Functional Neurological Disorder, my story! By Lola Louise

By MediaMonkey

November 29, 2023

Imagine you’re suffering multiple symptoms every day and have no idea why. Then those around supposed to help you have dismissed your reality as one condition, even when the symptoms in no way fit it. Most around you are convinced into thinking it’s mental, while your functional ability is declining and declining to the point you are completely different to who you were years ago or even months ago. You lost control of your emotions, your thinking ability, your stress tolerance and forgot words exist.

Welcome to my life 5 years ago. Or I think it was 5 years ago, I wasn’t very self aware until this started in March 2018. Now looking back at previous years, I’m like “oh, that would have been part of this too.” Let’s start at the root cause.

In 2014, I lost someone close to me and my family very unexpectedly in the Summer. It hit hard. Unbelievably hard, I suppressed my feelings as I didn’t think I deserved to be as upset as I was. It was my first big loss and for someone to be in my life almost every single day and then, never be again. It still upsets me today as it’s something I can’t get over. It caused a ripple effect around me. I never thought I had to deal with it, I thought trying to move on would heal, it didn’t. I was young and naive. I always targeted the things in the ripple effect and healed from most of them but never the start. I don’t think any amount of therapy will help me accept the truth.

After this, I was emotional all the time, crying, I couldn’t be around people as much, I lost the confidence I had inside, I was on edge, a wreck, constantly breaking apart and being so dizzy. I never spoke about the dizziness part as I didn’t want attention on me. Being “dizzy” was a trend at my school. I hated being looked at and talked about. Unknowingly symptoms were taking ahold. One of them being pain in my muscles and my legs locking in place. When I mean locking, specifically my legs would be stuck in one position. I had to drop PE because of it. There were times my legs would just give way. There was too much mental trauma that a lot is a blur to me. All I know is I was barely in class through the most important years of school.

2017, my legs locked again. It took hours to unlock. I couldn’t walk at all. A few times this happened throughout the year. Then not again.

Skip to 2018, I was 18. I was on a relative high, I was enjoying life. I thought I was finally back. I was mentally free to be myself and loving it. I was modelling, acting and had ambitions. March came, it was beast from the East. I got so ill one day, it came over me within minutes and I was lying on the bathroom floor completely numb and dizzy. Could barely move. It went away for a few days and then it came back. I was ill for two weeks with headaches, dizziness, dissociation and more. I became constantly paranoid. Couldn’t do anything I wanted to. Hallucinations started to kick in. I was constantly afraid of everything. I lost loads of days to dissociation and I still feel bad about it. There were times I couldn’t remember anything I said or done. Usually people would bring up things we did and I couldn’t believe them. It was scary. I would say anything at all apparently as when you’re not right up there, there’s no restraint or common sense.

This part was the un-dealt with PTSD, that I didn’t know I had. It is to blame for some symptoms but not others. I ended up on anti-depressants as it looked mental. These gave me episodes of symptoms for a while then they disappeared. These erased loads of symptoms but sadly made my brain go into cloud 9 mode. I was delusional as can be. I was completely vain and so self absorbed. Looking back, I’m honestly disgusted at it all. It was scary. The only good thing was I was confident. My dose was upped and upped till they stopped working. I came crashing back down and symptoms started full force.

Hallucinations with voices and people, delusions, paranoia, twitches/jerks, self-hate, headaches, self-sabotage, delirium, numbness, dizziness, throwing up for hours, blackouts, suicidal ideation dissociation and more but as episodes only. Turns out PTSD was the driver in charge. Any stress and episodes of symptoms start. Strong emotions ended up in an episode. Chemical imbalances and much more. I kept thinking I was crazy as most didn’t believe me at all. I started getting episodes almost weekly and they were completely destroying me. Ruining things.

It wasn’t until I completely blacked out and I’m pretty sure I was unconscious for 40 mins. I only know this as I was listening to audible, I can’t stand noise when going to sleep so would have turned it off. 40 mins went by. I lost most of the story. This has potentially happened before too, I think my brain just shuts off. I was very worried at this point so went to my doctor yet again. I was there almost every two weeks over a whole year.

I finally got an appointment with neurology after a 6 month wait nearly, a year after begging I needed to see one when absolutely delusional. I was diagnosed with functional neurological disorder, it’s basically like if the software of your phone/computer is glitchy. That’s my brain, it’s a glitch. Some days I’m completely fine, these are a rarity, others, it’s absolute torture. There’s no determining what the day will bring till it starts. It’s unpredictable.

Is there anything that can be done?
No. Only certain symptoms can be treated and I don’t have those ones. I got told since I took the diagnosis so positively that I would recover with positive thinking. Yeah, that’s never worked for all the times I did try.

How do I cope?
I don’t. The best I have is to put a cold patch on my head, stick Audible on and hope it doesn’t last. Most times I’m on the bathroom floor as I find it hard to even move.

How I explain what I go through…
It feels like electric currents going through my body and sizzling, Feeling cold suddenly in a warm room. Pins and needles leading to numbness. Feeling like I’m going to be sick. Staring into space feeling like you’re not in control.

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