilst I wait for Psychology sessions (Im already on that waiting list). My only option left is a trip to A&E, so Ill see how I feel over the next couple of days.


@Pinch good to hear you are feeling a little less anxious. It should kerp improving as time moves on & you realise you’ve managed to do something & it hasn’t caused a stroke.

I do think we become hyper vigilant after a stroke & focus on sumptoms that we probably wpuld have ignored pre stroke. I know I certainly notice every little thing these days.

As I type this i have my fuzzy head going on. I’ve had a busy day & it’s bought it on full pelt. You may find that’s what’s causing yours to be worse along with your anxiety.

Sounds like you’ve been checked over well. Hopefully the counselling will come thrpugh soon & I’m sure that’ll help you loads.

My very best wishes.



Nigel I’m glad the zoom cafe this morning helped.

There are no guarantees but you are doing the right things :slight_smile:

C u next week 1pm Thu too?

Best wishes


I just thought Id post an update. This morning I had a telephone appointment with the Psychology Department, a ‘catch up’ while Im still on the waiting list for full sessions. I went through my symptoms both physical and mental and they thought I probably had mild anxiety and depression, arranged another call for Tuesday and emailed me some information sheets. After about an hour they called back and advised that after a discussion, they thought it might be worth me going to A&E - but stressed that it wasn’t an instruction and not to worry. So, I went to A&E and was assessed and had a brain scan, saw a consultant and he told me there were no signs of a further stroke. Everything was fine apart from my blood pressure was a little high - probably understandably. They said I had done the right thing by going there. So Im now hoping the anxiety starts to lift a bit. I need to try and get better at managing it and also understanding that while my brain recovers Im likely to get these symptoms. Thank you again to everyone for the support and advice.



Glad you’ve had confirmation. Hope its beginning to getting easier

Note your own words, it’s likely you’ll have reoccurance of the physical worries (with out without real evidence). Don’t automatically let that transplate to the emotional that then drive circle back around

Best wishes


@Pinch glad you’ve been checked over. Hopefully that’ll ease your worries a bit. It is all about managing the effects & pacing yourself even when you feel fine. It takes time to work out your limits & you’ll get it wrong many times i’m sure.

I keep a diary so I can track back on what might have triggered the symptoms so you can adjust next time.

Take care.