33m, recent ischaemic stroke

Hello. I’m 33 years old, male, fit and healthy (very healthy, competing in a combat sport etc). I had what was diagnosed as a left sided brain stem ischemic stroke at the start of September.

My symptoms were dizziness/vertigo, and at the time, somewhat slurred speech and right sided weakness. (I actually slept on it… naively I thought I had a migraine or something, blissfully unaware of how horrific stroke was and how fragile we are).
However the speech cleared within a few days, and right sided issues resolved after about a week. Now my right arm/leg can sometimes feel ‘lazy’ but they do everything they’re meant to (luckily!). Vertigo/dizziness mostly resolved in a few days (it was rough at the start) then I had a small amount that took basically until yesterday to resolve, and at that it’s still kinda there just so minimal. Sort of like being on a rocking boat when I go from seated to standing or vice versa!!
I don’t really have fatigue. I go to bed around 10pm every night as usual and while I force myself to lie down midday, I cannot sleep!!

I immediately quit the sport I was involved in and thought I’d lost guitar playing ability… until my right arm worked properly again. Socially it’s been tough as I lost a community and a way to get out of the house a few nights a week.

Ive since been back to hospital twice with what I now know is something called decompensation… I’d never heard of this before. Seems US folk on another forum are not too familiar either for whatever reason?!
I now deal with severe anxiety and fear of another. I got so lucky with my physical symptoms, reading/seeing those less fortunate has actually made me feel worse. So I’ve been referred for counselling to try and cope.

I know how lucky I am but it doesn’t stop the fear/anxiety unfortunately.

I don’t have a concrete diagnosis. I got every test imaginable (I was kept in for 5 days) and the bubble test showed possibility of a small PFO but no one seemed too bothered about it. I have a heart monitor implanted in my chest now to check for AFIB over the next few years.
I’d have loved to been told I had a PFO and they could close it and I’d move on with my life. As for now I’m left wondering and taking 75mg of clopidogrel every day.

I haven’t had a follow up with my consultant yet either to ask about that. All my bloods were healthy, the 72hr tape I had was negative etc.

Initially I was told it was small, then another doctor said ‘it’s quite large’ during one of my ‘decompensation’ spells which sent my anxiety through the roof :melting_face:

I didn’t drink much before, like 1-2 pints a week, but weirdly enough I really miss this?! I think it was the social aspect. Zero % beer just doesn’t hit the spot sadly lol. Perhaps after a while I’ll be able to enjoy an occasional Friday evening pint again. At the minute I have way too much fear.

Anyway that’s my rant/intro!

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Hi @matt_d13

Hello and welcome but as always sorry you have had reason to join us.

I guess you have previously read posts as a visitor because as a logged in user the software says you’ve only read two. If you read the welcome post there’s a lot of stuff that we used to say individually to everyone that should make you aware that you are not alone :slight_smile: tell you a little of the possible journey to come, would have introduced ideas of two steps forwards one step backwards (Although whether it actually says that these are decompensations I don’t recall :slight_smile: )

It’s very understandable that you’re off the beer and onto the anxiety.
The anxiety fades - But never leaves and you will have all sorts of rattles clinks and shakes in the future that reinvoke it :frowning:

September to now says that some of the later onset consequences may start to arrive between now and the new year - see welcome (or indeed anytime in the decades to come :frowning: ) - at least awareness allows you to be less stressed should they happen.

I could give you a long spiel on the psychology of risk perception but instead I’ll say “take your meds accept what’s happened live the best life you can from this point forwards knowing that you are more mortal and fragile then you appreciate it before”. This latter part equates to reduce your stress levels.

Many folk find that if they can accept then they live a life with more compassion and patience for others too - we need that globally & locally :frowning:

Not having been given a reason and medical staff saying contradictory things is normal. It merely represents the state of the art - as in mostly a black art of insufficient medical understanding.

Clopidogrel (Which should come with lansoprazole to protect your stomach) and a statin and possibly blood pressure meds are a standard cocktail that most folk get.

You might find the low and no post gives you some territory to explore?

Stick around and you’ll get to know folk there aren’t very many who are the core of this community, there are a lot of passes by on the same path though

Caio
Simon

Thanks Simon, I had been lurking before joining when I was in a state of disbelief and unwilling to accept the facts!!

The welcome post was very helpful. 2 forward 1 back has definitely been experienced… I was warned by nurses about this and nothing could have prepared me for what it felt like. From going from that minor ‘rocking boat’ dizziness to full blown room spinning.

I was on the stomach lining meds in the beginning when I had aspirin and clopidogrel however after a few weeks I was taken off those and just kept on clopidogrel. I take nothing else as my BP, cholesterol etc was fine.

My manager actually had a stroke two months before me, he was 37 and unfortunately developed epilepsy. So a new fear has been unlocked in this ‘journey’

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Hi @matt_d13

Your story resonates with me, but my circumstances were different. I was 59 when I had 2 strokes just over 18 months ago, recently retired and very active. The physical symptoms improved relatively quickly but I have been left with anxiety. They found no reason for my strokes, which is difficult to handle - as you say, if they had found something it could hopefully have been sorted out. Simon is right, the fear of a repeat stroke does fade over time but has never fully left me. The caution about drinking alcohol also fades, and hopefully you’ll soon be enjoying a social drink once again. I was also obsessed with my diet, particularly salt and fat (even though my blood pressure and weight are fine). It’s a tough journey but the right support helps you along the way. Don’t worry about reaching out for support ’ it’s out there but sometimes you have to search for it.

All the Best

Nigel

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Hi @matt_d13

Welcome to the community, I’m sorry to hear about your stroke.

I hope you’ll find this community helpful for your recovery, there are so many members here with so much knowledge. I’m sure more people will be along to offer you some support.

Having a stroke is a lot to take in so it’s understandable that you had some disbelief in the beginning. Anxiety is common after having a stroke, you may find this webpage helpful, it talks about the emotional changes after stroke and there is a specific section about anxiety.

Wishing you well on your recovery journey, if you need anything whilst you’re using the Online Community please feel free to tag me using the @ symbol.

Anna

Wow
:slight_smile:

hello stranger

We have missed your presence on the Thursday calls but been massively happy to think that you’re out and about enjoying PS[1] life :slight_smile:

It’s good to hear your reinforcement of the likely steps in one’s journey from experience - that’s the pay-forward that is needed if the decline in this forum is to be halted :frowning:

It would be good to catch up with your news some time (maybe I should just ask Kieran :slight_smile: - all the best
:wave:


  1. Post Stroke ↩︎

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@SimonInEdinburgh

Hi Simon

I will drop in on the Thursday call from time to time, it’s always good to catch up.

I’m doing my best to enjoy life, fatigue is quite a big issue for me but I do my best to pace myself - but the fatigue is so frustrating.

My Psychology sessions have finished now (by mutual agreement), I still have health anxiety (I feel like a total hypochondriac), the travel anxiety is improving - small steps and having techniques to help with it have been key for me.

You’re right, the lived experience really helps with the journey. I’m sure that @matt_d13 will continue to improve over time using the support on this forum and from other sources. It’s been very valuable for me. Unfortunately that ‘strokey’ feeling is always there, fortunately now more often at the back of my mind. All this takes time.

Cheers

Nigel

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I prefer to say “2 steps forward, 1 step sideways”

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Hi @matt_d13 and welcome to the community. Sorry to hear of your stroke but sounds like you are progressing well.

Sept isn’t that long ago & is very early in stroke recovery terms so the anxiety feelings are very normal. They generally ease in time as you realise you’re going about your day & nothing bad has happened.

Not everyone gets an answer to what caused their stroke & this can make the worry worse as you don’t know if what you are / aren’t doing might make things worse. But life is for living so as long as you’re reducing your risk factors as best you can there is nothing more you can do.

Your social life will also come back as your confidence grows i’m sure.

Best wishes

Ann

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Thanks all for the comments, appreciate the kind words.

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Hi Matt,
Welcome aboard, I had a TIA in July and although I felt that I had recovered quite quickly, fatigue has been a massive issue for me recently and I’ve found that just lately I get really angry, very quickly and totally irrationally, at the slightest thing, I never had anxiety ( but wife does now!) but I have become a bit too careful with my diet, you are in the right place here, plenty of really good advice, no matter how trivial or strange your query seems

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Hi
I can kind of find your post quite relatable as I had a TIA aged 35. They then diagnosed a large PFO for which I was listed for surgery to get fixed. Unfortunately the waiting list was too long for me because after a year of waiting I had a big stroke even though I was on Warfarin and Clopidogel.
I’m partially recovered but have lost a lot of connections with people I previously knew who are in the same age range, because who wants to hang out with someone who goes to bed at 8am and had little energy after a morning at work and finds crowds a bit unsettling.
I don’t want to put a downer on things for you because you get to realise who your real friends are and this community is great for rants!
you will get better, I promise, even if it doesn’t feel like it now. You get to appreciate the small accomplishments, like when you can get back to the beer which will taste great :blush:

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Sorry to hear that. How long ago was it?

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That’s ok, we’re all survivors here!
My stoke was just over a year ago. I realised after I’d posted that my story may have made you more anxious, so I apologise if that’s the case! Your story just resonated and I wanted to reach out to tell you that it will be alright in the end :blush:

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Hi,thankyou.I had a stroke last Sunday still in Hospital in Manila.your story is similar to me,although I am 64,started rehab today,still a bit unstable and left arm seems to be weak.This was so left field and scary

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Hi @Chiz
Hello but sorry you have had reason to join

Yep “left field” is the right (!?) sentiment

Probably the best place for you to start is

You’ll have a TON more sense making to do as time plays out - we can advise, stroke is for the long haul :frowning:

Caio
Simon
SIG

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Sorry to hear that! Hopefully you have a speedy recovery. You’ll feel a lot better when you get home to your own comfort, I know I did.

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Hi @Chiz just popping by to welcome you to the community. Hope you are getting on ok & that you are soon able to get back home.

Best wishes

Ann

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@Chiz
Where do you stay?

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Thankyou guys it’s comforting to talk to you,has anyone experienced the need to pee more regularly,especially at night? I can only think it’s the medication I am on.People here in Manila have been so caring.We are 8 hours ahead of you. X

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