Hope2SleepGuide

Sleep Apnoea Forum Bringing Help + Support to the Patient

Hi all

I am so pleased I have come across this forum. To get the best advise I find it best to ask people who have the experience.

My story

For my work as a field based technical engineer I am required to drive long distances daily. Going back a few years ago I began to struggle towards the end of the day with tiredness. Thought nothing of it & put it down to part of driving a lot. As time wore on I began to feel really tired every morning I woke up. This reached a stage where I decided it would be best to flag this up with my employer about 3 years ago.

Approx 18 months ago I lost my dad to dementia. For the final 3 days of his life in a care village I slept on his bedroom floor. My mum & sisters shared a room opposite. I remember waking up the morning before our dad passed away, with my 2 sisters in the room. One sister said to me do I have sleep apnoea? 

I had heard of the condition but knew nothing about it. I replied what is sleep apnoea & why do you ask?

Both sisters said you make such a lot of noise snoring, making gasping noises then you go silent as if you have died!

I have been getting told for years from my wife about snoring or in the past would grind my teeth when sleeping. Apparently my snoring has got really bad. For my personally I was really struggling with extreme tiredness so I again reported this to my employers HR department as before although I had raised it, it was with a business unit director & not actually with HR.

I went to the doctors to try & get some answers on why I was always so tired. One thing led to another. It turns out in the words of the consultant I don't have a lot of room in there, re airway. I am currently under the guidance of the sleep lab at Leicester General. They have set my up with a Resimed 510 auto with full face mask. The 1st technician I seen could not locate my file so a few important bits of info were not passed onto me. During me second visit I was informed the readings showed that I was recorded at 41.9 and that I had a serious condition. At least I now know what the causes of my tiredness is.

Unfortunately when I returned home with the CPAP machine I went down with quite a nasty cold flu type virus. I tried to use the CPAP but due to coughing I just could not cope wearing the mask. After a month I returned to the sleep centre for next appointment. The data from the machine showed I had only used it for 1.6 hours in total which clearly is no good enough. The lady technician suggested I had got off to a bad start so lets start again. That was 2 weeks ago.

Every night I use the CPAP. Unfortunately I really am struggling with it. Absolutely fine with positioning the mask. However when I drop off I find that I awake & when I do the 1st thing I do is pull the mask off. At 1st I was aware I was doing this. Thee past couple of nights I have woken to find the mask on the floor. I cannot recall removing it.

What I experience seems to be state of claustrophobia. Lips, mouth & throat feel so dry the automatic reaction is to pull the mask off! Sometimes I sense an increase in pressure.The main difficulty for me now is I am waking up feeling more exhausted than ever before.

My next appointment is 27th June. However I cannot wait that long so will be making use of the walk in clinic times albeit I live miles away for Leicester. Via social media I have since found that several friends also have sleep apnoea. 2 in particular have suggested ask for a nasal type mask. This changed their lives! I did mention this to the technician at my visit 2 weeks ago to be told straight no! I really must get my head around the face mask & using the CPAP machine.

Apologies for the long story folks. I really do need help here. I know I have to use the CPAP machine. I get the importance of it. However I cannot continue to wake up even more tired than I did before.

I feel right now I really need to be able too at last try the nasal type mask. Am I correct in insisting I should be allowed to try this route?

Thanks for reading

Beany Lad

    

Views: 124

Reply to This

Replies to This Discussion

Hi, I hope you read this tonight as I think I can help you. I tried to message you but we have to be friends first so my request will end up in your inbox. My first trials were at The Leicester General way back in the 1980's when sleep apnea was unknown and although it was in an NHS hospital the trials were private and costly. I have used a variety of automatic machines since and every conceivable mask but settled on a nasal mask. I think this would be best for you too even if you are slightly claustrophobic. I never did take much notice of the sleep clinics with regard to masks as you don't need a prescription and I was working in America for a few years where they are much cheaper so I accumulated quite a few.

Hi Eric

many thanks for your advice. Believe it or no after posting my story last night I think definitely managed to have the best night so far using the mask. After dropping off I did not find myself with a dry throat for the first time. I was very aware I seemed to automatically breath through my nose only which has made an enormous change. When I did eventually wake up, I removed the mask. I assumed it was time to wake up at 6.30am. I actually did not know what the time was but it did feel like I had slept through the night for the 1st time since beginning with this CPAP machine almost 2 months ago. If I have to just buy a nasal type mask I shall go ahead & do that. 

I find it quite hard to get my head around that this is a condition that must have begun many years ago which I guess like all other suffers we had no idea we had it. It does explain a lot re the tiredness though

That is great news. I tried again to message you but it said "You can't send a message until Beany Lad accepts your friend request." I can send you an unused nasal mask but it is unwise to quote addresses or private email addresses on this forum. If you have got a plan just go for it, there will obviously be ups and downs but I am afraid that is part of the journey, you will get there and be able to live the life you wish.

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

GD is now a member of Hope2SleepGuide
yesterday
AnnesleyA added a discussion to the group Buy-Sell-Swap
Thumbnail

CPAP Machine for sale - never used RES MED S9

Res Med S9 CPAP machine complete with humidifier, tubing and medium sized mask (only tried on once and is immaculate). Also comes with custom carry case and instructions from new. Whole thing is immaculate. £450aannesley@hotmail.com Email me if you…See More
Thursday
Stella Havard replied to Thomas hatrick's discussion Selling Dreamstation auto CPAP machine with heated humidifier in the group Buy-Sell-Swap
"Hi,     Do you still have this for sale?"
Tuesday
Stella Havard joined The SleepGuide Crew's group
Tuesday
Stella Havard is now a member of Hope2SleepGuide
Tuesday
Adrian G Clarkson is now a member of Hope2SleepGuide
Sep 6
Mike Fieldhouse replied to Mike Fieldhouse's discussion CPAP Machine - ResMed AirSense 10 Autoset. Like new. in the group Buy-Sell-Swap
"Now sold."
Sep 5
ashley yeats added a discussion to the group Buy-Sell-Swap
Thumbnail

Various CPAP Masks for Sale new and Sealed resmed, simplus, phillips

hi i have a selection of masks for saleRESMED MIRAGE QUATTRO (LARGE) PART NUMBER 61227 X 2RESMED MIRAGE QUATTRO (mEDIUM) PART NUMBER 61226RESMED QUATTRO FX MEDIUM) PART NUMBER 61704RESMED MIRAGE FX FOR HER (SMALL) PART NUMBER 62132 X 2RESMED AIRFIT…See More
Aug 29
Susan Bisson is now a member of Hope2SleepGuide
Aug 25
Mike Fieldhouse added a discussion to the group Buy-Sell-Swap
Thumbnail

CPAP Machine - ResMed AirSense 10 Autoset. Like new.

CPAP Machine - ResMed AirSense 10 Autoset. I bought this while waiting for the NHS to issue me one, it's about a 6 month wait where I live. This is the same machine that the NHS use except it automatically sets the air pressure. Everything here to…See More
Aug 21
Mike Fieldhouse joined The SleepGuide Crew's group
Aug 21
Mike Fieldhouse is now a member of Hope2SleepGuide
Aug 21
Pat Atkins is now a member of Hope2SleepGuide
Aug 14
Kath Hope replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"A belated welcome Andrew and you're definitely not alone.  It won't be long before some of your friends and family get diagnosed due to how common sleep apnoea is, and it's you who'll be helping them :)  As Jonathan has…"
Aug 13
Jonathan replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Thankfully I do not suffer from claustrophobia, but I did start off (over 10 years ago) with a big bulky mask.  I soon purchased my own mask which was much more minimal.  Currently I am using a Dreamwear…"
Aug 10
mark peters replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi Andrew, I got my CPAP, Christmas Eve 2012 and the first time I wore my mask, my claustrophobia kicked in big time, so you have my sympathy. I ended up on sleeping tablets and I’m still on them now . It’s been the only way I’ve…"
Aug 10
Andrew Mitchell replied to The SleepGuide Crew's discussion Welcome to our Forum - Feel Free to Introduce Yourself Here.
"Hi All, Thanks for allowing me to join it is very much appreciated. I was diagnosed with sleep apnoea about 8 months ago and I received my ResMed machine about 6 weeks ago, so everything is still a bit new. I am also claustrophobic which has made…"
Aug 10
Edam replied to Edam's discussion Double inhaling
"After over 2 years of visiting the hospital and Resmed and with many posts on various forums I have found the answer. Use my inhaler 4 hours later Simple !!!"
Aug 10
Sleep2snore replied to Hazel Hall's discussion Mask
"I forgot to say that my last mask is showing signs of fatigue after a year and a half, so I got a replacement to use right away if it fails,.  I like to have a back-up."
Aug 10
Sleep2snore replied to Hazel Hall's discussion Mask
"Some manufacturers recommend replacing a mask every 6 months, but then they would wouldn't they? More money in it for them. I have had a mask for several years and as long as it is kept clean or does not go off colour it is fine. If you feel…"
Aug 10

© 2019   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service