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Nebulizer for home use

Hi does anyone here have a neb for home use? If so how did you get it ie from gp prescription special asthma clinic or the cons at the hospital? Many times I am told I should have a neb at home but the docs dont help me with anything. So I would like some advice on how others got to their nebs at home.

Thanks in advance

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Hi, its not clear from your post who is telling you that you should have a nebuliser? This is something which should be discussed with your consultant, with a documented asthma management plan to ensure it is used safely and appropriately. Your consultant can then ask the GP to prescribe the nebules.

It would be very unusual for a GP to prescribe home nebs and isn't considered good practice - if your asthma is that unstable then you should be seen in secondary care by a consultant, and even then, most folk aren't advised to have home nebs, but to seek medical care in the event of an asthma attack. This is generally considered safer.

Lynda

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Hi Lynda,

Thanks for your answer , but the docs in a n e tell me and the doc on the ward I should have one at home. Have a phobia of going to hospital so whenever I go its too late and also even when I am sort of ok I use too much salbutamol all in one go at night or morning and I easyly get into an attack just a bit of perfume is more than enough. Been many times to hospital but in most cases lots of nebs will sort me out my inhaler technique is good and I use a spacer at home . The reason for the neb is so i dont need to go to hospital almost daily now but my cons just books for me some tests after 3-4 months and then i ll see him again which is very long time but nothing can be done? even though been in itu few weeks ago ?

The gp too is so much not helpful as he says theres nothing we can do just cope with it ? and thats it .

Dont know if its my docs and my luck or everyone else is like that ! But my docs will give me appointments after 6 weeks at gp and months 3,4,5 or even 6 months at cons and all i get told is there is nothing we can do you are on max treatment?! The cons will not know anything of whats going on with me and all he will do is listen to my chest through 3-4 layers of clothes and send me for a test and give me an appointment in months time. ? wait for nothing.

Sorry about the waffle but just trying to recover from yesterdays attack .

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Hello, I have a nebuliser at home and it was prescribed by my consultant. However my other consultant at a different hospital says if you have to have nebulisers at home you should be in hospital anyway. My home nebuliser seems to help me for like an hour and a bit then I normally end up going to the hospital anyway. But this could be due to my nebuliser being air based and not oxygen based.

But everyone's asthma is different and responds to different medications/ treatments

Good luck x

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Hi!

Thanks for replying! The purpose would be that no need for hospital as they usually give me nebs and i m ok after a number of hours but i usually go too late when i am too bad so it would prevent me getting to that state. But they cannot agree just with your point saying if i need to use nebs i should be in hospital anyway.

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The issue is that there is a lotmore they can do in hospital if the nebs didn't work. They can also monitor the side effects of the nubulisers much more closely. I know how frustrated you feel having to go to hospital 'just' for a neb. If you deteriorate slowly, then it might be possible to get a GP or OOH appointment (OOH is accessed by dialing 111 usually in the UK) where they do have nebulisers if they feel you need a neb, but not to go to hospital.

I got quite lucky with home nebs, and I do have them now, and it does mean I am in hospital a lot less, but it is a temptation to rely on them for too long - which can mean you do get very poorly. As I have regular nebs throughout the day, we've decided that 'in theory' i shouldnt ever need a neb as a 'emergency' so if I ever had one i have to contact my GP (assuming I am completely better) and if not, i go to A&E anyway.It can actually make it more awkward if you go to A&E, if you get a doctor who doesnt really understand proper asthma management they can have the attitide of ""why did you come to A&E if you have nebulisers at home"" which is irritating!

also - home nebs isnt going to stop you using too much salbutamol - nebs IS salbutamol so having a neb is like having about 10 puffs of salbutamol inhaler!

GPs have a limited number of options as to what they can prescribe - consultants have a lot more available to them! But obviously most things that are non-urgent take a long time with consultants! WHat treatments are you on at them moment?

hopefully you'll be on the right preventative treatment soon and so wont NEED nebs at home - then its problem solved!

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Lol having a neb is way more than ten puffs of salbutamol inhaler. They suggest that in terms of *efficacy, it is similari but the actual drug dose is very different. 10 puffs of salbutamol inhaler = 1000mcg or 1mg. A neb is either 2500mcg/2.5mg or 5000mcg/5mg.

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I found that 10 puffs of your inhaler is no where near as effective

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Yeah - I never really understood that! I just assumed because it was quoted so often it must be something to do with the amount of time spent exhaling! It's weird - i've never got anything like the same relief from ten puffs - i've never heard an asthmatic who has, and yet docs say it all the time!

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Hi Soph,

Thanks for your reply but not going anywhere really with consultant sending me to gp and gp sending me back to the cons feel like just a stupid arguement ! Anyway the docs are still arguing about the nebs too so I dont think they will give me anything till I get the breathing test done at the end of august ?. Seems like years! But anyway will get somewhere at the end of all of this.

Once i rang asthma uk and they said that a neb is equivalent to 12-50 puffs?

And getting of salbutamol i meant that i wouldnt have the problem of using one inhaler each day so thats 7 a week and the pharmacy will not give me that many in one go so i have to have many prescriptions ?which is what is annoying!

I can imagine how frustrating it is to go to a n e and get told to use your nebs when i get told to use my inhaler!

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I have a home nebuliser, if I went to hospital every time I needed it I would live there! It also helps to return home sooner to manage myself.

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Hi , I have a nebuilizer at home the hospital recommended i have one my gp arranged it with the asthma nurse at my doctors and it was delivered , because my asthma is quite bad i can use it upto 4 times a day and with other meds which are closely monitored ,everyone is different and needs a plan , make a appointment at your asthma clinic and talk about it and your options and how they can help , but having the nebuilzer does not always help and i end up in a&e and have to have injections to open my airways or magnesium , you should always seek medical advise .

Tina

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The pharmacy should give you as many inhalers as youre prescribed, but one a day is an awful lot! you're going to have a lot of side effects from that much salbutamol! Does your GP know you are using that much? What do they say about it?

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One inhaler a day is 200 puffs a day. No GP should be prescribing that amount of inhaled salbutamol without an urgent review. I find it hard to believe someone could consistently use that amount chronically. Depending on how much you sleep,that's 10-20 puffs every hour you're awake. Every day. :-/

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I sleep on average maybe 2-4 hours a day divided into 30-60 min at most staying at home most of the time as i dont want to go to hospital eventually got to see the consultant but she did no difference just wait til september for a lung function test. The gp knows how much i suffer but he cannot do anything and knows how much salbutamol i use but what else can i expect from them when i have a cons?! Even if the cons just asks for a test to be done after months. Really it seems like torture sometimes but i am still luckier than my friend who couldnt get a salbutamol inhaler from her gp nor hospital after her attack.

Gp sends me to hospital and in hospital they send me back to gp with the usual horrible letters so the best option is to stay at home?. Also 1 a day for me is sort of ok previously have used 2 a day as well. And i dont sleep much and when i sleep i still need it will wake up no matter what. Asked the gp for sleeping pill said no. Asked for the nebs they said not before the breathing test in september ? so just have to wait no other options now. ?

But thanks for ur replies! Hope at least ur doing ok

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Yeah - they don't really give asthmatics sleeping tablets! They just arent keen!!

I really find it a bit scary that your GP is ok with you using that much salbutamol - especially if it used to be more! What dose of prednisilone are you on? and what other medications? (sorry if you've already said this - im tired!). The problem is that you are going to end up with really low potassium, and then your heart is going to go mental - and the thing that will likely do first is make you feel really short of breath!! I really worry about you using that much, and im really concerned if your GP thinks it is ok! Are you SURE they know you are using a FULL inhaler each day?? Have you ever tried going to GPs when youre unwell and they can give you a nebuliser there? And actually - with that level of symptoms he should be writing to your consultant and asking for an urgent lung functin appt - they can be done!

My real concern is that instinctivly *something* just doesnt feel right - i cant imagine a resp cons looking at the amount of symptoms you are getting and not ordering something urgent, and so if from a resp point of view things seem ok then you might need to seen by a different specialist! Not saying this is what you have, but the first time i rocked up at A&E with SVT i was convinced I was having a (slightly weird) asthma attack - i knew there was something a bit different, but i also knew i was finding it really hard to breathe and my inhaler wasnt doing a lot! SO if there is something going on that isnt respiratory - then you want to be reffered elsewhere. Do you do all the 'typical' asthmatic things - dramatic drops in peakflow, wheezy chest, reduced air entry, o2 sats dropping, wheezy cough???

what do the letters from the hospital say?

When you go to A&E how many nebulisers do you usually end up having before you get relief? Has anything else abnormal been pointed out? They always used to get very worried about my pulse during attacks, and SVT was queried a few times before i was formally sort of told i had them!

2-4hrs sleep really aint a lot! And if youre never sleeping 90mins in a row you'll never actually get a full sleep cycle - i'm surprised you still function!! That also probably needs looking into as actually the human body needs to do the full sleep cycle or it will stop working! Brains don't like not getting any sleep for prolongued periods! I'm impressed that you still manage to wake up! My brain has a tendency to go on strike if my lungs keep me up for a couple of nights - eventually it just says ""nope - she aint waking up just yet!""

hope you feel better soon!

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Hi Soph!

Thanks for ur reply but yes I am sure they know how much salbutamol I use. I am a very typical asthmatic got wheeze cough chest tightness and shortness of breath and shaking from salbutamol . Very typical. Lately feel my chest too is shaking with each breath probably another infection which the docs missed ?.

Got now some new meds

Tiotropium 18mcg

Seretide 250/50 3 puffs x2

Theophylline 300 mg

Montelukast 10 mg

And salbutamol

And not allowed pred tablets nor nebs at home according to the consultant before breathing test. Now they brought my appointments forward so I see the cons every week or 2. They too got scared. Been in hosp this year more than 15x had 6x infections and been in itu last month but still feel awful .

My peak flow is up and down in the space of 5 min it can drop from 280 to 100 or below ? no good. The gp said i have brittle asthma and theres nothing he can do. And its not a panic attack either as i can get a. Attack whilst laughing!

Sats too are terrible o2 is usually on a good day 93% on a bAd day is really bad . But as i am used to play basketball i can tolerate it even at 43% and i am still sort of fighting but thats when i end up in hospital ?. But at least thank God i recover fast but i need a good 4-8 h of nebs before i get better if my sats fell. If they are still ok i only need like 4 nebs like about an hour and i am fine.

And i am really lucky somehow i always manage to escape the ventilator even if my o2 sats are 43% .

And dont worry will see the cons on tuesday and last time i saw her was on monday so at least they started to pull my appoitnments forward to get some treatment?.

Hope ur ok ! And sorry about waffle but my chest is playing up again feeling like hospital sooner or later.

Yeah forgot to mention the letters always say ""her next exacerbation will be fatal"" and ""very reduced air entry"" and awful stuff ? had a lot of conversations about death with docs and nurses but i have been discharged from hospital and ended up in resus in a few hours time even the docs think most of the time will not survive but i always do so just thank God for that ? and sorry about putting it this way but its sooooo annoying for a 19yo to live this way ?

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Sorry.....oxygen sats of 43%??? Do you mean peak flow??

Have you considered changing GP practices?? For one thing - I have never heard of an asthmatic being allowed to use that much salbutamol without being on long term steroids.....it just makes no sense - nebs, yes, GPs can't really prescribe them, but pred is a pretty mainstream treatment for asthma, and whilst the long term side effects are bad - you can't keep using that much salbutamol!! Have they checked all your bloods and stuff recently - you should deffo get your potassium checked - and I bet your lactate is through the roof - which will make you feel terrible! Salbutamol is a pretty safe drug - and yes, taking too much salbutamol doesnt have the usual 'overdose' dangers that other drugs have - but it is still a medication and it can be overused!! Plus, if those are all meds started by your GP you should have been reffered toa resp cons AGES ago - that is significantly more than i'd expect a GP to prescribe without getting specialist opinions - lots of conditions present like asthma! And i don't like when GPs use the term brittle - 'brittle' needs to be diagnosed by a specialist - otherwise it may be that your just not yet on the right/sensible treatments or there is something underlying triggering your asthma!

I'm sure that if you are seeing your consultant every fortnight they will be able to bring the lung function tests forwards - in fact i bet they can do the basic ones in clinic!! So i'd deffo talk about that - they cant keep seeing you every two weeks and not doing anything - its a waste of everyones time doing that!

What other treatments do they do in A&E? I assume they give you pred??

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Hi Soph, hope ur in the best of health!

To be honest I moved and got taken to a new hospital with a sudden severe attack?. But for my own good. Got admitted and will not be discharged until I am 100%. And yes regarding the inhalers the GP knows (my third one) and will be changed asap. The sats are o2 at 43%. Thats why I am not going anywhere according to the respiratory docs till I am 100% and no nebs for home either due to the severity of my attacks?. But will get somewhere eventually?.

In the meanwhile is there anyone else in hospital wishing to just get home by all means? Need some coping strategies as all I want is to go home and feeling really depressed for first time???. So anyone who has been throhgh these plz let me know how u coped.

And do u mind me asking what meds u got?

Thanks, have a lovely night

???

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I suspect it isn't your oxygen levels that are at 43%......I'm not even sure you can survive with oxygen that low....and certainly wouldnt expect it to be 'just' asthma causing that. If they are SURE that the 43% is a true reading (finger probes aren't brilliantly accurate) then they need to be looking at what else is going on! What was your spo2 reading from the ABG??

I'm not in at the moment, but I completely know that feeling. I also do 'avoid admission by all means' as well. I think the best thing to do it try to keep yourself busy. If there are TVs then treat yourself for a few days. Make sure they are on top of your pain/nausea/breathlessness as much as possible - what oxygen are you on? If you are really badly struggling then you can ask to speak to the mental health team. I have done this once during an admission where things were very complicated at home, and they were great, gave me a lot of time to talk, and came to see me for a few days,due to the reasonably extreme circumstances they even worked with my resp cons to prescribe some lorazepam (i think thats what they went with - it was the least resp surpressing one) as they decided the risk of the stress triggering problems was as high as the meds causing problems - so they can do a lot if needs be. TBH though i suspect you just need someone to talk to!

Most cons dont like home nebs - not many people do actually have them! I'm told that unless nebs COMPLETELY fix me I have to go to A&E anyway, and if im needing a few then I need to speak to my GP asap! Its pretty standard in the uk :-(

Maybe look on groupon for things you can do when you get out? Arrange for people to visit? Try writing things or planning things to do. These are all the kinds of things that keep me almost sane during nasty admissions! What ward are you on??

Im on LOADS of meds, its getting kinda silly. I nebulise Sabutamol, Budesonide, and Terbutaline. Then I have Ipatropium, salbutamol, terbutalin and Oxis inhalers. My tablets (just for asthma) are uniphyllin MR, Montelukast, Cetirizine, and prednisilone. Then I also take omperazole, domperidone, ivabridine, flecanide, sertraline, hydrocortisone, and nefopam.......I think thats everything, I have a load of 'as needed' meds, but I try not to take them as frankly I thinkon a medication level, i must be near the maximum my body is ok with!!

If you have decent internet access you might enjoy websites like Tickld, Notalwaysright, Damnyouautocorrect, Textsfromlastnight, Textastrophe and similar - I can scroll through these for hours and they keep my brain going. If you have an ipod or similar then you could see if you can download an audiobook - dont know about everyone else but i CANNOT read properly in hospital, my brain feels too fuzzy, but I can lie for hours and listen to a good book! Even helps me sleep like when I was a kid sometimes!! If you have access to an app store then see if things like Haydays, 2048, 4 pics 1 word, Temple Run, Geodefence swarm, tetrix, mushroom wars, plants vs zombies are on there. Again if you have an apple device have a look to see if there are any good podcasts, they're free so you could download a few and see if there are any you like. Those are some of the things I enjoy doing during an admission - hope some of them are helpful - even if you can't do them exactly - might give you an idea!! :-)

Hope you're feeling better soon! I'm getting more and more exhausted, and my BP is dropping. Am messing with my steroids to see if I can prevent issues - been so tough with my adrenal insufficiency of late and I really dont fancy another admission!!

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Thanks for ur reply! ?????

U seems to be on lots of meds ? they want to add some of them but allergic to some of them so they cannot. Regarding nebs for home i have seen the entire team of respiratory docs and they said no? all of them . When i usually go i am generally too bad already as i hate hospital and needles especially abgs. And the probes on me if u stick 2 on different fingers shows 2 entirely different numbers so they just stick an arterial line in me and keep doing abgs and thats what gets the 43%. Thats why usually get put on the o2 with the nose thingy i think its called nasal cannula but not sure and another mask on top of it. I know it sounds rather weird but thats what they do. Thats one reason why no nebs. The other is that my heart gets absolutely crazy and have to stay on cardic monitoring too.

Hospital for me is terribly boring as i am tangled in stuff. 2 for the oxygen the heart monitoring stuff the million drips and the arterial line makes me almost impossible to just even move ? so (as i am a muslim) i just get my earphones and listen to some Quran other than that got lots of games books everything on my iphone but its difficult to use due to pain and getting tangled ?.

And hey ho the good news is that i m back home??? but the bad is that the docs gave up? cant get things any better than this. So discharged me home. They also think i have something like copd but its highly unlikely as i m only 19 non smoking. Also they want to investigate for allergies as they found i m allergic to cetrizine ?.

At the end of the day the cons agreed to go with just my symptoms and try to correct those but they dont really want to give me anything that i have asked for so far. That includes painkillers for terrific chest pains! But in the walk in centre they usually give it to me?.

Also theres no point in the ooh appointment as my gp has no nebs nor spirometry so the only thing they can do is send me to hospital?.

But will get somewhere eventually. The cons wants to try the new medicines on me when they come out but will see

Again thanks for ur last post? its good to hear others experiences ?

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