The stroke I never knew I had?

November 2022. I was moving depot with the lads at work. I turned to Toby, said, “this is heavy,” and the next thing I knew… I was somewhere else.

Literally.

I’d “teleported” to the new depot — standing in the boardroom, gripping the top of a filing cabinet. Toby was holding me. Adam was asking if I was alright. I had no idea what had just happened. I felt numb, confused, like someone had hit the mute button on reality. But I said I was fine. Danny drove me home.

On the way, my face went numb. Then freezing cold. About an hour later, my head started pounding. I got home, dazed, took some painkillers and went to sleep.

Next morning, I felt great, mornings always do that. I turned to my wife and saw the fear in her eyes. “Are you okay?” she asked.

“Yeah, I feel good,” I said. Then she touched my cheek.

“I think we need to go to the hospital.”

I thought something was wrong with her. “Why, what’s up? Are you alright?”

Then I tried to move, and it hit me. My right arm wasn’t working. Jerky. Shaking. Useless. She showed me my face in the mirror. The right side wasn’t moving. My cheek was heavy, pulling my eye and mouth down, I could not lift them even when smiling.

“Let’s go to the hospital,” I said.

At A&E, they did an MRI. Turns out I’d had a stroke. Not that day, sometime before. What I’d experienced the day before was a “migraine.” That’s what they said anyway. But they kept me in for a week. Then they sent me home.

No follow-up, No stroke team, No support, Just a sick note.

They put me on statins, clopidogrel, and lansoprazole. That was it. I lasted a week on the statins, they wiped me out. Zero energy. My doctor thought they were the problem, so we switched to another type. They were better, sort of, I still believe it was Post Stroke Fatigue. But I was still stuck, waiting to hear from the hospital about getting cleared to go back to work.

Thing is, my GP couldn’t sign me off, it had to come from the hospital. Except the hospital didn’t see me. No face-to-face. Just a phone call, sometime late January or early February 2023. That’s when I was declared “fit to return to work.” Luckily I had a great and supportive work partner “The Man” . He was an unbelievable support despite him having no understanding, he was there and always ready to help me with anything I needed.

But I wasn’t ready.

That wasn’t me anymore. That was me pretending to be the old me, which was impossible. What I now know is that I was living with post-stroke fatigue, tremors, spasms, emotional lability, cognitive overload, stress responses firing off randomly, and full-blown brain farts. Sleep became the most important thing in my life… and I had no idea.

I didn’t know this was medical. I thought I was just unfit. Weak. So I started walking, thinking I had to rebuild. I didn’t realise rest was actually my best friend. But walking became my second best. It helped, with the tremors, the emotions, and that weird internal pressure I couldn’t name.

But then the crying started. No trigger. I’d be fine, even happy, and suddenly I’d be in tears. Or I’d feel terrified for no reason. Trapped. Vulnerable, or euphoric. Or totally detached. These emotions would just arrive like uninvited guests, one after another.

I didn’t understand it. I just knew something had changed and no one had warned me what this part of stroke recovery would feel like.

December 2023 – Stop.

I had been telling myself I was managing. Truth is, I was spiraling. As long as today wasn’t worse than yesterday, that was the rule I lived by. But what I was really doing was surviving a brutal, undulating rollercoaster of fatigue I couldn’t step off.

My task that day was simple: get A and put it in B, then get C and put it in D.

But I didn’t. I got A and put it in B. Then I got C… and put it in B again.

Even writing that now makes me cry uncontrollably.

To the company, it was a small cost. A financial error. To me, it was everything. I watched myself do something I would never choose to do, and I was powerless to stop it. That broke something inside me. My confidence. My belief in who I am.

This was my mistake. But the real wound was deeper: questions became hard to answer, recall vanished, and every query triggered an emotional response before I could compute the logic. I didn’t see the stroke. I didn’t want to. I thought I had prostate cancer. Early-onset dementia. I begged my doctor to check for both.

But I was still asking, and answering, the wrong questions. I was still in denial.

Another admission I need to make, about answering the wrong questions.

Because my face had returned. Because I could walk. Because my right side seemed okay, when rested. And because I’m driven, stubborn, and determined, I didn’t answer honestly when my GP asked, “What’s wrong?”

I normalized the strange movements, the pain, the tremors. I ignored the extra strain on my left side. My left arm and leg had taken over the heavy lifting, and that overcompensation caused its own pain. My answer was vague: “All over.”

So, my GP referred me to physiotherapy. That’s where I met a brilliant man, the first person who really looked at me. After assessing me (when I was rested), he said the words I didn’t expect but needed:
“This is likely neurological. Possibly stroke-related.”

He referred me to a neurologist. But before that appointment even arrived, everything broke.

I was at work, shaking for two days straight. My right shoulder was in agony, the tremors had returned full force, my leg wouldn’t settle. My emotions were like a live wire. I snapped. I did something I never do:
I shouted. I lost control and yelled at a medical professional on the phone. I demanded action. Right there. Right then.

That moment, that breakdown, was the beginning of my recovery.

Within a week, SuperNat (SN) appeared. She was calm. Competent. Reassuring. She explained everything: Post-stroke fatigue. Tremors. Pain. Emotional lability. Cognitive overload. Autonomic stress responses. Even the toilet urgency and the swallowing problems I couldn’t explain. She saw it all, and named it.
She referred me for speech therapy, fatigue management, and psychology.

And that’s where I met CatMouse (CM). In just six hours, this woman gave me something I hadn’t had since the stroke: control. She taught me how to feel without drowning. How to respond instead of reacting. The release I experienced working with her was euphoric. Like coming up for air after being underwater for well over a year. I felt cured.

I was walking five miles a day. Work felt good. My emotions still flared, but I had tools now. The crying stopped. The rollercoaster paused. But the truth is, there’s no cure. My old self isn’t coming back. And that becomes clear when the right (or wrong) set of circumstances align: the stress hits, the emotions explode, and I pop like a bubble. Everything comes at once, and I can’t remember what I said or did, even when someone shows me a video, I see and hear me but have no memory of it. Is that failure, that’s the new reality, that’s the new me.

So, back on the rollercoaster I go. I hope to see CM soon. I keep trying to remember what she did, what she said, but I can’t. So for now, I cling on. I cling to the fear that makes me question every decision. To the speech that can’t express what I mean, the frustration. To the tremors that fire pain through the right of my body, without warning.

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@AndMe hi & welcome to the community. That is some story but most of what you describe is “normal” after a stroke only we are never told this. Most of what I learnt I got from this forum.

I am glad you are now getting the help you need. Better late than never as they say.

Remember be kind to yourself, rest when you need to. Even years down the line you can be hit by fatigue & a flare up.of symptoms.

As you say things are not the same. they might never be again but that doesn’t mean they can’t be good in a different way.

Best wishes

Ann

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Welcome to the community. A lot of what you’ve described sounds similar to what many of us have experienced. I’m glad you’ve found your way on to the forum. You’ll find you’re not alone here, lots of us have been through similar. Have a search around and if you have any questions feel free to comment or post. There’s a wealth of knowledge here and you’ll find out more here than you will from any medics!

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I’ve come up for air, and I’ve also experienced drowning, post stroke. My flesh and bones are, seemingly, okay but my brain continues to wrestle with itself. A wound we can see makes sense, a wound we can’t see doesn’t register. It is truly a bind of the brave not the blasé.

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Hi @AndMe

Welcome to the community, I’m sorry to hear about your stroke and the difficulties you have faced. You’ll find lots of help here from people who have been through similar experiences.

The psychological impact of a stroke can be very tough, we have some information on our website about emotions which may be helpful for you to have a read of.

I hope you’ll find this community helpful for your recovery, if you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

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@AndMe Thank you so much for posting this. You’ve perfectly articulated everything I have experienced since my Stroke in February - including my growing suspicion I had a TIA in August of last year which saw my emotional regulation go off balance, now I think back.

After my big stroke, I mentioned to the doctor at the hospital that I had had a ‘kaleidoscope’ at the corner of my eyes a few months earlier like the one I experienced when I had my stroke, but like you he said it was a migraine and you can have one without necessarily getting a headache.

This is a lovely group of people, I’m sure you’ll find lots of posts when you’re looking for inspiration to keep going, like I have. :heart:

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Welcome to the community @AndMe - that is a great post from you :slight_smile:

I hope you find what you are looking for here from the many wonderful members. I am pretty sure your post will help others to understand or come to terms with the situation they find themselves in.

Wishing you all the best on the road to recovery.

Namaste|
:pray:

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Thanks all for the messages, it is so good to meet you all, finally.

My wife if the greatest person I have ever met but talking to her about my stroke is like trying to explain a book to her, that I never want her to read!

I got emotional towards the end of the above and clicked send before I could delete it, when I grab myself together, I will finish it properly.

Thanks again,
Andy.

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Andy - it may help her if she was to join this forum.
You can also share any of the information on here with her.
The good thing about this forum is that it is for stroke survivors and carers of stroke survivors and as such the language is “lay” language which hopefully means everyone should be able to understand it.

Also, you could get 10 people responding on the same thing, but likely they will word it slightly different ways but still say the same thing.

Anyway, it’s good you have found this community and hopefully it will help to make things easier for you and your wonderful wife.

Wishing you both all the best.

:pray:

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@AndMe

sometimes the best thing is to pour it all out.

For me it helps join up the bits that seem broken and finds the bits that seem to be lost.

We’ve all been those places too. So no worries, this forum is a great place to say it like it is.

If you discover the meaning of it all and next week’s lottery numbers write it up here at least one or two of us might find it useful.

Forgive my flippancy, I’ll plead stroke, your honour.

keep on keepin on
:writing_hand: :grinning: :+1:

(On occasions I’ve used the forum in the same way.
It is still there and valuable to me yet.)

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Andy - It seems some, though not all, stroke survivors will randomly burst into tears or burst out laughing. I don’t think it is known why this happens, but just that it does.

I remember one particular lady was often bursting into tears and she always said she did not know why.

It happens :slight_smile:

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Hi Andy @AndMe, nice to hear that you’re doing okay and being as positive as you can be under the circumstances. I thin I’ve put my own story on here, but basically waaay back in 1977 I had a car crash, hit lamppost, NDE that went into the News of The World, and problems ever since with severe headaches, eye problems, toilet problems, panic/anxiety. I’ve used tapes and CD’s to stop the anxiety for over 40 years, not knowing why I behaved like I did, but I had severe headaches in 2017 and they told me then I had an ‘old stroke’ which was down to the car crash and then I saw a program on TV by Headway.org and that led me to investigate further. I ended up seeing specialist who said it was poss. PTSD from the horrific accident as well as everything else I had. This week, while I was looking form some passwords for my computer, I found an old folder that has about 40 certificates in plastic wallets. These have all the qualifications I’ve taken since the crash, from teaching quals to assessing and surveying, computing and all these jobs I actually did, then started to forget what I was on about, get anxiety/panic and leave and start another job! It was a shock to see them as obviously I’d forgotten all about them, but it does show what we all have to contend with - and our partners have to put up with it as well. We are a great bunch on here and support each other and that’s a great strength that helps us all;-) Take care, Bert aka John

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