Anxiety, epileptic seizures and travelling

‘One in three people experience depression at some point during the five years after their stroke. Depression and anxiety are very common after a stroke.’ - Stroke Foundation

Anxiety

I am lucky to have never depressive thoughts pre, and post my stroke but I had post-stroke anxiety - especially the early stages of my recovery at the hospital. It is very hard to write this blog post because it is a sensitive topic and I am very conscious of lots of people are struggling with mental health issues - including stroke survivors but also many other people as well.

I remember I had a little bit of separation anxiety after my stroke - mostly in the hospital and my first home visits, the transition to living permanently at home, and also I had ‘normal’ anxiety related to the fear of my stroke recurrence. My hospital neuro psychologist as well as reassurance from the medical team and family support was very helpful in this regard.

Very soon after my discharge (over five years ago now), my wife and I travelled to Mount Martha (about an hour from my home and the hospital) for two nights. It was a nice break, but I was very nervous about the trip beforehand. I rested a lot, conserving energy and I researched what the closest hospital, if I need help - luckily it was not needed. It was like a mini-milestone to survived the trip and I was happy and relieved to returning home.

Epileptic seizures

Post-stroke epilepsy is very common - especially for haemorrhage strokes.

At the hospital, I had seizures when I was in my coma - but I can’t remember this stage so, in my mind I was not believing it. Obviously I trust my wife to tell the truth, but I was thinking ‘seizure for me’?? It can’t be?? That was the acute stage where seizures are common, but doesn’t mean that a person will continue to suffer seizures afterwards. I was put on a low dose medication to reduce the risk of seizures at the early stages.

I have bad memory with my brother’s epilepsy. My older brother - Steven - has epilepsy for a very young age. I was 12 or 13, I was playing with my brothers in the house, and, all of a sudden, Steven had a seizure. It was very scary to see and the image is still there in my brain. Scarred for life, but I guess, Steven is relatively more scarred, because he has epilepsy and I have a bad memory for this incident only.

After my angiogram in November 2014, I felt relieved and happy because my test was a positive outcome. I was taking Keppra [Levetiracetam] still for my seizures after the stroke but my rehabilitation physician decided to stop my medication because the hope was never develop epilepsy. Post-stroke epilepsy is very common - especially for haemorrhage strokes, but four months later, I had my first seizure (aside the coma seizures which I can’t remember).

I was still in my house alone, watching the channel 10 sports news on the couch, and almost instantaneously, my right arm was pulling up with no control, and I thought ‘I am going to die’. I passed out very quickly - I guessing maybe 3 seconds - but I remember this 3 second vividly. It was the scariest experience of my life.

Lauren returned home 20 minutes later, after having picked up my son from childcare. She could see I was acting differently, but I was not able to communicate what had happened. She was also not sure what happened, but she knew that something wasn’t right. She said, “Paul... are you ok?” and I answered (with my brave face) “I’m fine... why??”. Honestly, I thought I was fine because that ‘3 seconds’ were temporarily removed my memory. She was not convinced, so she called the ambulance I went to the emergency ward at the Alfred - again.

The paramedics were cautious about me - rightly so - and waiting in the waiting room, I had another seizure - a positive of this was I skipped the emergency queue but also more importantly, we confirmed the diagnosis, however I was terrified for the experience. That’s why I am more scarred by my seizures and post stroke epilepsy than my actual stroke.

After lots of back and forward for sixth months - including changing medications, and found an amazing specialist - I had a total of five seizures. I quickly realized that my seizures often happened if I let myself get too tired and didn’t prioritize resting when I need to. The last seizure I had was the day after I finished the 10km walk at the Melbourne marathon event in October 2015. It was a mild one - never passed out and my symptoms - including my heartbeat racing, and my affected arm and leg was temporarily very flimsy. Luckily the seizure eased after five minutes but, sadly, the scarring is still there.

London bound…

I am lucky that my stroke-related epilepsy can be controlled with anti-seizure medicines but it is a mental game - basically I am a little anxious to travel as that’s an exhausting thing for anyone to do and fatigue is the main cause of my seizures. As time goes on and I survive different experiences out of my comfort zone without a seizure, I feel more confident. It is a similar feeling for going to big footy games, big nights with minimal sleep or busy days without a chance to rest and very relevant on travel days.

Aside the scars from my seizures, my anxiety stemmed on my independence for which I had - I and still have - fought so hard for my recovery. If I had a seizure, my independence is on the line - especially for driving which it is very important for me and my family. It is a balancing act.

I love to travel and pre-stroke I was fortunate to travel a lot of countries but post-stroke I am more reserved about visiting and travelling because the anxiety factor, fatigue and possibly jet-lag.

Post-stroke Mt Martha was the first trip, and after that, I travelled interstate few times. I've since traveled to Bali and Thailand three years ago. Each trip, I was accompanied by my wife or a close friend and each time I get more confident to travel however, I am still conserved energy for travel because I don’t know what my limits are. My nature is trying to maximise my enjoyment for everything but especially with travelling. That means less sleep, more late nights out, and trying to enjoy every second.

This month I’ll test my limits pretty soon because I will travel to London for a family function but I am flying solo. Steven lives in London and I am visiting him and his family. London is a long way compared with Asia so it is a big step - especially travel alone. I love to do things by myself but I've realised that in order to confidently do this trip on my own that I had to accept special assistance for the flights as well as for completing forms at customs etc, so my journey will be a tiny bit easier.

Whilst I am always wanting to try return to my pre-stroke normal, which would mean not wanting to take medication, I understand that I need to continue to use anti-seizure medication every day - my prescription is only a low dose - and my neurologist gave a script for a stronger extra medication to use on stressful busy days, like travel days, so I can be extra reassured.

I am feeling a little nervous but also quietly confident I will be okay with this trip. It has been said that ‘time heals all wounds’. If I returned to Melbourne after the holiday with no complications, I will be very relieved and big tick with my anxiety and I will be pushing my limits further for exercise, fatigue and travelling.

Paul

PS. I am not an expert of depression and anxiety so if you need help, I recommend seeing the professionals help. Or visiting Lifeline on 13 11 14.