Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Hi everyone

I completed a  home test for sleep Apnoea a month ago. I was told by the specialist that she would call me back to discuss the test results. 

Instead I received a letter this morning telling me to go in to the hospital to be fitted with a CPAP mask and machine.

I am a bit annoyed that I have not had a chance to talk about my results. I have no idea how bad my Apnoea is, just told I have to use the CPAP machine for 3 months and have an overnight oximeter. 

I had the overnight oximeter a few weeks prior to the full home test. 

I am really concerned about wearing a face mask. I am claustrophobic when it comes to masks on my face. This stems from going to the dentist as a child and having a mask for anaesthesia. 

I also have really, really sensitive skin which even when touched in the wrong way comes out in red weals . I have to use special skin care. I just know that wearing a mask strapped to my face is going to cause me real problems. I have just got my skin settled and I know this will upset things.

I have Body Dismorphia relating to this skin condition and I am scared it will trigger it again.

Just wondered what people thought. Does the trial mean I have serious sleep Apnoea?

Are there any other masks which don't have to be strapped across the face?

I read an article about a disposable product called 'Provent'. Any one had any experience of this?

I am so scarred that I am going to cause my skin to erupt. It is really worrying me.

Any help would be great, if anyone has time.

Thanks

Sue☺x

Views: 238

Reply to This

Replies to This Discussion

Hi Sue

That's certainly a shock to receive a letter confirming a diagnosis of sleep apnoea and to be told to go straight in for a CPAP fitting, but I guess they're trying to speed things up as many of the clinics are struggling.  Back when I got diagnosed I had a different problem, as I'd been called back to the consultant to be told I had severe sleep apnoea, but had to wait several months for my CPAP, which was unnerving and frightened my young son and I regretted telling him at the time.  It all depends on which clinic people are with as to the speed and system that is offered at the different sleep clinics.

It's understandable you're feeling anxious with you saying you have claustrophobia and have sensitive skin.  Regarding the claustrophobia, I can promise you I have come across many people with this, who have overcome it and never believed they would.  One helpful way of looking at it is to think to yourself that not wearing a mask is more claustrophobic because you really aren't able to breathe when asleep, so the mask will become your friend.  As for the skin conditions, discuss this with the sleep clinic as there are a lot less invasive masks out now.  The DreamWear is the newest one for nose breathers http://www.hope2sleep.co.uk/products/143 and the Amara View for mouth breathers http://www.hope2sleep.co.uk/products/141  Also we now have the Silent Night Mask Liners available which act as a barrier between your mask and your skin, and these are helping lots of people with both skin issues and mask leaks http://www.hope2sleep.co.uk/products/134

The CPAP trial doesn't necessarily mean you have severe sleep apnoea, but you need to discuss all this with the clinic to find out how severe it is and whether it's obstructive or central sleep apnoea.  The Provent isn't available on the NHS and has only limited success with certain nose breathers, and it's very important to be on good therapy so wait and see what they say.  I hope you don't have long to wait for your appointment.

Hang in there Sue and try not to worry - easier said than done I know!

Hi Kath

Thanks for your reply. I am so sorry that I have only just round to thanking you.

Thanks for the info, I am off to see the specialist this afternoon. I insisted on seeing her to see exactly what the problem is before thinking of coping with the trial.

If I can come back to you after I have seen her that would be great.

Thanks again 

Sue☺ xx

You're welcome Sue, and I know it's not the best news in the world to be told we have sleep apnoea, but keep telling yourself that we're the lucky ones that have actually been diagnosed, because believe me this is far more common than people realise, but most people are still struggling through life unaware that their undiagnosed sleep apnoea is at the root of their problems.  Have a read of this article I wrote a few years ago http://www.sleepapnoeablog.com/is-cpap-a-blessing-or-a-curse/ and good luck with your appointment this afternoon x

Hi Sue.

I hope your meeting with the specialist went well and you are able to cope with CPAP therapy and that it helps you as it has helped me and others. 

Can I suggest that if you are struggling with issues of mask usage from childhood that you seek counselling / therapy, I've had to do this recently myself for difficulties with memories from many many years ago and I have recently come through a long course of therapy that has been highly successful.

Your GP will help, or you may be able to self-refer to a local talking therapy team (we can do that in Hull!)

Good luck with the CPAP - ask questions here!

Hi Sue I do hope you are doing Okay.  I've only been diagnosed and treated for a few now and its the best thing that could have happened.  I am sleeping so much better, I have lots more energy and the bags under my eyes have cleared up loads.  Stick with it.  I have the Amara View for mouth breathers http://www.hope2sleep.co.uk/products/141. The first mask I had covered my nose and had a "foot" that pressed between my eyes. I imaging it would feel very claustrophobic. The new one is much much better.

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