13/04/2023
Hi everyone, It's been a long time since I updated this page and to be honest I got myself stuck in a bit of a rut. I felt like the more I spoke about my disorder and what was going on, the more people seemed to be distancing themselves from me. I need you guys more than ever right now so that was the last thing I wanted to do. The stories I have to tell must seem so far-fetched but when collapsing and having seizures is such a big part of your everyday life, it consumes you and there isn't much else to talk about. But I feel like I have learnt some new information over the last few months and wanted to share my new understanding of FND with you all.
I've been having a treatment session weekly on zoom with a consultant from Queen Mary's Hospital in London. She has been helping me to understand exactly what Functional Seizures are.
Many of you ask me what exactly are functional seizures and why do they happen? So I thought I would take a moment to explain here. As much as I would love to stand and explain to you all, it's so draining for me and often causes days of extra seizures and collapses afterwards as my brain just can't cope with the overload. So this post may be very long and exhausting to write but I'll have a go.
Functional seizures are very real. They appear like a seizure would in Epilepsy. I have been tested for epilepsy and although i had the seizures and collapsed during the testing, the scan was clear, another common trait of FND. Shaking, eyes rolling, loss of movement and feeling in limbs, inability to speak are all how seizures affect me.
They can last from 5 minutes- 45 minutes depending on the trigger of the seizure.
Nothing really helps me to break out of them apart from making sure I am comfortable and talking to me, to try to shift my focus onto something else. Eg. Can you feel your feet? Where are we? What can you hear? Think of a beautiful beach, what can you see, what can you hear, where are your children, are they happy? Etc.
Sometimes smelling coffee can help to bring me out of a seizure as it takes my focus onto something else, but only if this hasn't been used for a while. If you are ever with me when I have a seizure or collapse, there will be a bag of coffee granules somewhere either in the baby's changing bag or in my handbag. The truth is I cant stand coffee 🤣 but if and when it works, its my new best friend !🙏
So the golden question is, WHY are these happening. What caused them? Will they ever go away?
The cause of functional seizures is still a very grey area. Some consultants will say that stress or trauma has triggered them to start and yes, ive had more than my fair share of stress and trauma over the years. It has been proven that the Covid-19 vaccine had a big part to play in functional seizures too and yes I had all my jabs too 😫 who knows. But the bottom line is, everybody has the ability to develop functional seizures if they haven't developed good coping mechanisms in order to deal with life's stresses and challenges.
The way it has been explained to me is like this:- everybody has a pressure cooker in their brain and whenever something significant happens in your life, be it good, bad, unusual, you add this to your pressure cooker. Squash it down and put it to the back of your mind.
Over time, your pressure cooker fills up. Some are better than others at emptying their pressure cooker subconsciously by talking, sharing and getting things off their chest. Others bottle it all up and want to forget about it and just don't have a good coping strategy in place. Until one day, like my pressure cooker, it becomes so full it overflows and explodes and you have a seizure. This is your brains way of shutting down as it has detected that your body is not safe. It can be something so small that sets you off like the flashing lights, a loud bang, a surprise or shock, a high pitched noise or siren, thinking of too many things at once, anxiety, panic, even eating and feeling full can cause it. As you can imagine, there is no way to completely prevent yourself from these things happening every day, several times a day.
Secondly, the part of the brain that is affected is "fight and flight" which you may know as your auto-pilot. Auto pilot is doing things your brain has remembered based on a process of prediction, without the need for you to even think about doing it. For example when we wake up in the morning, go downstairs and make a cup of tea, this is all done using autopilot. We don't need to think about this unless something in the process has changed, like the cups are not where they usually are, or the teabags need re-filling, and then we would need to switch off autopilot and actually think about what we need to do in order to make the cup of tea....
This is where we get to the vital point. For me or anyone with FND, somewhere along the line, something has happened and the wiring to the auto-pilot has become defunct. It is not functioning as it should be or as it used to. This with a combination of the pressure cooker effect I explained above then starts to happen.... you are already living on the edge with a very low threshold and very little space to put things in your pressure cooker. Something happens, lets say an ambulance drives past you with blue flashing lights, this is too much to cope with, your brain shuts down causing a seizure. Then because this is happening over and over again, your brain predicts that this will happen and re-writes the autopilot.... now it thinks that seizures and collapsing is normal.... all of this is happening without knowing it is actually happening or going to happen and with no warning. You cannot actually put your finger on what exactly all of the triggers are as technically you don't know them, your brain has already decided and predicted them for you..... and the vicious cycle continues.
😫😫😫😫😫😫😫
I know this is a lot to take in and trust me, it's taken me weeks, but if you've made it this far, well done and thank you for persevering with me! I would give anything to go back to how things were before but understanding the disorder that I have is a good start to try to manage it going forward.
I also had some bad news today from the consultant which I need a few days to process but I'll be back soon with a post and explain how I am going to try to proceed...🙈
❤️ Lucy x
