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Kath Hope
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Kath Hope's Groups

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

Kath Hope replied to Haneen Ghabra's discussion helpUARS
"Hi Haneen It's very difficult to pinpoint what happens when symptoms return.  If you can post a daily screenshot from an average night we could take a look for you.  Without seeing that, a few other things to consider is that the…"
Mar 22
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Sorry for the delayed welcome Sophie.  Great to hear things are going well with CPAP and some people do feel a little down at first.  If you use Facebook I'd highly recommend joining our Private Support Group which is far more active…"
Mar 14
Kath Hope replied to Richard Smith's discussion Philips Trueblue
"Ah yes I clicked on your link Richard and seems that's an old link you found.  This is the latest link to their current sleep apnoea products https://www.philips.co.uk/healthcare/solutions/sleep-and-respiratory-care/dream-family …"
Mar 6
Kath Hope replied to Edam's discussion Flexifit 432
"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."
Feb 25
Kath Hope replied to Edam's discussion Flexifit 432
"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."
Feb 23
Kath Hope replied to Edam's discussion Flexifit 432
"Ah right.  We only got the Forma yesterday.  I must say I prefer the 431 and 432 but of course we're all different."
Feb 22
Kath Hope replied to John Garbutt's discussion How long to get machine
"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…"
Feb 22
Kath Hope replied to John Garbutt's discussion How long to get machine
"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,…"
Feb 22
Kath Hope replied to Edam's discussion Flexifit 432
"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…"
Feb 22
Kath Hope replied to Richard Smith's discussion Philips Trueblue
"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…"
Feb 20
Kath Hope replied to Richard Smith's discussion Philips Trueblue
"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?"
Feb 18
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"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…"
Feb 17
Kath Hope replied to Mags's discussion Daytime Tiredness on CPAP
"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…"
Feb 17
Kath Hope replied to Richard Smith's discussion Philips Trueblue
"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…"
Feb 17
Kath Hope replied to Mags's discussion Daytime Tiredness on CPAP
"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…"
Feb 9
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"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."
Feb 9

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)

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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.

Medication

Used to treat

Examples

Possible effects on sleep/daytime…

Continue

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,…

Continue

Posted on October 25, 2011 at 20:00

Comment Wall (95 comments)

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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, Bernadette Plunkett said…

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, Amelia Kennedy said…

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, Amelia Kennedy said…

Thanks Kath!

At 15:12 on March 6, 2014, Amelia Kennedy said…

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, June Ostiadel said…

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, June Ostiadel said…

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

Maureen Carlisle replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"  Morning everyone, just a bit about my condition, my Daughter recognised that I stopped breathing when asleep over a year ago and I reported it to the Dr and after having what seems like every test a body can have, I finally got a machine over…"
Sunday
Maureen Carlisle replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
Sunday
Maureen Carlisle is now a member of Hope2SleepGuide
Apr 1
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi I live in London, so we have lots of limescale in the tap water.  Originally I used Purified Water BP from the pharmacy.  Then I switched to using supermarket bottled water - it's food-grade after all.  I got a bit of scale in…"
Mar 30
Jml replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi there - just saying hello - I’ve been using a cpap machine for about 4 years now after so many years of trying to convince an old GP something was wrong. Moved and new GP said - let’s test you for sleep apnoea! Have moved again so…"
Mar 30
Steve K-E is now a member of Hope2SleepGuide
Mar 26
Lynn Mattimoe posted a discussion

Cancelled out patient appointment.

HiI had an appnt due 5th May for results of NHS sleep study and to get the machine and mask. Since most appointments are being cancelled I've paid for a private sleep study despite having an NHS one several weeks ago.I'll get the results within 7 to…See More
Mar 24
Haneen Ghabra replied to Haneen Ghabra's discussion helpUARS
"Hi Kath Thanks so much for your reply - I attached some screen shots... Thanks so much !  wow I wonder how the laser surgery could have made things worse! "
Mar 22
Lynn Mattimoe replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Sophie I'm new to OSA and haven't been supplied with a machine or mask yet but due to the virus my local hospital are canceling all appointments. I hope to experience the machine and mask and I've asked for a copy of my sleep…"
Mar 22
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Lynn I bought my machine many (many!) years ago.  It's a DeVilbiss Intellipap (also sold as a SleepCube) APAP machine and I am very happy with it although no doubt the technology has moved on.  I am replying to mention that I…"
Mar 22
Lynn Mattimoe replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hello everyone,I've recently  been diagnosed with OSA but not yet prided with the mask or machine. I have found several out patient appnts have been cancelled and hope that mine on the 5th May isn't but won't be surprised if it…"
Mar 22
Kath Hope replied to Haneen Ghabra's discussion helpUARS
"Hi Haneen It's very difficult to pinpoint what happens when symptoms return.  If you can post a daily screenshot from an average night we could take a look for you.  Without seeing that, a few other things to consider is that the…"
Mar 22
Profile IconLynn Mattimoe and Pauline Darcy joined Hope2SleepGuide
Mar 22
Haneen Ghabra posted a discussion

helpUARS

Hello All After years of TMJ and morning migraines (sine 2008) I was finally diagnosed with UARS in 2018. I did a few soft palate and easy procedures with radiotherapy and laser (first was using nasal dilator and a MAD device. Anyways in 2019…See More
Mar 21
Profile IconHaneen Ghabra and Adrian Dunn joined Hope2SleepGuide
Mar 15
John Garbutt posted a status
"I got my machine two days ago have now slept for two twelve hour times. Starting to feel human"
Mar 15
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Sorry for the delayed welcome Sophie.  Great to hear things are going well with CPAP and some people do feel a little down at first.  If you use Facebook I'd highly recommend joining our Private Support Group which is far more active…"
Mar 14
Sophie replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi everyone,  I thought I'd introduce myself. I am Sophie and I was diagnosed with OSA a year ago. I am managing okay with the mask and think it is helping my health overall. I am, however, struggling more with feeling down in the past few…"
Mar 7
Kath Hope replied to Richard Smith's discussion Philips Trueblue
"Ah yes I clicked on your link Richard and seems that's an old link you found.  This is the latest link to their current sleep apnoea products https://www.philips.co.uk/healthcare/solutions/sleep-and-respiratory-care/dream-family …"
Mar 6
Richard Smith replied to Richard Smith's discussion Philips Trueblue
"Hi Kath, The Trueblue is still on the Philips website here https://www.philips.co.uk/healthcare/solutions/sleep-and-respiratory-care/masks which is why I thought it was still available.  Anyway, I’ve gone ahead and ordered the…"
Mar 5

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