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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...
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Best Wishes for good sleep!
Kath
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Replies to This Discussion
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Permalink Reply by Kath Hope on
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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
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Permalink Reply by Roz B on
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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
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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.
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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?
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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
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Permalink Reply by Steve Clarke-Keating on
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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
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Bugger, hit the wrong button...
Sleep on their sides? Can anyone back that up or disagree with it?
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Permalink Reply by Terry Vella on
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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
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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
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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
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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.
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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
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