39 and first stroke

On 9th may I had my first stoke my nhiss score was 18 I was treated with thrombolosis which really was amazing I got my speech back and use in my left arm I can walk with a limp but my left leg is painful as is my left hand tonight is my first night at home and I’m petrified of going to sleep incase it happens again every twitch or pain and I think is this another. I kind of feel like the hospital jist sent me off with a load of tablets and a list of further tests they want completing. I cry at absolutely everything and at the same time I’m so angry this has happened to me I don’t feel like me any more I’m getting confused and muddled up and my leg aches so much I just don’t know what I’m supposed to do or how I’m supposed to move forward

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@annie39 Hi Annie. Well you’ve just made a big step forward by posting on this forum. You will settle, if my own experience is anything to go by. It’s takes a little patience and support that you’ll get from others in this site. It takes courage to open up :slightly_smiling_face:. I had paramedics in about 2 hrs ago checking me over. Excuse me if I go now. You’ll see some of my story on @EmeraldEyes.
Wish you well and hope we meet again @IanM

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Hi @annie39 welcome to the forum and its a very active forum for a bunch of stroke survivors I can tell you :wink: :smile:
I’m so sorry to hear you’ve had to join our club though, but you’ve found the right place for all comfort, advice and support you need.

You have just gone through a life/death experience so naturally you are in shock and emotionally distraught and it comes on in waves! We have all been where you are now, afraid to go sleep for fear of another stroke and I can assure you it will get better! You are not alone! :people_hugging:

I cried the whole first night in hospital after my stroke. It’s good to cry anyway as it relieves a lot of pressure on the brain, giving it a better chance heal. And you were treated with thrombolysis, that is to break up blood clots and prevent new clots from forming. So now with a healthy diet, plenty of exercise and keeping up with your medications your risk of another is greatly reduced. But recovery is a marathon not a race; it’s going to take longer than 6 weeks or 6 months. Your brain is in healing mode, so keep life “simple stupid”, don’t even try to multitask and rest frequently. Basically give in to whatever your brain needs, it will let you know. The first 6 months after a stroke are the most important for recovery and when you will see the most improvement. After that it slows down but doesn’t stop.

Some of us put together this Welcome post what we wish we’d known at the start which you might find useful reading through.

I never experienced pain though there are several members on here who have. No doubt you will hear from them over the coming days :slightly_smiling_face: And if @Bobbi is pulling another all-nighter he will might come on soon with some more good sound advice and get you laughing, if you are still awake :wink:

Try to relax now and keep talk on here, tomorrow is a new day :people_hugging:

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Hello & welcome @annie39

I see you started a couple of topics and that you have had some good advice from EE in them :slight_smile:

Anxiety is a common impact of the stroke. It’s often a main topic on our Thursday zoom chats - Online (zoom) cafe Thursdays Are you on meds ? If you are and you don’t have any lifestyle red flags then there is really nothing you can do too change your risk profile except lack of sleep will be slowing down your recovery and removing the abilities you want for building your post stroke capabilities - that journey is already started and will be with you lifelong now the only thing that’s variable is the speed that you progress that in part is based on the quality of your sleep nutrition hydration etc

There is lots here and elsewhere on anxiety management, sleep management, mindfulness, and the related topics you can find with the magnifying glass at the top of the page to search.

The tests you referred to will presumably be to determine if you have a hole in the heart (a 25% probability!), arterial fibrillation, and various other circulatory and blood chemistry investigations.

Caio
Simon

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Hi thank you for replying yesterday I’m in medication I have Asprin for the next three weeks Clopidogrel atorvastatin and lansoprazole I’m quite healthy but I do smoke so I really need to stop with that I’ve been referred to the smoking sensation team for help my discharge says
CTH + MRA both showed 2 micro AVM catheter requested and referred to neurovascular MDT for same

And
ECHO performed as part of stroke protocol raised suspicion of PFO bubble echo requested and to be FU in stroke FU clinic. If confirms PFO for referral to heart brain MDT

I have no idea what any of that means I have been told in hospital but my memory is very foggy and things are a bit blurry on what’s happened this bast 6 days

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Creoso, the fear of another stroke haunts many a survivor after the fact. The brain being a sentient organism, quite rightly, will guard itself against the threat of another strike, and is sure to jump at shadows. At this stage, being that you are so recently discharged, I would suggest not thinking too much about going forward, but allowing yourself to exist in the moment and managing anxiety. This forum is a good space to unravel some of the feelings you might be having, and is also a good spot for pitching medical questions which, although, can’t be addressed from a professional standpoint, can be discussed so that you have a better idea of what to ask and query when you talk to others. Anxiety absorbs a lot of energy, and the brain can become anxious about being anxious, especially when it doesn’t have the hwyl to brush that anxiety aside.

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Hi and welcome!! I had my stroke January 23 and well remember feeling like you do. I cant really add anything to what has been said. Just be kind to yourself and take it day by day or hour by hour
Best wishes Anne

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Hi Annie, sorry to hear of your stroke. A big welcome to this forum. We are a merry band of stroke survivors and their carers and families. This forum has been a godsend to me since my hemorrhagic stroke 7 years ago and is still my Go To place when I need some information or advice. We have all suffered very different types of stroke and are on very different roads to recovery, so there will always be someone here who can understand what you are going through.

Feel free to jump on here whenever you have any questions and you are looking for some advice and information.

I wish you well in your recovery and look forward to hearing from you.

Regards Sue

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Hi @annie39 I completely understand how you felt at the start of this as that how I felt at Christmas when I had mine and got out. Loads of us here and @SimonInEdinburgh and @EmeraldEyes have been 2 of my biggest sources of support on here.

Welcome to the club we get no joining badge for and none of us ever wanted to be part of

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CTH + MRA = Your scans
Avm = Arteriovenous malformations (a tangle of arteries and veins without any capillaries) & catheter is an insert to investigate/ fix see here
MDT = multi-disciplinary team
Pfo = Patent foramen ovale = hole in the heart (as suggested by echocardiogram bubble test )
FU = follow up

That suggests that there was two different suspicions about why you had a neurological event the AVM and the PFO and both

On your meds front. Lanzarote :slight_smile: is a stomach protector mainly because of the clopidogrel which is an antiplatelet (sort of like a blood thinner), aspirin is used as a blood thinner and atruvastatin is anti-cholesterol

So you have medication that is a knee-jerk reaction to things that maybe you’re risk factors like the PFO which can cause a clot in your bloodstream to get to your brain and the AVM malformation that can cause a bleed.

Lots of people live with PFOs and AVMs undiagnosed. You at least have a multi disciplinary teams returns now aware of your investigation needs and prophylactic medication in the meantime :slight_smile:

Funny how in this century medical teams have not worked out that are very significant part of their role is to communicate with people who don’t use specialist vocabulary or acronyms :frowning:

an inability to explain in such a role, to a non-expert is a sign of a lack of competence :frowning:

Caio
Simon

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It can also be laziness/too time consuming or arrogance :smirk:

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@EmeraldEyes @annie39 good advice :slightly_smiling_face:.@IanM

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Yes I agree :+1:

It’s still displaying behaviours that are the antithesis of a key capability & therefore an incompetence - what ever the underlying emotional drivers of that avoidable behaviour :frowning:

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Hi @annie39 I too had my stroke beginning of May, and received Thrombolysis for Cerebral Infarction/Posterior ??
It is only since being sent home that certain things are kicking in, I think when I was in hospital I was on auto-pilot or something.
I had to find this group, as it felt like I was alone with my thoughts ie PANIC! where is my phone…as I dialled the ambulance, and need the security at the moment of having my phone next to me, where as previously I was awful at even keeping it charged up.
It appears it is down to the Stroke Community to guide us along the pathway to recovery.

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Hi @Dido14 how are you doing since been home? I’m pretty much like you I need my phone with me all time and panic when I’m alone I have been better the past few days tho so hopefully things are starting to get easier. It’s my leg and forearm that hurt the most trying to rest as much as I can but having a 4 year old it isn’t easy especially when I’m on my own although my adult children have been godsends.

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I have been ok (ish). My husband was at home the 1st week, and one of my sons came round.
I have found it daunting, as when I left hospital, they were like you did well, you scored well on the tests, but to be honest I think I was just in shock mode. It is only when I got home that symptoms started really appearing. Numb fingers, not knowing if left foot on floor, knee locking then giving way, but worst was a severe allergic reaction to asprin!!! Shoulders OMG!
This week I have been on my own at home, hubby working away, although son doesn’t live with me, he is also away in India working, and my youngest lives in Scotland. Been a bit restless but tried to keep myself occupied, and take time out to relax.
I cannot imagine trying to look after a 4yo with the fatigue…i was tired just having youngest granddaughter over at the weekend for couple of hours, and she is 10.
New symptoms I am not obviously going to be ringing drs with every little thing that crops up, but writing things down in a diary. It’s like i passed the vision test at the hospital but know my left eye is not right, as I tried to cross the road and it was odd - do I just wait for my routine eyetest, or tell the drs - no idea.
I think of each day as a step, and try to accomplish just one small thing, even planting a few flowers. I look at bigger stuff I had planned to be doing and think…it can wait. To Plant a Garden is to believe in tomorrow x

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@Dido14 yeah I was same when I got home pretty much like u I was like on a high cos drs saying how well I had done and how much the medication had worked. But I notice my forearm throbs and I get muddled up easily with what I’m saying my leg throbs all the time but I try to do little bits each day and rest as much as possible slow and steady wins the race as they say. I have an appointment with the stroke team beginning of July over the phone and also GP rang today to do me an appointment about my discharge again that’s over the phone at end of month .

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Were you not given any contact details for your community stroke team?
Yours may be called something different, but as an example, this is ours:


Possibly they will be in touch over the coming weeks, but if you find the number for your local team or phone the stroke unit at the hospital you were admitted, you can discuss all these issues directly rather than going through your gp.

I like that quote :slight_smile:
I’m putting bedding plants in at the moment :slight_smile:

:slight_smile:

There’s a lot of learning required to embrace post stroke life and we all have to discover it for ourselves :frowning: - reading posts on here can speed that process up loads - use the :mag: icon to search helps.

Caio
Simon

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