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.

45 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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    1. How long did it last & did you ever start throwing up ?

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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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    1. if you are having these spasms ( and there is a you tube video with sound so you can compare) it does help to put your head in a freezer or refridgerator and get a blast of cold air in your throat. i have had this 5 times in a span of 20 plus years.

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    2. https://www.youtube.com/watch?v=nPtdkqOLLP4

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    3. I have experienced this choking for many years now but 4weeks ago i started with a barking cough but thought is had something to do with my c.o.p.d then 2weeks ago i started to wake up choking when i feel asleep & now every time i fall asleep & only after 12mins i wake up choking & gasping for air im so frightened & scared to sleep at all . I purchased an electric fan & as soon as i start choking i sit up & switch my fan on which helps somewhat . There must be something medical that can be done .In 2 weeks ive had no more that an hours sleep in all this time . Its so good to see that im not alone.

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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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    2. Yes....i get it reading in my recliner...i nod off suddenly and sometimes i end up choking...but not eating anything...
      I can nod off for just a few seconds....

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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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  14. I had been suffering from a cough, and then after three weeks of coughing all of a sudden I wake up in the middle the night with my throat closed and I can't swallow or breathe ... every single night now for about three weeks this happens. I am so terrified, I have no insurance and I've been putting off going to the doctor and just self-medicating with Mucinex, Claritin, and Zyrtec . I'm glad I'm not alone.

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    1. My breath shuts down in the day many times when i turn my head or bend head

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  15. Has anyone looked into risks of dental treatment? I want to thank this site and page writers. I have had several episodes, but thought phlegm was blocking my airway. What usually helped me was drinking warm water... After reading this page (article and comments), I finally have an understanding of what I am experiencing. So - Thank you ALL. I would greatly appreciate any knowledge or tips relating to dental treatments? Is there an increased risk? Is there anything that should be administered differently?
    Thanks

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  16. Dental procedures have not been an issue for me. I've had extractions, cleanings, bridges, fillings, etc. and none have caused a problem. I did discuss the phlegm and choking issues ahead of time. I tell them I need breaks (to rest/flex the jaw, swish out the mouth and swallow).

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  17. I had what I believe was a laryngospasm the other night. I woke up from a dead sleep with my airway shut off. I could force a little air through and I literally thought I was going to die. I thought this is it, this is how I die. I'm a medical professional so in my head I was going through a list of things it could be or that I could do. I remember thinking if I was choking some air was still getting through and to keep forcing air in and out. I started to go to the bathroom, then back to get my phone to dial 911. Then I was trying to figure out if I should wake my kids to have them call, they are both under 10. Then my airway suddenly started to open up. All symptoms gone after a few minutes. No sleep the rest of that night. It's a dark memory because I was truly preparing to die. The sound of the stridor echoing in my room is burnt in my memory. I'm prone to anxiety and struggle with the episode and the far it might happen again. I believe it was gerd related because I was laying face down and acid ha a tendency to roll up my throat in that position. I'm making life style and diet changes because of this one episode. I want to lose weight and get my sleep apnea and gerd under control.

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    1. Yes I have been there only
      I wasn’t able to get any air at all I thought for sure (cell in hand to dial 911 ) that I was gunna die and my kids would find me

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    2. Same experience I for sure thought I was going to die and my daughter would find my body in the morning. Idk what to do I am really scared, and the fact that I have an anxiety disorder doesn’t help my situation.

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  18. This happens to me if I fall asleep sitting up, but I fell back to sleep in bed this morning and woke up choking, this usually happens where it comes into a dream that I am choking and I then awake in terror because I realise I am not breathing, I jumped out of bed and tried to breath but it feels like my breathing is on a loop that hits my throat and comes back without allowing air to go in, it is terrifying because I am completely aware that I can't breath, and then after what seemed like an eternity air went a little further down but caused the air to catch there as well, my breathing went back to normal after a few minutes but I have to keep swallowing because it causes lots of saliva and my throat will be really sore now for a couple of days. I also have a really heavy head. Does anybody have any advice on getting breath in because when it is happening, you dont feel like you will breathe again and that are in the process of dying..this isnt related to panic attacks, and taking a drink would not help as you cannot breathe and this could cause more damage. ..

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    1. It is frightening. And it is not a panic attack - it is real. What I was told, and difficult to do initially, was to relax. The doctor told me we tighten up and further constrict the air passage. He mentioned, if we pass out, our throat would relax and we would breath normally again. Attempt to calm yourself and not try to force air in. It is easier said than done, but it does work. Also, raise your chin so you are looking at the ceiling.

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    2. I have the same experience with it starting in a dream where I cant breathe and then wake up choking. My question is do you actually start coughing up anything liquid? Because I do and it takes a while to clear out my lungs properly. Unsure of what it is I inhaled though. Doc always suspects it is stomach acid but it could be saliva or God knows what. Im so terrified to sleep and nothing seems to help, not elevation or cutting off intake after 8 or anything. Really need a solution.

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  19. I am Abera (aged 33), father of Barkot. I recently experienced this symptom of choking two times a day, one in the afternoon while standing and another during midnight while I was dead asleep. In both of the cases, I was struggling hard holding my neck with both my hands thinking that I was about to die. I was a very terrifying moment of my life. I think my case started following an irritation of the throat area provoked by inhaling of dust from my carpet in my bed room resulting in coughing and drying of my throat area. Previously, just 4 years ago, i had this 'lump in the throat' kind of sensation and went to see a specialist and was told that it was due to GERD. However, I was not happy with the diagnosis and had another check up by another Doctor who said that it was as a result of Asthma. Finally, I started to check about my case myself on the internet and found it to be a 'CircoPharyngeal Spasm'. After that I accepted it and tried my best to treat it in my own best way and live started to live with it until this time. I am very happy to see that there are also other people out there experiencing what I am going through and that they also out there to help one another through such social forums. thank you all and God bless you.

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  20. Just woke up with this terrible blocked feeling, unable to take in any breath, jumping out of bed and panicking thinking I was about to die, constantly coughing. Reached for my ventolin with spacer and 2 puffs helped me to breathe again. So scared. Dont think I will be able to relax and sleep for the rest of the night. I have post nasal drip and am using nasal sprays.

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  21. Just had an attack. Scared my wife as much as me. I'm pretty convinced that it is related to my post-nasal drip. I have one of those sinus rinse bottles, and the packets that adjust the water so it doesn't "burn". I block one nostril and send the water up the other. It runs through my sinuses and out the back of my throat and into the sink, not out through the other nostril. It comes out clear and thick like a runny nose. Doing it once a day seems to help.

    Yes its very scary for you and others. It happened at work once, and someone started doing the Heimlich on me, and then they made me take an ambulance and spend the afternoon at the hospital. Expensive, embarassing and useless. The worst part is those short moments when you can't move any air at all.

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  22. I just
    Started getting these too had a major one 4 nights ago could not get ANY air in or out for 20 secs or so scariest
    Moment of my life I’m having a ruff time sleeping since and my panic attacks are getting the best of me
    I’m feeling defeated, I some form of reassurance or somthing anyone else throat close completely off, I couldn’t even try the sniffs or sips of water nothing buring that time

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    1. Same here Leah, I have a hard time sleeping at night because of this. The overwhelming fear that you might die is too powerful, for sure will try the tips recommended!

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  23. I just started having these same exact symptoms over the past week. Started out as a simple cough for a couple of days with no cold symptoms. Now it is happening pretty much every time I go to sleep and even during the day out of the blue. I have been averaging 3 hours of sleep for a week now. I was hoping there was a cure for this but it seems that it is just a condition you learn to deal with which is disheartening for me as it really is destroying any quality of life I have had lately. If anyone hears of any type of actual treatment for this, please post.

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  24. Check with an ENT or gastroenterologist if you have these symptoms. I just started getting this very recently and already found it is linked to another condition I have. You may not know that you have a certain condition that causes this. When I first read this most of the comments made me feel like it was hopeless to correct. I'm sure in many cases it is tough to rectify. I hopefully got lucky with this as I cannot sleep at all. Of course my "luck" might include surgery to correct an issue that is likely causing this problem. Good luck.

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  25. It started with a very hard cough. Then the vcd or laryngospasm started to appear after i coughed. First one or twice a day... now after 2 weeks i am going through 6-8 attacks per day. The throat closes completely and everytime i wonder if i will survive. The best solution to reopen the throat is to sip cold water or room temperature water. This shocks the vocal box and rinse it from whatever irritated it, helping to reopen. This problem is starting to seriously affect my life. Feeling like you are gonna die 6 times a day is something impossible to explain. On top during a major crisis my heart reacted very badly and i ended up at the hospital with tachycardia at over 300... red code and so on... i can't sleep, i cant drive a car, i cant meet a client (i suffocated in front of a client last week... not the best way to manage a meeting).
    I talked with some ENT and even if i have no other signs, GERD is the primary suspect.
    Anyway my advice is, always have a small bottle of water with you. Dont drink too much... just small sips. This also because if it last long you contract so much your diaframma that as soon as u can breath again you will start to throw up the water u just sipped.

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  26. Same here.. searching for any treatment. Greetings from Croatia

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  27. Dear people, after a visit to the top pulmonologist, the diagnosis is GERD.

    Good luck

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  28. I have had a mucusy cough for about 3 weeks now, last week i woke up in the middle of the night urgently neesing to clear my throat and started to spasm. My partner was terrified. Obviously panicked so much the noise is horrible. I tried a few different things like a shower before bed and no eating for hours before sleep and it happened the next night and then the next. Iv had nooo sleep for days now and have got time off work. Went to the doctor yesterday he confirmed laryngospasm and gave me prednisone for the inflammation which treats asthma among other different things he also gave me gees linctus for the cough. I was using mucinex to get rid of the mucus faster and the doc said it makes it worse.. Obviously! It just brings up more mucus you cant clear fast enough. Anyway im going crazy i need sleep but constantly need to cough up mucus and am scared to sleep. Today i have thankfully realised how to not freak out and it goes away or doesnt esculate at all.. A straw!! Of ur about to spasm start breathing through a short straw and block ur nose! Working for me so far. I hope it goes away with this medication!

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  29. You have just described my symptoms exactly. I picked up a mild chest infection a few weeks ago and since then have had the most awful sleep experiences. I experience 3 sep types of waking - cough (moderate to significant retching), wheezing (no breath at all), and the 'drowning' sensation you described above. I resist sleeping now and since beg of symptoms, have experienced a max stretch of 2 hrs sleep at one time. I've seen several medical specialists and most recent diagnosis is of inflamed larynx coupled with GERD/ post nasal drip. This condition is ruining my life and I am grateful for any suggestions as to how I can manage or better still, cure it

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