Maggie's Story - Stroke at 25 caused by Patent Foramen Ovale (PFO)

I had my stroke at 25 years old in Dereham, Norfolk. Before my stroke I was achieving a lot. I was on track to getting a manager role and was about to start two qualifications through work. During lockdown I had done the opposite to most people and actually started losing weight. By the time I had my stroke in January 2022 I had lost over three stone and I was the healthiest and happiest I had been in years! All that was left was finding myself a boyfriend and I’d have ticked all the boxes.

In the week leading up to my stroke something definitely wasn’t right. I had started taking the combined pill to help with polycystic ovarian syndrome.

At the time I thought it was just the medication settling in, but I was late to work three times in a week and I was getting quite emotional and muddled. I told my manager I’d call the doctor on the Monday morning and stay home and rest all weekend. I didn’t make it to Monday and fortunately I didn’t stay home either. I live alone, so if I had of stayed home on that Saturday, I might not even have been typing this! This was a hard thought to get my head around.

On that Saturday morning I decided I was feeling a little better and I wanted to go and see my friend, who wanted help painting a pub/club she had taken over. I met her for coffee, we chatted and we had a look around the pub. I bragged about how well I was doing. At this point my memory goes fuzzy. I remember my friend asking me if I was OK and saying that I looked funny. The next thing I know I’ve gone from a bar stool to a sofa. I heard my friend say

“If it wasn’t for your age I’d think you were having a stroke”.

The second she said that she realised that was actually exactly what was happening!

My parents were then called and arrived before the ambulance, which took just under an hour. I couldn’t move my left side, my face had drooped and I had slurred speech. I remember thinking if someone could just touch my hand I’d remember how to use it. In reality though I was oblivious. I was protesting I was fine and I was going to walk home. I was sent to Norfolk and Norwich hospital for thrombolysis, two CT scans and one MRI. The clot didn’t clear as quickly as they wanted, so I was sent to London to operate. Fortunately for me the clot cleared on my way there.

I was sent back to the hospital the next day. I stayed for five days and they worked out that I am one of the “1 in 4” who was born with a PFO (Patent Foramen Ovale or ‘open flap in my heart’). It should have closed when I took my first breath. It made no difference to my health or the strength of my heart, but it allowed a route to my brain for the clot the combined pill had caused.

If I hadn’t have taken a breath at the moment I did then the clot would have gone into my lungs and caused a pulmonary embolism (honestly, I haven’t looked at what that is enough to know if that’s better or worse).

I was discharged from hospital without much to go on. I was told I showed no cognitive or physical problems, apart from slight weakness on my left side. However, I found after I walked further than the short distance round the ward, I was struggling – so I bought myself a walking stick. I thought because I was told I was fine, then I must be. I pushed through the problems I was having. It was explained to me that the tiredness was post-stroke fatigue and this was likely improve, but I don’t think I understood the gravity of how this would impact my life.

I went back to work after just over a month, only twice a week, for four hours at first, but looking back even that was too much. I was so focused on getting “back to normal” – it took me a while to realise that I wasn’t going to get back to what was normal for me – not quickly anyway.

I found myself crying a lot! I was told about Different Strokes by the hospital, so I joined the Facebook group for survivors and I found out about a group that meets up once a month in Dereham.

I posted on the group explaining my frustration and how I kept being told because I’m young that I would bounce back. I asked when I wouldn’t need the stick anymore etc., I hated it!

Someone told me to grieve my old life. I may get back to what seemed normal for me, but in the meantime it will have to be my “new normal”. It did feel like a grieving process. I cried a lot and I missed my life. I missed feeling accomplished at work, I missed the gym and enjoying weekend nights out. Then I felt angry that this had happened to me. I was angry at the doctor who gave me those meds, and I was angry I didn’t stop taking the meds when I started feeling unwell.

Eventually, I accepted it. I started to realise life wasn’t over – and seeing the little improvements, like being able to walk for longer, getting less out of breath and having more energy for socializing – that helped.

Six months after my stroke I had a review. A stroke nurse evaluated all the things I was struggling with and was shocked I hadn’t had any support yet. I finally felt validated that I wasn’t being lazy or just not trying hard enough. I have finished physio but still use my stick. I’m using the exercises they gave me to continue to strengthen my left side, and I also see an occupational therapist – which has been amazing. That helped me understand that my verbal memory had been affected, and I was given advice for managing sensory overload and my fatigue.

In August 2022 I had the hole in my heart closed. It is called a PFO closure. I understand they go through an artery in the groin and put a device in the hole. I was terrified right up until the point I was sedated. The operation went well and I went home the same day and I felt like I was finally safe from another stroke. I wasn’t able to come off the blood thinners through, which I felt made my fatigue worse. I am now on antiplatelet medication called clopidogrel. I will be on this medication for the rest of my life now.

Having this operation was a turning point. I felt safe from having another stroke and safe to continue getting better. I still have very bad anxiety. I went to A&E twice for chest pains, nausea, and dizziness. I found out three GP visits later that these were anxiety attacks. Having had a stroke I think the simple answer of an anxiety attack was overlooked, I am now in therapy to aid this. I am lucky enough to have private heathcare through my job, which allowed me to get access to therapy and my operation so fast.

I have been going to sewing classes to help improve my left hand, as I have full movement but it’s a bit slow and stiff. As well as just giving myself another hobby to enjoy, I play role playing games on the weekend. I also have a drawing challenge with my friend, where we ask friends for prompts and take turns drawing them. These small things have meant a lot to me, giving me the social element I thought I had lost a little of, and helping me feel productive again.

It’s been over a year since my stroke and I have gained weight due to not being able to exercise and not always picking the healthy option when I am fatigued. I have not yet managed to return to work full time, but thankfully they are letting me increase my hours, slowly.

I found myself an incredible boyfriend just over a month after my stroke, and I’m setting goals and new career aspirations. I still struggle with fatigue, sensory overload, mobility and concentration – but in comparison to where I was this time last year I have improved by miles! I am proud of how far I have come and how I have been too stubborn to give up.

As a young stroke survivor I want people to know strokes aren’t just for older people. Check your family history and please check the side effects of medication. If I had of done this maybe I wouldn’t have had my stroke. Also I don’t feel my age means I will bounce back. If nothing else a brain injury recovery seems almost always a long one.

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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.

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