My Stroke Journey (from start to 4 months)

My Stroke Journey

First Month

On the 9 Jan 2023, age 44 yrs,(2 days prior to my 45 birthday) I woke with a mild headache with kaleidoscope vision in my left eye, I went to work as normal, I run my own pet minding business. I completed 2 customers’ homes pet feeding needs, dropped my daughter to primary school and went home to sleep off the mild headache.

Later that afternoon I completed work again and around 5pm I noticed my motor skills, cognitive skills where failing me, I texted my partner and he noticed nothing I was texting was really making much sense and one message made zero sense. He informed get to hospital you are probably having a stroke, every 2 counts as your brain is dying.

I had my son drive me to our local polyclinic hospital, upon arrival I informed them that I think I am having a stroke, they admitted me and monitored me, I was released a few hours later advising to return in the morning for a CT scan.

I attended the polyclinic hospital the following day to complete the CT scan, the hospital clerk later informed my results come back normal, nothing is wrong. I replied “I don’t feel normal”, she said “follow up with your GP”.

I made the next GP ‘available’ appointment for 18 Jan and spoke with my GP whom informed he insisted I have a MRI as he is confident I have had a stroke.

I booked my MRI appointment conducted a few days later, on the return drive home from the MRI clinic my GP called advising to prepare to pack a bag for hospital, his calling John Hunter Hospital now and will call me back asap.

My GP called back and advised JHH didn’t have any beds available and didn’t feel I needed to be admitted. My GP informed to get to his office asap to discuss my MRI results and what steps next.

Upon arriving to my GP’s office he informed my results, my MRI revealed I had a recent ischaemic stroke on the 9 Jan 2023 and a prior embolic stroke a while ago.

This news was a shock to me! One that I had a stroke and to find out it was my 2 stroke unaware I had already previously had a stroke.

My GP ordered more medical tests to be completed to find out the source/reason for my 2 strokes. The medical tests I needed to complete where;

*MRI Scan (20th Jan )

*Several blood tests (5 tubes) (20Jan)

*CT Scan with dye of the aorta (23 Jan)

*Ultrasound on neck (24 Jan)

*Ultrasound on heart – Echocardiogram (27 Jan)

*Heart Monitor (30 Jan)

Second month

Attended my GPs to gain results and was informed all tests come back good, no cause found.

Third month

JHH Stroke team booked their next Neurologist appointment for 6 March.

After attending my appointment the Neurologist arranged for more tests to be completed to find out the source/reason for my 2 strokes.

Ultrasound on legs (17 March )

Several blood tests (10 tubes) (22 March)

Bubblestudy ( 24 March)

Fourth month

Heartbug Monitor (30days April)

Fifth month

Attended my Neurologists again on 1 May to gain results and was informed all tests come back good, apart from the Bubblestudy, which revealed I have a PFO – hole in my heart.

I have been referred to a Cardiologist to explore surgery for a PFO closure.

10 May Cardiologist called and booked their next appointment for 15 June 2023.

Symptoms since my stroke. – During the period since my strokes and all the testing I have suffered from many symptoms, some have improved over the past 4 months and some I am still trying to seek help with. I was given no rehab so have to seek help to help improve my last symptoms and return to normal life again.

After my stroke I felt like I had been severally hit over the back of the head and still trying to gather myself and thoughts. The right side of my body often my face muscles would droop and restrict/tighten, my arm and hand would often cramp and the muscle cramps in my face, jaw, arm, hand, leg and foot would be intolerable.

Thankfully these symptoms have improved over the past 4 months, mostly only trigger when I explore re-trying something I have always done. In the beginning loading the dishwasher was exhausting and would trigger my symptoms, it could take all day to load the dishwasher as I would need to rest for my symptoms to subside (often nap from fatigue) before I could continue. As with each attempt to a try a task, this occurs. I have gradually relearnt how to clean the house, still mastering how to recook, complex dishes eg butter chicken for now is my new achievement. I am exhausted from neuro fatigue after and my symptoms will flare up also. Completing paperwork in my next challenge I am trying to achieve as this drains me quickly and flares up my symptoms quickly. I can only attempt 20 mins max and then to rest or nap to recover from the neuro fatigue. Phone calls are also another challenge, processing the information in the call is mentally draining and I often need a nap or lay down after. My attention span will reduce massively while I deal with my symptoms. Drafting this has caused my symptoms to flare up several times and I needed a nap several times during writing this over the past two weeks.

Chemists, Medical Centres, Local Corner Stores, Shopping Centres, are rather overwhelming, my symptoms are set off very quickly!

Almost daily for 4 months I have had mild pain in my heart region, we are coming to the conclusion this is muscular as I have been unable to be as physical as I was prior with my daily work duties. Now I have been informed by my neurologist from all the testing they have discovered I have a PFO- hole in my heart and will require surgery. I’ve been ordered to only do mild exercise, No hills, no excessive exercise until after surgery.

*I created a list of the symptoms I still suffer 4 months on from my 2 strokes, which I have spoken with my Neurologist about, which I have attached below.

Invisible disabilities

Cognitive Skills – paperwork

• Conversations
• Processing information

Sensory Issues – Light

• Sounds – birds, repetitive noises
• Sudden loud burst of noise
• Loud noises
• Some peoples voices
• Some music tones
• Police sirens etc
• Harley Bikes, loud trucks, noisy cars

Dizzy – occasionally within the home

- always on walks

- Customer homes

-kmart/ shopping

-socialising

Dizzy more when re-trying old activities –

• Cleaning - Work - Shopping
• Socialising - Art-Paint - paperwork

Stamina? – unable to walk far (13mths later worked out it was a balance issue)

Fatigue – often – physical has improved, not as bad as first month –

however been less physical since my stroke, as unable to walk customers dogs.

Neuro Fatigue – hasn’t improved. Creating this has caused severe Neuro Fatigue, nap time to recover now.

I have not been given any rehab to date, despite advising many medical staff of my symptoms, no one has offered any suggestions of who can help. Most say "yes that is normal" they never suggest any help services or support groups.

I had to discover the Stroke Foundation myself, which I feel is odd they where not even mentioned to me and no support or help is offered after you have a stroke, its all been medical tests and appointment so far for myself....it looks like I will have to create my own rehab and hopefully find someone who understands.