"It's a shame nothing can be done about your polyps and septum, which is no doubt the cause of your issues. It too hate the Oracle, but there are a lot of people who use it very successfully - just not you or I lol."
Sleep Apnoea Forum Bringing Help + Support to the Patient
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Kath Hope
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- United Kingdom
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Kath Hope's Discussions
Philips Respironics New Sleep Apnoea Diagnostic Service
If you snore and are tired, you could be suffering from sleep apnoea (see signs + symptoms on our website)…Continue
Started Apr 8, 2018
RAFFLE for out UK Supporters - ends Saturday 21st October 2017
We're extending our raffle to our United Kingdom Supporters *(sorry rules mean we can't share this out of…Continue
Started Oct 19, 2017
Driving with Sleep Apnoea costs unnecessary lives. Please share to raise awareness.
1 Reply
The father of Toby (the young man killed in a traffic accident) meets up with the driver responsible for his death, due to undiagnosed sleep apnoea. Both these men live with their own horrific scars…Continue
Tags: tired, sleep-apnoea, DVLA, driving
Started this discussion. Last reply by Sleep2snore Feb 24, 2017.
Research into Snoring Children and those with Down's Syndrome
This is a fantastic opportunity for parents and carers of Children ages 3 to 4 years old (they have enough 2 year olds now) who Snore and those beautiful children with Down's Syndrome to take part in…Continue
Started Apr 1, 2016
Kath Hope's Page
Latest Activity
"I honestly don't know Edam, as people usually ask us how to keep their mouths closed rather than open. It sounds like you need an ENT referral due to severe nasal issues. I had to have some surgery to breathe better in the masks."
"Ah right. We only got the Forma yesterday. I must say I prefer the 431 and 432 but of course we're all different."
"Yes I know John, and so often the missing jigsaw puzzle as to how we're feeling. I was shocked when I got my own severe sleep apnoea diagnosis and CPAP really is a life saver. Hope you don't have long to wait, and worth saying…"
"Welcome John and good to hear you've been diagnosed now and especially with your sleep apnoea being severe.
It really depends on each sleep clinic as to how long you'll have to wait for your CPAP - some give them out immediately,…"
"Hi Edam. Good to hear the new mask is helping, and those F & P FlexiFit 431, 432 and Forma's are still a favourite for a lot of people due to the chin support. (In fact we added the Forma to the charity's website yesterday…"
"You're not on your own there Richard - lots of people are upset the Liquicell has lost it's CE mark and can no longer be sold in the UK. I am still in touch with the manufacturer, begging for them to resolve it, and am waiting for…"
"Hi Richard. You may have seen it on their main website but they discontinued it a year or more ago, along with a few others. Are you struggling with your existing mask?"
"Hi Bob
I just replied to your other post and have the answer here (that it's APAP you're on). Nobody will have a go at you on here, about driving, as you've clearly said that you don't drive when tired which is…"
"Hi Bob (delayed reply as the forum wouldn't post last time I tried). Your average pressure is certainly very low. I'm assuming it's auto pressures (APAP)? Your AHI is good too. It would be better to upload a…"
"Sorry Richard, but I clearly remember replying to you a whle ago but my comment's not here. If it's not too late to say, I'd mentioned that it may not be worth trying the Philip's TrueBlue as the mask is now discontinued as…"
"Sorry Bob, but I missed your post. If you're having broken sleep this will cause daytime tiredness. Roughly every 90 mins we go into REM sleep and I'm wondering if you're being woken up by the pressure rising when apnoeas…"
"How did you get on at the GP Royston? Hopefully, you got a sleep clinic referral as you do need a diagnosis for a CPAP machine which is a prescription item."
"Hi Bob
Welcome to our group and glad you found us. An apology is never needed for being a bit down on things, and without good support many people feel like this from time to time. It's great to hear you haven't let your…"
"Whilst some of the masks are suitable for the top shelf of the dishwasher, it's up to people if they really want to risk it. One of the members of our Facebook Group posted about this the other day and he doesn't recommend it. …"
"Hi Holly
It's great that your treatment is proving to be working with such a low AHI from such a high one, and also that you're sleeping long periods with the CPAP, which your body will be thanking you for after years of pressure on your…"
Profile Information
- Treatment Being Used, if any?
- BiPAP
- If Machine Being Used, What Make or Model?
- Respironics PR One APAP
Devilbiss Sleep cube APAP (Known as Intellipap in the USA)
Respironics ASV
Resmed VPAP
- If Mask Being Used, What Type or Name?
- Respironics Fit Life
Respironics Amara View
Sleepnet Hybrid
Amara Gel
Devilbiss D100
Fisher Paykel 432
(just need 2 more, than I'll have one for everyday of the week lol)
Kath Hope's Photos
Kath Hope's Videos
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Children Also Have Sleep Apnoea
Added by Kath Hope
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Kath Hope's Blog
Medications Affecting Sleep
A number of drugs disrupt sleep, while others can cause daytime drowsiness. Your clinician may be able to suggest alternatives. |
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Medication |
Used to treat |
Examples |
Possible effects on sleep/daytime… |
Posted on October 16, 2014 at 22:27
CPAP TIPS
The following are my own tips in helping with my own treatment, and are not meant as a substitute for medical advice. However, I hope they prove useful.
CPAP/APAP/BIPAP TOLERANCE PROBLEMS
A lot of people find it hard to tolerate their equipment at first, so it's a good idea to set it up during the day whilst relaxing, such as watching tv,…
ContinuePosted on October 25, 2011 at 20:00
Comment Wall (95 comments)
- At 15:32 on November 2, 2017,
YasminVaughan said…
- Hi Kath I've being using a cpap machine for over 3 years the res meds one and full mask the last few weeks I have been getting bad headaches and dried sinuses making me feel horrid . I've got pressure on 7 a wooly cover for hose humidifier, I'm running out of ideas I did use a nasal spray at nite but was told to stop this I've joined today many thanks
- At 15:22 on August 23, 2014,
Hi Kath, thanks for the welcome. Having just started therapy after a 2 year struggle to get diagnosed I have a bunch of questions but I'll try to see if they've been asked and answered on the forum first before raining them down on everyone.
- At 10:26 on March 12, 2014,
Amelia Kennedy said…
Thanks Kath, I'll wait until Marion's able to reply. I don't want to disturb while she's poorly - it can wait for now. Thanks once again for your help x
- At 14:01 on March 10, 2014,
Hi Kath, thanks for the comment about Marion and sorry to hear she's not well. I've added her as a friend and am waiting for her to accept. I'm not sure where I should copy/paste my comment to her though as it already appears to be there? I'm not familiar with the forum set-up yet - that's my excuse anyway! x
- At 0:12 on March 8, 2014,
Sandra Gibbens said…
Thank you for adding me, already I've received so much support and information, and it's very much appreciated!
- At 15:51 on March 6, 2014,
Thanks Kath!
- At 15:12 on March 6, 2014,
Interesting ... thanks Kath, I'll take a look. I've also been using mine for years - 15 in fact and get along with it fine now (after a load of teething problems!). What I do hate is the weight and bulk of it. I'm worrying about how me and my husband can get away for a few days in the summer as he's just had his driving licence revoked due to ill-health and I can't drive. I guess I'll be pleading with Papworth again when I go in a couple of months to test me on other (smaller) machines - usually to no avail!
- At 19:57 on February 6, 2014,
June Ostiadel said…
Hi Kath, thanks again for the useful info. Firstly I did wonder if it's some natural oils coming out of my skin; I always wash before bed and use no creams. You mentioned the change in temperature during the night, well, my face often gets hot and I wondered if that could cause the mask to slip as well as a drop in temp.
I clean my mask every day, wiping with a little washing up liquid then wipe/rinse with clean wet cloth.
The hospital tried me on APAP but when the pressure rose it caused leaking so they change it for me.
I have a medium size mask (the hospital fitted it) and although I have a small face I have quite a big nose lol.
I visited the sleep clinic last June/July at St James Hospital in Leeds, when I was given the CPAP machine. I haven't been asked to go back yet; they only gave me one spare filter. How long would you expect a mask to last and how often should I change the filter?
NB I have just order some items from your website which may help me too; the cleansing wipes, the cream to help sore skin etc and the card (in case of emergency).
Thank you so much for your help, glad I found you
- At 6:23 on February 6, 2014,
I almost always get off get off to sleep with no problem at all; my mask appears to fit quite well, however, after maybe two or three hours I wake up; mask leaking usually from around top of nose. Trouble is when I awake I then want the loo, anyway, I have realised that if I wipe my face and mask with a damp cloth (I have this at the side of bed) after I've done faffing, I can sometimes go back to sleep for another hour or so, but, sometimes at this time I just cannot get the mask to fit without it leaking; then I give up.
- At 17:48 on February 5, 2014,
Thank you Kath it's nice to be here. I was diagnosed with Sleep Apnea about 5 months and have just about mastered the equipment, however, on some occasions I struggle and unfortunately ,I have to sleep without using the machine all night. I found this site when someone on Health Unlocked recommended it
June
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Latest Activity
"It's a shame nothing can be done about your polyps and septum, which is no doubt the cause of your issues. It too hate the Oracle, but there are a lot of people who use it very successfully - just not you or I lol."
"I have been seen by ENT consultants who have diagnosed nasal polyps and a deviated septum. They have considered that surgery is too risky and as one of them said I can still breath through my mouth."
"I honestly don't know Edam, as people usually ask us how to keep their mouths closed rather than open. It sounds like you need an ENT referral due to severe nasal issues. I had to have some surgery to breathe better in the masks."
"I tried the Simplus last night but the 95% pressure went up to 19.5 from 14 on previous nights using the 432.
What can I use to keep my mouth open when using a Full Face Mask???"
"Ah right. We only got the Forma yesterday. I must say I prefer the 431 and 432 but of course we're all different."
"Yes I know John, and so often the missing jigsaw puzzle as to how we're feeling. I was shocked when I got my own severe sleep apnoea diagnosis and CPAP really is a life saver. Hope you don't have long to wait, and worth saying…"
"I bought the 432 from you and would have gone to the Forma if you sold it at the time.
The under chin design of the Flexifit/ Forma range of masks allow my mouth to stay open. With nearly every other full face mask my mouth would close during…"
"Many Thanks,will send them a mail om Monday.
Cannot believe how debilitating sleep apnoae can be. "
"Welcome John and good to hear you've been diagnosed now and especially with your sleep apnoea being severe.
It really depends on each sleep clinic as to how long you'll have to wait for your CPAP - some give them out immediately,…"
"Hi Edam. Good to hear the new mask is helping, and those F & P FlexiFit 431, 432 and Forma's are still a favourite for a lot of people due to the chin support. (In fact we added the Forma to the charity's website yesterday…"
How long to get machine
I was diagnosed with severe obstructive sleep apnoea four weeks ago and wondered how long it take to get machineSee More
Flexifit 432
I have gone back to using a F & P Flexitfit 432 which has resolved the double inhaling and high pressure problem I have had with other masks.But after using it for a few days now I have found that the back of the headgear cuts into the crease…See More
"You're not on your own there Richard - lots of people are upset the Liquicell has lost it's CE mark and can no longer be sold in the UK. I am still in touch with the manufacturer, begging for them to resolve it, and am waiting for…"
"Hi Kath,
Yes, I’m looking for a mask that’s more comfortable for the bridge of my nose and doesn’t leak. I miss the liquicell cushions and was looking to try a mask that used gel. i tried nasal pillows but I kept…"
Phillips dreamstation CPAP pro machine with heated humidifier and all accessories for sale
Phillips dreamstation CPAP pro machine with heated humidifier comes with all accessories including tubes face mask all manuals power leads and also carry bag only used a hand full of times like new open to offers many thanks. DanielSee More
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