Discombobulated - stoke at 40!

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Good evening everyone,

Been leading up to posting my story for ages. Adter lurking for the last few weeks, finally think I’m ready.

So hello, my name is Emma. I’m a 40 year old mother of three and a midwife by profession. I had my stroke almost 2 months ago now. Here is my story.

I had a fall on the 30th October where I bashed my face and broke my nose. Silly accident with my labrador pulling me over.

Then on 12th November I was at football training with my son when I just felt dizzy and had a pain in my head. A friend got me home and my dad took me to a&e. 8 hours and a CT scan later I left with a diagnosis of delayed concussion and advised to visit a eye hospital about my sighte. But was closing on the day before I could get there. So I was given 2 options - eye hospital on sunday or hospital clinic on monday. The sunday being my twin daughters birthday I didnt want to go so waited til Monday. The Sunday I was sleeping on / off all day and being sick alot. Missed their whole birthday anyway. Monday felt absolutely fine other than a bit blurry vision wise. And No called from the hospital re the clinic. So Tuesday Mum took me to the London eye hospital. They said everything was fine with my eyes and potentially has a stroke and return to a&e. Well my Mum and I were laughing ‘as if’. Anyway back to a&e - triage doctor ‘we wont do bloods or anything as we did them the other day, I dont think its a stoke you dont have the symptoms but as they’ve askes us to investigate we will have to’. She ate those words 4 hours later when she came and told me I had indeed had a left sided occupital stoke. Cue MRI, CT, neck ultrasound, another CT, more bloods and admission for 4 days before being sent home on early discharge protocol.

The stroke doctor said potentially I had an injury in my neck caused when I broke my nose which a clot had broken off and travelled to my brain. Which was confirmed after all the MRI resulrs were in.

Fast forward two weeks and I just got into bed and felt a weird sensarion in my head and arms. Back to A&E and a 10 hour wait to be told I had an expected Heammoragh caused by the blood thinners but wasnt a concern.

I had an eye appointment back in December that confirmed visual field loss on the right hand side in both eyes. It doesnt feel as if my left eye is affected but I can argue with the tests. I have my DVLA appointment next week and am scared stiff. All along Ive said I’ll start a new career but I dont want to lose my independence and driving. (Which I now feel is almost certain, so am prepared).

Lights tend to annoy me. Sitting in my living room with the main light on I feel like Im squinting and makes focusing harder. Ive been on at my partner for about 2 years for a lamp, it took for me to have a stroke for him to get me one ha ha

My emotions are all over the place. Just bloody thinking about emotions have got tears in my eyes. I mostly am feeling out of control. Not driving is my biggest problem - I am a community midwife so used to being out and about in my car. I dont even know if I will be able to continue working as a midwife or not (I have an occupational health appointment on Friday).

Panic attacks - twice I’ve been back to hospital convinced something else is happening but really think it was panic attacks. Now almost everday Im having an episode of this strange increased heart rate, hyperventilating, out of control feeling. I hate it. I have done a referal for talking therapies today.

Wow, I wonder if youre still awake. Sorry Ive gone on a bit here. Ill leave you on that note, but thank you so much for taking the time to read my journey so far.

I dont feel anyone quite understands.

Emma xx

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Hi @Emmap1982 , sorry to hear about your stroke story. It does sound like a few others that didn’t get a clear early diagnosis. I’m really sorry you’ve become a member of this unfortunate gang but this is a great place to discuss things that non strokees probably find difficult to relate to.

It is completely understandable and normal to have emotions that are all over the place (I did and most of us on here did).

Please ask any questions you like on here, there is normally someone that can help or at least relate to a similar experience.

It will take some time to come to terms with the new you, but you will adjust with time. I particularly simpathise as you sound like you may have youngish kids to worry about too. I hope your partner and family are supportive as they can make a world of difference. Maybe get them (not the kids) to have a look at some of the common issues we have to deal with. I know you are a medical professional but it is always nice to hear it from other people that have experienced it first hand.

I wish you all the best on your recovery journey and hope you can stay as positive as possible because I really think that can help your recovery.

Good luck and stay in touch.
Mark

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Hi Emma

I completely understand how you’re feeling. Its still early days for you to process exactly whats happened to you. 7 weeks ago I had a small stroke and no where near ready to go back to work, physically Im ok but suffering with mood swings, anxiety and unable to stand crowds or loud noise! Be kind to yourself and take time to heal.

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@Emmap1982 welcome to the forum although sorry you’ve had a stroke & been given the run around a bit.

I had an occipital lobe stroke too & my vision was affected. As a result I wasn’t allowed to drive for a minimum of 3 months then had to be cleared by DVLA. I know it is a loss of independence but its really important at this early stage that you rest to aid your recovery.

My stroke was caused by a carotid artery dissection. Sounds similar to yours although I had no known reason for it to dissect.

Its normal for emotions to be all over the.place. mine still are 13 months on. I also struggle with noise & lights.

I’d try not to worry about work for now. Easier said than done I know. Focus on rest & recovery.

Wishing you all the best.

Ann xx

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@Emmap1982 sorry to hear about your stroke. I too was not diagnosed at a+e until second attempt. I too have vision field loss, balance and emotional issues, work worries etc I really hope you get a speedy recovery.
Not sure how it works but happy to chat more as it is good to chat to those with similar issues.

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@Emmap1982

Thank you for sharing your story. I can identify with a lot of it!

The panic attacks are completely normal. Do you have a stroke rehabilitation team? I got great support on mental health post my stroke.

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Hi Emmap,
So well written. You can clearly communicate. Really hard to hear the challenge in getting diagnosed. You will be full of ‘if only this, if only that’ but a fall can happen to anyone and no post-dizzy diagnosis is going to change what that was, which was the clot blocking you up. Everything after that made no change.
You have to take the other view of things - it could have been fatal, it could have been worse, some people are born with such challenges etc etc. You survived and will improve every day.
I also suspect your blind spots will not affect your DVLA test? But I’ve never had to do it, so I don’t know. Again, not the end of the world.
Life is a challenge and life happens to us all in different ways. Enjoy and improve what you have.
All the best.

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Shwmae Emma, diolch for sharing your story, and croeso. Do you know what part of your brain was damaged? Panic attacks are irksome things, and I hope you find ways to manage them. Remember that they aren’t doing any harm at all, but the sensations spell out the opposite. Despite feeling like an eruption, panics begin hours, sometimes days before erupting, so it’s useful to become aware of that first indication. It will give you time to put into place methods of becalming. There is also medical intervention, short term management like lorazepam, and longer term management such as citalopram. CBT and Mindfulness are useful tools to use along the way.

So, you had an ischaemic stroke followed by a haemorrhage two weeks later? Was the second a TIA or another stroke?

I had an incident not dissimilar to you, although two years post stroke, when my golden retriever pulled me over and provided me with a rather painful ac sprain in the shoulder. When I take her out now, without a lead, I have to be careful because she shoots off, and then bolts towards me like a missile.

Now is the time to get plenty of sleep and gentle physiotherapy while the brain is in plasticity for the first six months of self-repair. I am glad you got a lamp, the brain requires shadows in order to determine perspective, shape and colour. If light is too bright or too dim, it eradicates shadow and can confuse a damaged brain.

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@Emmap1982 I think the act of writing it all down is a help in itself, this is definitely the place for help and support. You have been through the mill, it is scary and emotions are all over the place. Sending you very best wishes x

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I had my stroke 6 weeks ago, so I’ve only just arrived at this forum and have been watching before I contribute. But your comment about panic attacks struck a chord. I’ve also been to A&E twice for what I now know was panic attacks, but which felt, at the time, like the stroke happening again (with exactly the symptoms you describe).

I don’t have any advice, but, like many others here, at least I do understand.

Best wishes to you.

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@kevpartner welcome to the forum. Sorry you’ve had a stroke. It is difficult sometimes to know the symptoms you need to worry about & those you don’t.

Hopefully you are now managing to keep your panic attacks under control.

Best wishes

Ann

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Hi Emma . Sorry to read your post. Jumping to your last statement “I don’t feel anyone quite understands” I, like so many others feel the same or did or still do now and then. Although we are all unique, we all have similarities ,the uncontrollable emotions that surface now that we have never experienced before. I have been told by the Stroke nurses, this is a common symptom of a stroke no matter what part of the brain has been affected. A cognitive therapist can help you understand the outbursts, as such. Talking to a member of the Stoke support team can help too. You can talk to them about anything, this will also help you understand why your emotions are all over the place. Emma it will get better in time . I know it sounds like a cliche , however it does take time. 4 months down the path and I still have spontaneous emotional times.

Please keep up posted on how things are progressing . :heartbeat: