My stroke at 36

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Hello I thought I would share my stroke story as I have been reading other stories on the forum and can relate to a lot of them especially regarding anxiety and depression.

I am 53 year old Man. In April 2006 I went to bed as normal, I woke up in the morning and could not get out of bed I felt very dizzy and vomited and I could not hear out of my left ear but strangely the ear was very sensitive to loud sounds. I was 36.

Because I had no classic symptoms of a stroke I was referred to my local ENT department (this was a week later) I actually had a mri on my head but nothing was found, the consultants were stumped so it was put down as Meniere’s syndrome.

Well big changes in my life I was a Civil Servant working as a manager of a Dog Section for the Ministry of Defence but could not continue this due to any loud noises and I would fall over and vomit. I was relegated to a desk job but even this was not sustainable so eventually a year later I was medically retired.

At the time I was married and because of what happened I went into a deep depression for over a year and unfortunately my marriage failed.

I got on with things so fast forward to 2018 a month from marrying for a second time I felt quite ill though it was a TIA so went to A&E had a MRI on my head, when we spoke to the neurologist she said no TIA but there is scarring in the cerebellum showing that you had a major Cerebellar Infarction Due to Arterial Dissection back in 2006.

So only at that point did I discover that in fact 12 years earlier I had a major stroke.

So got married and on our honeymoon in Mexico, I think it dawned on me that I had a stroke all those years ago, suddenly felt very ill my blood pressure rose and ended up spending 4 days in a Mexican hospital.

Got home and ended up being basically bedbound for a year not knowing what was wrong with me. Had all the tests under the sun including MRIs and a Coronary angiogram as I felt every night I was going to have a heart attack and die.

Well after all the tests (that came back fine) my doctor suggested that I might have anxiety, then everything made more sense, there wasn’t anything physically wrong with me and I did not realise how debilitating anxiety could be until it was explained to me.

Well the Doctor put me on Propranolol and I had a course of CBT, it was a very slow recovery and not very nice side effects from the Propranolol.

So 4 years later I am off the Propranolol I had Bariatric surgery to help with my weight my BP and Diabetes are under control and I only occasionally get anxious about things.

My attitude now is well I have lasted 16 years without having another stroke so that is good as long as I continue to try and look after myself that’s all I can do.

My main reason for writing this is that I had no idea anxiety could be as debilitating as it is and it certainly opened my eyes to how bad it could be.

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@jonnypike22 welcome to the forum. You’ve certainly been on a long journey but have survived to tell the tale.

Its a shame you had to give up wotking with the dogs. I imagine people who do these jobs are extremely devoted to their animals.

Anxiety most definitely can have a massive impact on a person displaying many different symptoms that you’d never even imagine. It sounds like you’re now doing all the right things to keep as fit as you can.

Best wishes.

Ann x

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Thanks, what is weird is over time although I am completely deaf in my left ear my brain has somehow rewired so i can still hear in stereo in the middle of my head!

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Thanks, yes I worked with the dogs for 15 years and had just been promoted to manager, it was hard to leave.

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Wow such a strong lady!!! Your warrior dont let anyone even yourself tell otherwise x

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Shwmae @jonnypike22, diolch for sharing. I’m also one of the cerebellar club strokees. Cerebellar stroke has got to be the most widely misdiagnosed stroke, it pains me to know of people who are recently struck by cerebellar stroke and were misdiagnosed because there are ways to determine it. It also has its own unique aftereffect called cerebellar stroke syndrome. I have lived with panic attacks for most of my adult life, before stroke, and I know how debilitating and exhausting they can be. Aye, anxiety can become a vicious cycle if not attended to. It can also mimic symptoms and change the processes of our body and brain. What is interesting about the cerebellum, is that it is the core unit of the cranium that manages flight or fight, because it is considered the primitive brain, the one we used to avoid saber-toothed tigers back in the day.

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Thanks I agree I never knew how bad anxiety could be I would go to bed and deliberately try not to sleep as I thought i would die of a heart attack, sound strange but it was totally real for me.
Also I know I would have taken better care of myself lost weight and stopped smoking if i had know i had had a stroke way back in 2006.
Interesting about cerebellar stroke syndrome looked it up and the symptoms were exactly the same as i had, vertigo, vomiting, headache etc. Had these for a lot of years luckily they are not as bad now the main things I have now are deafness and bad tinnitus.

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I wonder if your stroke was close to the vermis, which is the worm like structure that runs through the cerebellum. Mine was close to the the vermis and I have persistent tinnitus. The cerebellum is an active integrator for sensory input, and that includes auditory signals. So, your deafness may be an acquired condition from that damage. You’ve certainly come a long way, and I was pleased to hear that you are managing anxiety as best you can.

The worst thing for me about cerebellar stroke syndrome is that the post symptoms can mimic the pre-stroke symptoms, and that can, frequently, put me on edge.

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Welcome to the group glad you found the cause of your illness with kind regards des

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So sorry to hear your story which is similar to my own.I pulled off the road for a few hours sleep on a long car journey and woke up to a changed world.
Eventually diagnoses as a stroke caused by a blood clot entering the vertebral artery via a hole in my heart and causing a small stroke in the basilar section ,the legacy of which is permanent damage to my vision,slight loss of balance,and my hands fumble meaning that Imy handwiting is not as neat and I easily drop small items.
I was 63 and now 75 I have adapted as well as I ever will.
No longer allowed to drive but my old crocks bus pass gets be around.
I had to adapt to the balance problems to continue to ski(I worked in the ski chalet holiday industry) and had an op to close the hole in my heart plus I am on anti clot medication.
My first years after the stroke echo your own with anxiety,depression etc but gradually I have moved on with little achievements building confidence.
I still get mild panic attacks but sitting down and composing myself overcomes them.
If my own experience is any guide ,some recovery is possible,and you learn to live with those aspects that are changed for ever.

Good luck on your journey

Tony

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welcome to he group, I too was retired from work, on medical grounds. I also had been promoted to acting area manager for a large children’s charity. I suffer separation anxiety amongst many other anxieties, cbt never worked for me, good luck in your recovery

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No CBT never worked for me either the propranolol did but had bad side effects managed to come off them in the end.

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'jonnypike22 ive never been given any meds for my anxieties. Don’t want any, on enough pills now

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Hi there and welcome! I feel particularly compelled to reply to your story given some of the parallels to my own - I had my own stroke at 36, and am 41 now so haven’t lived with it quite as long, but it still came out of nowhere with no risk factors and nobody’s ever figured out why I had it. I can also empathise with foreign hospital experiences - I had my stroke when I was attending a workshop in Shanghai. Went to bed one night feeling great, woke up the next morning in a Chinese hospital wondering what had happened.

Things all feel pretty stable and normalised now, but there’s definitely a sense of anxiety and depression both lurking under the surface. Both at how abruptly my life changed with no warning, and the fear of having another stroke without any real way to know if it’s coming or if it could be my last. It has a good way of really hammering home the ‘life is uncertain’ lesson. For what it’s worth, it’s heartening to me to hear that you’ve been getting on for 16 years now without another one, and it’s great to hear that you’ve been able to make such progress and aren’t as strongly affected by the anxiety as you used to be.

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Shwmae @dgrafius, it’s interesting the fear of having another stroke. Our brains are rather sensible in that they don’t want another experience like that and will flinch whenever sensations remind it of the initial strike. I put in a lot of effort to sway that thought pattern but it’s my brain versus my brain :grinning:

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Anything involving brain vs. brain is always a hard struggle. I very much understand what you mean! To some extent the thought pattern makes sense from a basic survival perspective, but when it’s crippling our ability to live without fear and anxiety that’s no good… so yeah, I’m working on it too. :slight_smile:

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yes, also our brains can be wonderful, my brain seemed to reroute my deafness and i went from only hearing in my left ear to almost hearing stereo in the middle of my head over the years. :grinning:

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Thank you, I realize although I went through depression after the stroke i only got the anxiety when I found out that i had a stroke 12 years later.

Yes in Mexico although i had travel insurance they wanted an immediate payment of £1000 and the doctors were stood around my bed waiting for the lady with the card pin machine to arrive. I know our NHS is in turmoil but it makes you really appreciate it when you experience some hospitals abroad.

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