Jess's Story - Ischaemic Stroke at 41 caused by Vertebral Artery Dissection

My name is Jess and I am 42. Five months ago, and two days before my 42nd birthday, I had a stroke while out jogging, caused by a dissection of my vertebral artery.

Leading up to the stroke, I had been having quite intense headaches directly behind my right eye, radiating over my right forehead. I thought these were cluster headaches. I had recently started ‘couch to 5K’ again and had gone out for an early morning run before work. I’d woken with a headache, but thought the run would ‘shake it off’. When I finished the run, I looked over my shoulder to check for traffic and I when I looked forward I suddenly felt dizzy and drunk and nearly fell over.

I couldn’t swallow and saliva was building in my mouth. I felt generally unwell but just put it down to dehydration and over exhaustion and just knew I needed to get home.

I seemed to improve once back in the house and quickly had to revert to ‘mom mode’ as one of my sons had woken up. I still had a headache, but my swallowing had returned and I felt well enough to get myself ready for work. Unfortunately as I was driving to work symptoms of right-sided heaviness and tingling started, my face felt numb and the inability to swallow escalated and became worse and my speech started to slow. I felt really unwell and I remember looking in the rear view mirror and smiling to myself to make sure my face wasn’t drooping.

My car was pulling to the right as the weight of my body falling was pulling the steering wheel. I remember thinking I was going to choke on my own saliva and nobody would know what had happened! I knew something was terribly wrong but I carried on driving to work as I knew I just had to get there, as luckily I work at a hospital. Once I got myself there I messaged a work friend who met me in the car park and she took me straight to A&E.

I got progressively worse with lightning bolt headaches, vomiting and I couldn’t sit up straight or touch my nose properly. Thankfully A&E took my symptoms seriously and followed the correct protocol, so I was having a CT scan within an hour, and I was being treated for a suspected stroke caused by a dissection of my vertebral artery, within the critical 4 hour window of the symptoms starting on my run.

I was transferred to another hospital where I stayed for two nights, spending my birthday morning on my own with the information that my vertebral artery was 100% blocked and inoperable and this was the cause of my stroke. After the initial hilarity of the situation wore off, I’m not ashamed to say that in a dark hospital room, on my own at night on a stroke ward, I had a major panic attack and cried. How had this happened? Why was it happening to me?

I was discharged home with leaflets and blood thinners and told that I’d have a follow up appointment soon. I was visited by nurses and physiotherapists at home, who were all wonderful. I have been extremely lucky that I have not been left with any physical effects from my stoke and outwardly I look completely recovered. So the initial aftercare subsided and I was left to my own devices. In the following weeks I hit a very dark place mentally. I felt like a ticking time bomb. I’d been told the blocked artery would never clear and I will just ‘live with it’. This led to internet search doom scrolling – and I felt like I was going to die. It was only when I went to my follow up outpatient appointment five weeks later, that I was told they are expecting the artery to heal which will clear the blockage. This felt like a life line! I have just had my follow up MRI and I am awaiting the results of this. For the moment, I am living in hope; that the artery is healing. If it isn’t, we’ll cross that bridge when we come to it.

Although I am extremely lucky to have no lasting physical effects from the stroke, this also creates mixed feelings. It creates an ‘invisible illness’ that people struggle to appreciate the enormity of what you’re living with. The ‘I’m fine’ and ‘Yes, I’m doing really well thank you’, roll off the tongue as it’s easier than saying ‘I’m scared’, ‘I feel isolated’ or ‘I’m lonely’.

I started to look through Different Strokes forums and websites and found lots of people whose stories were inspiring and amazing and it made me feel less alone and also extremely lucky that I had no physical effects to overcome, However, I struggled to find somebody like me, not young but not old. Being 42, I feel like I’m not a ‘young survivor’ and I’m not elderly. Younger peoples’ strokes seemed to be mostly caused by PFO‘s. I hadn’t come across anybody my age that their stroke was caused by a dissection and it is fully blocked. I have no associated risk factors as I don’t smoke, drink, take drugs or take hormones. I don’t have high blood pressure, high cholesterol and I’m not overweight. So I’m constantly asking myself – “What can I do to help prevent this happening again?” or “How do I help myself?” – the answer is ‘nothing’, as I did nothing wrong to cause this. I feel helpless.

I feel I’m in an isolated bracket caused by multiple factors of age, diagnosis and no outward rehabilitation needed. Life moves on around you and my life has returned to ‘normal’ with work and daily activities but inside I’m fighting a battle. A battle of fear of exercising in case it happens again, so I feel sluggish and unhealthy, a battle of the unknown of what is happening in my body until my follow up results are available, a battle of feeling guilty for not wanting to take part in something because you’re scared it will happen again but people think you’re ‘recovered’ so don’t understand your fears and a battle of getting used to fatigue, brain fog and feeling like I’m sometimes losing my mind!

I’m five months on from my stroke and I’m definitely moving on and trying to live normally, but until I get my MRI results to see if my artery has healed and while I take clopidogrel every morning, I’m living in a limbo of vulnerability and isolation and I feel like my life is paused.

Different Strokes is a wonderful organisation that helped me feel less alone directly after my stroke, and their children’s literature made explaining everything to my 9 and 7 year old a lot easier. I am already mentally in a very different place to what I was five months ago, so I am optimistic that my outlook will only get better but until then. Sharing this, even in an email to Different Strokes, has helped rationalise my thoughts and I hope it reaches somebody else in my situation.

Your donation helps others like Jess on their journeys

There are 100,000 strokes in the UK each year with 1 in 4 happening to somebody of working age or younger. Different Strokes aims to promote independent stroke recovery and help these younger stroke survivors reclaim their lives.

Donate Learn how we help

Make a smile lottery is a weekly fundraising lottery. A fun and exciting way to help Different Strokes raise vital funds that will secure our future. It only costs £1 per play, and you can choose to play every week or whenever you feel like taking a chance and doing something good. For more information click here.