SPASMODIC DYSPHONIA
In March of 2020 I started to notice a change in my voice. When I would talk my voice sounded horse and raspy like I had laryngitis. Some days I physically had pain when breathing and talking. Other days my breathing was fine and it was just my voice that sounded strained. I have asthma and assumed I was having asthma attacks due to the weather and my allergies. This went on for a month before I called my doctor, hoping a stronger inhaler would help with my breathing and fix my voice.
I found out that I was not having asthma attacks, but instead I was having panic and anxiety attacks. My doctor prescribed me multiple anti-depressants and anti-anxiety medications, but I never went and filled the prescriptions. Three months went by and my "voice problem" only got worse. Some days I was unable to speak at all. I ended up going to urgent care for my symptoms. I had my blood pressure tested, oxygen levels tested, had blood drawn to make sure I had no clots, and even got chest x-rays to make sure I did not have pneumonia or anything else. All of those results came back clear, and the doctors couldn’t give me an answer as to why I sounded the way I did.
Another month went by and my MD then referred me to an ENT. The ENT had me make a variety of sounds such as “aaaaa” “eeeee” in a high and low pitch voice. He then proceeded to view my vocal folds with an endoscope. A narrow flexible tube with a lens was inserted through each nostril around the back of my nose and down my throat. This allowed my doctor to be able to evaluate the movements of my larynx and vocal folds while I was speaking. This procedure was uncomfortable, and I am glad I did not know beforehand what it entailed.
On August 13, 2020 I was diagnosed with Spasmodic Dysphonia. I remember the date because after 6 months of not knowing what was going on with my voice- I finally had an answer. In simple terms-Spasmodic Dysphonia is a neurological condition that affects your speech- also known as a vocal cord disorder. Spasmodic Dysphonia is a disorder where the muscles that help generate your voice go into periods of spasm. When this happens, there are breaks and interruptions in a person’s voice, making it hard for others to understand you. This condition is lifelong, and there is no known cure.
I had never heard of Spasmodic Dysphonia before this day and do not know anyone else who has it. I asked my doctor how I got this, to which he explained that it is a neurological disorder that is hereditary. I do not know of any family members on either side of my family that have this or have had something similar to this. One can go their entire life without having physical symptoms, and others can gradually over time have symptoms worsen before being diagnosed. Spasmodic Dysphonia can be triggered from a respiratory infection, pregnancy, psychological stress, or a traumatic life event. So, although stress and anxiety did not directly cause my Spasmodic Dysphonia, they triggered it and brought it to the surface.
There are 3 types of Spasmodic Dysphonia, the two most common being Adductor Spasmodic Dysphonia, and Abductor Spasmodic Dysphonia. Adductor SD is the most common form, and in brief it is when your vocal cords do not open when you go to talk. Abductor SD is less common, and it is when you have spasms in your voice when your vocal cords open and you try to speak.
I have Abductor Spasmodic Dysphonia. According the National Spasmodic Dysphonia Association, “Spasms in the abductor muscles cause the vocal folds to remain open for a longer duration than should normally occur on these sound combinations. This results in the voice taking longer to complete the voiceless sounds, which makes the speaker sound “breathy.” AbSD causes problems with the production of “voiceless” speech sounds, which normally sound “airy” or “breathy” when produced.”
Examples of “voiceless” speech sounds are:
• “f” as in funny,
• “k” as in kite or cat,
• “t” as in top,
• “h” as in hello,
• “th” as in thank you, and
• “s” as in master
https://dysphonia.org/about-sd/what-is-spasmodic-dysphonia/types-spasmodic-dysphonia/
So now that I know what I have, how do I fix it? Spasmodic Dysphonia is something that unfortunately for me will never go away, and there is no none cure. After being diagnosed with Spasmodic Dysphonia I was referred to a Speech Language Pathologist. Prior to receiving speech therapy, I had to be evaluated. I was told that within the first 2-3 sessions of therapy, they would be able to see if I would continue with it, or if I would need to take more drastic measures- which included getting Botox in the neck every 3 months.
That was really hard to hear. There are no specialists locally in Santa Barbara that do this, so I would have to go down to UCLA to get the shots. They also only last 3 months, so I would have to get them 4 times a year. I was then informed that some people have allergic reactions to the Botox, which can cause them to lose their voice completely for 3 months. Sounds fantastic doesn’t it? In more severe cases if the speech therapy and Botox don’t work, there are surgeries on the vocal cord that can be performed, but that can often times cause more harm than good, and lead to additional permanent damage.
I asked my SLP about anti-depressants and anti-anxiety medications to find out if taking those might help me to “relax” making it be “easier” for me to talk and others actually be able to understand what I am saying. Unfortunately, there is not much research that shows the affects those medications have on Spasmodic Dysphonia. It also ultimately depends on the person. They might work for some people, and they might not work for others.
I left my evaluation feeling pretty discouraged. I cried for a while, and then cried some more. You have no idea how frustrating it is to have everyone I talk to not be able to understand what I am saying. I am constantly having to raise my voice and yell, making me even more stressed and anxious and frustrated. The picture below was taken off of my intake forms. All of these symptoms are what I experience on a daily basis.
I start speech therapy in a few weeks and will be having a follow up post on what happens during that process. If you know anyone who has Spasmodic Dysphonia, or you yourself have it, please reach out to me. I would love to connect with you and hear your story and treatment plan.
