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Tag Archives: fatigue

‘They thought I had sunstroke – but it was a clot on my brain’

09 Tuesday Oct 2012

Posted by a1000shadesofhurt in Neuroscience/Neuropsychology/Neurology

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blood clot, diagnosis, fatigue, stroke, young people

‘They thought I had sunstroke – but it was a clot on my brain’

I was 18 and had just finished my A-levels when I had a stroke. Not that I had any idea that was what it was. Even when I was diagnosed weeks later, I looked at the consultant blankly. Aren’t strokes something that happen to old people?

I was on holiday in Spain with friends when it happened. Six of us went out there to celebrate the end of our exams. On our first full day, I’d never felt better. We headed straight to the beach and after months of hard work, I finally felt relaxed.

The next evening, when I was getting ready in the bathroom to go out, I coughed and had a bizarre sensation where I felt I could no longer stand. I was completely aware of what was happening and knew full well I was about to fall to the floor, but it was out of my control. I felt very confused. “OK,” I thought as I lay on the tiled floor. “This is weird. I can’t get up or find my balance.”

My friends were downstairs waiting for me and somehow I managed to crawl down the landing and down the stairs and told them I couldn’t walk. By now, I felt very sick and had an overwhelming urge to sleep. They carried me into one of the downstairs beds.

When I woke up a few hours later and crawled into the living room to see them, I noticed the right side of my body – my face, arm, waist and leg – felt weak. Then I was violently sick and the room spun round.

My friends nursed me as I slept on the sofa, waking sporadically to be sick. They called my dad, too, who told them to give me plenty of fluids. But each time I woke up, the weakness on my right side was worse and by now, I found I couldn’t really talk. I knew exactly what I wanted to say, but I couldn’t get it out. I was disoriented and frightened and felt very far from home.

My friends decided I must have had sunstroke but four days later, when I still had no appetite and couldn’t walk or talk, they were really worried. My dad asked his friend from whom we’d rented the villa to go and see me. He took one look at me and said, “You need to get to hospital.”

As soon as I arrived, they sent my friends away, gave me a CT scan and started hooking me up to things they weren’t explaining. Most of them couldn’t speak English and those who could had a small vocabulary. Eventually, one of them told me I was going to intensive care because they’d found lesions on my brain. What on earth did that mean? Could it be a brain tumour? It was terrifying.

My dad flew out the next morning. It was so good to see his face. He and my mum are separated and she didn’t have a passport, which was awful for her. But a few days later, she managed to get an emergency one and when she walked in, we both wept.

I had various tests and scans, but there were still no answers. One consultant mumbled to the doctors something about it perhaps being the beginning stages of multiple sclerosis, but he wasn’t sure. I tried to focus on the “wasn’t sure” bit.

A week later, I was told that I’d exhausted all their tests and they had come to no firm conclusions. They sent me home, saying I’d probably be better off in familiar surroundings.

I was driven straight from the airport to the GP, who gave me an urgent referral to hospital, where I had an MRI scan. Within half an hour, I was told I’d had a stroke. “What’s that?” I asked through my slurred speech. My mum started crying, so I knew it couldn’t be good.

I’d had a blood clot that had managed to lodge itself in the brain, the consultant explained. He didn’t know why I had it, though further investigations showed it was a result of a hole in my heart that I didn’t even know about and possibly a contraceptive pill that I’d been taking for nine months, which I should apparently have been warned can cause blood clots. Other contributing factors I was informed of included the stress of A-levels and the fact that I’d flown.

All I really wanted to know was whether I was going to get better, to speak properly and to feel the right side of my body again. By now, I couldn’t even hold things in my hand. To my huge relief, the doctor said he was almost sure I’d get everything back.

For the next three weeks, I stayed on a stroke ward, where the person closest to my age was 39 and where most were around double that age. A few passed away while I was there and sometimes I’d have moments of worrying it would be my turn next. But most of the time, I remained hopeful.

By the time I was discharged, my weakness and speech did seem to be improving. But I was told I’d need to be booked in for surgery because they’d discovered that my body was susceptible to blood clots and there was a 50 per cent chance I’d have another stroke within a few years. The three-month wait was hard. I was 18 and all my friends were going out and socialising.

But then the operation day came. I was told they’d carry out quite a complicated procedure to prevent future blood clotting and it all sounded so clever that I expected to wake up feeling brilliant. In fact, I was extremely tired and had a lot of migraines for weeks. But there was one positive – they said that what I thought was asthma was actually my deoxygenated blood mixing with my oxygenated blood as a result of the hole in the heart. It meant that when I exercised, it felt like I didn’t have enough air, but they had now solved this problem.

Three months later, I felt a lot better and took a part-time job as a personal shopper in Tesco to bring some money in. As time went on, I decided I’d like to help others who have had strokes or – for whatever reason – can’t be as independent as they’d like, and I got a full-time job as a care assistant. I’d go round to clients’ homes taking them out and doing personal care at home and I loved it. I know what it’s like to be in a position of utter frustration, depending on other people. More recently, I’ve got a job in the NHS as a clinical-management officer. I help to run clinics for certain conditions, including strokes. My next plan is to go to university – which I’d had to put on hold – to train to become a speech and language therapist.

It took a good two years before I was free of stroke symptoms and the exhaustion of it all. I still have some fatigue, migraines and short-term memory problems and I’ve been told that if ever I have children, I’ll need to be closely monitored by a cardiac team. But apart from that, I feel great, am going running as much as I used to and have no visible signs of what I went through. Sometimes it feels a bit like a dream that it ever happened at all.

Interview by Kate Hilpern

Facts about stroke

* A stroke happens when the blood supply to the brain is cut off by either a clot or a bleed, starving the brain of oxygen and causing brain cells to become damaged or die.

* Around 1,000 people under the age of 30 have a stroke every year in the UK and it affects at least 400 children annually.

* Diagnosis of stroke in younger people is often delayed as people generally don’t suspect strokes to happen among this age group – but prompt treatment can significantly improve outcomes.

* Causes of stroke in younger people often differ to those in older people. These include heart conditions such as atrial fibrillation or an undetected hole in the heart. However, risk factors normally associated with older people such as high blood pressure or diabetes can also cause stroke in young people.

* The expectations for recovery after a stroke are slightly better the younger you are.

* Regardless of age, all strokes can be diagnosed using the FAST model:

Facial weakness – has the person’s face drooped, usually down one side?

Arm weakness – is the person able to lift both arms above their head?

Speech problems – does the person’s speech sound slurred?

Time to call 999 – if one or more of these symptoms are present call 999 immediately.

For more information go to stroke.org.uk

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