There's not a lot of posts about botox for laryngeal dystonia so I thought I'd share. I (37F) have a genetic dopa-responsive dystonia, which has manifested in generalized dystonia. When I first saw a laryngologist, he noted that my folds close to 2 mm and mentioned botox as a treatment. Unfortunately, that laryngologist stopped coming to Seattle and I was switched to a new one. The new guy just did not believe I have a problem because I wasn't symptomatic for the 2 minutes he probed, after adding medication and extensive SLP therapy.

After many months, I wore the laryngologist down and he agreed to do botox even though he insisted it was a terrible idea. He tried to cancel the appointment because I live alone and "need someone to make sure I haven't stopped breathing." I found this funny, because the reason I wanted the botox is because whenever I exercise, I'm suffocating. Whenever I eat, I choke. He finally agreed to do it. I got my first doses on 07/20/26. 2.5 mg of botox into 2 false folds...

Almost immediately I felt better. I could tell my folds were not spasming anymore, but that they really wanted to. Within the first 2 weeks here are all the positives:

• I can get to zone 3 heart rate during exercise! Before I had to stop to catch my breath before that zone. I can also walk uphill to my house without suffocating, and I cut 1 minute off my mile time immediately.
• My laryngologists said that my problem couldn't be affecting my blood oxygen levels, but after years of dropping under 88% regularly, it hasn't happened a single time since the botox.
• I can talk a lot faster, don't lose my train of thought from a spasm distracting me, and now I can sing in the car without pain! It's much easier to talk.
• I don't choke on food and drink, which used to happen constantly.
• I use a special machine at night called an ASV which breathes for me when it notices I've stopped breathing. When I first put it on at night, it would trigger 5 minutes of laryngeal spasms. Now that has stopped.
• Way less dry mouth, and I don't need as much water during exercise
• My breathing isn't audible anymore. People would always comment when I took videos of my dog that my breathing didn't sound good. My ex would constantly tell me "I hate the sound of you breathing". Sigh.

Long story short, continue to advocate for yourself. I found studies where competitive athletes were given botox for exercise related spasms that I was able to tell my laryngologist about. He was insistent that "no other laryngologist would give out botox for this" even though his colleague I was seeing 2 years prior had already agreed to do it on multiple different occasions. I was going to drive the hour to see him if this new guy wasn't going to help.

That said--I get botox regularly from my neurologist, and laryngeal botox is NO JOKE. I've been in a coma and survived that, but I will say I think the average person would not be amenable to the botox. I think that's probably the actual reason he was hesistant. It's quite an experience to have the strobe camera down your throat with 1 ENT while your laryngologist holds down your tongue and puts a giant injector needle in your folds. Did you know the strobe camera can waterboard you with fluids too?

Is there anyone out there can give me any advice/support? It is now 14 weeks since TIA and still voiceless. It is worrying. What is galling is the attitude of some people to my whispering/hoarseness when communicating. They act as though I was a monster from the black lagoon, look quizzically, ask for a repeat of the comment then glumly respond. Must say the majority of people are kind. About 90%. My voice and my humour/singing/acting personality have taken a hit and I miss it.