Are you afraid to go to sleep?

In an earlier post I wrote about Laryngospasm (we fondly refer to as "dry drowning"). Since then, a couple of people living with Kennedy's Disease asked about this health issue and if there is any help for this symptom. Recently, a daughter, whose father has Kennedy's Disease, wrote asking if there was something that would help keep her father from waking up choking in the middle of the night. Not everyone with Kennedy's Disease has this symptom, but it happens to enough of us that it is important to understand what it is and what can be done to help the problem.

 
Laryngospasm is a spasm in the throat (the vocal cords seize up blocking the flow of air to the lungs) that often occurs without warning in the middle of the night.  It can be triggered by a nasal drip hitting the trigger point in the larynx, acid reflux, or just from the vocal cords being weak and sagging a bit.  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.   It is frightening the first few times, but once you know what is happening and that you are not going to die, the process is a little easier to get through.  Learning to deal with dry drowning and to minimize its impact is important.

What can you do when it happens? The best way to ease the recovery process is to remember that the more you gasp for air, the worse the situation becomes. 

• When gagging, 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. 
  

This situation does frighten 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 sign (signal) so that 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).

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.

What else will help?

• Elevate the shoulders and head by using a foam wedge (about 12" high). You can normally pick up one at any medical supplier. 
  
• 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 and as they weaken, we find it more difficult to clear the throat when anything blocks it (including water, food, etc.)  As we strengthen our lungs through this practice, we find it easier to clear the blockage. 
  
• 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.
  
• Practice swallowing exercises every day. Stick out your tongue, bite lightly on it to hold it in place, and while holding the tongue swallow ten times (or more). This exercise will also make it easier to swallow food.
  
• Keep a bottle or glass of water next to the bed.  If I become dry, I take a drink.  Often, I am dry and I find water cleanses and clears the throat.
  

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


I would be interested if anyone else has any tips to help minimize the impact or eliminate the problem.