Living With a Vestibular Disorder: My Experience of Perilymph Fistula
Disclaimer: This article details my experiences with perilymph fistula only. I am not a medical professional but an individual suffering from the condition. Please consult a healthcare provider if you have concerns about your health and symptoms.
I can’t believe that I’ve finally sat down to write this post. I haven’t until now because, like the condition, it’s personal and painful. I didn’t want to go there. It’s easier to numb out and shut it all out. Or so I like to tell myself.
However, after recently writing a series of posts on my battle with fibromyalgia, I’ve come to realise that the process is hugely cathartic. After publishing, I received endless comments and emails from fellow sufferers, who also wanted nothing more than help and to be heard. If I can help anyone by sharing my horrible experiences, that’s enough for me. So, here we go.
What’s a Vestibular Disorder?
When I first got hit with the debilitating symptoms of this condition, I’d start explaining to people that I have a vestibular condition, only to be met with confused faces and “Sorry, what’s that?”
The word vestibular concerns matters of the inner ear. Specifically, the vestibular system refers to the sensory system in the inner ear that aids balance and spatial orientation. If you have a damaged vestibular system, symptoms look like dizziness, hearing problems, nausea, vertigo and imbalance. Not much fun at all.
What is Perilymph Fistula?
Often known as labyrinthine fistula, at least for travel insurance purposes, a perilymph fistula is a tear in the membrane that separates your inner and middle ear. I start to wonder if these membranes are made of the flimsiest of tissue paper, but I’ll leave my ranting for now.
So, How Did I End Up Here?
This year, 2024, marks the tenth not-so-happy anniversary of my development of bilateral perilymph fistula. At the time, I was in my twenties and had already been suffering from severe fibromyalgia symptoms for three years. In that period, I’d also survived sepsis after my burnt-out body struggled to fight off a bacterial infection.
For a long while, I’d been aware that my sinuses were far from right. That’s a huge understatement. I had little to no airflow through my left side, which was severely affecting my ability to sleep well at night. I’d wake up panicked and suffocating most nights, which was pure misery.
As time passed, my right side became progressively worse, to the point where I was now battling monster sinus headaches. Every other morning, I’d wake up with a headache so wretched that I’d vomit from the pounding pain in my head.
I tried everything. I didn’t know then, but I now know that chronically blocked sinuses are a classic fibromyalgia symptom. Despairing, I went to go and see a doctor, who prescribed a nasal spray, which did nothing to help but make the situation even worse.
Months later, I consulted with another doctor, who casually said, “Oh, you need to do a sinus rinse.” He advised me to buy a rinse online and said that would be “incredibly simple” and “non-invasive.” I felt so relieved that there may be an answer, finally.
It Went Wrong. Horribly Wrong.
When a sinus rinse goes well, the water enters the sinuses and drains out again. That didn’t happen in my case. I was meticulous about following the instructions, but there was one huge problem: my sinuses were far too blocked for a sinus rinse to work. No one told me you need relatively clear passages even to consider using the product.
Unable to flow through my sinuses, the salt water shot straight into my middle ear space. I immediately put the product down, feeling somewhat panicked. Please, no more health nightmares, I desperately thought.
A couple of days later, I returned to the doctor. He advised that the water would drain by itself with no intervention. OK, thank goodness, I said to myself.
One month later, my ear was still full of water. It was becoming pretty miserable. I knew that the doctor had no answers, and frankly, I felt angry that he’d ever recommended a sinus rinse in the first place.
Around the six-week mark, and with my middle ear space still unable to drain, I started experiencing some truly intolerable symptoms: intense pressure in my head, dizziness, tinnitus and nausea. My daily functioning was now poor.
I returned to the doctor, who said that the issue was that my eustachian tubes weren’t opening as they should and that I needed to do repeated Valsalva manoeuvres to resolve the situation. A Valsalva manoeuvre is when you pinch your nose and push out air, a type of forced expiration. Many people do it on a plane descent to un-pop their ears. I was also advised to use a product that mimics the Valsalva but is specifically designed to drain the middle ear space.
After a couple of days of doing the manoeuvre, I had some relief. Some of the water had drained, finally! The pressure in my head reduced some, but not enough, as water remained.
It was a weekday evening, and I was casually doing a routine Valsalva once more when everything changed. I immediately knew that something had gone terribly wrong. I literally felt my ear blow up. Something has snapped, blown, or moved out of place. Unbearable nausea and dizziness took hold, the pain in my right ear was hot and stinging, and worst of all, the floor no longer felt solid. I sat on my bed, frozen and horrified.
Getting Help
Within hours of this fresh horror, I was online researching what on earth may have just happened. It didn’t take long to spot the same condition name cropping up: perilymph fistula. Knowing that fistulas are often the result of injury, it all made sense. I felt numb with it all.
I never did return to the doctor who advised me on the course of action. I couldn’t face it. As the days passed, grief set in as I realised the severity of this injury.
Instead, I managed to identify the country’s leading expert on the condition, a neuro-otologist based in London. He was brilliant, more or less instantly diagnosing perilymph fistula. I’d hobbled to the appointment, unable to walk unaided and in a monstrously dark space.
So, Where Am I Now?
I’ve now had multiple inner ear surgeries to try and fix me. About a year after the initial injury, the condition became bilateral. I reason that my left ear was already damaged anyway, and pressure changes relating to my right ear diverted said pressure and created a small tear in the left-side membrane.
To say that this condition has changed my life for the worse is an understatement. I no longer go on walks, I no longer run (and I used to be an avid long-distance runner, sob), and I don’t stand any longer than necessary. Living with a vestibular disorder is impossibly hard. Sometimes, the worst part is that none of it feels real. I’m always healthy in my dreams.
Without undergoing the surgeries that I have, I’d be completely bedbound. I’m so very grateful for the help I’ve received and will shortly receive again (yes, surgery looms), but I’m still utterly devasted that any of this happened.
The cause was ultimately my fibromyalgia, but I go over and over everything and curse the day I decided to pick up a sinus rinse. Shockingly, a good 50% of sufferers on online support groups for perilymph fistula claim to have developed the condition after using a sinus rinse. In my view, the product needs to be immediately withdrawn from the market.
What Are the Symptoms of Perilymph Fistula?
Vestibular conditions can be challenging to differentiate from each other. I guess the simple thing about perilymph fistula is that it generally occurs after an injury of some sort. So, if you’ve had an accident involving the ear, look to this wretched condition.
My symptoms, in no particular order, are as follows:
Imbalance: I liken the floor to a trampoline, which is as tricky and anxiety-inducing as it sounds. I also suffer tilts in directions I don’t want to tilt, whether backwards or to the side. I believe that this is due to otolith organ disruption, another part of the joyous inner ear.
Dizziness: Sometimes, I feel as though my eyes don’t track my movements properly. Other times, things look like they’re moving when they’re perfectly stationary. I’ve had periods of needing to walk super slow so that dizzy sensations don’t render me functionless.
Rocking Sensations: Similar to dizziness, but at the same time, it is not; this sensation is like being a boat, a boat you really don’t want to be on. I can sit in a chair, minding my own business, only to feel invisible forces pulling and rocking my body. I hate it in a big way.
Muffled Hearing: I’ve suffered this quite a lot lately, and frankly, it scares me. My hearing can be really off, depending on how well my fistula repairs are holding. Sometimes, it sounds like I’m underwater.
Low-Pressure Headaches: In straightforward terms, perilymph fluid directly connects to the fluid surrounding and supporting the brain. Therefore, if you have a perilymph fistula, you may have a microscopic brain fluid leak. The symptoms are from the scorched earth itself: indescribable pressure in the head that worsens the longer you’re upright, nausea, vomiting and pressure behind the eyes. When I suffer such a headache, I struggle to do a thing.
Ear Pain: Lastly, this is an injury, after all, so it comes with a degree of physical pain. The discomfort is a deep, wet, stinging sensation within the ear. When it’s really bad, the pain extends to the whole of my face and head.
Life With Perilymph Fistula
I’d be lying if I said that I was OK that I have this condition. I’m not. I don’t live a bad life, but it’s frequently stuck in survival mode. So many years have passed by in a haze of immobility, pain and grief. I am so thankful for the medical intervention I’ve received and continue to receive, but if I could turn back time, gosh, would I.
If you’re currently suffering from unexplained vestibular symptoms or suspect or have been diagnosed with perilymph fistula, please reach out, either by email or comment below. I’m very much here.
