Help sought from a long way away...................

Pete · Post by **Pete** » Fri Nov 03, 2006 11:17 am

Hi

I've been diagnosed with OSD and got lent a machine by our local National Health Service Hospital here in the UK, it records lots of info so they can set up a CPAP machine, there is a waiting list here of over a year for a machine, it has taken me over a year to get to this stage from my wife noticing that I stopped breathing at night and me telling myself to get a grip and stop falling asleep all the time....... So I will have to buy one if I want the treatment.... and I can't find anyone who will lend machines to try out so once bought I will have to stick with it.....

I used the ‘trial’ machine for the first time last night...... I managed about an hour and a half and then the pain forced me to give up..... My mouth (I am using a full mask as I have restricted nasal passages), throat and sinuses were totally dried out and like sandpaper, My sinuses were very painful and even my teeth were aching from being blown.... all in all pretty terrible and I was so looking forward to a good nights sleep..... Oh well ever the optimist.....

This "trial" machine does not have a humidifier facility, has anyone any suggestions for keeping my mouth and throat moist....

I thought I would have trouble with the mask but it fits well and I don't mind it, it was just the pain that made me stop.... I took some painkillers and took another two hours to get off to sleep without the machine, my voice is still croaky and my nose aches (its gone 5pm here) so I wasn't just 'wimping out' I so want this to work and get some quality of life back...

So anyone any thoughts please, you all seem such a nice friendly helpful lot

Thanks

Pete

Offerocker · Post by **Offerocker** » Fri Nov 03, 2006 11:49 am

PETE: WELCOME TO THIS OUTSTANDING FORUM!

Please fill out your "PROFILE" - that way, everyone will know what equipment you're using, and be better able to assist you. Each machine and mask pose different circumstances.

In my opinion, you MUST have a humidifier, else the tender membranes of your nasal passages will certainly dry, and become leather-like and painful, as you've already discovered.
Even though I have a heated humidifier (NOW a separate one from my xpap machine), "in the beginning" I had soreness and drynes as you. I used a SALINE SPRAY and AYR GELL that I applied to the inside of my nares. that certainly helped a lot, and I probably kept that up for at least a month. I don't need the Ayr gell anymore, but keep it handy.

I too have one restristed nasal passage, due to scar tissue. Maybe a "Breathe Right" strip could help you with that - worth a try.

It sounds like you are mouth-breathing, as your mouth is dry in the morning; Of course you are, because of your restricted nasal pasages. I'd try to clear up the nasal problems first, then try taping your mouth (do a search on this subject here). Then maybe that problem will also be solved.

There are MANY more people here who will give you excellent advice re your problems. I just happened to be among the first to respond.

Good luck, Pete, and welcome to cpaptalk!

ozij · Post by **ozij** » Fri Nov 03, 2006 12:17 pm

Pete,
You absolutely need a humidifier - and being a person who uses a full face mask, you need it even more, since mouth breathing dries your mouth.

Many (all? most?) machines have integrated humidifiers, but you can get a separate humidifier that will work with all machines. I have no personal experience with a separate humidifier, but Rested Gal - a wise experienced user - uses one and is very happy with it. here's a link to the HC150 Heated Humidifier that you can connect to any machine, and that many users are satisfied with.

https://www.cpap.com/productpage/fisher ... ifier.html

If you haven't done so yet, click on the yellow lightbulb containing our collective wisdom - you'll learn a lot.

"puffing billy" and "littlebaddow" are both users from the UK, they've been posting recently, but you might want to contact them by PM (Private Message) to make sure they know there's a countryman around.

Welcome, and good luck!
O.

kteague · Post by **kteague** » Fri Nov 03, 2006 12:24 pm

Welcome, Pete. Since you don't mind the mask, you've already taken a giant leap forward. If a heated humidifier helps your dryness and mouth issues, you'll be way ahead of the usual curve based on what we read on here. Of course, often the people who come here are not having satisfactory success with their treatment and are looking for ideas, so don't let the seemingly disproportionate "problem" posts bother you. Surely the world is full of patients who "took off" successfully from week one, and gave no thought to visiting a web site like this one. Since that hasn't happened yet for you, you are in the right place. In addition to your equipment info, any test results as well as your pressure might shed more light for those who may have solutions to offer. My only suggestion is to carefully consider your medical system when deciding on a machine. One that can meet potential changing needs and allow you to monitor your treatment will be important if access to professional help is not readily available. Best wishes as you gather info for your decision.
Kathy

Offerocker · Post by **Offerocker** » Fri Nov 03, 2006 1:53 pm

ozij said: I have no personal experience with a separate humidifier

I have the HC150, and made that decision as a result of research and advice from this forum. One of the best decisions I made!
You'll need to decide for yourself, based on the features it has to offer vs your needs.

Kathleen

littlebaddow · Post by **littlebaddow** » Fri Nov 03, 2006 1:54 pm

Hello Pete (from not quite so far away in Essex!) and welcome.

I can understand where you are as your experiences are similar to mine.
I was diagnosed nearly 2 years ago, having visited my GP feeling very unwell and complaining particularly of a permanantly sore throat. To cut a long story short, after various tests for all sorts of things, I was referred to an ENT specialist, who on-referred me to a sleep specialist and 6 months after the initial visit to the GP, I was lent a machine by the local hospital for one night so that they could confirm the diagnosis of OSA. I was then told I needed to wait a further 2 or 3 months for the appointment to see the sleep specialist for the results, following which there would probably be a 6 months wait to get the equipment

Inevitably, I could see the same sleep specialist within a week if I paid to go privately, so, despite having no medical insurance, I decided to pay up to get the confirmation of the diagnosis and (most importantly) the prescription that allowed me to buy my own equipment.

Research in this forum (and discussion with the sleep specialist) led me to the conclusion that an auto machine with software to allow me to monitor my own treatment was the best course of action, allowing me to become reasonably self-sufficient in managing the condition without the need to either wait (NHS) or pay (private) to see the sleep doctor again.

I must emphasise this course of action is a personal choice and may not be appropriate for people with other medical conditions, but if it is your choice to go this way then many people here will be willing to share their experience with and offer encouragement to you.

If you do decide to buy, consider buying online from the US as it's significantly cheaper and there are ways around import duty/shipping costs (which I'll happily share with you via private messages!).

As to your experience with the trial machine, please don't be concerned, it is quite normal to have difficulties at first and like many people I struggled at first. It's good to hear that you are getting on well with your first mask. In my view, this is the most diffuicult thing to get used to and there are so many options it can take time to find the one that suits you best.

Like others, I think a humidifier is essential and a heated humidifier (which warms the water) is best.

Personally, I selected a respironics machine (the Remstar Auto with integrated heated humidifier) together with the software (encore) and I'm very happy with it. Look at the cpap.com website, it has a lot of information (and prices) for the various machines. In comparison, if you contact the companies in the UK I think you'll find the prices to be at least double.

Stay optimistic, keep asking questions and persevere and things will get better. I'd be happy to answer any questions privately using the messaging facility if you prefer, though please remember there are many other people who read this forum (including no doubt some fellow Brits) who may also benefit from reading the questions and answers too.

Good luck

dllfo · Post by **dllfo** » Fri Nov 03, 2006 4:14 pm

Welcome aboard Pete and hang in there. Once we have your info on what type of machine, etc. you will get more help than you can imagine.

I wish you the best and please keep us informed....Dave

IBTeri · Post by **IBTeri** » Fri Nov 03, 2006 4:44 pm

thats what happen to me when they gave me the trail one. no humidifier. So I understand where your coming from. and to be honest don't know what you can do until you get your own with humidifier? vaseoline on or in nose? Not sure about throat maybe someone else can help you on that. I keep something to drink nexted to me at all times maybe that will help you too? what about your bedroom can you humidify that? maybe that will help?

SelfSeeker · Post by **SelfSeeker** » Fri Nov 03, 2006 5:00 pm

Hello Pete,

Sorry to hear about your problems. I agree with problems when not using a humidifier, I did not have the use of one when I was doing the titration for 6 days.

From what I have read: Even with a humidifier and a full face mask, your mouth may be dry.

For now I want to suggest something but have no idea what it is called.

I know people with problems with saliva use this mouth lubricant, to keep the mouth moist. Sometimes it came on little sticks. I do not know if the pharmacy would have this product or if you need a Rx.

If anybody knows what I am talking about please help my memory here.

Guest · Post by **Guest** » Sat Nov 04, 2006 5:07 pm

Thank you all very much for the replies.... I have managed to get an appointment for Monday to hopefully get a different machine with a humidifier so I'm banking on this to work......

The machine they have lent me at the moment has no makers name or anything else to say what/who made it, it is about four times the size of the latest ones and has a serial port plug at the back..... so I can't answer yet what machine it is....

Thanks again, hopefully all will be sorted on Monday

Pete

RachelM · Post by **RachelM** » Sat Nov 04, 2006 5:50 pm

My sleep clinic said they will not let a CPAP go out without humidifier. They know the effects of not having it on compliance.

rested gal · Post by **rested gal** » Sat Nov 04, 2006 8:05 pm

My suggestion would be to try to get the most "recent model" machine they'll let you try. If it has an integrated heated humidifier with it, great. I'd steer clear of the integrated h2i or h3i humidifiers. Two h2i's I used did not put out as much heated humidification as other brands' humidifiers did. If a machine doesn't have an integrated heated humidifier then you might want to think about buying yourself a separate Fisher and Paykel HC 150 humidifier...comes with a short hose that lets you connect the F&P humidifier to any brand of cpap machine. You then run the usual main air hose from the F&P humidifier to your mask.

Or ask the DME if they have a used F&P heated humidifier sitting around that you could buy outright. Again, check the cost of buying a new one (plus shipping) online compared to what the DME might have.

https://www.cpap.com/productpage/fisher ... ifier.html

billbolton · Post by **billbolton** » Sat Nov 04, 2006 8:55 pm

rested gal wrote:My suggestion would be to try to get the most "recent model" machine they'll let you try.

The OP is in the UK and in the hands of the UK National Health Service (NHS). Its a very different system of medical service delivery to that in the USA!

Cheers,

Bill

puffing billy · Post by **puffing billy** » Sun Nov 05, 2006 3:35 am

Pete
I am also a UK based hosehead so if you have any questions please pm me.
I also have experience of importing CPAP equipment from the US.

Billy

divinfool · Post by **divinfool** » Sun Nov 05, 2006 7:52 am

Hi Pete
Welcome to the forum!! A heated humidifier of some sort is necessary for comfort as everyone who has replied to this post have already said.
I have a suggestion that may help with your dry mouth. This will sound strange but I've seen other people doing this and I have done this as well while scuba diving and that is chewing on lip balm before going to bed. The particular brand that I have used is Chapstick. Just choose a flavor you like as long as it is sugar free (Don't want a trip to the dentist from eating sweets before bed). Good Luck

Machine	Mask

Additional Comments: Airmini, Medistrom Pilot 24, CMS 60C Pulse Oximeter, ResScan 6