Waiting for next steps - PFO, strokes and scary!

Hi again All,

I posted early July and was immediately enveloped by information, support and understanding by this amazing community.
These things are not always readily available in the world.
I am so bored of trying to explain fatigue, fuzzy head, aching limbs, nausea, etc, etc. and what it feels like because I “look well” gggrrrrrrrr!
I had a stoke in March diagnosed by MRI, not given much info by neurologist apart from possible cause, high blood pressure. I have white coat syndrome but not high blood pressure. I was lucky I didn’t need a hospital stay. GP has been excellent. Other medics joined a few dots but I have learned the most on here!
I am sure, as is my GP, that I had a TIA a couple of weeks ago, although A&E said probably migraine. I have never had a migraine like that, I.e eyebrow at 45 degree angle and a numb cheek!
Post this episode, what was improving fatigue, has whacked me round the head again and it’s practically the same as early days including the blessed headaches.
In the interim I had a bubble echocardiogram which showed up a PFO. Cardio doctor doing the test said that would account for the “myriad of strokes showing on my MRI” which I said was the first I had heard or that!!!
So now, I feel awful and I am waiting for referral to stroke team and cardio consultant. Feeling a little more terrified because what was a random MCA stroke has now turned into one in a series.
I have no idea what that means apart from: Is this normal ? Has this not been mentioned so as not to frighten me?
My husband is understandably telling me not to worry, you’re on clopidogrel, etc. but it’s tricky not to wonder if the next TIA or stroke is waiting to pop out of that hole in my heart, yikes!!!
I feel like this post has been mostly rant, if so, sorry but non stroke warriors do not really understand, try as they might and have lives to get on with. I wouldn’t have understood 5 months ago either.

Thank you fellow warriors! Any thought are welcome x
Tracy

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Listen to you’re Hubby and stop stressing what will be will be.
@Tracy1 you’ve got this we all fight another day :clap:t2:
stay safe and positive

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Hi Tracy1 it’s so hard not to worry when we have been through what we have, but your emotions and the worry will get better with time. Your post just reminded me of what I said most of my life which was I don’t have high blood pressure I have white coat syndrome, it turns out I did have very high blood pressure 220 over something when admitted to hospital, not saying it’s the same for you but wish I had gone on BP medication sooner. I’m sure things will get better for you and the worry can be tricky, but will get better with time take care and all the best x🙂

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@Tracy1 receiving that info must have come as a bit of a shock. I guess what i’d say is you’ve had all these episodes & didn’t realise. The only thing that’s changed (if i’ve understood correctly) is you now know about them.

You are on medication now & have been referred re your PFO so they’re on to getting it sorted for you although you’ll probably have to wait a little while for the op.

Try not to worry, easy for me to say i know, but worry & stress will make things worse. As long as you are taking your meds, living as healthily as you can you can’t do any more.

Sending my best wishes & a hug to you. You’ve got this. You’re stronger than you think.

Ann xxx :hugs::hugs:

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I feel exactly like you do. First I thought I just had the one big hemorrhagic stroke, then I come to find out that I had MANY “silent”, or “lucanar” strokes due to cerebral small vessel disease. It is terrifying but you are doing the right things.

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Hi @Tracy1 , your experience seems to be exactly the same as mine! I had my stroke in February this year and I’m still waiting to find out if they’ll close my PFO. It’s such a scary experience but I’m getting through the anxiety with yoga and being out in nature. Stay as healthy as you can and try not to let the stress get to you. Everything will be okay xx

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Thanks for your reply Joanne. Another yogi! I’ve tried to do a little yoga most days but nowhere near where I was pre stroke of course! I was just enjoying yoga so much and then March 20th 2023 happened. I’d be in bed for a week if I tried half an hour of yoga! But it’s good to stretch muscles and deeply breathe at least. I miss long early morning dog walks in the woods. I’m sure that is healing in itself but ditto for the fatigue effect which is just rubbish :rage:
After reading responses to my mini moan, I’m trying to be positive and also thankful that I didn’t end up with much worse stroke effects like many others have to live with and fight. I’m in awe of their fortitude.
I hope you hear soon from the medics who I’m sure would fix us all tomorrow if they had the time and resources!
Take care and :pray:t3: namaste :blush:

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Oh how lovely to meet a fellow yogi! I can’t do as much as I did pre-stroke either, my balance is affected and I get really wobbly but I still practice every day as best I can. I walked the dog in the woods before stroke too! I have a beautiful, naughty and precious basset Hound who got me through my darkest days with her cuddles. Wishing you health and peace. Namaste :pray: :blush:

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@joannecreeden1
It’s my understanding that PFOs are assessed these days as the to whether or not they need closing or whether medication on its own is sufficient

Just saying in case a lies your concerns a little .
I must add the caveat I’m not medically trained

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Hi, I had the long awaited consultant appointment post tests on heart and I will be having the PFO closure. Apparently there is an expert PFO closer in our health trust. So, I’m following orders not to “push any cars” or “lift any weights”, put strain on my heart or do anything like flying that might start a blood clot! My husband has wrapped me back up in cotton wool until heart procedure :rofl:
I was lucky enough to see my MRI scan and the “myriad of strokes” all over the place. It was quite a sobering moment. But it is a typical event and a blood clot that exploded on impact with my brain. That’s probably why the dear old brain didn’t suffer from one big nasty clot damage and was able to compensate. And maybe why the fatigue is so persistent? So we wait for the cardiologist appointment and keep going!!

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Sounds like you’ve got some happy news even though it wouldn’t be every circumstances .

Enjoy the cotton while it lasts :slight_smile:

Simon

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@Tracy1 hope you don’t have to wait too long for the PFO closure. I’m sure you’ll be able yo resist pushing cars until it is done :grin:

Make the most of being wrapped in cotton wool. He’ll probably want the fabour repaid when you’ve come out the other side :grin: xx

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