laryngospasm...have you had this?

I have had episodes of waking in the night, choking and unable to speak or airways close up completely and I think it might be spasm of the larynx....I thought it could be related to reflux and it feels like a dry drowning episode.

Lately, these attacks have become more frequent and have happened during the day while in an upright position. I have had a couple of incidents, where I have stepped into the shower completely dry, got my head or face wet and immediately had closed airways. I make a terrible noise in the throat and am unable to breathe in or out and feel completely smothered and like I am about to die from drowning or lack of air. I have had some incidents of choking whilst eating and drinking, and had trouble swallowing and water or saliva has gone down the wrong way. I cannot actually swallow when lying down and put that down to either being overweight, or possibly a bit of neural symptoms from taking pregabelin. It does not seem to be associated with taking pain meds, as this has happened when I am on nothing. This was the main cause of the anaesthetist refusing a general anaesthetic when I had surgery on my hand, as he did not want me to do that whilst under.

I went to my doc, he had no idea what I was going on about and is referring me to a voice doctor. He also tried to persuade me to stop most of my pain meds, which he always does as a matter of course. Does not make any difference what I am suffering from and he will make a fuss about my pain meds and blame every single symptom on that and hint at me being addicted to painkillers, despite the fact my pain team prescribed what I am on and I am taking HALF the dose they recommended. as my choice....I suffer from a lot of neuropathic pain but choose to just take the edge of it in order to cope. The pain team explained that I would not be dependent on the meds if I manage to take below what is needed to match the pain and also said, if I did become physically addicted it did not matter....if my pain resolved one day, they said I could be weaned off and the withdrawal would be nowhere near as bad as the pain I was getting. I got a sort of phantom limb type pain from median nerve compression as well as pancreatitis, and neuropathy in limbs and other symptoms. My pain was so bad, I was contemplating suicide and my GP was withholding any pain relief telling me it would not help....eventually the pain specialists were seen and I was prescribed what was needed and told that my previous pain attitudes were outdated and barbaric.

I already take anti sickness meds (cyclizine injections when needed) and have severe adverse reactions to others, with fits and spasms so avoid them (e.g. metachlopramide). My doc yesterday prescribed an anitisickness drug for me that can cause parkinsonian symptoms if used long term, and I really do not think it is appropriate to take a drug three times a day and put up with side effects (most of them make me twitch, restless or face spasms) for these airways blockage attacks that last only minutes and are spaced apart (used to be about 2-3 times in 6 mths, but have had 5 or 6 attacks recently over past 6 weeks).

My idea of consulting the doc was to

1: Accurately diagnose the breathing attacks and give it a name

2. Ask what course of first aid is needed, and seek reassurance that my breathing will return to normal and I won't jsut suffocate one day.

My idea was NOT go try and find more meds to stop it happening and make a guess at what it is, and ignore first aid.

I think perhaps he did not believe me when I said I immediately jump out of bed, try and get help making terrible choking noises. He said if I was truly not breathing I would not be able to move....but that is not true. I leap up and try to breathe in or out, cannot, and often run out the room as if its an emergency....a couple of times I have blacked out and come round breathing.

I Youtubed/Googled the symptoms, and came up with laryngospasm and that seems to fit what I have.

General advice by throat consultants online is that these attacks normally subside but are frightening nonetheless.

Why did my GP shrug his shoulders and smile with amusement at this? Like I have just got something odd and unique to me, or like it was nothing? He was being observed by a medical student and I think he was showing off a bit by accusing me of being a long term drug addict because I need pain meds, and having weird unexplained symptoms...he is obsessed with writing out prescriptions whilst I am describing my problem, even if I don't want to take meds and often he hands me prescriptions for stuff I am allergic too, because he jumps ahead of himself and does not discuss the drug before he automatically prints off the is frustrating me no end....goodness knows what he said about me when I left the room. I have had him for 20 yrs and he does refer me and is ok in general so I trust him...but found it annoying he was being a bit blase.....and behaving like symptoms I got were totally unique to me as if I am odd because I have BD....He was treating me more like I am a mental health patient and patronises me when he has an audience. He tries to tease me, and start banter and rows and arguments if he is being observed and I do not like it as it is over familiar and not helpful.

Most people on this forum seek assurance that their symptoms are shared by other BD sufferers.

However, I often feel frustrated that docs associate every little thing I suffer from with BD and often that means I get denied the normal course of treatment or surgery, or actually giving up on someone making an effort to find out what the symptoms are rather than just going ''Oh, you are a strange one, this is just your weird body reacting as usual...must be part of the BD!''.

Anyway, has anybody had experience of laryngospasm and know what I should be doing to ensure I keep breathing as it actually happens? Would be nice if the OH knew what to do. It is the worst experience I have ever had, and causes intense pain and sensations of actually dying before resolving even if it only lasts seconds or less than 2 mins. Sometimes I have a lot of vomit blocking throat and it comes out my nose.

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16 Replies

  • Yes it's almost like I forget to breathe somehow and even drink

  • I don't mean difficulty in breathing, I mean that the larynx completely closes over and it is impossible to breathe. It closes for about two minutes, and is exactly like being strangled or drowning. It makes a distinctive crowing noise as well and is very alarming for everyone witnessing it. I am just worried that the airway will not open again and stay shut. People have died from it, but usually when they are anaesthetised.

  • For about 10 years I would sometimes get a feeling of not being able to breathe or swallow whilst eating. It was as though the act of swallowing would stop halfway through and the muscles would desynchronise when the food reached the trachea, blocking the airway. I would have to massage my throat to get the food to go down before I could breathe again. Around the same time I would also wake up in the night panicking and feeling as though I was drowning or suffocating, but unlike you I was totally paralysed and could not jump out of bed. I would just lie there until the feeling went and I started breathing again. Apparently this night paralysis is quite common, something to do with your head being awake but your body still in sleep mode. Around the same time I was suffering periodic severe pain attacks in the area of the stomach and pancreas. I was in my 20s and getting many Behçet's symptoms but had no diagnosis or treatment. I was self medicating a lot with cannabis and alcohol (that's my excuse and I am sticking to it!) and had a heavy nicotine habit. When the kids came along I had to stop all that. The choking symptoms stopped straight away, and the pancreatitis / gastritis pain became a lot more manageable. I wonder now whether the Behçet's had caused an inflammation of the vagus nerve which was further complicated by all the neurotoxins I was taking.

    Your GP sounds like a steaming tosspot. I'd change him for a human being if I were you.

  • Hi there...I have sleep apnea and daytime hypopnea which sounds similar to your symptoms. It is certainly no laughing matter and I know what you mean by being patronised as being strange or complicated or other words similar.

    I was originally diagnosed with apnea around 7-8 years ago and was left without any treatment for it for some years until I insisted being referred to the Royal Brompton and Harefield Hospital in London. This hospital only deals with respiratory/breathing problems and are fantastic at dealing with unusual breathing problems.

    I also have jerking of muscles and nerves all over my body including my face and the twitching, along with very shallow breathing at times as if I will stop breathing if I don't continue to make myself. Also the strange sound as my throat closes over....not like snoring at all. Lots of Medications make it worse and so I too avoid a lot of them, which Dr's tend to get a little humpy about ;)

    It has since been found by the Royal Brompton that I also have weak breathing muscles and the brain stem inflammation has also affected my breathing pattern. This also as you have mentioned affects the vagus nerve which just about runs the length of the body and ends up near the brain stem.....the longest nerve in the body, causing body jaults which can be pretty acute and painful.

    At first I was given a CPAP machine to help me but it was later changed to a ventilator which I use at night and also during the day when my breathing really starts playing up. The ventilator actually assists with my breathing and has an additional alarm system which goes off if I stop breathing but also carry's over my breathing to give my husband time to call for an ambulance....sounds frightening but not when you get used to it. The greatest thing about it is NO side effects from medication...a very practical solution to a difficult problem.

    I don't know where you live but if you could get a referral there it would be really good for you. If not you will need to try and find a consultant who deals with Sleep Apnea and other breathing issues. There are Centres all around England who do sleep studies etc and this is the best place to start. There are also private clinics who can do a Home Test so that you can go to you G.P afterwards if it shows there is a likelihood of you stopping breathing whilst asleep.

    Also, there are quite a few past discussions on this forum and so if you type the word "sleep apnea" or "breathing" or "Hypopnea" in the search bar up on the right hand side of the green banner, you will get the previous discussions come up.

    I must say that my life has changed for the better since I had the machine and wonder where I would be if I hadn't pushed to get a referral to the Royal Brompton.

    Good luck and hope this helps.

  • This sounds quite similar. I do have all sorts of neuropathy internally and problems in gut motility. The breathing thing is a full spasm, and the pain is dreadful. I just keep making horrible choking sounds. My nose keeps closing off too. Sometimes it is brought on because I vomit in my sleep..that has probably caused a lot of damage and perhaps sensitivty. I was shocked when i started getting it in the shower when water touched my face.....someone else pointed out that is very similar to the reaction people have when they have been given water-boarding torture! Apparently what i have got is sometimes called dry drowning. It can be fatal rarely, but mostly in adults lack of oxygen and build up of CO2 trapped in the lung when airways are totally shut off causes the person to pass out, and then the brain automatically relaxes and opens the larynx up again. What is horrendous is when other people ask what is wrong with me, and all I can do is make loud growling noises and choking in the throat .cannot talk as vocal cords are paralysed.

    The zero breathing episode lasts for about two minutes, then i usually have to get vomit out of my nose and windpipe and it is painful even after antacids. I am up trying to escape as soon as it happens which is automatic panic over the emergency, am not even awake and nearly fell down the stairs. I think there has been some upset with Vegas nerve before, loud noise or. bright artificial light makes me vomit and I was told that this is due to upset of the vagus nerve going across my face, down my neck or something like that.

    My guess is it could be side effect from one of my many meds.

    Or iit could be because I'm overweight.

    Or it could be because the muscles and swallowing action has become quite weak over the years following pancreatitis and chronic vomiting. Or it could be that it happened a couple of times and following that the vomit has caused damage to the vocal chords overtime.

    But my GP had nothing to say about it, except as,ing me to stop my meds which he knows I can't.....he did not give this a name, or explain what was happening. I i'm very disappointed. It is a frightening experience and he should have at least explained to me what is physically happening to me considering that this is quite a standard occurrence with reflux disease or neuropathy or other problems. All he did was type on his computer and print out prescriptions for me without even discussing it and when I kept asking him repeatedly what is this do you know what's happening to me? He just completely blanked me and said well I'm going to have to refer you to a voice doctor or something like that. I pressed him and asked him what should I do a standard first aid when this happens. All he said was it's very unlikely you've stopped breathing otherwise you wouldn't be able to get out of bed and run like that. That is absolute rubbish because the breathing stops for a very short amount of time that in that amount of time it's on bearable and there are first aid things that can be done. I searched online to find out what these symptoms are called and found some very good videos on YouTube. A voice consultant said that this is called laryngospasm. Even my speech to text program recognises this word, meaning that it's in common usage. Therefore my GP should have mentioned this to me. Apparently in laryngospasm the vocal chords shut off completely and no air is able to escape and get through. This causes a great deal of panic but it can also cause low levels of oxygen in the blood and passing out. The recommended first aid treatment, is to breathe in very very slowly with a straw. It is not to panic attack. It is just that very slow airflow across the larynx teases it open. Whereas trying to taking a full breath against a vacuum just makes it shut up even more.

    I think the problems that I've been having with my nose completely blocked due to inflammation is possibly a combination of having vomit chronically passing over it. But also I tend to have strange allergic or behcets disease type reactions to things so the damage is probably worse than a normal person.

    I don't know what has happened to my GP. Over the past 5 to 6 years he has suddenly become very very arrogant and blasé because his line of thinking is that nothing I have has killed me yet so There is no need to do anything about the symptoms I have. He also very conveniently attributes everything I suffer from to the behcets disease, because that is an asy way out for him. When I told him that my grandmother had died at age 42 and my own mother had contracted ovarian cancer at my age and died within a few years at the age of 54 his reaction was well if you were going to get it you would have had it by now so there's no need to worry. He won't do scans and he won't do blood tests because he doesn't want to upset the BD. Unfortunately the ovarian study that was testing people as part of their research has stopped doing it as they are collating results. They don't expect to start up again until about 2017 would 2018. Which could be too late for me should I develop the same thing as my mother or grandmother. Just because I have BD does not mean that I'm free from the risk of dying from a completely unrelated disease.

    Sorry....bit of a rant but docs have really peed me off. I hate their arrogance, snideness and position of power. They make a blasé decision, like taking away or adding a med often without any kind of consideration that you might not want to take it we might refuse to do it. Then if the some reason you don't agree with their decision they start behaving as if you are being obstructive difficult or challenging authority. I'm a grown woman. I am not back at school seeing the headmaster for a rap on the knuckles and expected to go along with every single thing they say. Hospitals often pay a lot of lip service to equality and patient power these days. But in reality there are lots of doctors who consider that having a balanced discussion with the patient is just sitting in the big chair and telling the patients what they are going to do with their bodies. My whole hospital phobia is based on the fact that when I am admitted to hospital I have absolutely no control over what they do. I have been injected with the wrong medicines. I've been given medicines I'm clearly allergic to any written on my wrist band. And in addition I once was almost taken down to have surgery that i had already previously had two days before because their computer had made an error with surgery lists and dates. No amount of me telling the ward sister that I had already had the surgery and did not need to go down again stopped them from getting me prepared and putting me in it gown. I had to refuse to go and they had to get more senior staff to visit me on the ward to "discuss the reasons for my refusal for surgery" and eventually when the consultant came up to the wards he said oh yes she's already had the surgery she needs to be taken off he list.

  • Erssie, do you go to one of the Behçet's Centres of Excellence? It sounds to me like a consultation with a neurologist with knowledge of Behçet's would help tease out what is attributable to Behçet's and what isn't, and if necessary refer you on to other centres, with all the necessary info so they can treat the whole you, and not just bits of you. A voice specialist, for instance, is unlikely to know anything whatsoever about the condition and how it can affect the nervous system. It sounds like your GP is out of his depth. You need expert help with this.

  • Omg !!!!!! Erssie ! Did you ever figure out what this was ?! I have had the same exact things the laryngospasms in the shower and during the night, the pancreatitis, the phantom limb pain, the Parkinson's like walking etc etc ! No one can figure out what happened to me. Please tell me someone figured your problem out !

  • Appt pm 28 June 2014 with ENT....lets see what they say, if anything.

  • Got an appointment at ENT to look down the throat etc on 28 June 2014...perhaps they will know what it is. It has not been happening as frequently lately, and is better if I avoid having too much food...but then I get hungry and cannot help wanting chocolate, ice cream, or extras. Being overweight does not help.

  • Hi erssie.. I hope you find your answer very soon. I would like to share a little about my experience and wonder if you share some of my same issues.. I would have laryngospasms every once in a while as a teenager and still once in a while as an adult. For me it usually while I was eating. For me also like my throat actually collapsed and air couldn't get through or past the obstruction. It usually happened at my lunch time meal and usually while eating a dish of soup (from a can) with crackers. For a long time I thought it was due to me sprinkling some pepper in my soup as I often did. One day it occurred to me it wasn't the pepper at all but because of the salt that was contained in the soup from the production and added saltines. I made a conscious effort to cut back on sodium intake and the attacks lessened but didn't fully abate until I was grown and cooking for my family. As a mother I elected to cook my families meals mostly from scratch and using real foods not processed food high in sodium. When one cuts down on salt. Salt will become distasteful as you are not used to using it. I avoided things such as soup and seasoning mixes, gravy mixes and other processed items. I was not always as careful about some canned veg as it was only occasionally that I used them. Restaurants became a problem for me with many dishes tasting too salty but my symptoms were much more improved. As I became older I began to have odd symptoms of a racing heart chronic fatigue and chronic pain issues. Bechet's was explored and dismissed and I was diagnosed with somatoform disorder.. cut to 30 years later both of my adult children were ill as I had been. Three months later after researching many sites I came up with a plausible diagnosis that fit me in so many ways. An ion channelopathy that curious requires a low sodium diet.. high protein fats and high potassium. In three days on the new diet pain free much stronger physically and finally had my answer.

  • Hi Erssie & everybody else,

    This is my 1st post. I read your post Erssie and had to give you my take on my experiences and for you to try and see if this helps you or anybody reading this.

    I have awakened with these symptoms too, I started paying very close attention to what I was doing or taking differently and only noticed it when I was prescribed meds with Yellow Dye in them. I noticed the entire month when I was on a pain medicine that had Yellow Dye in it...that it was the only time I experienced these horrible episodes of not being able to breath and waking myself up and hearing my own self wheeze and gasp for air. I would have to sit up as fast as I could and then would stand up and walk around until it passed and I was able to breath normally again.

    I asked my former Dr. to decrease my pain medicine back down to the one that had no Yellow Dye in it and I had no more of these breathing problems. The breathing problems went completely away! Needless to say, I won't be going back to this Dr. that would not listen to me telling him I was allergic to Yellow Dye!

    He said, "oh's no big deal...only some yellow dyes are people allergic to ! (I sat there thinking...well, so, is it worth me risking the side effects to find out?)

    I am going back to the other Dr. that found the Yellow Dye Allergy problem in the first place...even though he is 45 minutes away from where I live. I will travel there just to be able to tolerate medicines that I need to be on and not have to wake up not being able to breathe!

    Look up the ingredients of your meds online or in a PDR and see if any have Tartrazine in them...if so they have Yellow Dye in them. They can be Yellow or a Greenish color.

    Check your meds and see how many are Yellow. (Especially any pain meds.) It could be a simple fix for you and others by just not ingesting the Yellow Dye that you and millions others are allergic to.

    Also look up your meds and research and see if one of the side effects listed in "Respiratory" says - Laryngospasm, Respiratory Depression or Depression of Cough Reflex.

    Yellow Dye is banned in many countries. For the life of me, I can not figure out why America still uses it?

    Google or do research on Yellow Dye Allergies in medicines. See if your symptoms match and then tell your Dr. to switch your meds to ones without Yellow Dye and tell the Pharmacy and all your Dr.'s you are allergic to Yellow Dye.

    Luckily for me, I have a Dr. that found out I do have a Yellow Dye Allergy and he pays attention to what he prescribes to me.

    Best of luck to you and everybody else. I'll be praying for you all!

  • hi there

    not sure who or where you are as your name at the top of your reply states "hidden" and can't be clicked on :(

  • I dont have any meds with Sunset Yellow in them (which is actually in pink meds too) because of trouble with asthma which is entirely different from this. My problems are more like vomiting in my sleep, not being able to control swallowing or closing off airways so it gets in there.

    I am seeing docs about it but getting nowhere. I literally cannot breathe at all because the airway is shut off completely, like drowning. Whereas if I have pink ibuprofen, I get breathing difficulties which means I can actually breathe but it is poor. That is not the same as when I get the larynx spasming and not opening.

  • Basically what has happened is that something which used to be an automatic subconscious action has become the opposite i.e. a conscious action which is now being overthought. I had my first laryngospasm in 2008 and a really major one around 3 years ago. I was checked by a consultant with a laryngoscope (basically a scope with a camera that goes up your nose and examines your throat) and told that I have an overactive vocal chord. I was then referred to a speech therapist who very much took me down the route of it being GERD (Gastro Esophegal Reflux Disease) and to avoid caffeine, cheese, i.e. anything really nice. I think in my heart of hearts I knew if wasn't GERD, but I took that advice. It didn't help. About 2 years ago I had a choking episode with my dinner - eating previously hadn't been an issue, but as you'll know, this thing progressively gets a hold on you to the point where you are scared to even swallow. My last one was November 2014 in the kitchen at work. It was scary,, but no-one was around, and it was over in less than a minute.

    Anyway, being a fighter, I refuse to let this this beat me, so I carry on carrying on, and like most of you, I have some compensation strategies, like clearing my throat before swallowing etc. Here are some tips that I've picked up along the way, which help me, and I hope that they help you.

    - Ultimately, it's all about distraction. Easier said than done, but if you can somehow take the focus off the actual swallow and think about something else, that can help

    - I find water hard work, but what I can cope with quite easily is smoothies; milk is also not too bad

    - I believe that this is tied in with stress, and that it's a vicious cycle i.e. we're stressed because we're scared of having another laryngospasm and will do anything to avoid it, hence we overthink swallowing. I want you to know that this is natural - it's the body's defence mechanism kicking in

    - Some days are better than others. On the tougher days, make sure you stick to foods that are more sloppy, like pasta in sauce etc. One food I really struggle with is potato, as it's 'furry' and feels like it's sticking in my throat

    - Get some straws, cut them in two and carry them with you in case you have an episode. By using the straw you will need to purse your lips and breathe in a certain way. It's really important that you don't panic and gasp, but stay calm and take controlled breaths. Watch this video which should help.

    - I have been very tempted to seek help via a hypnotherapist, as I really do believe that much of the problem lies in the fact that this is learned behaviour that has replaced previous behaviour in the sub-conscious. The only problem is that a hypnotherapist could well fix this, but if I have another laryngospasm, I'm back to square one, and several hundred pounds worse off. I would be interested in whether anyone has had any experience via this route.

    I have bookmarked this page and will keep checking back and giving you any further experiences I have which I feel may help. I am being referred to an SLT (speech language therapist) again, but this time around, I am much more experienced and informed.

  • That isn't quite the same as I have been suffering from. I am vomiting, quite extensively, whilst I am asleep then inhaling the vomit. I am not conscious as I wake up like that. so does not have a conscious/overthinking part to it. However, even though the larynx will open eventually I cannot breathe because I am drowning in my own vomit. Every time I try and cough up vomit from the lungs, it hits the larynx as it goes through and action of liquid on there closes it up again. It is supposed to be for safety, but really does not help if liquid has already gone into the lungs. I did breathe in a lot of water as a kid, when swimming in the sea and went under, and it was the same sort of sensation...not being able to breathe at all without coughing the liquid out again...but it is doubly worse because of course the vomit stings much more than sea water.

    The doc thinks that when I have had this happen whilst conscious, in the shower, or whilst eating/drinking, it is an entirely different thing from vomiting in my sleep and is a reflex action. He did not think there was any reason to bother about that, he was more worried about the contents of my digestive system flowing into the lungs when I was not conscious..

    I also suffer from nerve damage due to the Behcets, and that as well as nerve drugs have made my swallowing difficult to control. I am not able to swallow at all if lying down and I do suffer from abnormal sphincter pressure. I think my sphincter is not closing up properly when I fall to sleep, and relaxing or dozing off seems to open it up. But I do suffer from a lot of vomiting and nausea and inflamm bowel symptoms anyway, but if I am asleep when that happens it is getting a chance to force its way up before I am awake and so am inhaling it and waking up choking.

  • The swallowing problem sounds a bit like achlasia. You should get a manometry done and a barium swallow (for warning, this can make neurogenic bowel a lot worse). I have achlasia and GERD (both are scleroderma symptoms actually, along with severe constipation) and they might be the cause of your tendon issues (I have tendon friction rubs on almost all of my fingers and ankles, the problems with the tendons have caused flexor tendon contractures). The Achlasia causes a regurgitation but when combined with GERD, as the acid is in your esophagus and the esophagus spasms the choking sensation occurs, severe pain and aspiration. Oh the life of neuro Bechets and Scleroderma.

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