Progress after 5 months - it's a rollercoaster but worth it!!!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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SolisQuaesitor71
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Progress after 5 months - it's a rollercoaster but worth it!!!

Post by SolisQuaesitor71 » Thu Apr 12, 2018 3:31 pm

Hello everyone, i'm sorry i haven't posted on here for a while and feel slightly guilty for it.. as they say, people with problems usually complain and i was one of them, but i felt it appropriate to detail some of my experiences to people new to CPAP like i am/was.

The first 3 months to be honest was an up and down rollercoaster ride, with some days being ok, some great and some bordering on the gates of hell. However what has to be understood is that we are all so used to 'treatment' for various issues usually kicks in after a few days before we realise the benefit.. not the case with CPAP, it 'can' work immediately and usually it initially does however there are then the issues of 'rainout', leaks, etc which seem to cause more problems than they solve.

So what are the best things that have worked for me? Well i have a Auto CPAP which isnt quite as fierce as the basic models usually prescribed in the UK. I also have a humidifier, however if you have one you really must get an insulated sleeve for the hose to assist with rainout.

Don't hide the hose under the quilt as it doesn't help and generally makes things worse.

The key thing is... (trumpet fanfare queue) to get the correct mask and fit it correctly. I've now got a pressure sore on my nose bridge which makes me look like a hindu, and thanks to some iffy nose pegs for my mouth mask permanent scars either side of my nose where it started to jellify.

The general consensus is that a mask should 'float' on your face like a hovercraft.. sadly this simply doesn't work.. ok when you lay there at night it will hover on your head until you move it to one side and are greeted with a screeching fart in the middle of the night which will possibly result in the masks ability to suddenly fly across the room and explode on the opposing wall.

Take your time, adjust the tensions of the mask as necessary, test it for a night and if you're not happy modify.. it WILL take time but perservere.. don't forget your body is in adjustment mode (sorry) and you won't necessarily have a great sleep in the early stages and you'll find it difficult to adjust with unpredictable nights of sleep or disturbance, but in time it WILL get better.. the thought of me not wearing my mask now feels strange to me.

Don't worry if you have 2 hours therapy on the CPAP one night and then wake up fresh as a daisy.. it's normal, your body (depending in the severity of your apnea) has had the first 2 hours sleep in a long time and is happy. I now remove the mask after 6-7 hours sleep if i wake and try to get back to sleep without my mask. The Hospital worker has reassured me that i won't be at risk of heart attack/stroke if i do this in the mornings.

My initial pre CPAP AHI is high at 38. It dropped to around 15 and upon checking tonight is 2.1.. this is considered normal... if you're ever unsure if you've had a good sleep you'll soon know if you awake and your legs/arms are almost without sensation and totally relaxed - this is something i hadnt experienced since i started having problems.. and after time with therapy you'll (believe it or not true) possibly start struggling to get up in the morning like a teen and get tired during the day, albeit not in the same way as before the treatment.

I had some real downers which i shared on here.. very supportive people did give their assistance but as they say, everybody's different and finding the right combination of mask, machine and mask tightness is a random affair but it can be done if you want it to be. If you're unsure of how severe my desperation was, i nearly went through a Trachyostomy to have a hole in my throat to ensure a good sleep however after having a chat with someone who i know has had to have one due to cancer, it introduces a lot of other problems.

Next, if you can, try and get an auto CPAP.. if you're hospital won't provide it it's a worthwhile investment as it will adjust to your breathing patterns and the initial whoosh of air wont be as pronounced. Get the software 'sleepyhead' and share it with the community, if they suggest an adjustment (and you're in the uk) then try it.. you'll have to fiddle with the machine but the NHS won't really be that bothered if you are up front with them and don't fiddle like crazy.. i actually increased my initial settings and it helped.

Finally.. nothing happens straight away with CPAP. Just as you may have suffered for a few years before things came to a head it'll take time for your body to both adapt and get itself back in order again.

Sorry for the ramble, i felt it only fair that i post a bit of my own experiences which i won't profess are a representation of everybody but if it helps one person then it's worthwhile :)

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Arlene1963
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by Arlene1963 » Thu Apr 12, 2018 3:40 pm

SolisQuaesitor71 wrote:
Thu Apr 12, 2018 3:31 pm

.. and after time with therapy you'll (believe it or not true) possibly start struggling to get up in the morning like a teen
This is how I feel! I sleep so deeply and well now with CPAP that I hate waking up.

Thanks for sharing your experience and I am so pleased that you are another success story. Well done! It isn't always easy at first, but if you stick with it, so worthwhile.

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Dog Slobber
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by Dog Slobber » Thu Apr 12, 2018 4:41 pm

SolisQuaesitor71 wrote:
Thu Apr 12, 2018 3:31 pm

[snip]

I've now got a pressure sore on my nose bridge which makes me look like a hindu,
This is where I quit reading.

Equating a scab on your nose to Hindus is rude, ignorant and bigoted.

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LSAT
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by LSAT » Thu Apr 12, 2018 4:49 pm

I quit when he said keeping the hose under the quilt makes things worse and that mask floating on your face doesn't work.

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Lucyhere
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by Lucyhere » Thu Apr 12, 2018 5:02 pm

Dog Slobber wrote:
Thu Apr 12, 2018 4:41 pm
SolisQuaesitor71 wrote:
Thu Apr 12, 2018 3:31 pm

[snip]

I've now got a pressure sore on my nose bridge which makes me look like a hindu,
This is where I quit reading.

Equating a scab on your nose to Hindus is rude, ignorant and bigoted.
+1 SolisQ -- it would be a good idea if you would consider editing your post.
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lamar2217
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by lamar2217 » Thu Apr 12, 2018 5:06 pm

I agree with the inappropriateness of the Hindu comment. However dismissing his opinions about hose placement and mask fit is also not appropriate. We all are entitled our opinions based on experiences.

Lucyhere
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by Lucyhere » Thu Apr 12, 2018 5:11 pm

lamar2217 wrote:
Thu Apr 12, 2018 5:06 pm
I agree with the inappropriateness of the Hindu comment. However dismissing his opinions about hose placement and mask fit is also not appropriate. We all are entitled our opinions based on experiences.

I agree with you. Hose placement and how one fits their mask is very individual... particularly hose placement.
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chunkyfrog
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by chunkyfrog » Thu Apr 12, 2018 8:20 pm

Just an observation, but SolisQ sounds like a candidate for a mask liner,
like PadaCheek.

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Arlene1963
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by Arlene1963 » Thu Apr 12, 2018 8:44 pm

Considering where he was a mere few months ago, rock bottom and considering surgery ...viewtopic/t158112/Ok-Enoughs-Enough-Sur ... ease-.html, the advice he received on this forum has likely saved his life.

He stuck with it and kudos to him and all those who helped him get to this point, and who are still helping .... (Chunkyfrog, for example, with the suggestion of Padacheek)

I was very pleased to read this update. It is great to know that it is working for him after the wretched start he had. What a turnaround!

Lucyhere
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by Lucyhere » Thu Apr 12, 2018 9:52 pm

I'm delighted that SolisQ has progressed to the point that he can post such a remarkable update. However, one thing has zip to do with the other. As was previously mentioned, equating a scab on your nose to Hindus is rude, ignorant and bigoted.
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by Pugsy » Thu Apr 12, 2018 10:15 pm

I am glad you are back without a hole in your throat.

I know one forum member who did it but it was after about 10 years of trying cpap. Last I heard she hadn't regretted her decision because she truly did try and try all options and for years and years and year. She told people...last resort after all other options have been exhausted.

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SolisQuaesitor71
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Re: Progress after 5 months - it's a rollercoaster but worth it!!!

Post by SolisQuaesitor71 » Mon Apr 30, 2018 5:09 pm

Well that was a surprise and not a pleasant one. To those who actually know me (not many) my heritage is derived from a background where my family have joked and referred to my resemblance hence my comments. I'm not bigotted, and quite frankly i feel that not only was the initial commenter that branded me 'rude' and a 'bigot' is clearly ignorant and insensitive. Any who have echoed these sentiments i can only attribute as following in the same footsteps.

Please let me give a further insight into my previous references. My niece made a comical reference to my similarity to herself, simple as that really. I didn't feel that this would be an issue as we both laughed (albeit that she has seen the trouble that the CPAP has caused so may have been something to placate me). I'm aware that some people (including myself) have been at their wits end with both the symptoms of the condition of OSA and the subsequent treatment of such can sometimes feel that there is nowhere left to turn.. ie, the treatment is as bad as the cure and hence can enter a certain degree of depression. This is only exacerbated if someone (like myself) is in employment but off sick without pay and the ability to support their family. It's a shame that some people on this forum don't recognize this for whatever reason and treat the entire situation with more discretion.

I do have a lot more to say however fail to see the point in communicating any further as, although i greatly appreciate the support offered here, feel personally attacked about something that i said without malice and based upon a family quip which wasn't even instigated by myself.

For myself, wearing a mask and having CPAP every night helps me physically but also detriments in other ways.. it's a trade off that we have to accept. I walk down the street, go to the supermarket and this morning was walking to work with people looking at me... a little curious why until i realised that the 'spot' on the bridge of my nose was bleeding and running down my face without my knowledge so i looked as if i'd been thumped. I also work in retail so the same happens albeit in a more confined space.. i know people are curious but what am i to do apart from feel like a bloody freak?! you don't know me and i don't know you so i can let my feelings known.... However at one point before treatment (whilst signed off work from the doctor and without any income to support my family) that i considered that it just wasn't worth bothering anymore. If it wasn't for the fact that i wouldn't want my daughter returning home from school and being traumatized for life i wouldn't be writing this but i hope that i'm better than that...

If you're all unhappy with me then fine, you're entitled to your own opinions.. i'm not a wimp however i'm unfortunately now a rather sensitive person that doesn't deal greatly with being insulted.. i work for a company who's owner has basically shouted in my face that i'm a moron and generally belittled me for the last 10 years.. however i plod on for the sake of our home and my family.

Maybe it's best i'm off.. sorry, i'm probs on a downer at the moment. Pain, health issues and the fact that i have other members of the family that are not long for this world, coupled with the fact that i have to be the 'strong one' as i'm the eldest.. 'life sucks' as they say eh lol

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