My Story: Dizzy, I'm so dizzy my head is spinning!

Firstly I'd like to say hello to all my fellow participants on this forum.
My name is Neil and I suffered and Acute Ischemic Stroke of the Cerebellum.

My story starts in the early hours of Sunday morning of February 5th 2017, whilst laying in bed in the process of getting up. I'd already been up earlier to visit the toilet and had gone back to bed. My wife had already been up for 5 minutes and shouted up the stairs to see if I wanted a cup of tea. Which I siad I'd be down in a minute.

All of a sudden the room started to spin as if I had been on one of those child roundabouts in the park for a long time and suddenly jumped off and trying to walk away from it in a dizzy state. Except I hadn't I was still laying in bed. I thought it might pass quickly if I stood up and got out of bed, but the feeling got worse.

I managed to get partially dressed and fumbled my way down the stairs shouting to my wife that something was wrong. She sat me down at the dining room table while she asked me what's up and called 999. I remember saying to her while she was on the phone, that I think I'm having a Stroke, but because I didn't meet any of the F.A.S.T. criteria they wouldn't send out an ambulance. My wife was told to call the other number, which she did and they told her that if she was concerned to take me into A&E herself.

She took me in to Epsom A&E and the initial diagnosis they thought was Labrenthitus. I was still convinced I had had a Stroke, but the doctors knew best. They gave me meds to stop be feeling and being sick because my vision and head were still telling me I was spinning. I had to lay down becuase I couldn't hold my head up at which point I managed to fall asleep. I was woken at several points during the day when they were giving me tests and scans etc. they couldn't find anything. They put me on a ward because the MRI scan couldn't be done until the Monday. Almost 2 days later I found out that I had suffered a stroke.

I spent 4-5 days in hospital, during which I pushed myself to get up and walk, all the time still feeling dizzy and light headed. Somehow I knew I needed to get moving and with each step things would improve and my brain re-routed itself based what it was experiencing, whilst being aided with a frame for support. By the end of the time I was able to walk again, although it I was slow.

I eventually went back to work part time after almost 3 weeks, now having to take multiple drugs and being set up with numerous appointments to further find the route cause of the stroke.

I bought myself a mountain bike to help my fitness and assist with my balance. I felt it was safer to ride in the woods than to ride on the road, but I managed to get myself to a point where I was riding about 20 miles. So I entered the Thames Bridges Ride for the Stroke Association and managed to do the 35 miles route and raise over ÂŁ800 for the cause.

Eventually after all the tests they found that I had a PFO, hole in the upper chambers of my heart. I expressed and interest in having it closed if it was an option, only to find out that the NHS don't cover this, as they don't deem it important since you can live with a PFO without having any adverse effects.

My consultant pushed my case to a trust, and Guys & St.Thomas answered the call.
They got me in in May 2018 and I had the procedure to close it.

Since having the PFO Closure, I have so much more energy. I don't get out of breath walking up stairs, I can cycle for longer and harder, taking spin classes at the gym, and most noticable of all is that I can actually swim without gasping for air and panicing. It's the single best thing that I've ever had done.

Now I'm training, so that I can hopefully take part in the BHF London to Brighton Off Road  Course next year.

1 Like

Well done Neil, you're an inspiration to others, keep up all the hard work.


Well done, Neil!

What an amazing and inspirational story - thank you for sharing as it's very motivational for all of us.  You will surely continue to go from strength to strength laugh

Well done Neil

Your experience sounds very similar to my own.

Your story has given me the encouragement to seek the answers I need as to why I am still having strokes even though I have taken the necessary precautions.

Thank you 

Hi I have read about a number of people who have been misdiagnosed with dizziness,  I never had all the FAST  symptons when I had my stroke. Anyway  your doing great  . Well done. 

I was the same, treated for labyrinthitus, didn’t have the usual stroke symptoms, funny enough, Ive never had labyrinthitus again since


Thanks so much for sharing your story Neil, I had a stroke last Tuesday and they think it’s linked to my heart as I had an undiagnosed heart murmur. It’s fantastic that you have have raised so much money and have been managed to complete so much exercise - you’re amazing!