Hi
This is my first post having been shown the forum this morning. I had a stroke 4 weeks ago today. The hospital were unbelievable as was my wife and due to the speed of the clot buster I am so lucky to have physically recovered. Because of this I feel somewhat of a fraud so feel slightly apologetic posting.
However, the level of anxiety and tears I have been having has been overwhelming. Is this to be expected so soon despite being fortunate. Have others experienced this.
It wasn’t clear of the cause of a clot as BP and cholesterol weren’t high. As a Non smoker , 52 and a regular exerciser. I’d run swam and been in gym the week before which is/ was typical of me. For these reasons I am having more tests. A bubble test this week and a check for AF. Has anyone else had these experiences.
Thank you for allowing me to post
@CT28311 Ji & Welcome to the forum although sorry you’ve had cause to join.
It’s good to hear your physical recovery is hoing well. Don’t ever feel the need to apologise for doing well. You’ll find we are all as happy to hear that as we are to hear about people’s struggles too.
The anxiety & tears are very normal. You’ve had a big shock & an injury to your brain. I spent hours & hours & hours crying for months after my stroke. The good news is that it will ease in time.
Not knowing the reason for your stroke won’t help your anxiety but it is hood that they are doing more tests. Many people never find out the cause but hopefully you will. I was at my fittest when i had my stroke too. It’s no guarantee as many of us have found out.
I had a bubble echo & it was nothing to worry about. Completely painless - had to pull a few funny faces to get the bubbles to go through but that was it. They told me straight away there was no hole.
Good luck for your tests & hope to hear more from you soon.
Best wishes
Ann
HI @CT28311
Welcome to the forum.
Please please please don’t feel anything like a fraud.
Everyone and every stroke is different. Hopefully you will get some more information over the coming days and weeks and that will help.
This forum is a safe space and people will care and listen.
It is very difficult to start with and it’s hard!!
I had 3 strokes 10 months ago and the doctors still don’t know what caused them at the age of 44, why I am still alive and what what the bloomin heck is wrong with me!!
But I keep going and trying!!
Keep posting on here and keep talking - it helps. Well it helps me anyway!!
Yes I have!! Inconclusive
May I ask what sort of stroke you had and what if anything you have been diagnosed with so far?
In the meantime stay cool and here is a picture of a polar bear to cheer you up!!!
Kieran
You sound exactly the same as me, apart from i had a 2nd atroke the day after id recovered from the first one, ironically on the stroke ward in hospital. That was 16 months ago… i had 11 weeks in a rehab hospital and been recovering at home ever since.
The psychological side of stroke is huge and very much underplayed by even the stroke units…
I was 53, playing tennis the night before in decent health and no triggers for this to happen.
Took me months to accept that i was now disabled and going to need months and months of rehab.
This forum is full of amazing people who can help you
Hi Kieran and Ann
Thank you for your replies.
I had an ischaemic stroke and so far have no real diagnosis other than cholesterol high end of normal and told in hospital that I had sticky blood.
Not much else.
Chris
Juat to add Chris, i had a heart recorder fitted as they are looking for AF as a potential reason. Its under the skin and took me a few weeks to start ignoring it was there.
Take each day one at a time and atsy positive… look for small wins .
Hope all goes well
Andy
Hi @CT28311
I think pretty much everything you have posted about is normal well the new normal that is the completely alien experience post stroke particularly post hospital .
Least ways nothing you’ve said is going to be a surprise for anybody here including feeling of fraud which you absolutely don’t need to.
The things we normally end up saying every time are now gathered together in a welcome post tap the blue text
It will lead you to other posts and ways to search.
As is being said about the emotional and psychological impacts can be significant both for you and all around you. It’s quite likely that you have a journey where things will emerge perhaps 4, 6 12 months out did you or absolutely should have been prepared but almost certainly weren’t for those prospects
You’ll find the people here have the wisdom of crowds as well as a pretty endless supply of patience and an understanding that you won’t find in anything other than this or other stroke forums.
Please keep telling us how you get on, your good news lifts us all and you’re not so good We can normally give you some comments that may be helpful to you.
Investigate help for your wife and family too because they are often overlooked and quite possibly they will be the most stable thing in your existence even if you have a good physical recovery fingers crossed that you have a good psychological recovery and no emotional impacts other than the shock that you rapidly recover from
Ciao
Simon
Chris!! Hello again
Well that’s a start! But I’m not convinced that you can just be diagnsed with sticky blood!! It takes tests I’m pretty sure but maybe they have worked t out quickly for you great polar bear in the sky willing!! I honestly don’t know!!
I only say this because I have had soooooooo many tests lastest to try and work out if / why I have sticky blood was bone marrow and blood dna tests to look for genetic markers that might indicate a reason as to why my white blood cell count is generally very high and sometimes stupidly high!!
Oh well I’ll keep on keeping on @Bobbi and stay cool
I know of a couple of other people who had strokes because of sticky blood. That is a posdible cause. Hopefully they are giving you some meds to help that…if not i would ask them about it.
Hope your tests go well this week & you start to get some answers soon.
Ann
Hi there!
You are so correct in saying that the psychological side of a stroke is huge and very much underplayed …
I know this firsthand with my mother, who suffered a brain bleed stroke 2 years ago. Sadly, she died a few months ago in her early 70s. She basically lost her mind, even though her memory and many of her cognitive/intellectual skills were fine. Her emotional state couldn’t be helped, no matter what we did. She suffered with severe apathy, pacing at night, OCD, terrible attention span, etc. As time went on, she started to become irrational about some things (didn’t want to wash her hair, or bath; refused to take contact lenses out at night)… We were told she had no dementia of any kind. It was all due to the stroke and possible PTSD. No medicines worked (anti-depressants, benzos, anti-psychotics, etc.). Buspar was the only drug that helped a tiny bit to calm her down, but it made her go into blank stares. Oh well…
By the way, my mother’s stroke was a 17/42 on the Stroke Severity Scale.
She made a beautiful recovery on a physical level (80-90%), especially for age, but the stroke ruined her emotional mind. She walked a like a normal person after 1 year with no twitching or tingling in her affected leg. Her balance and reflexes were excellent. She could go up and down flights of stairs without needing to hold onto the railing. Her affected hand, however, took a little longer to come back; but when it did, it was 80% back or more. She only had a little weakness and tingling in it, but she could do most anything with it (eat, cut things with a knife, use scissors, open easy things, etc.). Her affected arm was stronger than you’d ever believe. Remarkable.
Strokes are complex. If you had seen how well my mother recovered physically from her stroke for her age (71), you would have never believed her mind to be in such a terrible state. Well, she was very mentally ill from the stroke. She only regressed over time.
Best of luck to you in your recovery. Take good care.
Hi, glad your recovering. I had a stroke 3 days before a big one. Stayed in hospital overnight just had slight vision problem. Unfortunately didn’t realise it was a stroke. By the time I went to hospital it was too late for the busting drug. If only I’d known.
Moral here get checked out soonest.
Take care.
Hello and welcome,
I am 10 weeks post stroke and felt the same as you, my BP and cholesterol good and fitter than I have been for years, it was such a shock that I think I went into denial, and other than fatigue didn’t feel as if I had had a stroke. I am also awaiting tests, and my mobility is ok other than some arm muscle weakness. I recently discovered that I have some cognitive issues, which freaked me out all over again and sent me back into denial. I have cried a lot and was in a state of anxiety when I found the forum. In some ways I feel like this really is the only access I have to people who are understanding, my teenage daughter is still living on her own planet and friends have been very kind but don’t have experience of the post stroke world. Im still dipping in and out of denial, and starting to understand (slowly slowly) how my brain has been affected. The Zoom cafes are great too
Its good to talk.
Take care.
Hi @sass
The normally quoted cycle is shock anger resistance although your use of denial is a perfectly good word I think resistance is just used because it allows the use of an acronym SARAH.
It’s good that you’re moving through because recovery is aided by the transition. Don’t force it to recognise it
With reference to zoom cafes
I’ll run the next one this Thursday afternoon and I’ll put a notification here somewhere and tag you in it
Link and the time will be the same as previously if you have that post bookmarked
I have friends who are kind and ‘pretend’ to understand but it is always difficult when the damage is inside your head and in your brain that is not visable like a severed limb or something like that yet we can be equally as broken.
I am 10 months in and I still struggle - I have lost some friends and made some new ones - especially on here.
I now accept that my brain just doesn’t work like it used to or like other people’s but I know people here understand and are supportive.
I find it difficult when people say oh well you’re doing well you look ok well done. Not realising that it’s just the start of a long journey.
What does a blind / disabled / stroke victim / partially sighted person look like. I have to walk away quickly or I will lose it everytime some one says to me ‘you don’t look blind’ or ‘if youre blind how can you use a laptop or watch tv?’ or ‘well come on just close your right eye then’ oh my god!!!
By the way I have hemianopia so I can see straight on and to the left but not to the right at all. It is very weird and still getting used to it but it is in both eyes!!!
I often feel that aside from very close friends or my OT or GP or consultant or psycologist!
Have a look at this thread if you can be bothered to maybe get a few bits to start you on this horrible unexpected journey.
take care mate.
Kieran
Thanks Kieran, thats very kind. Your reply did make me chuckle, when I talk to my brother ( who is a massive hypochondriac) he says your ‘mini stroke’ like I got a new pet and I want to shout out it wasn’t a b….y mini stroke although too be fair I think I probably did have a TIA in February……when the Stroke clinic phoned me and diagnosed a migraine lol. When one of my friends/close circle has something happen to them I research it so I can understand more and offer help, although I have to say I do enjoy giving help more than receiving it!!! Im a glass half full person normally, but it has knocked the stuffing out of me. Anyway I look forward to making new friends in this community
Many thanks
Sarah
Glad to hear you are doing well. 8 months on I have no cause for my tia and was told it is just about reducing the risk factors. I continued to improve and found the anxiety has greatly lessened. 4 weeks is very early days and hopefully you will continue to improve and get stronger, just give yourself time.