Spasmodic Dysphonia

The unheard-of condition

These are two words I had never heard of before despite having lived with this chronic neurological condition for fifteen years. Working as a nurse specialist was a daily challenge until I was finally diagnosed in January 2017. It is easy to misdiagnose spasmodic dysphonia (SD) as very little is known about it. What is known is that there is excessive secretion of neurotransmitter chemicals from the basal gangli called acetylcholine. The amount secreted is usually controlled by the brain; however, in SD the brain loses control over how much secretion is needed, resulting in spasms or contractions of the vocal cords.

This is known as:

Adductor Spasmodic Dysphonia

Muscle spasms cause the vocal cords to tighten and slam shut. This causes breaks in speech, poor control over pitch and quality, straining and tightening of the speech.

There are two other forms of SD:

Abductor Spasmodic Dysphonia

Clinical presentation is a weak, breathy voice due to excessive contraction of the muscle which opens the vocal cords.

Mixed Spasmodic Dysphonia

There are those who suffer both types of dysphonia; although this is less common. Mixed SD has features of both adductor and abductor dysphonia.

I suffer with adductor dysphonia which is the most common.

Causes of Spasmodic Dysphonia

Very little is known about SD. Clinical presentation is usually in middle-age however, young people can also be affected. It affects women more than men though there is no research to quantify this. Symptoms gradually develop over time, although for me it was an acute onset whereby speaking was suddenly impossible. My speech became full of effort which is debilitating and leads to extreme anxiety. Not only do you sound like you are being strangled, but you feel like you are.

Before my diagnosis my job as a Nurse Specialist was affected due to my daily struggle to speak. This was exhausting, humiliating and left me feeling inadequate with low self-esteem. There is most certainly a stigma related to this disorder as people do not ask why you are struggling to speak, instead they just look at you with pity. We live in a culture that demands perfection. A voice is the first thing people relate to, it is your identity, it is you. Having SD robs you of that identity, your uniqueness and the very essence of who you are. It is therefore a necessity to learn to speak in a different way. I spoke in higher pitches and dropped letters from words as I could not say them. I could not say words with vowels in them and I could not speak on the phone. The daily struggle took its toll on my health, in that I was physically and mentally drained.

Diagnosis: January 2017

The cause of my fifteen years of speech difficulties was diagnosed in fifteen minutes. A small scope was put down my nose. I spoke, I sang, my vocal cords tightened and I was diagnosed with adductor spasmodic dysphonia.

Treatment:

Botox

I was injected straight through my neck and into my vocal cords. The Botox weakens the muscle by blocking the nerve impulse. This leaves me sounding breathy with poor quality pitch for several weeks until my voice returns to normal. So far Botox has lasted between three-four months.

Despite treatment it is still an effort to speak on the phone and in noisy environments. This results in isolation and loss of interest in activities. It is difficult at times to lead a normal life and voice envy is a real fixation.

Side effects of Botox:

• Aspiration of fluids

• Painful swallowing

• Breathlessness

• Fatigue

These side effects do not affect everyone however, I have experienced all of them.

Living with SD is something that is difficult to accept and my journey is now a very different one than I imagined. I cope with it through writing and raising awareness. I am interested in research and have linked in with many respected charities that support people living with chronic conditions. Although the cause of SD is relatively unknown there is ongoing research, and scientists are working to understand its cause and why it develops.

There is much more to be said about SD and the far reaching consequences it has on one’s life. My aim is to not only live well with it, but to advocate for others who have it, as well as those who don’t yet know they have it.

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Spasmodic Dysphonia