Does anyone relate to my experience

I was born with SVT, a heart irregularity which I managed well. In 1998, a bout of junctional tachycardia resulted in my heart having to be medically stopped in coronary care but I didn’t let it interfere with my busy professional life and returned to work next day. Four weeks later, arriving home from work I was doing the laundry when I experienced a buzzing noise in my head/ear and slumped over. I thought I’d just overbalanced but when trying to get up found my right leg and arm had no feeling. I crawled, dragged myself to another room to a telephone, overcome by the worst headache I’ve ever experienced which was accompanied by disorientating double vision. I was perfectly lucid throughout and managed to use the phone to contact my daughter but discovered that I couldn’t talk properly as my tongue felt as if something was gripping it, so my speech was slurred. Fortunately my younger daughter unexpectedly arrived and I heard her use the telephone and say she thought her mother had had a stroke. I was admitted to hospital (although I had heard the paramedic say my blood pressure was in my boots and ask my daughter if “her mother hit the gin bottle”. Her response was that I neither smoked not drank alcohol.)

Since it was Friday night, I received no medical treatment, apart from blood tests. Then, 3 days later, on the Monday, I had a scan. Gradually the feeling in my limbs returned and I recovered my speech. Nothing about the cause of my condition was discussed with me although I did have a lumber puncture on the Tuesday. I was eventually discharged after about a week with no explanation or follow up and I returned to work as normal.

I was a regular gym goer, vegetarian, non smoking & drinking and weighed 7 stone but I then started suffering an abundance of symptoms following my “episode”. The only person who gave me any kind of explanation was my cardiologist (private, not NHS). He said, related to my heart issues, I could have had a TIA which had healed and left no trace by the time I had the scan 3 days later. I had to start using a walking stick, experienced awful debilitating balance issues and dizziness. This was diagnosed as vertigo by a GP specialising in ENT, though medication didn’t help. For a time I also suffered confusion, not recognising my husband and asking him who he was, not knowing whether it was daytime or night time, thinking I was in my childhood home and walking around the house at night looking for my long deceased parents bedroom. A myriad of other symptoms but all these were put down to other causes by my GP.

I coped at work for almost another 11 years, in a high professional capacity until retiring at 63 in 2009. My hearing had declined after the buzzing noise in my head and I wore hearing aids. An MRI scan showed I did not have an acoustic tumour. Although I led a very active life, travelling to USA many times with grandchildren, fully participating in theme parks and such activities, I could no longer tolerate the dizziness, balance issues and fatigue which kept me in bed for several days at a time. I then had a private MRI scan in 2017 which identified brain damage from an old stroke. The irony here is that the 2014 MRI had also highlighted this to the GP but it wasn’t acted upon as he was just looking for an acoustic tumour. So, almost 20 years later I saw a stroke specialist who told me that I’d had a large stroke in 1998 which had left me with significant brain damage. He added that he had no idea how I could have possibly compensated with this, just that I had - and then told me I must be extremely tough, saying that some people just are! He also added that never in all his career had someone been referred 20 years after having such a large stroke with such significant brain damage. My periods of severe dizziness, sickness and fatigue requiring bed rest were explained to me as occurring when my brain cannot compensate at such times of stress, other illness or even excitement; ie not being able to cope with everything at once . This was hard to understand and accept

My daughter said later, “Mum, he said you are a miracle”! The GP practice apologised when I asked for my 1998 medical notes which showed they’d recorded I’d had a bad migraine. They also apologised for not acting on the 2014 MRI which had highlighted the brain damage. I was told I that could make a complaint but I said I didn’t want to get anyone into trouble. It wouldn’t achieve anything. The hospital notes to the GP practice showed that my admission had of course been for a suspected stroke and nothing more was forthcoming from them. I am surprised that my admission with all the symptoms of a stroke, to the same hospital which had stopped my heart 4 weeks earlier, had not been connected. I understand the current practice would be to give blood thinners when medically stopping a heart but at that time I didn’t have these. I feel a bit let down and abandoned although I wouldn’t have done all the things over the previous 20 years had I received the correct diagnosis in 1998. I still go to the gym daily, at 78 and stick to my healthy life style which I believe must have helped me survive to this age. I recall all those years when I wondered what on earth had happened to me that time in 1998 if it was t a stroke, as I’ve never felt so ill in all my life. But now I know. It was a stroke. And a large one at that. I understand, take all the stroke meds and I cope with all my various symptoms. Sometimes I am glad I hadn’t known as I’d have been prevented from many activities which I’ve managed to enjoy.

Although I would not wish my experience on anyone, I wonder if others have been similarly overlooked.

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Hi @Casey1264

Welcome to the community.

I’m sorry that you’ve had this experience, I am, however pleased to hear that you’ve lived a full life and done the things you wanted to do.

I hope that finding out about the stroke has at least given you some answers as to why you were having those symptoms and that you can find a way to manage them going forwards - there will be lots of people on here that will be able to give you advice on that. There may also be some that have, unfortunately been similarly overlooked.

I’m sure there will be some of the community along to shortly to speak about their experiences.

Anna

@Casey1264 hi & welcome to the community. You have definitely been through it over the years. It is hard to believe that such a large stroke wasn’t picked up at the time but it sounds like you are one very tough cookie.

I have heard of people being misdiagnosed. Migraine is quite a common mistake made. I remember my stroke consultant telling a medical student that they see a lot of people in the stroke clinic who have bad migraines as the symptoms can be quite similar.

Good to hear you’ve been making the m9st of your life despite your issues.

Best wishes

Ann

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Hi and a big welcome to this community. It sounds like you’ve had a very interesting life despite your health issues over the years. I would like to say that your misdiagnosis is a rare occurrence but unfortunately that is not the case and I have read many cases where a similar thing has happened.
We are a merry band of stroke survivors who have suffered many different types of stroke and are on very different roads to recovery and I’m sure someone here will have experienced something similar to you.

I wixh you well and hope that someone here will be able to share a similar story with you.

Regards Sue

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Thank you for your most kind comments which are very much appreciated.

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Hi Sue. I’m very appreciative of your supportive comments and grateful you took the time to respond. I did join the community some time ago but have never felt that I should be complaining after I’ve managed to cope (albeit sometimes struggling) for all these years. When I found out in 2017 that I’d had this brain damage for so many years it was a shock. I found it all quite difficult to accept and felt very alone and isolated. Even following the community, I still felt a bit of an outsider, didn’t fit in etc, since everyone seems a much more recent stroke survivor. It didn’t help to find out that my medical practice had the results of an MRI showing my condition and hadn’t actioned it. My medical notes now show the stroke dated 2017 although it actually occurred in 1998. It feels odd. Offloading tonight has been a great help and I feel there is support and understanding around me. Thank you, I am so grateful.

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ah, the power of the mind, and the biology of belief. It runs us. Well done, you, Casey.
ciao, Roland

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You are absolutely right, Roland. My own philosophy. Face it head on and if that doesn’t work, then head butt it! Haha.
Thanks though.

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Hi Casey I was also misdiagnosed by my GP surgery but fortunately not over the length of time as yourself nor with as severe symptoms, I got up one morning and felt there was something wrong with my left arm which felt extremely heavy and my hand just didn’t work properly,I couldn’t hold my hair between my fingers when trying to straighten it so I called the surgery and got an appointment the next day with the nurse practitioner who diagnosed whiplash after id said I’d been involved in a very minor ( no impact at all)car collision and was advised it could take up to 3 months to heal however 4 days later my left eye and corner of my mouth felt droopy and found myself dribbling slightly so I went back to the surgery again seeing the nurse practitioner who now diagnosed bells palsey even though I could still move the rest of the affected side of my face i.e raise both eyebrows and smile then 5 days later i got out of bed and my right leg was very swingy ( the only way I can think of describing it) so off i go again to see the same person who finally decided to take my BP only to discover it was through the roof 220 was the top number i can’t remember what the bottom number was so this time she said i should go straight to a&e which I did , they did a ct scan almost immediately and discovered I had indeed had a stroke I was admitted that night after they gave me BP tablets but couldn’t get it to drop to a safe level to send me home ,fortunately I was treated very well by the hospital and got sent for a MRI scan the next day which again confirmed a stroke on the right side of my brain, my BP had now dropped to a safe level so I was discharged with blood thinners,bp meds and statins ,i ve still got dexterity problems with my hand and as a hairdresser for 32 years i won’t ever be able to do the job I love again but every thing else returned to mostly normal although my speech is sometimes difficult especially when im tired and my left side is weaker than the right…I know my story isn’t nearly as bad as yours but I understand the frustration of being misdiagnosed initially and it took a long time to come to terms with the fact that it could of been a lot worse. Sorry if I’ve been too long winded lol sometimes I can’t stop when I start :joy: … take care

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I feel so sorry for you, Tracey. I’m pleased you posted this and I was very interested to read it. Thank you. I can quite understand how frightening you must have found your symptoms. You say your stroke wasn’t as bad as mine but I don’t see that as the case at all and we can’t minimise these things. It beggars belief that you were seen only by nurse practitioners and not GP’s. Who knows, had you seen a Doctor, then your outcome might have been different. I wonder, if you’d had your scan and treatment immediately, would your recovery have been better? Would you still have been able to keep doing the work you loved? You didn’t say how long ago this all happened but I hope you were eventually able to work again and perhaps the nurse practitioners learnt when to refer to a doctor.

It’s 26 years ago this month since my admission with a suspected stroke, unable to speak properly, without any feeling in my arm and leg and vomiting profusely from the most excruciating pain I’ve ever had in my head. However, I found it a benefit that I remained perfectly lucid and can recall the entire experience even now (though I later did go off the scale at home :joy:) Had equipment, like scanners etc, been used over the weekend in NHS hospitals, I might have had the benefit of immediate treatment. I don’t think I was actually misdiagnosed, more like I was discharged without any follow up and have no idea why the surgery didn’t put the reason “suspected stroke” admission on my records. Hopefully things have improved but I suspect it’s still the luck of the draw. But, like me, I’m guessing you also ask yourself “What Ifs.”
Thank you for your post, Tracey. I hope you’re coming to terms with your bad experience and that you are coping with the lasting effects of your stroke.

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Morning Casey my stroke was 2 yrs ago now and I’ve improved massively although my hand still fails me sometimes,I have to really concentrate to make it do what I want so hairdressing is not possible now but I’m grateful that my mobility has returned although my left leg is weak so it takes effort to do things, I’ve recently been diagnosed with peripheral artery disease and now have a 30% narrowing of the artery in my leg ,I’m waiting for a referral appointment to see if this can be improved but in the meantime I’m told that walking is the best therapy so I do as much as I can and try to stay positive but I don’t think the fear of another stroke ever leaves you but giving up is not an option, at 55 I hope I have many more years to enjoy life so I’ll do whatever it takes for that to happen. I hope you’re feeling much better now :smiling_face_with_three_hearts:

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Morning Simon it’s frustrating isn’t it, because we’re told that time is of the essence yet it sometimes feels that’s a one way street when it comes to GP surgeries,I refuse to be seen by anyone other than a doctor now and my present GP is great and very empathetic so I’m grateful for that because at the end of the day our life is in their hands and we have to trust that they’re going to act in our best interest.I hope you’re recovery is going well :smiling_face_with_three_hearts:

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Hi - and thank you for getting in touch, Simon. I’m so sorry to learn that your strokes have affected you to such a degree and hope that you’re still progressing further with your recovery. And getting the support which you need.
I joined the forum a year ago but have just posted my story for dual purposes. Firstly, I still felt confused about how the hospital who had medically stopped my heart four weeks earlier, failed to tell me that this had obviously caused a blood clot which then led to a stroke. Secondly, I felt quite alone and was reaching out to see if my experience was replicated. It seems the comments I’ve received indicate that many of us survivors do feel let down. However, it doesn’t comfort me to know that we all have a similar story since I understand too well how this has led to much distress. On a positive note though, we did survive whereas, doubtless, many did not.
I sincerely wish you well with your recovery.

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Hi @Casey1264 and welcome the forum, I know I’m late but better late than never hey :wink:

There could very well be other replicates, all loitering in the background for similar reasons to yours, the silent ones, I call them :blush: I felt a fraud when I joined here, so many were so much worse than me. But when I really need to know things I don’t allow myself to shy away asking.

Your story matters! It’s invaluable, particularly to new members so very early in their journey towards recovery. You show them light at the end of the tunnel, that there is hope, there can be life after strokes. And you may find you have a lot of useful advice to pass on to others.

So anyone else loitering in the background, if you have your story to tell and feel like sharing, just get typing. It’s part of what this forum is all about :smile:

Thank you for sharing your story @Casey1264

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Thank you for your lovely uplifting message. You say that new members may benefit from my story but actually I’ve found that I have also derived a lot from helpful, relevant information which has helped me. Yep. After all this time. I’m lucky in that I knew the cause of my stroke i.e, having my heart medically stopped to establish its correct rhythm. Being born with it, I was well used to my heart irregularity (SVT) and was blue lighted from work, had the procedure and returned to work next morning. I can remember being told in the coronary care unit ‘Now your heart will actually stop beating, but it will start again. But even if it doesn’t, (gesturing around at all the equipment) we have everything here to make it start’. I was not phased by this procedure though may well have been had I been aware that it could cause a blood clot. I add this purely as advisory to anyone undergoing the procedure to ensure that they receive anti clotting medication. It may help someone else.
Thank you again for your kind welcome.

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Yes ladies , it came as no surprise to me your posts. Ok four years before my stroke got stung by one of my bees which gave me a stonking headache, never had headaches. Was a fit 68 , a vegetarian ,never a smoker. Wife concerned as I never had head aches and took me to A&E. Doctor dismissed bee sting, BP not checked said he’d prescribe a stronger pain killer, dismissed. Sat to the side, nurse passing without introduction stuck a thermometer in my mouth and called doctor as I had a hell of a temperature. Spent four days in hospital, lumber puncture. No diagnosis, then said it was a virulent virus, put on antibiotics. Giving blood a few weeks later Blood transfusion nurse , antibiotics for a virus ?. Four years later had a dizzy spell few days later slurred on phone just for a minute, joked about it” honest haven’t been drinking. Same thing two days later, week past , went off to work ended up on knees staggered around like zombie. Got Home wife thought I’d eaten fungi which I do, but not hallucinating sort. Rushed me to hospital during covid crises. By now I was in full Zombie mode. Wife not allowed to be with me, could not explain, this is not not normal me. Only said , he may have eaten fungi. Wife leaves me for hour. Come and collect him told. Hour journey home, crash around bedroom a very confused old fella. Ambulances busy, wife drives me back to A&E. Have BP test 200➕ . Damage done, three week holiday courtesy of NHS. Bleed on right side, loss of peripheral vision from both eyes on left. Four years coming up, adapted to vision loss, no physical problems. My first four day hospital stay may not be stroke related, but was never explained. The doctor that missed taking my BP on my second visit should have picked up my stroke symptoms, but it was chaos all around due to covid , he said “your a bit to old grandad to be taking magic mushrooms”. No hard feelings ! The damaged had been done hours earlier and nothing they could have done then could have helped.

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So sorry to read about your awful experience. We know our own bodies, don’t we and we know when something isn’t right. The doctor’s remark about the magic mushrooms was rather flippant, don’t you think! Certainly not helpful. Rather like the paramedic asking my daughter if her mother hit the gin bottle. I still remember it. Like you, I experienced the slurring speech. I found it so hard to keep explaining my symptoms whilst feeling as if something had hold of my tongue.

You got there in the end but it sounds quite traumatic. I hope you are coping well now although I must say that you really seem to be without malice and very accepting of your difficult experience. Take care.

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