After such a long silence I thought I would update where I am at. I have had a lot of support throughout this process but particularly in the early days I had a hunger for information and other peoples experiences - when the anxiety was 'feeding on me' and just wanting to know what might happen next. I mainly take the time to write this in case someone reads this at that same stage and it can help them as an example of how things can go.
Yesterday I had my last 'expected' medical appointment and now I feel like life just goes on with only minor things that I hope will correct themselves and return me to be 'totally normal'. I still seem to have these random 'minor' fatigue events, although it doesn't restrict me from much. Also I feel like i am finally on top of the anxiety, although I feel like i have become quite skilled in identifying and dealing with that. That 'last' appointment has made me feel even stronger in that area and I hope its gone for good.
But that is one important lesson for me, take each day as it comes and don't be impatient or have 'expectations'. When something doesn't go how you like it is not a setback, its just part of the journey. Be grateful for the good stuff.
In hindsight I think it all went well and my only constructive comment would be in relation to communication and being able to understand what was going on. Maybe it was being discharged on a Sunday afternoon, but eventually via the GP we managed to get the discharge summary mentioned above - that's really important to ask for that and i think is was just a Sunday arvo oversight.
The tests did come and continued a positive story on my health. My GP has been great throughout and right back at the beginning he suggested it was important to keep up with the public system because going private with a neurologist would probably introduce even bigger delays. But he said there were some things I could do privately that may assist in the process and put my mind at ease sooner. Within about a week I was able to get echo-cardiogram and 24 hour halter monitor done via 'SA Heart'. After that TIA, the ED doctor I think could see my concern and did the referral for ultrasound of my carotid arteries that was done within days. I got in within a couple of days on a cancellation, and i hope that didn't put anyone out. I got the feeling the stroke clinic people were a bit miffed that this was ordered and done when it got to the stage of them organising appointments. I make no judgement on their workloads or pressures on the system and the best timing for this to be done. I can only explain that when this thing hit me out of the blue, no discharge summary and words that the clinic will get on to me 'at some stage'(with no timeline) and then followed by the TIA, my head was spinning a bit. The action of that doctor and the few minutes of ultrasound that found well shaped arteries with no sign of plaque, that was tremendous comfort to me - 'something' was happening.
The heart monitor was all good but the echo suggested that there was possibly a hole in my heart or a 'PFO' I think they called it, which 25% of the population also have. I then had an esophageal echo-cardiogram which gave them a better look and did show a bit of deformity of this PFO and a judgement call, partly based on how good the rest of my health was and my age of 55, that they would be happy to go in via an artery in my leg and close it and that was done on 10/8.
Meanwhile, I don't know if getting tests done privately helped but instead of what i was told was a 23/8 appointment with the TIA clinic, I got to see them on 2/8. It was interesting to see the CT scans, that the clot itself you could physically see and the huge area of my brain that was indicating oxygen depletion. It really brought home that one moment when i had a decision - 1. I don't feel quite right but I have done my 'FAST' self-tests, surely this will pass and i don't feel that bad, so continue down to the shed where my wife or anyone won't expect to hear from me for hours or 2. I don't feel quite right and i have done self-tests... but maybe i will just go back in and let my wife know what happened and how i am feeling. Also some questions from my well researched scientist wife seemed to help lead to a decision to refer me for an MRI - results of which have shown there is no sign of permanent damage to my brain and that's comforting to know, particularly given what i will chat about later. This timing was good too because i wanted to check with the stroke people if they had any opinions on what the cardiologist was suggesting. It really did come down to be two different disciplines though, so I just went with the cardiologist advice. To my mind, I know there can be no explanation for why this happened, but if there is any chance it was from the PFO then that is a chance i wanted to exclude.
The appointment with cardiologist yesterday confirmed that the closure had 'sealed' within 24 hours from the echo they did in the hospital and now they will just do one more in a year to double check things. So physically it couldn't be better.
But...... the real challenge for me through all this has been in my head and then how that plays out physically. Initially i got my best help from here - via links to beyond blue and helpline info on dealing with anxiety and also my GP. I've never had any 'real' anxiety before and i now have a much greater understanding that i can use to help others in the future. For me the slightest trigger, that at first i didn't even realise were triggers, would have me feeling 'not right' - which takes me back to 29/6 and that decision - do I ignore it and hope it passes or do I act when I don't feel right. Night time has been the worst for me. Waking with tingliness in hands, lips, feet and sharp pains in my feet. A few health direct calls were made over the time and they were good in working through what was the right action. One saw me in an ambulance to hospital but as I understood it, because tingles just in hand and not further up my arm, they didn't think it was related. Please don't self-diagnose off anything i say here, but this is what has worked for me and maybe you can use it as discussion points with your GP. If anything is wrong, that 000 number is the only thing that will save you. What my GP explained is that the anxiety can set up shallow breathing, that i won't necessarily notice and this leads to build up of carbon dioxide and from this comes the tingles. He said as a general rule that stroke related stuff will not be painful like in my feet, and numbness etc will be one side and not both. I have used this for a pattern of actions when i am woken up and feel distressed - start with slow deep breaths, counting to 5 in, pause and to 5 going out, trying to get the oxygen into my blood and calming myself. I go through my FAST checks reassure myself its not a stroke and check my pulse (for me always pretty low) and feeling the regularity of the beat. Still, at first it seemed like nothing would settle me to a point i would go back to sleep, and i would lay awake or hours, or go to another room and quietly watch something boring on TV. Then one night i felt really tired and just wanted to go to back to sleep and i snuggled up to my (long suffering!) wife and that simple contact just seems to put me at ease and allow me to drift off..... I think the total amount of disturbance to my light sleeping wife is much less overall by doing that.
For around about a week or so now I have been sleeping through. I can still recognise effects of anxiety at times, usually the trigger is when I tell someone new about what happened or public speaking - I gave a talk about a career in science to all the year 6 and 7's at my sons school and also we run a monthly nature club for kids through our national park friends group - usually i love that opportunity to mentor and encourage young people but currently it makes me feel very uneasy and after quite drained. Its still important to me to do though and i do hope that will improve.
I think the words on the beyond blue site was something like - get to know your anxiety and how you can control it or words to that effect. For me its hard to describe but its almost like i can feel a chemical going through me and i am right onto it now. If I'm around people I know I tell them and at times been known to use a four letter word to tell it to go away! I am having consecutive days without it now and I hope that builds and builds, but if it doesn't, I'm ready for it. I did have a couple of 'panic attack' level events towards the beginning but once i worked it out that hasn't happened again.
Well that's all i can think of to say. I know some people have done it a lot tougher and i do have empathy for your situation and I doubt what i have said helps you. But hopefully someone like me reads this who has been lucky and got to care quick and it will help in those early days of distress of what's going on and the anxiety.
