I have established that my stroke was a cerebral venous thrombosis of cortical vein in right frontal region, which is a rare type of stroke i am told. I then kept digging to find what caused my stroke. I asked about AFib but was told that Afib wouldn’t cause this type of stroke. Then I looked at high cholestral it was 5.3 at time of stroke but was told this want the reason.
So basically I am still at ’ it happened’ which after 5 years can accept to an extent but still leaves me wondering.
5 years is a long time to carry that question, and I completely understand why ‘it just happened’ still nags at you. But here’s a thought I’d offer as a shift in direction: Maybe the ‘why’ is simply beyond what we can know right now, and that’s okay. Don’t keep digging. Instead, you can give yourself permission to stop searching for answers about the past, and start searching for a better, healthier future. That might look like long walks in nature, good food, restful sleep, earthing, time with people who fill your cup, and simply being kind to your body for carrying you through something rare and difficult.
The past : stroke
The future : peace
You’ve earned that
I agree with Pando. I think he’s outlined exactly where to be looking.
Stroke is a pretty dreadful affair. It causes damage, leaves you apparently alone, with questions that don’t seem to have answers.
Do what you can about the damage, be patient, the future does bring improvement even if slowly.
Discover there are a lot of us, and yes, you are one of us. We have a future and can be here for one another.
I don’t think anyone can set things back to where we once were but we can work towards a happier and more fulfilled future.
Let your answer to all the questions be hope and a search for improvement.
I’m sorry that looking back can be an unpleasant experience but work at making good memories. When you look back you can be selective and reject the negative and aim at the positive. Those good memories will always be there.
You are welcome amongst us.
No-one can promise an untroubled future but you can learn again that it is possible to ride a storm until you get back into peaceful waters.
keep on keepin on
Hi @Al59 I agree fully with @Bobbi and @pando ,I know the reason and cause of my stroke to a degree but no matter what I could not change this. In fact when told at the hospital I had suffered a stroke my first question was when does rehab start, the poor doctor was a wee bit shocked asked why I had said this.
Simple really this is already happened in the past so it’s building a new future now. Yes I did think about the cause on and off but learned to live with it early and work on making me better and the best person I can be.
I agree with all the others. Whilst it may be good to know the reason so you can try & prevent another recurrence it doesn’t change anything. Sometimes it can make the worry worse as you may find out you are living with a condition that increases your risk.
I was told my stroke was caused by a carotid artery dissection but they never understood how as my type of stroke can’t happen from a carotid dissection apparently but it turns out I had 2 areas of my brain affected & 1 could be & 1 couldn’t so that one remains a mystery.
I tend to tell myself that it is something that happened. I survived and I have a life to live and I am trying to live that life the best way I can deficits and all.
You will probably always wonder that’s human nature.
I know exactly how you feel, I think most of us wonder “why me?” at times but quite often I don’t think there is a definitive answer. Take my own case as an example. 2 1/2 years ago I had an ischaemic stroke that took away my right hand peripheral vision, and in fact my awareness that is a world to my right! But other than that I still think I dodged a bullet, could have left me paralysed or worse. But why did it happen?
It was exactly a month after my last Covid jab. 2 days before I had flown back form a holiday in India. My father died of a stroke at 73, the exact same age I was when I had mine. I had retired 3 weeks previously which was a bit stressful. I had been a lifelong smoker (stopped after having the stroke though, I may be stupid but I’m not that stupid!). As I understand it any one of those things could have been the cause, or none of them.
I hope I’ve made sense but, as I see it, some things are not just unknown but unknowable.
The strokes I had were at first cryptogenic, a case of these things sometimes happen, but with a curious stroke consultant it was narrowed down to trauma to the neck this was because I had strokes on the left and right side of my cerebellum, this is highly unusual, a typical stroke only hits one side of whichever brain it hits; big brain or little brain. This excludes other types of stroke like brain stem and eye strokes. There are triggers and causes behind strokes, many lifestyle choices may potentially be triggers but not necessarily causes. A consultant might point towards a trigger or potential cause and deduce from that and then manage that issue in the prognosis, but it is not always one hundred percent certain in many cases. All sorts of things go on inside our body that we can’t see or know that are happening. A recent MRI showed small arteries in my brain starting to harden, had I not had the strokes in the first place, I doubt this would have been detected and, potentially, in my future life, these might have caused a clot and hence a stroke down the track. Fortunately, being on anticoagulant medication, I am somewhat safeguarded from them being an issue but it is not full proof and apparently they are quite common as we age.
Quite a lot of people (including me) never find out why their stroke happened. I think, instead of “it happened”, I’d be inclined to put an ‘s’ and an ‘h’ in front of that phrase!
Poo happened? Is that what you are saying?
Absolutely. From a great height!
And, despite my earlier post, I’m sure there is a large element of that involved as well MinnieB!
A bit like seagulls in that respect…
My ischemic stroke was quite severe and initially paralysed my left side. After a few days in ICU I was moved to the stroke ward and they began more scans to find the cause and discovered a 60-70% blocked right carotid which the consultant said was the culprit. So I had an endarterectomy.
How are you now though? These strokes are funny things (not funny in the hilarity sense obviously) and for apparently similar traumas there seem to be amassively variable outcomes. I know I’m one of the lucky ones. I have full mobility and cognitive ability, all I’ve lost is my awareness of a world to my right. But, some days, I wsh a I had a fiver for every person who tells me “Oh my uncle/aunt/cousin/friend had a stroke and made a full recovery. Are you doing the exercises?” as if I’m too lazy to bother!
I have had many people say to me too I know someone who has made a full recovery from, their stroke and they don’t know why I haven’t. As if I am making it all up. It’s frustrating but I just try and ignore them. I also had someone tell me I didn’t sound like I’d had a stroke………they were the other end of a telephone. Was very tempted to say so what is someone who has had a stroke meant to sound like. Naivety I guess.
H, Rups,
I don’t understand the need for some people to discover the cause of their stroke. I knew that I just had to learn to accept it. I had lived my life thus far very much “on the edge”. Paratrooper, sailor, pilot. I knew that the instant I exited the aircraft, there was no going back; I knew as I climbed the huge mast and out along the spars that one mistake now would be my last; I knew that as soon as the aircraft wheels left the deck that I had to gently get them back down again. But I had no control over a stroke; I had to learn to overcome or live with the effects, but knowing the cause of the stroke was not going to help me.
As @MinnieB says “it happened” ! Now, I just have to get on with physio and recover what faculties I can, but I know I’ll never be a soldier again, or sail a tallship or fly an aeroplane again. They were good days, but as a stroke survivor I can still have a laugh, even if I can’t tell any tall tales again (although I am slowly learning to speak again) !
Bob Isle.
I think most people don’t have a choice, they are told by a stroke consultant or doctor what the cause was. This would be to figure out what medication is required to try and prevent it happening again, or if it was a case of a PFO (hole in the heart) it might be to give the survivor the option of having the hole sealed. Some people never find out what the cause was, for me, knowing has purely been useful from a practical perspective. Before stroke I would do physical tasks on the farm that I probably shouldn’t have done by myself, like thinking I could lift a cast iron radiator. 
Live and learn, they say.
I’d like to know why, as I don’t want another one. Nobody could have had a healthier lifestyle, yet I had the stroke. If there’s something I should change, I’d like to know about it. Knowledge is power.
Hi Dexster,
OK, good point .I hope you are doing well.
Bob
How am I feeling now? It’s 3 years since my stroke. The endarterectomy damage was limited to nerves in my mouth and throat, most of which has mended. I was warned that I might lose feeling in my face but that didn’t happen. The operation is to provide protection from a further stroke and doesn’t fix any damage already done. So far it seems to have worked because I was scanned last summer and no new stroke evidence was found.
My stroke recovery was steady but took a lot of therapy and hard work re-learning everyday tasks. I would estimate I’ve attained maybe 70% but do still find some minor improvement happening. Some cherished abilities will never return, but that’s the cruel nature of stroke.
Sorry to be late coming back to you but, well, stuff! Rather like yourself I would say I’m at about 50-70% of my pre-stroke levels but when I say that I’m really talking about my confidence levels. I’ve lost all my right hand peripheral vision but also, and it’s a harder thing to explain, any awareness that there is a world to my right. As I said it’s very hard to explain but while, to a degree, I can now allow for it in the early days a sudden noise from my right would terrify me. Where did that noise come from when there is nothing there!
I should add that I had my stroke when I was 73 and I have never been short on confidence. I used to train, as a civilian (Yeah, it’s complicated!), with 2 Para and never, ever worried about anything much! But, now I do. Now in crowded situations my wife will ask if I want her to take my hand, and sometimes I say yes please. That is my awful truth, the London underground when we visit my daughter is a particular problem! That and not being able to drive.
But we both deal with the shit hand we’ve been dealt and I still say I dodged a bullet. I only spent one night in hospital but, some of the people on my stroke ward? They weren’t going home.
Anyway I’ve talked way too much about myself so apologies. If you ever want/need/care to talk again I’ll be here, eventually!