When I Finally Learned the Name of the Balance Disorder That Took Control of My Life

By my 20s I was sure something wasn’t right. I often felt nauseous and unbalanced, and over time it had a very dramatic effect on my confidence. As a researcher for a book publisher, I regularly worked in the British Library, which I loved. But I began to dread the walk from my desk to the central collection area. The sounds of trolleys moving books around or shelves being re-stacked seemed to cause a feeling of unsteadiness and anxiety. I put this down to some sort of panic attack. The same sensations gradually extended to other environments and fluctuated wildly, which added further confusion. The problems with balance, anxiety and a general feeling of something making me feel unwell were difficult to deal with as they couldn’t be attributed to anything specific. For years, the condition affected my behavior at work, as well as my social relationships. Then in 2003, when I was in my 40s, a sharp change of pressure during the descent at the end of a flight triggered the full range of symptoms. The inside of my head felt like a balloon I badly needed to burst.

It took me four years to get a diagnosis (in part due to a lack of awareness among doctors), and over that period my symptoms were subtly changing. The headaches were becoming severe, the nausea persistent, my vision was often blurred, and it was extremely uncomfortable to raise my voice, sing, or even eat crunchy foods. All those sounds reverberated inside my head. I had great trouble hearing people in noisy surroundings, and yet I was also hypersensitive to certain sounds such as a banging door, my dog barking, or a spoon clattering on the floor. I had no idea that my years of unsteadiness were directly linked to these new problems, and that the long-standing creaking noises in my neck or the clicking sounds from my eyes might be significant. As time progressed, I also had quite severe tinnitus, with terrible whooshing and thumping noises in my ear. Everything had a knock-on effect on my brain, affecting my memory and concentration.

During this time, I was referred to a consultant to be evaluated for patulous eustachian tube, an unusual condition where the tube connecting the inner ear to the nasopharynx doesn’t stay closed. By this point, I was having frequent freeze-on-the-spot attacks of vertigo, and I no longer felt safe driving. My life was already a complicated one, caring for my child with a disability, and I felt I could no longer cope.

After a CT scan, I finally was diagnosed with superior semicircular canal dehiscence syndrome (SCDS), a balance disorder. It is a developmental anomaly, present in one to two percent of the population. Occurring during the first three years of life, it is thought to be caused by a lack of bone growth in the uppermost balance canal of the inner ear, which can cause a tiny hole to develop. In roughly 50 percent of cases, this occurs on both sides of the head.

I was referred for surgery, which should have set me on the path to improvement. Unfortunately, the surgeon tried out a new method for the procedure. I came out in a worse state, with terrible vertigo and pain.

After 18 exhausting months of trying to get things put right in the U.K., I went to see the world’s most experienced specialist, Dr. Gianoli in Covington, La. He established that the SCDS was in fact bilateral and also explained all the anxious years: “Panic attacks are the result of too much of a particular chemical (adrenalin and adrenalin-like chemicals) surging through your bloodstream. Abnormal vestibular stimulation is a common trigger for their release.” He performed revision surgery on my left side.

This was an easy choice for me, as the condition had taken control of my life. But there were serious risks to consider, including hearing loss and nerve damage. These operations aren’t an overnight fix; the brain has a lot of adjusting to do. My right side was successfully repaired in 2012, but I still have whooshing noises from pulsatile tinnitus. The left side unfortunately remains problematic due to a rare nerve syndrome linked to the SCDS, and I continue to manage ever-present symptoms from that.

For those seeking to establish the cause of their dizziness, I would say first and foremost know that you are not “crazy.” Put out of your mind what many doctors may have said to you. There is very basic wiring in the brain that links dizziness to panic, and researchers are getting closer to identifying the neural pathways involved. In the case of SCDS, the relationship between anxiety and imbalance revolves in a vicious circle. I’ve found the word “dizziness” doesn’t have a precise meaning in the health care world. Since it incorporates a myriad of symptoms, be sure to be very specific about what you are experiencing, whether it’s light-headedness, spinning, nausea, feelings of non-reality, unsteadiness, faintness or severe vertigo – any or all of them. Never give up. Be persistent. If necessary, keep changing doctors until you find one that gets to the root of the problem. In my experience, for more accurate diagnoses, a neuro-otologist is the best person to consult.

An invisible condition of this kind can be hard for other people to understand, and it is vital that public awareness is raised. Not everybody who has the anatomical defect is symptomatic, but it is estimated that approximately 15 percent of patients with chronic dizziness could have SCDS, with many undiagnosed or misdiagnosed. If you need additional support, please visit SCDS Support. Remember, it is a complex condition, identified only in 1995. In other words, there is still much to learn about it.

My memoir “A Hole in My Life” (to be published at the end of May 2016) addresses these issues. The medical information it contains within the narrative has been authenticated by two ear and balance specialists. Most people have never heard of SCDS and certainly have no idea how difficult it is to live with. The holes in the bone may be tiny, but their effects are far-reaching.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

Philippa’s book on her SCDS experience, “A Hole in My Life” can be found here.

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