"Hi
The SleepCube was a private purchase, as way back then my local sleep clinic assessed patients by filming them overnight, whilst wearing an oximeter, and only issued CPAP machines without humidifiers. There was no remote monitoring and…"
Sleep Apnoea Forum Bringing Help + Support to the Patient
Diagnosis information
I was diagnosed as suffering from sleep apnoea last November after going to my local hospital overnight for a sleep study; however, despite several attempts I have been unable to get any information from the clinicians. They are unable to tell me what my AHI score was nor any other detail, but have only said that my oxygen levels were low while I slept.
I'm sure they're right and I do have OSA but has anyone else experienced being diagnosed with so little information? I have very little confidence in the dept I am attending as they seem to know very little about masks etc. I was eventually given a Resmed S9 (after a 2 month wait) and it came with nasal pillows; there had been no discussion with me about type of mask etc and I told them when I collected it that I am a mouth breather with sinus problems!
I have really struggled with it and they agreed to provide me with an alternative; despite me suggesting that they may need to use sizing guides they ordered a Respironics Amara mask for me and I collected it on Friday. Unfortunately, it is a medium size and I am quite petite framed. The mask extends to the bottom of my chin and I cant really use it without experiencing leaks.
I'm now going to have to go back to them and request a smaller mask; I have just ordered my own sizing guide from Hope2Sleep and will wait for that to arrive before telling them what size mask is going to be right for me. I am feeling quite frustrated at the moment; I feel very little further on than I was almost 4 months ago when first diagnosed. I know people often have early niggles but has anyone experienced this kind of inefficiency? What a waste of money too..... I'm glad I'm not having to pay for these myself but I am starting to wonder if I should have just bought myself a mask!
Linda
Views: 91
Replies to This Discussion
-
Permalink Reply by Kath Hope on
-
Am sorry to read about your frustrations Linda, and am not sure why your clinic can't give you your AHI from your Sleep Study, unless you only had a Pulse Oximetry Test on your finger for the overnight study. In that case they would only be able to tell you have many oxygen desaturation events you had, and not all apnoeas cause desats every time.
It is understandable why you're having initial struggles, bearing in mind you were given a nasal pillows-type mask which is not an ideal type of mask to be given when first put on treatment, and especially if you're a mouth breather and have sinus problems. We're getting good feedback about the Amara mask you've got, but it is crucial that you have the right size, and when you get the sizing guide (which will be in the post tomorrow to you) if you find you're unsure about the correct size then for that mask it's always best to go with the smaller one. Incidentally, when I trialled the Amara mask I used the medium, but it was only when I switched to the small that I achieved good therapy - leaks are a problem with that mask if it's the wrong size. Also, have another look on the website http://www.hope2sleep.co.uk/products/101 and you'll see there are also 2 different sized frames available (standard and reduced size) and this also makes a difference, so make sure your clinic order the correct frame size too!
I hope you get the mask issue sorted quickly - the mask is more important than which machine you have! If you ever decide to purchase a mask we sell, please speak with me before ordering so I can help you, as once masks are unsealed and tried on they cannot be returned due to hygiene issues. I've wasted a lot of money on purchasing masks in the past that turned out unsuitable
You say you have the Resmed S9. If it's not the basic Escape model, you can view your stats on the free SleepyHead downloadable software. See this topic post http://hope2sleepguide.co.uk/forum/topics/free-software
-
Permalink Reply by Linda on
-
Hi Kath
I had lots of equipment attached to me when I had my sleep study, including the finger pulse bit. They also had audio and video recording. When I attended my 1st appt after the sleep study they couldn't find the results but the technician said he 'recalled' that my saturation levels were low. I don't think they've actually found them ever! I am determined to try my best to get this therapy to work, but sometimes feel that I am fighting an uphill battle at times !! I won't give up easily though.... and Hope2Sleep is a great support.
I shall certainly have a look at that software.... that sounds really interesting!
Linda
About
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
"Yeah I was wondering about email address. I thought probably if they wanted me to mail them they would have given out an address. I can imagine heart data is considered more acute than sleep data, so it would make more sense to have that…"
"Hi.
I didn't use PatientsKnowBest (ironic name), but I have an email address for my heart department for sending in ECGs. I was just saying that they may be able to review a PDF when then cannot review a data file from your O2 ring.
I am…"
"Hi Jonathan, did you do that through PatientKnowsBest?"
"On an unrelated topic, I've been able to send ECGs by PDF to my heart clinic.
On the subject of Resmed and apnoeas, take a look at https://youtu.be/ufOOAfyzZso?si=Tpdl4EEiCQBZR4iD&t=276
Your machine may be under-reporting.
Good…"
Wellu O2 Ring - is it accurate enough for the medics?
Moving some furniture my long lost O2 ring continuous oxygen saturation monitor turned up. So I've been wearing it and it tells me I have loads of saturation drops during the night even though my Airsense 10 says I have very few apneas.So I get two…See More
"Hi,
Just thought I'd give an update. So, I had my appointment with the NHS sleep clinic which was much quicker than I anticipated and I've now had the overnight sleep study. My AHI is now 6, down from over 30, so I'm…"
"Hi Sally from what I read the airsense doesn't suffer the same foam degredation issues as the infamous Phillips machine.I can conceive it's possible that microplastics may be shed from the flexible main tube.What worries me more about the…"
"Hi
My sleep clinic discharged me, saying they were happy I was self-managing. Roll on a decade and the cardiologists taking care of me were very unimpressed and I was re-enrolled. I expect remote monitoring with current generation Resmed…"
"Hi Jonathan,
Thanks again for the info. My cpap *should* be monitored by the NHS though I haven’t had any contact from them since pre-covid. I checked out the link you gave to access extra data and I think that’s going to be…"
"Hi
I have the ResMed Airsense 10 Autoset (APAP). It's monitored remotely by my NHS sleep clinic and I believe they can make changes to the settings. I don't know whether they are notified if I make changes, nor whether they…"
"Hi Jonathan,
Thanks for the reply. I'd say that I'm fairly technical. I have the ResMed Airsense 10 Elite machine. I've discovered that I can upload data wirelessly from my machine and having lowered the pressure by…"
"Hi
You don't say how technical you are, or what sort of machine you use. However https://www.sleephq.com/ has software which allows you to upload data from compatible machines, and analyse your sleep "score", including a…"
air bubbles after weight loss
Hi,I've been on Mounjaro for about 3 months now, not primarily for weight loss, but I have lost weight around my face and neck. I've noticed that I am increasingly getting air bubbles in my mouth which of course is disturbing my sleep (and my…See More
Micro plastics risks
I was reading an article in the I newspaper today written by a journalist who had her blood tested for micro plastics and was shocked by the results.…See More
job with the charity
Was wondering if there might be a job for me with Hope2Sleep?(I also just asked this of a group by mistake)See More
For Sale - Ventura Full Total Face CPAP Mask
I’m selling an Ventura Full Total Face CPAP Mask Large and two spare liners. I bought it new from the Hope2Sleep shop, but it is not suitable for me. Only used for about two weeks so I have washed it thoroughly. Because of this, it is very much…See More
"I put in a claim for PIP which was denied and now I am over 66 and on pension I tried for AA. Denied again.I have other health conditions ( Diverticular disease and Bile Acid Malabsorbtion ) which I consider hard to live with and they refused all of…"
© 2025 Created by The SleepGuide Crew.
Powered by
