The First 'Episode':
The ambulance arrived, and they weren’t sure what they were seeing, but concerned I was having a stroke, they got me in a stair chair, then loaded me into the ambulance. I was taken to A&E where I was constantly asked how much I’d had to drink, and judged when I couldn’t talk to answer questions or uncramp my twisted arms when they wanted to take blood. Eventually when they believed I wasn’t paralytic, I was sent for a CT, things such as aneurism and tumour on the brain being thrown around. If I was scared before, I was bricking it at that point.
I remember going home feeling a combination of things: relieved I didn’t have a brain tumor, embarrassed about making a big deal out of what seemed to be nothing, confused about what had just happened to my body, scared that it would happen again, and disappointed in the A&E staff. I don’t remember getting home, or getting in the house. I just woke up the following afternoon on the sofa. That was the first time… just over 4 weeks later it happened again… then 2 weeks later it happened again… every week for 3 or so weeks I was having these attacks calling an ambulance every time and being sent home where my dad wheeled me around on an office chair to get me back into the house. It was starting to happen every few days, and then every day.
I wasn’t. Mostly because she’d just told me there wasn’t any treatment, and that she was going to send me away from the hospital with an address for a website… I mean, come on… At the time I thought I would rather have a tumour or a bleed on the brain, because those things can be operated on or removed and then they’re gone. This… All I had to cope with severe cramping, migraines, loss of speech, loss of movement in my limbs, all I had was a website, an office chair to be dragged around on, and three jobs I could no longer do.
Treatment & Triggers:
- Stress (this is a big one).
- Being overly tired.
- Trying to lift my legs
- Knowing when I need to stop walking/wheeling (when I’m about to over-do it).
- Managing what I’m doing – so if I know I’m going to be busy on a certain day (a family event, friends gathering, day out, that sort of thing) I won’t to anything for a couple of days before and a couple of days after. Not doing anything involves comfy clothes combined with gaming or crocheting or binge watching tv.
- My period is a massive trigger, so tracking them and knowing when I’m due on is very important. That way I know not to do much around that time as I’m likely to be more susceptible to all my triggers.
My Symptoms To Date:
- Functional muscle weakness
- Functional dystonia (muscle cramping)
- Headaches and Migraines (though my migraines are controlled by a low dose of Amitriptyline)
- Pins and needles/tingling feeling in limbs (mostly my hands). When bad it feels like buzzing
- Chronic Fatigue
- Chronic Pain
- Twitching and jerking of arms and legs, sometimes a neck twitch.
- NEAD (non-epileptic attack disorder)
- Foggy head – get confused easily and my head feels a bit like it’s stuffed with cotton wool
- Mixed up emotional responses… if that makes sense… not sure if there’s a technical term. (sometimes when I laugh I start full on crying, tears and all… it also works the other way around)
- Speech is affected – I know what I want to say, but can’t get the words out, I just make strange noises. This is less frequent now, but used to happen on a daily basis. I would use google translate to type things in and get the google lady to say them out loud in order to communicate.
The End... I Promise:
It's because of all of this that I decided to start up my own Instagram page where I would share my story, experiences and coping mechanisms as well as my achievements and a little bit of positivity. I always say, if you don't laugh you cry, so I'm hoping that one of my posts might reassure someone or even cheer them up. Basically just trying to do my bit within the FND community.