I am a fifty one year old married man with two children.
Not too many weeks ago i was a Support Co-ordinator (full time volunteer) with County Community Projects, working up up 50 hours a week with the Family Services team and specialising in children with behavioural and emotional difficulties, engaging with the likes of Amberley Ridge, Coln House School, multi agency meetings, CAMHS and professionals at all levels. Hardly the kind of job for a neurotic hypochondriac ???
Now, I struggle to inhale because mucus blocks my airway. Constantly using 999 for ambulance, vitals always good and with oxygen, although my levels are fine, mucus clears and I'm fine till the next time.
Because of the lack of investigations I have had contact with, and advised by, various research centres, respiratory hospitals and heart/lung foundations including London Bridge Hospital, Royal Brompton Hospital and Adult Cystic Fibrosis Centre. These experts in lung disorders inform me that I should, of course, be very concerned and that my local NHS members should share that concern.
Because of this, I am considered to be a neurotic hypochondriac by Gloucester Royal and Churchdown Surgery and am told that I should not attempt to self diagnose. I totally agree.. I should not need to, of course. The most unprofessional behaviour that I have shown is to refuse to leave the surgery without a nebuliser.
With no official diagnosis, I stand alone, as a full time carer for my wife, who has MS, two children, a 7 month great dane and a doberman.
I had no choice than to stage a sit-in at Churchdown Surgery until I was given a nebuliser. I am NOT going to die of asphyxiation by mucus plugging in front of my wife and children just because the likes of Dr. Henderson and Dr. Mcrumb think that I over react about my situation. I have been told that I act like a neurotic hypochondriac by a Doctor at hospital, purely because he has not physically witnessed any of my attacks.
I will continue to attempt to video these attacks and post them to youtube under "mucus block attacks" to show the arrogant neglect that Churchdown Doctors Surgery, St. Johns Avenue, Churchdown are showing.
Dr Mcrumb actually laughed at my 10 year old son as he was trying to explain my 'attack' to him on the phone yesterday, and told him "don't be so silly".
Following this, Dr Mcrumb came to visit, prescribed more ventolin, and assured me that he would source a portable nebuliser but in the same breath tells me that I will not get one because he does not deem my condition to be serious enough. If this is the case,,, why does he continue to prescribe three different nebuliser solutions and agree that I need those ?
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mikemesza
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I have very severe copd with a lung function about 25%, and use oxygen on rising for ten minutes then anytime I am walking or doing any exercise. Mostly it is emphysema but I also have long bouts of bronchitis that leads to lots of 'plugs'. I woke at 3.30am this morning coughing violently as my body tried to move a 'plug'. I reached for my Ventolin, this is always within reach 24/7, took 2 puffs. Then within a minute plug up and layed back down to sleep. We have to learn how to handle our illness and all the very unpleasant symptoms of it. I doubt if your doctors are being arrogant. I work with not against the medical professionalism gaining knowledge from them and in turn helping to educate and give an insight to our problems to them. A nebuliser unless you are having a severe exacerbation is not likely to help anymore than a couple of puffs of Ventolin. I can understand the panic you may feel on shortness of breathe. And sincerely hope you manage to overcome irrational fear as copd will get worse. I myself think an appointment with a psychiatrist to help you overcome your fears is the next course of action.
I'm very pleased that your "mucus plugs" are so easy to clear with just two puffs of your inhaler.Thankfully, then, they are not causing too much discomfort for you. My wife would understand, as she had mucus plugs when pregnant with one of our children.
My nebuliser works well for me now as I am lucky to have neb solutions that suit my condition, also, oxygen, which helps me to inhale and then cough up the thick mucus. Thank goodness yours is thin enough for two puffs of Ventolin and that you are able to inhale enough to take it.
On another note, I wonder if you would be so kind to reveal the contact details of the psychiatrist that you yourself must surely use ? The details may indeed be useful to pass on to one of my clients, or, in case I have contact with another irrational person.
You have such an enormous amount of stress together with the COPD. It must be very difficult for you. I wonder if a change of doctor may help. Perhaps the breath easy group could point you in the right direction. I think there is a help telephone line which maybe able to help. Good luck. TAD xx
It does not sound to me that you are a hypochondriac but someone who is scared and therefore panics which is perfectly understandable. I think we all need a name to relate to (i.e. COPD, Bronchitis, sever asthma etc.) because then we can try and get our heads around it. You do not seem to have a diagnosis which is what you do need urgently. You have a lot of stress in your life by the sound of it and nobody, Doctor or otherwise, should be telling your young son not to be silly when he is trying to do his best for you and describe your attacks. I do agree that you should try and work with professionals but remember that they are only human too and do not always have all the answers. If you have an inhaler then use it when you need to and never give up. There is lots of help out there and coming on this site is a great step in the right direction. BLF can help you and so can Breathe Easy. If you have to change your doctor then do, but make sure you work with the next one and try not to fight against them. Good luck to you and let us know how things go. Try and get all the help and support you can because it sounds like you need it. Take care. Just to clarify: I do not suffer from breathing problems myself but care for my husband who does. He has sarcoidosis (21 years) and COPD (2 years). I wish you well. sassy59.
You are not alone, I bought my own nebuliser and find saline the biggest help to removing gunk. I use 0.9 saline and a few grains of pure sea salt from my kitchen... then use my pep.
I desperately need an acappello too.... my clinic are dragging their feet (funds?) so another person on here has helped me, now I know what and where to buy one from. The help from people on here is wonderful.
You really should not have had to buy your own nebuliser. As you have non cf bronchiectasis I am wondering if you have a respiratory consultant who has a special interest in cystic fibrosis. His/her team would usually 'loan' you a nebuliser which would be checked over by the equipment pool annually. Also the physio or specialist bronchiectasis nurse would 'loan' and go through using an acapella.
Just wondering why you add sea salt to 0,9 saline and if your consultant has ever discussed you having a tolerence test for hypertonic saline which is 7%.
Hi Mikemesza
I really appreciated you have a lot on your plate and it is understandable you are getting into a panic. I am sorry your relationship with the docs at your surgery have come to this. I understand your desperation as you don't feel your health issues have not been acknowledged, but, and I hope you don't mind me saying this, I think staging a sit in etc will not achieve what you really desire. By the way the docs treatment of your son cannot be justified and is most unprofessional. I am not sure by what you say if you have actually seen a doc at any of the hospitals you state Brompton etc. or if you have spoken to someone there. Is there one gp you feel you could discuss your symptoms with quietly and in an undemanding way, working with them to check out if there are any investigations you need to find out why you are having these problems with mucus. Good luck and best wishes.
Hello again cofdrop & Mikemesza, sorry late reply, only just learnt to find my way back on this site.
saw Mike on utube and that mucus cough looks/sounds like it's comming from sinus not lower lung as with me, my cough sounds more deep /congested in lung. many things agrivate mucus - dry house air, vacuum cleaners need damp filters to catch dust, bedding needs hot wash twice a week, if Mike is battling with all this, dogs, wife with MS and kids ?.. I don't know but it would overload me.
I just bought a dehumidifier, might help.
even so, salt in neb for me is massive help for lung & sinus.
Thankyou cofdrop, your link to drfoster told me my consultant is not a CF specialist. I have asked for hypertonic saline many times, they said they would "consider" bringing me in to try it... when ?? and it's a log way from me, can't leave hubby, he needs help in the night...
GP gave me 0.9 saline, not strong enough, so logicaly, after maureenjjj kindly told us adding sea salt worked for her, I gave it a go. at least I can play around with the strength, just one crystal was good diluted in the 0.9 sterile liquid.
Panic was, of course, an issue in the beginning. Frustration was more of an issue simply because I was told that this was down to the likes of Angina, Arthritis, blood clot on my right lung, IBS and muscle spasm. ??????
My GP gave me a nebuliser, Atrovent, Ventolin and Saline. I have Guaifenesin, Clarithromycin and Prednisolone. My GP has since apologised for not taking my condition seriously. Barium meal= normal,
Lung function test was normal (I was on a good couple of hours at the time), CT scan shows inflammation which is being followed up by Bronchoscopy (been once but they cancelled due to difficult breathing) on the 10th, ENT next month and Endoscopy next month.
I also had to purchase own nebuliser but get meds on prescription via Gp.
I am lucky in having Gp that actually takes the time to listen to me and take what I say seriously. My own experience of consultants at hospital is similar to yours. I attended Royal Brompton for years with them telling me they had no idea what wrong with me and that my Gp poisoning me with steroids!! My Gp diagnosed me (without telling me at 1st) then got me to research things via internet with her "pointing the way" so I came to own conclusion what actually wrong with me.
Hang in there - you know you aren't making things up and take comfort from those that actually hear what you are saying.
Hope things work out for you. Feel free to contact me.
I would just like to say I am also from Gloucestershire, and have had no trouble with Gloucester Royal Hospital, in fact I think their consultant is very good. My surgery is fantastic and listen to me as I listen to them, I think that is what is needed consideration on both sides, not demands. Perhaps it is the fact that you had that sort of job that makes you think you know best, just bite your tongue and listen it may help!
Glad you have had an apology from GP. Have you ever been referred to a physiotherapist to teach you techniques to get the mucus out? I note you neb saline and it is so helpful in dislodging the gunk, but works better if you can do some physio after. I expect you already know it is important to do the nebs in the right order - bronchodilator first followed by the saline, then hopefully some form of mucus clearance.
Good luck with your appointments.
X
Hi I might be wrong but I don't think you can die because mucus blocks your airway unless someone knows different. Mucus is often helped to clear with steam. Put boiling water in a bowl and bend over it with a towel over your head and breathe in. Do this for as long as you can stand it. It might help.
I do think you have a lot on your plate. Do you have any 'me; time or any hobbies you can follow? You sound very stressed but I must agree that a sit in at your doctors probably isn't the most constructive way to deal with them. Perhaps you could find another surgery and start afresh?
Totally agree with you hypercat re the benefit of steam inhalation. It's a very old fashioned remedy but very effective, especially with a drop of menthol and eucalyptus or Olbas Oil. although the water should be off the boil. Great if your inner ear is gunked up too. My GP is very in favour of inhalation, but cannot recommend to patients generally because of the health and safety of the possibility of scalding. Betterware do a brilliant inhalation gadget - much safer. It is basically an insulated bottle and it has a little mask on the screw top - safer and your hair doesn't get soaked. Really cheap too. Here's a link:
I went through similar before diagnosis. I woudl wake in the night and feel like I was choking. This is goign to be really grim but I was suffering from mucus which had dried into hard little balls in my through and they woudl lodge in my windpipe and make it difficult to breathe. I tried to keep calm and tell myself that I coudl still breathe but the panic was blinding at times and this was hapening almost every night. I would dread turnign over in my sleep as it woudl dislodge them. I bought a similar contraption as that shown above from boots and it did help. it loosened the little mucus balls and made them easier to dislodge. Even drinking a cup of very hot boiled water had a similar effect.
It is desperately scary. I haven't had this since I was diagnosed. I am not sure what stopped it, or indeed what caused it but I can completely sympathise with the utter terror it can create. I used to dread going to sleep. You might also want to try a nasal spray like sterimar (available at chemists). I was convinced the mucus was not coming from my lungs, but from my nose and clearing it out pre bedtime helped.
I do hope you get a diagnosis and some respite from this.
Marie
x
Cofdrop - do you find Betterware's inhaler keeps the water hot for more than a couple of mins? I bought a similar looking one from Boots but the water cools too quickly so you don't get much steam from it.
Mike - it sounds to me as though it's the very thick mucus plugs which are alarming you most of all, and I can relate to that as it's happened to me a few times and seems for a few moments like one's airways are completely blocked. But it's impossible for that to happen, the air which is behind the mucus will always clear it. However it is frightening. Something to thin the mucus might be very helpful to you. Lots of people with cystic fibrosis, and non-cf bronchiectasis, find 7% saline very helpful. You could ask the hospital to give you a tolerance test for that (it's too irritating for some people).
If I were you, I would definitely change your surgery (and even your consultant if you don't have faith in the one you're seeing - a second opinion might put your mind at rest). What was said to your son is totally unacceptable. Ask around for a recommendation before you change, I had a rubbish gp years ago and now have a lovely one who really helps me manage my lung problems (and therefore, I hardly ever need to see him!)
There is no doubt a big element of anxiety in your condition, but your drs should be helping you with this in a kind and caring way and realising that any unreasonable behaviour you display is a symptom of extreme anxiety, which is a frightening thing in itself. I think you should be having some help for this anxiety, once it takes a hold it's difficult to deal with on your own. You obviously have a huge amount on your plate at the moment, caring for your wife, and need help to stay calm and in control, if only for the sake of your children. The situation must be very worrying for them.
Hi. Mucus blocks are actually the cause of death for 15% of copd etc according to various research centres. I do have hobbies etc. I still work part time, have a great dane puppy, two children and am a full time carer for my wife. She has MS.
As far as my GP surgery is concerned, I have been polite and courteous. They have, in fact recognised that this "condition" is not fictitious. People seem to be under the impression that I have shown impatience, arrogance and turned a deaf ear to what my GP has previously said. That is not the case. I simply did not agree that this was caused by the likes of arthritis etc.
As for the "person" that suggested I see a psychiatrist, with any respect that may possibly come your way, I don't believe that you read the full account.
Thank you to the people with sensible suggestions and advice. I fully take note. It's just that this has continued for approximately two years and taken that length of time to be taken seriously and referred to a consultant.
I think what is difficult for you is the lenght of time things taking. I just reiterate hang in there! It has taken me 4 yrs to get diagnosis but as said before I v lucky with Gp(s) who understood that something seriously wrong and observed me at my worse. I was the person who at one stage queried if it could be "all in my head" and my Gp actually laughed at me and said there was no way I could fabricate the syptoms he was seeing. I was just at that point desperate for any answer.
Having a diagnosis has made a HUGE difference in how other people are treating me including family and friends and also in how I view my self and waht I am now putting in place to make my life easier.
One of the big probs with online sites and in life generally are texts. They writers words can be misinterpreted, I'm sure you will agree, as there is no body language or inflection to go on.
We have all come across great docs and rubbish docs. I can appreciate how frustrating it can be as I have changed consultants twice in the past, not resp I hasten to add (he is very proactive), one of those whilst I was part carer with my sister. Even now I have to occasionally fight my own corner. Having bronchiectasis since babyhood I still come across the occasional doc who will prescribe 250mgs Axox for 5 days. Well I might as well use them as a suppository and I must admit I have said it to them, but I have followed it up by saying 'as you know with bronciectatics we need higher and longer doses'. Then he will check my repeats and prescribe accordingly,noone loses face and he might be more aware when a bronchiectatic walks in. It all depends on who you get as with everything in life.
I really hope you get a very proactive consultant who will keep you at your optimum best. XXX
Hi Zube
You're welcome. Thanks for explaining why you add extra salt. You shouldn't have to leave you husband overnight sweet, the hypertonic tolerence test is usually done as an outpatient appointment and really just includes taking a bronchodilator and then nebulising hypertonic. If you tolerate it and don't have spasm you should be out in about an hour. Then your GP can prescribe thereafter. 'Course you will win - you're a tough cookie. XXX
Hi Fairyfootsteps
Don't know anything about the Boots one sweet. None of these gadgets would be as good and stay as hot as using a big bowl I would imagine, but saying that I find the bowl stays hot much longer than necessary anyway and the flask is less of a fuss. The Betterware flask stays hot enough long enough for me to do an inhalation session. I guess it's trial and error really. You know us bronchs we're all different in what we find helps. Although my Mum used to often stick me over a hot bowl, I imagine the flask is useful for use with children and some elderly who need supervision. XXX
After my bronchoscopy 2 weeks ago, and recent blood tests I have confirmed copd, first stages, have also had whooping cough and 'a bit' of pneumonia. This, apparently, is not the cause of mucus making my breathing difficult. No wonder I was struggling.
Ive had a good two weeks of feeling stronger and have been able to sleep for a few hours a night.
Oxygen levels are pretty much 92% at best now but do fall as low as 78% at times. Still scary, but obviously manageable.
My GP keeps asking for 'their' nebuliser back, which would be fine if, when I have exacerbations, I could actually use the inhaler adequately.
Met a few people at GRH with very similar symptoms as mine, who also seem to be struggling to be taken seriously by their doctors.
It's simple really; when mucus is present in the airway breathing is difficult. Find the cause. Surely this particular problem cant be so rare ?
I'm replying to this thread because about 6 months back I had a severe cough and had several episodes when I woke up in the middle of the night choking on mucus (at least, that's what it felt like) and I was literally unable to breathe for a couple of minutes. My wife called an ambulance several times, each time fortunately it had settled down and I was able to breathe normally by the time the ambulance arrived so they checked me over and referred me to my GP. I then found it hugely frustrating trying to work out the cause of the problem, and my GP try lots of different remedies to see what would help (none of which did any good).
Anyway, it was only when I was referred to an ENT consultant that I was properly diagnosed as suffering from "laryngospasm" - it was actually nothing to do with the mucus in my case. This means the choking attacks - in my case - were not actually something (like mucus) blocking my throat, but rather were caused by the larynx spontaneously closing up for a short period due to irritation caused by having such a severe cough. Understanding what was happening helped me to stay calm when I had a couple of further attacks - it's essential not to panic and try to breathe slowly when suffering from laryngospasm, which is not easy to do when you're unable to breathe - you automatically try to take in a huge breath which doesn't help.
He advised me to make changes to my diet, and thankfully after the cough went (which took months) the problem hasn't come back. There's lots of stuff online about laryngospasm, the problem for me was finding out that it was what I was suffering, cos I'd never heard of it.
Obviously that's just my condition and lots of other conditions can cause breathing difficulties, but I'm posting this so that anyone else suffering from these sort of choking attacks who thinks it fits their symptoms can mention it to their doctor as worth checking out. I had searched the internet for my symptoms for ages with no joy, but I'd literally been talking to the consultant for just 15 minutes when he made a provisional diagnosis (subsequently confirmed by a specialist).
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Re: cough cough cough
Covid spring booster Scotland
My new friend, The Nebuliser.
Made it home ok thanks all. Another day another saga. 
Lung reduction operation 
