Thursday, April 19, 2018

I thought I was going to die

The first time it happened to me, I believed I would die. My wife did not understand what was happening. Fear gripped both of us. Neither of us could go back to sleep afterward. The second time it happened, it was no better and yet, in some ways, worse. We realized the first time was not an isolated incident. This was another symptom of Kennedy’s Disease.

Laryngospasm, often referred to as "dry drowning,” is a spasm of the vocal cords in the throat that temporarily blocks the flow of air to the lungs. There is a good YouTube video that explains the process well.

The spasm can be triggered by a nasal drip hitting the trigger point in the larynx, acid reflux, a particle of food, or just from the vocal cords being weak and sagging a bit. It can happen anytime, but the worst time is at night when you are jerked from your sleep unable to breathe. A person wakes up gasping for air and is not able to talk. The feeling is as if you have phlegm going down the wrong pipe and you are not able to clear it. Learning to deal with dry drowning and to minimize its impact is important.

The most frequent question asked about these spasms is what can I do to help the person?
First, it is important to understand that not everyone with Kennedy's Disease experiences this symptom. Yet, it can be a symptom and that is why it is important to understand what it is, and what can be done to help.

When it happens: This will sound counter-intuitive, but the best way to ease the recovery process is to remember that the more you fight it by gasping for air, the worse the situation becomes. Since the Larynx is a muscle, it works like the other muscles in the body. If a muscle becomes starved for oxygen it will release (relax) thus, in theory, it should open back up. We have never heard of a case where the person lost consciousness, but if that does happen, you might need medical attention.

Remember, this is a spasm and is different from choking on an object that needs to be dislodged from the throat.

If it happens in bed: Throw the feet over the edge of the bed and sit upright. Often when we wake up with this gagging, we are prone and then only partially sit up. By doing this, we are compressing the diaphragm making it more difficult to get a full breath of air to clear the blockage.

Try to relax and breathe slowly. Yes, I know that it is easy to recommend that you just sit there and relax, but it really does minimize the trauma. Panicking or tightening up only makes the situation worse. Tilt your head back and turn your head to one side. Breathe in very slowly through the nose with the mouth closed. As the windpipe starts to open you might begin coughing up phlegm.

Talk about it before it happens. As mentioned above, the situation frightens the wife (significant other) and children as much as the person experiencing the problem. All an observer can do is be there in case assistance is needed. It is helpful to develop a hand signal so you can communicate with others in the room when this occurs (e.g., a thumbs up if you feel that it is opening back up or a closed fist if it is not opening and you might need some help).

What else will help?

  1. Consider elevating the shoulders and head by using a foam wedge (about 12" high). You can normally pick up one at any medical supplier. 
  2. Practice coughing every day. What I mean by this is to try to bring something up several times a day by coughing hard. Our lungs weaken over time and we find it more difficult to clear the throat when anything blocks it (including water and food). 
  3. Practice sniffing every day. With the mouth closed, take a deep sniff (filling up the lungs) and exhale normally. Practice sniffing several times a day. 
  4. Practice swallowing exercises every day. Stick out your tongue as far as comfortable. Bite lightly on it to hold it in place. While holding the tongue swallow ten times. Repeat several times a day. This exercise will also make it easier to swallow food. 
  5. Keep a glass of water next to the bed. If you become dry, take a drink. Water cleanses and clears the throat and loses phlegm. 

Since adding the wedge and practicing the exercises above, I went from experiencing the gagging/choking sensation once a week to having one every 4 -6 months. Over the last ten years, I have not had one gagging or choking experience in bed.

FYI: There is additional information on this subject in the next post. Click here to read it now.

If anyone else has any tips to help minimize the impact or eliminate the problem, please let me know.


  1. Antonio Búa EirasApril 20, 2018 at 6:43 PM

    Tengo espasmos con frecuencia irregular. Ya no me asustan porque siempre los resuelvo intentando relajarme y respirar por la nariz con la boca cerrada.

    1. Translated:
      I spasms often uneven. not scare me because I meet always trying to relax and breathe through your nose with your mouth closed.

  2. My first laryngospasm, I had years before my diagnosis SBMA. I woke up at night and could not inhale or exhale. I sat upright on the edge of the bed and desperately fought for air, which unfortunately did not work but caused only smacking noises in the larynx. Meanwhile, my wife had also awakened and tried desperately to help me or even determine what was going on. I did not know what it was that caused this condition, and above all, I did not know how long that condition would last. I ran to the bathroom and held my head over the sink, hoping something would run out of my mouth in addition to saliva, maybe blood or something. After a while (which felt like minutes), I managed to breathe a little air through the nose, the only problem was, that I could not exhale and my chest felt tight like it was close to burs. Apparently I had almost fully inhaled with the last breath I took before the spasm. So I had the feeling that there was no space for any more air in my chest. I tried to exhale air through my mouth. That did not work either. After some painful time I managed to get rid of some air through the nose. Immediately, of course, I tried again to breathe fresh air through my nose. I felt that a little bit of air could be breathed in and out of the nose very slowly. A little more with every attempt. Then it was finally over. I was also able to slowly inhale and exhale through the mouth. I suspected I had suffered a type of asthma attack, although I had never had to deal with an asthma problem. The doctor suspected a type of reflux problem in which gastric acid would run down the esophagus back into the cervical area and then be triggered as a protective laryngeal function. Unfortunately, it was not and I did not have heartburn, which would have been characteristic of a reflux.

    Unfortunately, these cramps were now more frequent. I had nights where I woke up to 5 times with this type of cramp and then just did not want to fall asleep, always in fear of a new spasm. For a while I decided to sleep sitting in a chair. From that time on the cramps did not only occur at night but also during the day. Sometimes massive, sometimes less intense or even one-sided. I have little control over it, but I can take steps to help me avoid panicking and getting over the cramp as much as possible. Of course, other factors also play a role here. For example, I once had a cramp during a taxi ride. The biggest fear was that the taxi driver would panic while driving thinking that I was suffocating in his taxi. Of course, these types of suffocation attacks are also very frightening to outsiders in public.

    By what and when are these convulsions now triggered with me:

    Nervous tension and lack of concentration with a dry throat.
    When eating / drinking of e.g. spicy food or drinks.
    When eating crumbly food.
    In chlorinated water while swimming.
    In sleep without mask ventilation in unfavorable sleeping positions.
    At the dentist if liquid or small objects reach the rear tongue area.
    When overwork or tired.
    During longer unchanged seating positions e.g. Movie theater.

    After I finally knew what these cramps are, I was able to adjust a little better to the various conditions helping me to cope with every cramp individually. Speech therapy plays an important role as therapy support. I have been shown exercises that make it possible to train the SBMA affected muscle areas especially the throat and tongue muscles and thus to reduce the intensity of the cramping a little bit.

    1. If you wouldn't mind, please send me the exercises for the throat and tongue. Tks


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