Ok, so I was overwhelmed with the support I received after posting my first ever blog and got so excited about my next entry – But I had no idea where to take it from there! I turned to friends and family and asked- What is it you would like to know about my experiences with blackouts and memory loss, so that I could go into a little more depth with it all. So here goes…
-Do you ever remember things that you have forgotten and are there ways you can get any of those memories back or do they come back randomly?
During the “big blackout” that I had where I’ve lost 2 years of my memory I have remembered a few random things. Usually something jogs my memory like in 2015 our bungalow got flooded from a burst pipe, we had to live in rented accommodation while our house got sorted. I had forgotten all of this but I used to go past the house that we temporarily rented almost every day and one day something just jogged my memory! I remembered that we had lived there for 2 months! Sometimes I could just be laid in bed thinking and I have to ask ‘was that a dream or is it a lost memory from the past 2 years?’ lol. If you can imagine waking up from a deep dream but when you try to explain it to someone it all seems quite blurry- THAT is how bits of my memory come back. When I have these smaller episodes of blacking out – I tend to loose the last 2 or 3 days and most of that slowly comes back over about a week.
-Do the Drs know if its heredity and has anything like this ever happened to any other family members?
No, they cant see any signs to say that its heredity and nothing like this has happened to any family members, that I’m aware of.
-Do you know you’re about to pass out or is it sudden?
I can never remember what or how i feel seconds before i black out, but during the lead up to me passing out- I will get a severe headache, a lot worse than it usually is. This usually gives me and others around me an indication as to what’s about to happen. Ive been told that I also become very quiet and quite withdrawn from whatever is going on and round me. My partner has told me that my veins In my hands stand out and become raised which I am assuming is to do with my blood pressure rising from whatever is happening inside my body at the time.
-Can you remember your initial thoughts when you first come round after passing out? What goes through your mind when it happens now?
When all of this started it was very confusing and quite scary when I first came around. Id usually be surrounded by my mother and partner and sometimes an ambulance crew. I remember the first couple of times thinking ‘I wonder if I’ve lost another 2 years or if my memory has all come back’, neither of which was right. I used to worry and get a little scared, I didn’t know what was going on and how I ended up on the floor. Now it seems to be a regular occurrence – I wake up knowing what’s likely to have just happened and just think ‘Oh not again’, my partner asks how my head is, whether I’m in pain and what day I think it is. I still have some slight confusion when I come around and I feel quite vulnerable at first but I recover a lot quicker now.
– What was it like when you first blacked out and came around feeling like you’d travelled to the future, how was it adjusting to every day things?
Well I thought it was all a huge joke that everyone was in on! I was determined that it was still 2014, I’d get upset and angry because I thought that everyone else was wrong! The Dr’s were constantly asking questions to find out how much of my memory had gone and I’d get would up and annoyed with them. I did get a little bit cheeky – Id memorise signs around me so that when the Dr’s or my family would ask ‘Do you know where you are now Daniella?’ I’d remember all the signs id seen. They caught me out most of the time though! When I was allowed to leave hospital and I walked into my house a lot had changed in the past 2 years. I became quite upset and agitated with all of the changes I could see around me. I had to ask where so many things were including my own belongings in my own home. But, on the plus side – I had a whole new wardrobe, a lot more money, and a much better partner!
-What sort of tests have you had done so far?
So, when I started getting these horrendous headaches I went to the opticians to see if it had anything to do with my eyesight as I do wear glasses. They noticed that my peripheral vision in my left eye was absent. I had numerous field tests at the opticians and it was handed over to my local eye hospital but apart from slightly bad vision in my left eye, there was nothing serious to be seen and nothing to link it to my headaches. Things with my head kept getting worse, I tried almost every painkiller that could be bought over the counter and they just weren’t touching the pain. I ended up going to my Dr Who organised tests for sinusitis and when that showed nothing and they referred me to a neurologist. Through them I have had a lot of MRI scans, neuoropthalmology tests, an EGG test where they wired up my head and checked for any abnormal activity, and when I was in hospital I had a lumbar puncture done to check for any infections. None of which explain whatever condition it is that I have.
– Do you ever talk to your friends and family about the effects this has on them, it must cause a tremendous strain on your personal relationships?
I don’t think I’ve asked them outright as I believe I know how it must effect them. Obviously my mum, sister and partner are extremely supportive and I understand the strain it must have and still puts on them. Luckily I knew them all before 2014 lol. My close friends are also very supportive and patient and have a slight understanding of what goes on and maybe after reading my blog, you too will have an insight as to what goes on. My work colleagues I think it was most strange for. They had a rough idea as to what had happened but I don’t think it really hit them until I first walked back into the office again. They obviously remembered me but had to treat me like a stranger in a way. They have also been very supportive and helped me while I re-trained for my job again which I’m extremely thankful for.
-Does it effect your everyday life like going out?
It doesn’t stop me from going out altogether, no. I don’t worry too much about passing out while I’m out in public and that hasn’t happened yet. But if I’ve already passed out I tend to be a bit vulnerable for a day as im still getting used to the fact that my memory has gone back a day or two. I tend not to go out by myself very often anyway so I’ve always got my partner, mother or a close friend with me for reassurance. When I first lost my memory I did worry that I’d see someone that I’d met between 2014 and 2015 that I couldn’t remember. Or, I’d worry that I might attempt to speak to someone that I’d stopped speaking to between 2014 and 2015 for whatever reason but I think I’ve caught up with everyone now!
Thank you so much to everyone that participated in helping me to write my second blog – Into The Deep.