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Spasmodic Dysphonia


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I too have both!!! The Dysphonia started for me when I was around age 33, very young for that. It came on gradually after a flu vaccination. I took botox injections for years as I was a teacher and spoke all the time. At age 50 the autonomic problems began. I had to quit teaching and stopped the botox injections. I have always wondered if the years of botox was my problem?? Or if it was an early sign that I had neurological issues. No one has mentioned any connection except for one doctor who thought both could be mast cell related. Wish I knew!!! I also have small fiber neuropathy and autonomic neuropathy.

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I am thinking of you. Being in the hospital can make one feel down...but you are hopefully getting some answers. Let me know if you have any other questions that I can help with or just listen. You can always PM me also. Hugs!

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Hello SusanB,

I'm so sorry you are in the hospital. Not a fun place to be. I was diagnosed with Dysphonia back in 2011 at Mayo. I had suffered with years of hoarseness, coughing and throat irritation. The dysphonia was thought to most likely be the result of a severe and prolonged case of viral laryngitis which I had endured 8 years earlier. No one mentioned any connection between the dysphonia and dysautonomia. Now all these years later that issue has improved so significantly I almost forgot I had been diagnosed with it. The main difference between pre 2011 and post 2011 was starting PoTS and mast cell treatment so I'm not sure if that helped in some way. The thought has never crossed my mind before. Back in 2011 the ENT doc at Mayo recommended some kind of voice therapy which I'm afraid I did not follow through with once I returned home.

I hope you feel better soon.

Janet

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Before I was dx I had pneumonia, after coming home from the hospital, I was hoarse and coughing. I continued that for almost a year, 3 weeks shy to be exact. I went to many doctors. Many as you know tell you it is all in your head, I finally went to one who did a scope and my vocal cords werent working right, still arent. Every time I am presyncope, get too warm, or have syncope spell I lose my voice for an undetermined amount of time. To get my voice back after that year, they trialed Mestinon and it took two days but Thank God it worked! I am still on it now at a much higher dosage and the symptoms are still there but I have my voice. When after 20 months, I finally got dx with POTS, the doctor had never had a patient who lost their voice like I do. But when I started going to him in 2008, I have consistenly been doing the same thing with my voice and now he has another patient also that looses her voice. Crazy POTS! I had to record it for him so he can further research it as possible symptom too.

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Hi Susan,

I'm sorry that your dealing with a hard time right now.The hospital is my least favorite place.... Please know that we're here to listen and lend and ear! I wish I could offer some advice that would be helpful to you... I will do some research and see if there is anything I come up. .. I'm glad some of the other members have chimed in with their experiences. Hopefully there are more to come!

Stay strong!

Sarah

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ptalaura that's very interesting that Mestinon got you your voice back as that was one of the PoTS meds I started taking in 2011. I wonder if Mestinon was also responsible for the normalization of my voice. I only gave it credit for reducing my PoTS symptoms.

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  • 3 weeks later...

I am so glad this was posted. I have a son that suffers from a hoarse voice but he also has some other symptoms that are unusual. I ran across this article and wanted to share it. This is an unusual connection to Spasmodic Dysphonia but it may be helpful to someone else that has a hoarse voice. I have asked my son's doctor it he could try the medication that you mentioned. His hoarse voice comes and goes and he had vocal cord dysfunction when he was younger. He knows the breathing exercises to stop the vocal cord dysfunction and has not had any problems with this condition. However, the hoarse voice is with him everyday.

http://voicefoundation.org/health-science/voice-disorders/voice-disorders/voice-dysfunction-in-neurological-disorders/myasthenia-gravis-mg/

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How interesting ! Thanks for the link Rachel. Makes me wonder even more if the taking of Mestinon and the improvement in my voice were connected and not just a coincidence. I guess I was actually diagnosed with muscle tension dysphonia and not spasmodic dysphonia. Out of curiosity I had to go back in my records and look.

It's amazing all of the different issues Mestinon can potentially help.

I hope you're feeling better Susan.

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I had many tests in my local home town then went to some specialists at a much larger city hospital. I had some paralysis of a vocal cord with incomplete closure. I had an EMG done on my vocal cords and then had a test done for MG (which I don't recommend, oh my!) The MG test did come back negative. PTL! But I still have the symptoms of loosing my voice with syncope and come to the conclusion that I'm going to live with it. I have had a bad cough for 18 months now. Thought it was allergies, took some meds for that but no change in cough, when I am laying down on my right side and cough it sounds horrible, barking seal. but if i do it on my left just a simple cough. So I know something still isn't right. I am still going to persevere. I have just changed PCP because my other one all he wanted to do was argue bout my meds that my POTS specialist was giving me. I don't have time for that or feel like going through that each time I go. I was more upset leaving and didn't even get to what I went to the dr for in the first place. So I'm starting over, with a new one but this one knew about POTS, amazing! starting off good!

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