I didnt even know I'd had a stroke... The Unknown, Fear,Questions

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Hi All,

Im Sally 54 years old married and have 5 grandchildren. And im scared

Ive just joint this group for support. Ive recently had a cerebellar stroke, also known as a cerebellar infarct, Stroke. The scarest bit for me is i didnt even know id had it.

I went to the stroke clinic on 30th July 2024, had the assessments completed and the confirmed i was very lucky and i still have a clot in my brain!!. Previously in April i thought what i thought was veritigo, i couldnt even walk up the stairs and they said this was when i probably had the stroke.

I feeling scared, selfish and generally in shock greatly. Im finding myself crying, not being able to sleep. I dont really know how im supposed to be feeling.
Then other days i dont even believe its happened to me.

My husband is being kind and im being angry back. When he says he knows how im feeling? How can he, im scared the clot my burst again or move and next time im not so fortunate.

I am finding myself not wanting to go to bed, or go to sleep. At work it is only my immediate boss that knows, and she said ive got to be referrred to occupational health.

Im not surenif i should have someone with me when i got out?

I get a headache and now this is this it?
Has anyone else experienced anything like this? Is it normal?

Regards Sally

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Hello Sally, now you’ve found us you’ll find we are all here to answer your questions and to give you some reassurance. It’s normal to have anxiety when a stroke or any unexpected illness happens, but I want to reassure you that these feelings of anger, emotions and not being able to sleep happen to most of us but they will settle in time. I had a stroke 6 years ago and with the help of medication for blood pressure and medication at night to help with sleep I feel pretty good most of the time. It’s not such a bad idea to have someone with you when you go out to begin with. My husband comes to all my doctors appointments with me as I still have short term memory issues sometimes, so he can fill in any blanks I may have.
I’m sure others will be in touch , we are a friendly bunch and you can ask us anything you’re worrying about, someone will know the answer.
Ann

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Sorry to hear that, Sally

I don’t understand the term cellerbore stroke, so I’m guessing you mean a cerebral stroke or possibly a cerebellum stroke? Either way, it’s not great news, but everyone here has had a stroke or a TIA (mini stroke) so your feelings are well understood here.

What I would recommend IS going to bed, winding down, fixing an exact bed time, and doing everything you can to get a decent night of sleep. This is when your brain heels itself, and missing out on sleep is the biggest mistake you could make. Take some serotonin, CBD, maybe magnesium maybe chamomile tea to wind down, find a routine and stick to it. Sleep is your friend and it will help all round, including going easy on your husband.

Good luck, do ask for help, take care, Roland

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Hi Sally @BLUEBELL1

Welcome to the forum although I’m sorry you had a reason to join us.

As Pando and MumofTwo have said what you are experiencing is within what we know to be normal.

If you had a ischemic stroke (Not a hemorrhagic bleed) then the likelihood is you were put on blood thinners or antiplatelet medication such as clopidogrel. It’s likely since April that the clot has been reabsorbed (It’s aneurysms that burst not clots) as well as the dead tissue cleaned up by normal healing processes.

If you have also been scanned for a hole in the heart ( PFO about 20% of the population has one), and arterial fibrillation, and high blood pressure and cholesterol and the other common causes then it’s likely that your risk factors are all low although low risk does not mean no risk. You have a likelihood of being hit by lightning or a number 28 bus and I suspect you don’t worry about them. We all worry about reoccurrencs of things disproportionately and not about the things we’ve never heard of or never experienced even if they are more likely

Anxiety and emotional challenges are also common. Being angry or snippy or otherwise acting in a way you don’t recognise is possibly accountable by your emotional and chemical changes caused by the stroke and your medications. PTSD isn’t uncommon and denial is part of that.

Your recovery will be aided by you getting through the grief cycle of Shock Anger Resistance to achieve Acceptance and then Healing - in total SARAH. Awareness will help you understand but the process is difficult to speed up unnaturally.

There is a lot of good advice in the

Why are you scared to go to sleep? Was your stroke in your sleep? One of mine was. When the stroke hits has nothing to do with sleeping but the rate at which you recover has everything to do with sleeping. You’re much much better off having plenty of sleep. Lack of sleep increases stress increases risk.

Since you mentioned being at work and only one person knows I take it you have not suffered any of this physical or cognitive deficits. If you have deficits that have persisted beyond the month then if you are driving that may not be legal. I would make sure but only if you have symptoms that have existed for more than a month otherwise you are clear to drive but again I would also tell the insurance company - who generally aren’t interested once you’ve told them.

You’ll find the community on this forum supportive and responsive so if you need a good cathartic cry, or rant, or have further questions pitch in and ask :slight_smile: There is existing posts covering everything I think - a recent one about freemasonry ceremonies post stroke was the first freshly broached topic in a long time! :slight_smile: ).

We can sign post for you but much can be found with the magnifying glass at the top of the page. We also like hearing about your progress as it gives all hope for theirs so celebrate any wins with us

Caio
Simon

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Ann, with huge emotions i thank you. I am replying now to say thank you tears. I appreciate your reply so much. Hopefully things will improve as you say. Im now on Blood thinners, blood pressure tablets, and cholesterol. Even though ive never had high blood pressure.

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Thank you Ciao, Simon

I had the stroke within my sleep. I have no physical aliments or affects. Only the what i thought was veritigo for 3 weeks and i did attend the hospital ,ohl yes and a terrible headache. To which i had the MRI and they detected the stroke. Everything else seems fine.

Thank you for the welcome and reply, i so do appreciate it.

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Headaches are common

I’ll leave @EmeraldEyes to tell you about magnesium :slight_smile:

The welcome post will tell you that some post stroke symptoms have their commonest onset after 3 to 6 months - fingers crossed you avoid them all. Again awareness is a useful thing (& the medical profession should put more time and attention toward)

Caio
Simon

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Thank you very helpful

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Dearest Roland

Thank you also for your relpy. Apologies i spelt it weong ive had a cerebellar stroke, also known as a cerebellar infarct.

I will take all you advice possible. Thank you for allowing me to join.

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No worries, Sally,

When you said you had vertigo for 3 weeks I guessed it was a cerebellar stroke. Do take movement very carefully, because balance can be a little off. I understand why you are a little unsettled. A few people here have had that kind of stroke and will advise, hopefully,

Good luck, hope things settle, ciao, Roland

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Thank you for the reassurance, and guidance. Its all very helpful. I guess the scariest part is the inknown.

Im a forst aider and have been for the past 20 years, stupidly i thought i was ofay and would recognise a stroke, but sadly within my own i didnt. I known of what i thiught was the usually symptoms.

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Hi Sally, it sounds like you’re on the ‘standard’ tablets that most of us are started on following the stroke. I really struggled with the tablets for cholesterol , I had terrible pains in my legs all day every day and after trying 4 different types I stopped taking them. I was referred to the hospital and prescribed injections which work directly on the liver and I have had no side effects from them and my cholesterol is 50% reduced. I guess what I’m saying is that there are alternatives you can take if some don’t suit you. So glad you’ve found this lovely group it was a huge relief to me when I found them 6 years ago. It was a lot different to how it is today but there are some knowledgeable contributors who have learnt and researched through their own experiences of stroke.
Stay well things will get easier.
Ann

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Thank you Ann. This group has been amazing, even straight after my first post i dont feel so alone now.

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Hi Sally @BLUEBELL1

Welcome to the community, I’m sorry to hear about your stroke and the difficulties you’re going through. You’ll find lots of support here and I can see there have already been some great responses to your post which I hope will bring some comfort.

If you need any help during your time on here please tag me, using the @ and I’ll do my best to help or point you in the right direction.

Anna :slight_smile:

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Thank you very much.

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That’s exactly what you should feel, here. Well done

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Thank you, so very much :pray:

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Hi @BLUEBELL1 and welcome to the forum, so glad you have found us, and I hope you find lots of comfort and reassurance here going forward in your recovery. You are not alone here :people_hugging: And I will second all that’s been said by the other members and hope I won’t repeat.

This is a great shock for you, it was a life threatening experience you just went through, and you didn’t even know it. That’s scary! And it takes time to recover from. So yes, the tears and the post-stroke anger (PSA) are a part of that and will calm down in time as you come to terms with this. Just be mindful that if this doesn’t settle down or you just can’t cope, to contact your gp about it, don’t let things slide.

And he doesn’t know, no one does unless they’ve been through it themselves. Just as no one knows what it’s like to have a broken leg unless they’ve had one themselves. Your husband is trying to comfort and console you as best he can. He’s floundering in the dark too. But he needs that comfort and reasurance too, just as much as you do; he just nearly lost his wife. He’s on the outside of all this looking in…through a sound proof glass. It might help him greatly to read this post, have a look around on the forum at other members stories to give himself a better idea of all this. And, as anyone can have a stroke at any time, being forewarned is forearmed, this forum is also for the the family, the carers :wink:

One of my constant issues post stroke, which were TIA’s 3½yrs ago, is a constant headache the size of a skull cap on the top of my head. I’ve known for many years that Magnesium Glycinate can help with migrains, though I’ve never suffered from them myself. So it’s really only since @Pando brought up the subject many months ago that I thought to give it a try myself…in for penny and all that. And it works for me! However, I do know another member on here who’s tried it on her husband and it hasn’t worked.

I took 2 capsules daily and didn’t split them into 1 twice daily. I felt some of the relief within 12hrs of taking that first dose. As a test, I stayed on them for 2/3wks then stopped and the headache returned within a month or so of coming off them. I repeated the trial and the headache returned a second time so now I just stay on them. I can actually feel or sense that the headache is lurking as a slight pressure, hard to describe but at least it doesn’t hurt anymore.

The one I use is Magnesium Glycinate with added vitamin B6, so I’ve yet to test whether it could be the B6 that’s taking the headache away. I’ve already tried a supermarket brand of Magnesium and that did nothing for me at all. B6 on its own is my next experiment to see if that’s what cleared my headaches.

It will get better with time, patients and lots of rest…even if you don’t sleep, that too will come with time. In the meantime it’s still important to close your eyes in rest. It still helps the brain as it’s not having to do as much, less information to process, allowing it to concentrate more on the healing and recovery. And that in itself could be what’s causing the headaches, headaches are quite common post stroke.

And when we speak of time we’re usually speaking in terms of years not weeks, as recovery is a marathon not a race. But the first 6mths see the quickest and most recovery so stay strong and be positive :people_hugging: :slightly_smiling_face:

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Amazing so supportive, i will definitely show my husband this. :mending_heart: with wrapped heart thank you.

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That’s a very good post emerald :slight_smile:

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