Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Welcome to our Forum - Feel Free to Introduce Yourself Here.

Welcome to the Hope2SleepGuide Forum, which is a service run by the Hope2Sleep Charity founded by Kath Hope with a marvellous team of trustees and volunteers. 

Kath herself has severe sleep apnoea and hypoventilation/hypercapnia, and has used CPAP for several years and is now on non-invasive ventilation.  Our trustees and volunteers are all either sufferers of sleep disordered breathing or clinicians/medics working in this field, and most importantly, we are all passionate in supporting (with empathy) others and raising awareness to help people live healthier and more energised lives.

 

Whilst we do not give medical advice, more often than not, with support, tips and knowledge, people can overcome any problems experienced with our therapy, and there is a whole page dedicated to this on the website http://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or...

 

Please come and join us, and don’t feel obligated to use your ‘real’ name if you prefer to remain anonymous as this is a public forum.  Don’t be shy in posting and sharing, as we’re all in this together and to help each other.

Best Wishes for good sleep!

Kath

Views: 12534

Reply to This

Replies to This Discussion

Glad to hear you're finding the Wisp good too.  The S/M fits me perfectly, so perhaps I have a bigger nose than you Roz

loll :)

Kath Hope said:

Glad to hear you're finding the Wisp good too.  The S/M fits me perfectly, so perhaps I have a bigger nose than you Roz

This is great to hear Mary, as I know how you struggled in the past with masks.

Mary Zimlich said:

I don't remember if I've already posted about my Wisp, but I think this is the best mask ever.   I  wear a minimal chin strap, just the one piece that supports your chin and goes over the top of the head.  I resisted nasal masks for a long time because of the chin strap, but I find it doesn't bother me.  Because of the small footprint over just the nose there's less  leaking from my Wisp.  I just receiver my replacement Wisp, but I still have a lot of use left in my first.  I think the price is fair and if you catch a sale all the better.

I also discovered I don't need the humidifier!  I have less nasal congestion than with it and my nose does not get dry.

I don't know how but I have sort of trained myself to sleep with my mouth closed. I tried chin straps but couldn't get in with them and even tried one of those velour head bands that you can use when doing makeup or a facial, but upside down, I think that actually helped the most but found I was getting too warm, and once I ventured to the True Blue mask, I must have just cracked and for the first time in my life slept with my mouth closed. I also found I was able to use the humidifier set to 1 or 2 and the same has been for the Wisp, at this low level I dont seem to get any rainout either, but the tube is hanging over the back of my bed, which I think also helps.

The only downside to all of this is since sleeping with my mouth closed, I have no idea if its connected, but I have started losing my sense of smell. I'm finding that very frustrating as t effects yor taste too.

But if yo are able to try using a chin strab I'd certainly recommend the Wisp, it has to be the smallest and most comfortable mask I have tried.

What do people do with their old masks? Is is normal for clinics to take them back as mine doesn't and I wasn't sure what I should do with the previous ones i have.
I will keep the true blue as a spare as that is still, a very comfortable mask and until the wisp, it was my best yet. Now I'd have to say definitely the wisp.

F tose who are using the wisp which type of attachment are you using, fabric, or clear?

Thanks Mary for letting me know what you do with your old masks.

I really wasn't sure that they should be thrown out. i know we can't sanitise them ourselves  but a couple of the masks i have  have had very little use. I was extremely lucky they allowed me to keep trying them.

Maybe Kath would be interested as i know she said at one time she would loan out for people to try. Because i have had them boxed up in the wardrobe i think gel part of the masks wouldn't be worth keeping…

So Kath…. if you see this let me know if any bits may be useful to you. as you know i tried out the Fitlife full. For me the headgear from the small had to be put onto the large mask. So I ended up with both. Knowing how expensive they are it seems awful to just ditch them.

Although not comfortable if i were to ever get a cold, which luckily i hardly ever do, the full face may be a better option, just on a temp basis. So keeping the larger of the two and messing around with the headgear to fit me, would be best.

If you keep supplies of the headgear and  other bits for the other masks, some of the bits I have, if you added spares as necessary, may be of some use to you. let me know if you'd like me to send them to you. 

you could always do a swap for some wipes or something :)

I do hate throwing things out. I look back now even at the comfort gel blue and even that i don't think I could cope with.

the only masks  have been truly able to get along with are the True Blue and this new Wisp. I'm just thankful that my consultant thinks I was worth it to have allowed me to try various ones :)

give me a shout Kath if you are interested :) thanks xx

Lots of people are doing well with this new Wisp nasal mask it seems. I searched for it and came across a blog post from a CPAP user who reviewed it. He said its no good for people that sleep on
Bugger, hit the wrong button...

Sleep on their sides? Can anyone back that up or disagree with it?

Hi Mary, have you used Sleepyhead to try to workout why your AHI's are still high? If so, check your mask leaks if you are using Sleepyhead. The other thing to check is whether you are hitting you maximum pressure or not, your pressures may need some adjusting, I know you have been working on it for a while and it's fine to vent or rant.  I know your on sleep apnea board, why don't you start a new post on there as well to see if there is any more advice there?
 
Mary Zimlich said:

Having a bit of a setback lately.  My AHI has been up to 12 on some nights, but my last seven day average it was 7.8 which is normal for me.  I have been sleeping too much.  Some mornings I wake up, or rather Sky, my dog wakes me, and after his walk I go back to bed and sleep until I'm ready to get up again.  That can be 10-11  AM  (my dog wakes me at 6:30-7:00 AM).  Then at 3;00PM I get so drowsy I have to take a nap and it's not unusual to sleep three to four hours and then back to bed at 9:00PM and I sleep well through the night.  No insomnia from my napping.  My Psychiatrist suggested it may be two of my meds- pain meds and clonazepam (for anxiety).  I have cut back on the pain med and rarely take clonazepam so it's not that.  I have been diagnosed with hypersomnia which means I sleep too much.  I used to take Provigil, but it stopped working.  I could take 400 mg and go right to sleep.  For various reasons my doctors won't prescribe anything else.  I might as well take caffeine pills as Provigil, but they make my hands shake.  This sleepiness is what sent me to the sleep doctor in the first place.  I find it very distressing.  Just venting, I guess.  Any ideas/opinions welcome,

Mary

Mary, I think the meds probably are the cause as well, but if you need them you need them, I know how you feel about not wanting to have to take them, I was so glad when I went off them as I always fought my psych and family as I didn't want to be on them in the first place. I have been off all meds for a year now :) but understand they are a necessity for some people.
 
Mary Zimlich said:

Terry, I check my numbers on Sleepyhead every so often.. I have primarily hypopneas, very few obstructive events and even fewer central events.  My doc and I have always thought the problem is due to the many meds I take, which include methadone for chronic pain.  Without the pain meds I would not sleep at all.  Certainly they can be causing the daytime sleepiness, too.  I'm seeing my sleep doc next month and perhaps he will do some tweaking.  I don't want to change anything myself right now as I'd like him to see how his own prescription is working.  Before starting the ASV machine my AHI had been 18.6 for six months and even higher before that.  I tried every modality before ASV, again mostly hypopneas . I and may start back on Provigil.  I have been working on reducing my meds as much as I can.  I made the mistake of stopping one I take for early onset dementia and in two weeks I was a wreck.  I'll leave that one be from now on.  I appreciate your advice.  Who knows what a fresh viewpoint will turn up. I'll do a check on sleepyhead right now.  Thanks again.

Mary

JUST CHECKED MY NUMBERS- IT'S A GOOD THING AS I FOUND THE SD CARD IN (sorry) the computer instead of the asv.  Again, overwhelming hypopneas  with a few more clear airway events which are probably opiate induced.  I take psychiatric and pain meds and my quality of life is very bad without these meds.  Believe me when I say I would like to drop all my meds.  Life is not worth living without the medicines, not to be dramatic, but I'm severely bipolar and life is miserable for those close to me. the odd stranger, and me, without medication.  No doctor has ever  suggested that I try to reduce or stop medications so I live with the side effects.  Thanks again.

M

I think you do amazingly well Mary with all your problems and I wouldn't mess with your medication without guidance from your drs.  Whilst they might affect your sleep, it's just as important to be emotionally stable and often these meds are life-savers too, as well as CPAP is.  I know you have highs and lows, but believe me you are a source of inspiration to many others.

Mary Zimlich said:


JUST CHECKED MY NUMBERS- IT'S A GOOD THING AS I FOUND THE SD CARD IN (sorry) the computer instead of the asv.  Again, overwhelming hypopneas  with a few more clear airway events which are probably opiate induced.  I take psychiatric and pain meds and my quality of life is very bad without these meds.  Believe me when I say I would like to drop all my meds.  Life is not worth living without the medicines, not to be dramatic, but I'm severely bipolar and life is miserable for those close to me. the odd stranger, and me, without medication.  No doctor has ever  suggested that I try to reduce or stop medications so I live with the side effects.  Thanks again.

M

Roz and Mary, I created a 'Buy, Sell + Swap' section on this forum a while back, and many people have sold their unwanted accessories through it.  Obviously, it's not right to sell masks which officially belong to the NHS, but I'm sure nobody would mind swaps - even if it's just curiosity to try out different ones.  http://hope2sleepguide.co.uk/group/buy-sell

Mary Zimlich said:


Roz, some people have arranged person to person exchanges or sales of gently/little used masks.  With Kath's permission perhaps  we could start a thread listing these items for folks wanting to try them out.

 


Roz B said:

Thanks Mary for letting me know what you do with your old masks.

 

I would absolutely disagree with this too Steve, and when I trialled it I was actually thinking how much better this mask is for side sleeping (which is the best position to sleep with for OSA sufferers).  Have a look at my description on the website http://www.hope2sleep.co.uk/products/103 and we have a review on there too - only one at the moment as the mask is still so new, but I'm only hearing good things at the moment.

Steve Clarke-Keating said:

Lots of people are doing well with this new Wisp nasal mask it seems. I searched for it and came across a blog post from a CPAP user who reviewed it. He said its no good for people that sleep on

Reply to Discussion

RSS

Sleep Apnoea Forum

New to the Sleep Apnoea Forum? 

1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!

Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.

 

Latest Activity

Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I did replace the tank in my SleepCube, and had to regularly take the silicone sealing gasket out and give it a goof clean, but not infrequently found it standing in a pool of water in the morning.  The machine sat on a tray because of…"
Tuesday
John posted a discussion

Nasal valve collapse

Does anyone have any experience of nasal valve collapse?Wondering if I have this but I don't know what the norm is.Been trying widgets that hold the nose open and it's like night and day.See More
Sunday
John replied to John's discussion Airsense 10 -humidifier runs dry
"Wow it's the other way round for me.I found with the Sleepcube I'd often have a good bit of water still there in the morning. Today I woke up with a dry tank on the Resmed again and it's not on full heat or flow. I got it on 6…"
Sunday
Becky Murkin posted a discussion

F20 AirFit small marking bridge of nose

Please help or give advice all wise people on here.I have had the Resmed F20 AirFit small mask for over a month. Seals yet…See More
Mar 19
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"A very helpful reply Jonathan. I found the pressure setting for the full face mask to be too high when I changed to a nasal mask, but perhaps I should have persisted? I'll try again and I'll also discuss with the clinic whether an APAP…"
Mar 13
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Ramble alert!  My history is that I spent part of each week at a different location, so bought a second machine identical to my fixed pressure NHS machine and set it up to match using the clinician menu.  This was a very long time…"
Mar 12
Frances Knight replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"Thanks Jonathan - I had seen the YouTube video. My question is really about the experience of people who have control of their pressure settings, for example those people who have bought their machines directly and not obtained them through an NHS…"
Mar 12
Jonathan replied to Frances Knight's discussion Air Sense 10 - changing pressure settings
"This is NOT a recommendation http://www.youtube.com/watch?v=VNUWhd2UgQM"
Mar 11
Frances Knight posted a discussion

Air Sense 10 - changing pressure settings

I have been successfully using my air sense 10 since OSA diagnosis, and my AHI is now under 2. I had an appointment with my clinic this week and have been told there is no need for further appointments and just to contact them if I need supplies or…See More
Mar 11
Swen Greve is now a member of Hope2SleepGuide
Mar 4
Jonathan replied to Sue Reeves's discussion A few questions..
"If you have a helpful GP, I would ask them to re-refer you to the sleep clinic."
Mar 3
Sue Reeves posted a discussion

A few questions..

A quick bit of backgroundDiagnosed with OSA about 7/8 years ago by my local sleep clinic and given a F &P Icon CPAP.  After a couple of follow-up appts to sort out any issues, I was sent on my merry way. I have had no further face to face…See More
Mar 3
Jonathan replied to John's discussion Airsense 10 -humidifier runs dry
"I previously had a DeVilbiss Sleepcube and the dehumidifier did sometimes run dry.  On the other hand I now have an AirSense 10 and it never runs dry, and I've had the humidity turned up high."
Feb 26
John posted a discussion

Airsense 10 -humidifier runs dry

Hi. I'm finding the Airsense 10 the hospital gave me, the humidifier chamber runs dry. It's not even on max settings, which I'm guessing would empty it a lot quicker. Seems like a big design oversight to me. Does anyone else have this trouble? The…See More
Feb 26
David Hudson posted a discussion

Decline in hearing

HiI have regular, well yearly check ups at work. One being a hearing test. Since having my cpap machine my hearing has declined rapidly in 1 ear.....could this be as a result of pressure? I believe I'm on 15cm p max h2o. I just use a nasal…See More
Feb 26
Profile Icontim richards, mark & les, Lesley Parks and 1 more joined Hope2SleepGuide
Feb 13
Jenny Wren replied to Jenny Wren's discussion Feeling Abandoned by the Sleep Clinic
"I've got lucky! I can collect a new machine next week. It's been really helpful to 'speak' to people here and to Kath. It alerted me to the fact that I'd slipped through the net. The clinic were very apologetic and now all…"
Feb 8
Ejog1 replied to Jenny Wren's discussion Feeling Abandoned by the Sleep Clinic
"Thanks. Good news for me today, my clinic did finally reply to me and they’re giving me a new machine. The person I spoke to was super helpful. The NHS clinics are great when you’re able to speak to them, but they seem to be…"
Feb 7
Jenny Wren replied to Jenny Wren's discussion Feeling Abandoned by the Sleep Clinic
"Yes, my machine is affected. Seems I slipped through the net. I'm now on the sleep clinic's radar again and am hopeful that this will be sorted soon. Thanks for your reply and stay well."
Feb 7
Jenny Wren replied to Jenny Wren's discussion Feeling Abandoned by the Sleep Clinic
"I'm sorry to hear that. I emailed Kath about this and she was very helpful. She advised me to get in touch with my sleep clinic and I have had a reply from them. I so hope that you get a response soon."
Feb 7

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service