What is SCDS? And what was the process like for you to receive a diagnosis?

What SCDS means to me is that part of my Temporal bone (which is the bone at the base of the skull), and part of my Superior Semicircular canal (which is the balance organ) within the deeper inner ear, is missing. Those missing pieces cause all sorts of strange and debilitating symptoms because it affects both my hearing and my balance.

My symptoms came on completely suddenly in 2021. One moment I was getting ready for work in the bathroom, and the next I had collapsed onto the floor with my head in the laundry basket. It was terrifying and came completely out of nowhere.

Before this happened, I had already been receiving treatment for very aggressive migraines, so at first there was a lot of confusion about whether what was happening was related to migraine. When I went to A&E, the doctor told me I’d had syncope and reassured me that I was safe to go on holiday. I went anyway, but while I was away I had three more attacks. The third happened in the back of a taxi on the motorway on the way to the airport. It was absolutely terrifying as I thought that the car was flipping through the air. By the time I got home, I wasn’t fully recovering between attacks anymore, and deep down I knew something was very wrong.

It took two years to finally get diagnosed, and honestly it was mostly down to chance. My usual GP was on holiday, so I ended up seeing a different doctor. That appointment changed everything. He listened to me properly, put me at ease, and told me there was a very rare condition called Superior Canal Dehiscence Syndrome. He told me to go home, read about it, and let him know what I thought. The moment I looked it up, I knew straight away that this was what I had. For the first time, everything made sense. He arranged the scan, and that scan confirmed the diagnosis.

Getting that diagnosis was a huge relief. For such a long time I had genuinely started to think I was cracking up. So many doctors had suggested it was anxiety and yes, I probably was anxious, but I was anxious because I wasn’t being listened to while experiencing these extreme, frightening symptoms with no explanation.

My main symptoms are Tullio phenomenon, where certain sounds trigger violent 360-degree spinning vertigo attacks. I also have disequilibrium, caused by PPPD (Persistent Postural-Perceptual Dizziness), which developed as a result of my SCDS. One of the things that is hard to explain is what SCDS and PPPD do to my vision. They make it incredibly difficult to focus properly, and it can feel as though my eyes can’t keep up with what my brain is trying to process. Things can feel visually overwhelming, unstable, or difficult to track, which makes concentrating incredibly hard. Using computers is pretty much impossible for me for any length of time because screens make the visual strain and disorientation so much worse. That’s why I rely so heavily on dictation rather than typing.

I also experience autophony, which means I hear the internal workings of my own body. My heartbeat sounds like a stream of water running through my head, my eyeballs moving sounds like sawing, and my footsteps reverberate through my head when I walk. There is never really a moment of peace. On top of that, I live with hyperacusis, where everyday sounds can feel painfully intense and overwhelming.

Living with SCDS is hard because it’s invisible. People can’t see what’s happening inside my head, but every single day my body reminds me it’s there. It affects how I move through the world, how I communicate, how I work, and even simple things like looking at a screen or being in a busy room cause a great deal of disequilibrium. At the same time, finally having a diagnosis gave me validation. It proved that what I was experiencing was real, and that I wasn’t imagining any of it. Knowing what was wrong gave me back some control after years of fear, confusion, and uncertainty.

How did your online store The Dizzy Duo come about?

The Dizzy Duo really grew out of one of the most difficult and uncertain periods of my life. As treatments weren’t working and I felt like I was losing control of my life, I knew I needed to do something proactive, something that would help me regain some independence and confidence. That was when I got Pinta.

Even before I had my SCDS diagnosis, I knew I needed support to help me cope with what was happening. With support from Paws for Support, our local Assistance Dog Organisation, I trained Pinta to become my Assistance Dog. Pinta helps me every single day, and she has genuinely changed my life.

One of her most important jobs is alerting me to the onset of migraine attacks, because migraine makes all of my symptoms so much worse. She gives me an early warning so I can prepare and try to manage things before they escalate. She also provides counterbalance support when I’m walking, helping me stay steadier when my balance is poor. She picks up items from the floor so that I don’t have to bend down, which is really important because bending can trigger dizziness and make my symptoms flare. She helps retrieve items from low supermarket shelves, making everyday tasks far more manageable. If I am home alone and I fall, she presses a button which alerts my family. When my world is spinning and everything feels overwhelming, she provides deep pressure therapy, helping to calm and ground me during severe episodes of vertigo and disorientation.

Living with vestibular illness can be incredibly isolating because so much of it is invisible, and the symptoms are unpredictable and frightening. Pinta gave me back a sense of security, confidence, and independence at a time when I desperately needed it.

Later, once I had my diagnosis and my mobility needs changed, I got my mobility scooter. It gave me freedom, but it also created a practical problem. I couldn’t find a dog lead that worked safely and effectively for using my scooter while handling a dog.

I looked everywhere and couldn’t find anything that properly met our needs, so I decided to make one myself. I designed a lead that worked for us, and when I shared it on TikTok, loads of people started asking where I’d bought it and how they could get one too.

That’s when the idea for The Dizzy Duo Dog Accessories shop was born. What started as a solution to a problem I was facing quickly became something more and that’s where the ethos behind The Dizzy Duo was created.

My goal is simple: I want to help anybody to walk their dog, no matter the challenge. Whether someone is disabled, chronically ill, uses mobility aids, has reduced strength or balance, or simply needs practical solutions to make dog walking easier, I want The Dizzy Duo to create products that make that possible because I know firsthand how important that connection with your dog is, and I know how devastating it can feel when physical challenges make you think that part of your life might be taken away.

What began during one of the hardest chapters of my life has become something positive, something purposeful, built from lived experience, designed to help others keep that independence and connection with their dogs and at the heart of it all is Pinta, my teammate, my Assistance Dog, and the reason any of this exists at all!

You have many innovative and helpful products for disabled dog walkers. Is there something new that you’re working on?

Currently, I’m working on a dog lead that allows two people to walk one dog! Perfect for anybody who does not have the physical strength to handle their dog alone.