Saturday, May 15, 2010

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. 
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  • 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.

18 comments:

  1. I used to have laryngospasm, first were growing in frequency then stabilized and finally disappeared, I guess because the increasing weakness and fatigue of the muscles of the larynx, similar to what happens to the cramps.
    The best way to pass them are to remain calm but it is very difficult.
    Once an old lady otolaryngologist told me that an old remedy was to put the head inside the refrigerator, changing temperature and humidity immediately relax the muscles of the larinje. Believe me it works

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  2. Interesting! I've had these for years. I'm only 37 yrs old. I also choke easily on my saliva. I'm only have the spasms when I am asleep, but NOT hooked up to my cap machine. That leads me to believe that ataxia is involved. I will start some deep cervical flexor exercises right away.

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    1. Nice to see your comment. Im 33 and have been new to this; about 1/month waking up in pure panic choking. Last night I thought I was done for, it was bad and still this next day I feel like I haven't been able to 'clear' that part of my throat that triggers the spasm. About 2 years ago I started noticing that I was experincing the "went down the wrong pipe" all the time. It could be saliva, a drink or even eating apple would cause it. This was usualy followed by hours of trying to clear my throat. I have just figured that my gag reflex became defunct. I also have sinusitus (post-nasal drip) so its all in the context of that. I dont know if the choking is more frequent if I've been eating certain foods or drinking more alcohol. Anyways, this is the first page I've found such accurate descrition of what I'm going through. You've had succuess with these exercises you speak of?

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    2. Yes, the exercises and changes in routines have been very helpful. I still have the occasional episode, but most times it is because I am talking while chewing (bad habit) or swallowing food before fully chewed. Discuss the problems/experiences with you GP. A physical therapist cam help with developing an exercise program that might be helpful.

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  3. This is great advice thanks I have now had 2 episodes one over 20 years ago and one last night it really freaked me out
    The more you try and gasp for breath the worse it got I'm glad there are others that share there experiences with you and give advice how to cope with it when you panicking because you can't breathe

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  4. Hi I was just watching something on YouTube and nodded off only to wake up not breathing I really had to take a deep breath in which felt very tight, I couldn't stop shaking so I looked it up to see what causes it and found these comments , I'm actually scared to go back to sleep :-( as I suffer wth anxiety anyway

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  5. The fear of something happening is often worse then the event itself. It is time to talk with your doctor. He/she might be able to help. I wish you well.

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  6. i'm 39 and this just happened to me for a 2nd time in my life an hour ago. the first time this happened, i was 35 and was about 4 years ago and i thought it was because my throat swelled up from eating some hot fish covered in hot sauce, i thought i didn't let it cool off enough + the hot sauce might've made my throat swell or produce mucous from irritation. it took me 2 days to finally go back to sleep. but this time i didn't eat any hot food. my dinner was warm but i wouldn't call it hot. i also had my mini fan blowing in my face because it was stuffy in my room. but i woke up in the middle of the night felt like i was choking/gagging on snot that went down the wrong pipe. the first time this happened i did panic and went to the ER. they found nothing but they managed to find me a medical bill because i didn't have health insurance. this time, i was more relaxed and was more like "wow, this again?" and just sat on the edge of the bed trying to catch my breath hoping my roommates wouldn't hear me gagging and freak out themselves. when i was aborted from my sleep, i think i was sleeping on my neck though (facing the wall, chin in the pillow) so that may have cut off my air flow. i don't know. i'm able to gain control more quickly if i remember to breathe in slowly and not gasp, that does make it worse. i took a hot shower and the humidity seemed to help but i still feel like i need to clear my throat.

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  7. Has anyone experienced this while falling asleep in a chair, only to wake up coughing and gagging for air? I have also experienced it while laying down and during sleep.

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    1. Yes! I quite often get it if I'm in a chair particularly if I'm reclined a little. Recently I get it lying on my side on bed
      Scary!

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  8. Yes. Since I started using a foam wedge to elevate my shoulders and head, they are far less frequent.

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  9. This has been happening to me for some time but twice in the last two years I've actually gotten an aspiration pneumonia and have significant lung damage. I am so afraid of sleeping that I will stay up most of the night until I cant keep awake any longer--then sleep for 2-3 hours.

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  10. This happens to me every year or so. It always seems to occur in conjunction with very dry air and/or a cold or sinus infection. But last night I had a bad episode. I felt like it would never end but it finally did. My husband kept asking me if I was having a heart attack but I couldn't answer him because I couldn't breath. This was a scary one and again it was very dry in the house. A couple years ago I told my doctor about these episodes and he said to take a drink of water but how do you drink if your throat is closed-up? Anyway, this site has helped me know that I am not alone. Thank you everyone!

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    1. Thank you for sharing. Have you tried a humidifier? I find that swishing water around my mouth helps and makes it easier to swallow.

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    2. I'm so glad that there are people out there sharing there experiences. The first episode for me was 2 years ago. I woke up suddenly panic stricken,unable to take any air in through my mouth or take air in through my nose. I tried to keep calm and tried to take air in through my nose. It felt like I was taking in air through a straw. After about 30 seconds I could breath normally and took a drink of water. But it gave me severe anxiety unable to sleep for fear of dying. Dramatic ...I know but nevertheless this is how I felt. I have chronic idiopathic urticaria and angeodema. I have had lips swelling tongue swelling and airways. I become covered in hives and this can happen anytime of the day. I was type 2 diabetes and underactive thyroid. But I embarked on cutting out bread pasta cerise and just living on meat vegetables fruit and salad. Lostrich a couple of stones and recent tests show my diabetes in reverse 5.5 which is great also underactive thyroid in reverse so my medication is being tapered down. However,I have very low ferratin levels low b12 and vitamin D. So now I'm on a very high dose of vit d and b12. So there are underlying issues. I am now writing tod say I have just had another episode unable to breath same scenorio. But it could not be anahyphalatic I think it's either nasal drip onto my larynx or perhaps backlash from acid..perhaps brought up wind and it brought up a little acid as I was laying flat ...who knows...still it is scarey and it does stimulate anxiety. I read somewhere that having soap near you helps? Wishing you all good health and no more of these choking unable to breath episodes.

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  11. I've had this happen a few times. Always while falling asleep in a chair. Last night was the worst, but I have been having sinus problems this week. Hearing the experiences of others really helps. Thanks for sharing!

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  12. Yesterday I awoke from a nap in the recliner with a laryngospasm attack. I've had about ten attacks, this was the scariest one so far..i thought this was where my life was going to end. Usually i get them during the day, and they only last 60 secs maximum. This time it was longer than a minute, and at what seems the start of a flu. I went to the gp who nebulised me. That helped alot. They advised me to get ventolin with a spacer, and, after another appointment late last night due to blocked nose add well, they also prescribed prednisolone and claryntine. Scary trying to sleep last night. .. slept in raised pillows with ventolin ready to go right next to me.

    Has anyone tried to use ventolin in the midst of an attack? The gp seemed to think it would work even if you can barely breathe.

    24 hours later larynx still feels vulnerable. Also still have the sensation that need to clear my throat. As well as that i have had no /very deep voice since late last night. I think the prednisolone and telfast are useful to help make breathing easier.

    Anyone else used these?

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  13. I've been suffering from this almost nightly for months. Then the following day I sound raspy. It's super scary. I've been to a clinic multiple times. I'm always told it's post nasal or must be a form of strep and put on antibiotics that don't do a thing. I've never been tested or properly looked at. Because I've mild sleep apnea, they just figure it's from that. I am so glad I ran across this. Thank you​ for sharing. Now I can ask specifics next time I'm in.

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