Change the pressure

[lemsip100]

Hi All - my first post

Bit of history first, I have been suffering with SA for a while now and after repeated unsuccessful visits to my GP who said sleep clinics are impossible to get into and worried about losing my driving licence for a period, I decided to purchase a CPAP machine myself. Luckily one came up for sale on gumtree for £100 so I purchased it and then purchased myself a Resmed Quattro FX mask. I have been using it for 1 week and the difference is amazing

3 slight issues I need help with please:

1. The pressure is set to 10 and I don't think this is high enough; I can still wake up and hear my throat vibrating with light snoring. I have a Fisher & Paykel SleepStyle 600, I am aware this should be set by a health care professional but I am unable to do this and need to know how to change myself please.

2. Every night so far I have woken up with the mask off - I have obviously done this myself but have no memory of doing so - I think this is related to point 1 and I am still suffocating so ripping the mask off for air - any thoughts appreciated.

3. The machine needs Pure water, and this costs £6 per litre. I have a fridge that delivers cold filtered water - would it be ok to use this? Otherwise where can I buy in bulk cheap please?

Many thanks to all in advance, I really look forward to your replies so I can finally put this one to bed (no pun intended lol)

Lemsip100

[Tigers Fan]

Nice going!

Hi lemsip100

Another DIYer in at the deep end! Welcome aboard! You bought the best mask on the market for mouth breathers.

Your three slight issues include two of the biggest for Hoseheads!

1. I don't know you machine and even if I did, I wouldn't tell you how to change pressures - it's something you've to discover for yourself then no-one else gets involved in litigation. If you Google "SleepStyle 600 clinicians' menu" and look at American sites, I think it won't take you long to learn what you want. I advise you to increase only 0.5 cm at a time and no more frequently than four nights - that way you'll be able to judge the effectiveness rather than your body protesting.

2. A very common problem! Get it sorted and you move on to leakage. Masks are the trouble area for us - till you find the right one for you. After a while - a week or three - you'll stop taking the mask off. It's a matter of getting used to it clamped to your face. One way of adjusting is to wear the mask before going to bed - watching TV, reading, doing chores, etc - let your conscious mind accept the mask, hoping your unconscious will follow suit. Don't adjust the straps too tight - just enough not to leak and then an extra 2mm per strap end.

3. I asssume you mean water for a humidifier. There are long debates about water on the forum - some go for distilled, some for tap, some for filtered tap, some for bottled. As long as it is bacteria free (all of the above) it doesn't matter except for scale build-up. If you live in a soft water area, use tap water. If hard, filter it with a Brita filter to soften it. Look at supermarket bottled water a find a cheap, soft water (tend to be Scottish and Welsh but there are some English - Tesco's is English). You can buy a water distiller. Some even get distilled water via their GP.

Hope that's enough to keep you going! Don't hesitate to come back to ask questions. There is nothing you will experience that someone hasn't before you - and there is a thread about it on the forum, somewhere. But ask as well as read.

TF

[symmit]

Hi and welcome, and congratulations for giving CPAP a go despite the GP.

There is another forum which has clinicians manuals for most machines, I'm not sure if I'm allowed to link it here.

If your machine doesn't display AHI then you'll have little chance of seeing the effect of changing pressure, maybe buying an oximeter will help?

I just use cooled, boiled water in mine (or if the kettles empty or too hot then tapwater) - give it a good wipe every morning and it shouldn't scale up, certainly mine hasn't but our water isn't hard.

Good luck!

[Fredxx]

With the Fisher & Paykel SleepStyle 600, just giving the humidifier a wipe isn't an option (I have an NHS supplied one)... frustrating having a sealed, uncleanable water tank!

When I first started 9 years ago, I looked for distilled water too...then drifted to filtered, and now just use water straight from the tap. Just give it a good flush out every day and a tank lasts about 9 - 12 months. Having good tap water in the Welsh valleys does help!

[dravidio]

You can find the information to adjust the pressure on the web. The water is not so important - but I bought a water distiller for about £150 (Yes I know that is a lot) but it should last for years, and I use it for my steam generator iron and steam cleaner as well as my humidifier...

[dravidio]

@Tigers

Tescos is English?

Why are they in Hong Kong, Thailand and China then?

They are about to take over the world.

[Barely Awake]

@Tigers

Tescos is English?

Why are they in Hong Kong, Thailand and China then?

They are about to take over the world.

From memory they were born in a former Co-op furniture store in Edgware Middlesex, which qualifies them to play for England at football rugby and cricket!

[Tigers Fan]

The company is Tesco.

An appostrophe makes it belonging to Tesco - Tesco's.

Pickiness needs to be accurate. Inaccurate pickiness is not amusing and is easily mistaken for ignorance.

[lemsip100]

Thanks for all the replies, all is moving on well.

The pressure was actually 9.0 and I tried 10 Thursday night but still way too weak, went to 14 last night and a lot better, a few more tweaks and I'm geting there.

Fredxx not sure if yours is the same but you can push the base off the chamber and then clean. Mine had loads of limescale especially on the base so I soaked in vinegar for 30 mins and then gently scrapped off with the back of a teaspoon - worked a treat and all nice and shiny like new .

More reading to do on AHI but looking positive. I am using the filtered water out of the fridge from now on and a little typo in my OP, £6 for 5 litres not 1 lol

lemsip100

[James @ Intus]

Glad to hear you sussed it out.

The way you went about it is rather unconventional and certainly not recommended. To balance this thread, in case others read this and think it's wise to go and buy any machine off any random person, consider the following:

- You don't know the previous user, who has been indirectly breathing in the machine for a number of hours. Sterilise it if you can (ozone for example).
- CPAP is only effective at the right therapeutic pressure. Someone else can weigh the same as you, have apnoea as bad as you, same neck size as you, same age, but totally different pressure needs. If you don't knwo the pressure, get an Auto machine instead. At least you won't be at the wrong pressure.
- It's rare, but CPAP can be harmful. If you don't "just have OSA", then even more so. Also, if your BMI is very high, say above 40, you have a high risk of obesity hypoventilation which could give you extra trouble on CPAP. Look out for morning headaches, this is a sign CPAP is no good for you. Of course, a sleep study would have found this out before your investment in CPAP + Mask.
- CPAP isn't easy to stick with. Motivation is key. A prime motivator for people is baseline data. How bad is this suspected OSA exactly? Only a sleep study can tell you this. Do a sleep study and know that your ODI is 50 or your AHI 60. Now start CPAP and check the stats, see that AHI has dropped to 5 so you can be sure things are under control. Without a sleep study and then just guessing your therapy, you know nothing about how OSA was, or is currently for you. You're guessing, going blind just by how you feel when how you feel can be influenced by many factors.
- OSAHS has implications on your driving. Be aware of this and don't take CPAP lightly. It's not a DIY experiment, it affects others.
- Unsuitably treated OSA has effects on your body and mind. Again, it's not a fun experiment, it's your health way beyond sleep alone.

So know what you are getting in for. If the NHS can't help you, you can get a reputable sleep study done privately, in the comfort of your home for as little as £100-£250. (Intus plug). That tells you whether CPAP is safe for you and gives you a base line to work from and a "partner" ready to assist you along the way.

So be mindful of what you're getting yourself in to.

[shuckie]

Hi All - my first post

Bit of history first, I have been suffering with SA for a while now and after repeated unsuccessful visits to my GP who said sleep clinics are impossible to get into and worried about losing my driving licence for a period, I decided to purchase a CPAP machine myself. Luckily one came up for sale on gumtree for £100 so I purchased it and then purchased myself a Resmed Quattro FX mask. I have been using it for 1 week and the difference is amazing

3 slight issues I need help with please:

1. The pressure is set to 10 and I don't think this is high enough; I can still wake up and hear my throat vibrating with light snoring. I have a Fisher & Paykel SleepStyle 600, I am aware this should be set by a health care professional but I am unable to do this and need to know how to change myself please.

2. Every night so far I have woken up with the mask off - I have obviously done this myself but have no memory of doing so - I think this is related to point 1 and I am still suffocating so ripping the mask off for air - any thoughts appreciated.

3. The machine needs Pure water, and this costs £6 per litre. I have a fridge that delivers cold filtered water - would it be ok to use this? Otherwise where can I buy in bulk cheap please?

Many thanks to all in advance, I really look forward to your replies so I can finally put this one to bed (no pun intended lol)

Lemsip100

With regards to your driving licence, please be aware that you are legally obligated to inform the DVLA about any change with regards to your medical condition. You would be risking a fine and possibly losing your licence if you didn't do so. On the one hand you could argue that, because you haven't been "officially" diagnosed then you aren't "technically" aware that you may have OSA. That said, if you were to have an accident and somehow your medical history were to be taken into account, the police and/or DVLA might want to know why you didn't tell the DVLA that you thought that you might have OSA (as I'm assuming the consultation you had with your GP is now on your medical notes). This is all hypothetical of course, and given that I don't work for the DVLA, police or as a GP I don't know what would happen if you were to have an accident, but it's worth bearing in mind.

Another point worth thinking about is that you should also inform your insurers about any change in your medical condition, as otherwise your policy may be invalidated.

You could either insist that your GP refers you for a sleep study or pay for a private one. Either way you'd know for certain whether or not you do have sleep apnoea, and if so the best way to treat it. If the sleep study reveals that you do have OSA and that you need a pressure of 14 to treat it, and you can confidently say that you feel better with your CPAP therapy at that pressure, it should be easier for you to convince that DVLA that your condition is being treated and is now under control. That said, the DVLA may be more convinced if this assertion was backed up by a sleep consultant and a properly prescribed CPAP machine as opposed to the "self-medicated" route that you are taking at present.

Putting all the DVLA issues aside for a moment, I would say that the insufficient pressure and mask-removal situation you described were probably related. My earlier posts describe how I kept removing my mask in the early days, and that when I discussed this at my sleep clinic I was told that my pressure needed to be increased as I was not getting to the deep, restorative stage of sleep, hence I was half-waking and removing the mask. The pressure was initially increased to too high a level and I experienced significant bloating, but once it was reduced a little I slept better without removing my mask as often.

With regards to water for the humidifier, this is something that I have also posted about. Suffice to say I found it very difficult to obtain distilled water at a reasonable price. Deionised water is usually available from petrol stations and the like, however it's a bad idea to use this stuff as I understand it is chemically treated and generally not suitable for use/consumption by humans. In the end I decided to buy a filter jug which I keep in the fridge and use this to fill the humidifier chamber (along with the kettle and iron). It may not be as hygienic as distilled water - and therefore probably not suitable for people with weakened immune systems, susceptibility to lung infections etc - however I don't get any mineral deposits in the humidifier chamber and I find the humidified air much easier to cope with.

Overall I definitely recommend that you go through the official channels to be diagnosed and supplied with a CPAP machine if necessary. At least that way you can be sure that the machine has been properly calibrated for you personally and that your sleep clinic can back you up if the DVLA or your insurers have any questions.

Best of luck and please keep us updated.


Cheers

shuckie

[Tigers Fan]

Do keep up!

A psychologists's dream, that post, Shuckie! Says a whole lot about you!

If you have not been diagnosed with OSA, then you can't report yourself to the DVLA. If you haven't committd a crime, you can't report yourself to the police. I mean, with this ******!!!!! royal wedding, they'd have to lock so many of us up!

TF

[Richard]

CPAP the DIY way

Hi Lemsip,

Taking responsibility for your own health is highly commendable, and I can understand the frustration when the medics do not, or cannot, comply with your needs.

However, sleep apnoea is often only the symptom of something more serious. Only treating that may lead to the root cause of the problem being over-looked, with consequences further down the line that defy treatment.

Your GP is speaking with forked tongue if he is telling you it is not possible to get treatment: the NHS maintains that a referred appointment should be no longer than 18 weeks from request by your GP. Call the GP's bluff and insist on a referral, and if you have to wait longer than 18 weeks raise hell with your local Primary Care Trust.

Best of luck

Richard

[dravidio]

The company is Tesco.

An appostrophe makes it belonging to Tesco - Tesco's.

Pickiness needs to be accurate. Inaccurate pickiness is not amusing and is easily mistaken for ignorance.

I don't think I used an apostrophe. I added an s. Indeed pickiness does need to be accurate. Having a first degree in English; a Master's degree in TESOL (note the correct use of the apostrophe) and having been Head of a large English Department in an International School I think I know whereof I speak.

[Tigers Fan]

Indeed you added an 's' - making a plural Tesco - instead of an apostrophe 's'. Seems you may be part of the reason English is ever more poorly spoken by school leavers.

TF