Newbie feeling very sad

[Purples]

So first off an apology - coming on a forum for the first time in floods of tears probably isn't the best introduction! But here I am at 3:30am doing exactly that....

Background: Been a very loud snorer for most of my adult life but never considered it a major problem as husband isn't bothered by the noise and I can just joke about it with friends. Didn't consider tiredness a big issue - just accepted I liked an early night (and early start), enjoyed a post-lunch snooze on weekends sometimes and accepted that if I was tired after lunch I could easily work through it. Never felt that I "suffered" with tiredness. Husband learned about sleep apnea at Uni and realised I wasn't breathing properly at night so encouraged me to get it checked out. Got diagnosed with sleep apnea recently and got my first APAP machine on Tuesday, which I have to take back in 2 weeks for an assessment and be given a CPAP machine with the right settings.

The consultant made me feel quite up-beat about getting CPAP therapy: Said I'd feel loads more awake/alert and that 95% of his patients are delighted they are on this treatment.

But right now I feel absolutely awful and tonight I just can't stop crying. I have thoughts and questions whizzing round my head so decided to get up and get them down "on paper" in the hope I can get some answers and thoughts from others in similar situations.

First off why am I sad? I'm only 43 and can't believe that I'm going to have to be hooked up to a machine every night for the rest of my life! I'm still so young!! The thought of having to travel with it (so bulky!), the sound of the machine annoying friends/family that I share a hotel room with when I go on holidays, the idea of wearing a face mask in warm weather, the annoyance of it waking me up, etc, etc.

Also I don't really understand why I have sleep apnea and whether or not I can do something about it. I have a BMI of 30.4 which puts me just into the Obese category. But I lost 21lbs about 18 months ago and have kept it off, so I really want to know if I lose more weight will that "fix" it? Or have I somehow damaged my body irreversibly by being overweight and now it's too late?! Nobody has explained that to me.

The consultant said I was a "normal" weight (confusing given that I am obese according to NHS guidelines) and that he would refer to me to an ENT specialist in case it is my tonsils or something like that as the cause, but I never asked him these questions at the time as I guess I was still digesting the diagnosis. I did used to get tonsillitis a lot and one tonsil has stayed huge after that and never reduced so I think that's why he thinks it might be the case. But I don't even have the ENT appointment through yet to find out.

Very frustrating to not know if this is something that can ever be fixed or not, so I don't know whether to focus my energies on weightloss to try to fix it or to try to accept that this is a forever thing.

Another thing is that the APAP machine is giving me gas / bloating - not something I've ever had before. Mildly uncomfortable - really just feels a bit odd to have a blown-up tummy and to be having flatulence which I never usually suffer from. I read that it's a common side-effect. Any advice on how to avoid it or make it any better?

Last thing - the APAP machine seems to "go crazy" occasionally - being a full strength puffing air at me but even if i hold the mask even tighter to my face to ensure a very perfect seal and breath normally or big breaths and am obviously awake (shouldn't the machine be able to tell this?) it keeps blowing air at full force, which I can't possibly sleep through. And the machine has woken me in the first place being at full force, disrupting my sleep. I'm able to sleep through it the rest of the time. When it's happened I've switched the machine off and back on again.

Anyway I realise this is a MASSIVE first post and again I apologise, but at least I've stopped crying while I've been writing so it's been helpful to write it all down even if nobody replies.

If you've read this far then thank you. If you're able to help with any advice or thoughts on my questions then in advance a massive thank you for taking the time out to do so.

Either way, wish you a good weekend.

Purples

[BlackSpinner]

I wish I had gotten my first machine at 43 - They gave me antihistamines.

The machine makes less noise then an air conditioner, much less noise, and certainly a hell of a lot less noise then you snoring so don't worry about friends and family complaining, they will probably be very, very happy.

About the machine "going full blast" you are doing the right thing in turning it off and back on. If it does it a lot, call for help. You mentioned NHS so you must be in the UK, they are more helpful there.

Once you get the whole therapy going well you will probably find losing weight a bit easier, sometimes the weight is caused by having apnea.

There are dozens of different causes for OSA, some are structural, some are weight based, some are muscle based and some are a combination of all of the above. One of the main causes is being human and able to speak and walk on 2 legs.

It is ok to mourn your old life. After 7 years I sometimes get upset that canoe camping is now not an easy possibility (even though my arthritis would be a bitch to deal with now - that is irrelevant when you are mourning) Grief is normal during a major life change.

[Goofproof]

I'm sad too, sad because I didn't find about Sleep Apnea until I was 60, and lucky I wasn't found on the side of the road in a wreak. Instead it took a massive heart attack to get my dia,10 years ago. It's not the best way to finish out your years, I don't advise it, still sad, but I have a better reason. You got off lucky, if you embrace your treatment, you to will get to be sad for many years.... Jim

[zoocrewphoto]

S
First off why am I sad? I'm only 43 and can't believe that I'm going to have to be hooked up to a machine every night for the rest of my life! I'm still so young!!

It really isn't that bad. Once you get some good treatment, you will feel better, and the idea of using it long term won't bother you anymore.

The thought of having to travel with it (so bulky!), the sound of the machine annoying friends/family that I share a hotel room with when I go on holidays, the idea of wearing a face mask in warm weather, the annoyance of it waking me up, etc, etc.

I can assure you that the machine is very quiet, far more quiet than your snoring. I travel with friends frequently, and they are amazed at how quiet my machine is. Much better than listening to me snore. No more getting yelled at during the night. I thought I would be embarrassed, but it is so much better than snoring, that it doesn't bother me to use in front of others.

Also I don't really understand why I have sleep apnea and whether or not I can do something about it. I have a BMI of 30.4 which puts me just into the Obese category. But I lost 21lbs about 18 months ago and have kept it off, so I really want to know if I lose more weight will that "fix" it? Or have I somehow damaged my body irreversibly by being overweight and now it's too late?! Nobody has explained that to me.

There are multiple causes for sleep apnea. Weight can be a cause, but is more likely a side effect of poor sleep. For most of us, it is anatomical. For example, I have a small jaw and crowded teeth. Classic build for sleep apnea. I even have a narrow windpipe to go with it, so it doesn't take much to block my airway. Losing weight might lesson the problem but will never totally eliminate it. It's kinda like bad eyesight. You can correct it with glasses, but nothing you do will totally fix it.

Another thing is that the APAP machine is giving me gas / bloating - not something I've ever had before. Mildly uncomfortable - really just feels a bit odd to have a blown-up tummy and to be having flatulence which I never usually suffer from. I read that it's a common side-effect. Any advice on how to avoid it or make it any better?

Some of this can be fixed with adjusting the pressure settings. Some of it maybe a newbie thing as we learn to use the machine. I had a lot of belching my first few weeks, and then it went away as I stopped swallowing the air.

Last thing - the APAP machine seems to "go crazy" occasionally - being a full strength puffing air at me but even if i hold the mask even tighter to my face to ensure a very perfect seal and breath normally or big breaths and am obviously awake (shouldn't the machine be able to tell this?) it keeps blowing air at full force, which I can't possibly sleep through. And the machine has woken me in the first place being at full force, disrupting my sleep. I'm able to sleep through it the rest of the time. When it's happened I've switched the machine off and back on again.


Purples

Tell us about your settings. And your machine and mask. We can help you to understand your settings, change them as needed, and get you feeling more comfortable about all this. The machine cannot tell if you are awake or asleep. It could be that the pressure is going up because the ramp is over. Or it could be responding to something and trying to correct it. There is free software, so once you have it going, we can look at the data and help you more.

[Julie]

The bloating (called 'aerophagia' here) can usually be greatly lessened...often just a matter of lowering your pressure a bit, and we can help you with that, but need to know the full name/model # of your machine, mask type and where your settings are now, plus whether or not you're using the ramp and at what setting. I think you may be using a Phillips Respironics machine (rather than a Resmed) and IF that's the case, make sure your humidifier's empty, then turn the machine over and look for a 'Ref" number on the bottom (of the machine, not the humidifier), plus whatever identifying names, wording, etc. are on the top. If you do have a Resmed though, all the ID info should be on the top or front of it.

[Purples]

Thanks v much for the replies so far. I'm so very grateful for you taking the time to respond and offering to advise further.

I do appreciate that an early age diagnosis could be a good thing, if in future my apnea would cause a health issue. However, I've never felt that I was excessively tired (perhaps that's all I know so don't know what "better" will feel like) and so right now I feel like I have a very annoying and forever treatment to something that wasn't bothersome in the first place. On top of which I've had to tell the DVLA (issuer of driving licences) so now if I don't have treatment they will take my licence away. That's why I'm feeling frustrated.

The machine is an Airsense 10 Autoset provided by the NHS (I'm in the UK). I was told that the machine sends information via wireless (I guess mobile data) back to the hospital and that they can change the settings from there if there is a problem. I've e-mailed them this morning to tell them about the "going full blast" issue, but I doubt they'll reply until Monday at the earliest. The only setting I'm aware I can change is the "ramp time" (currently set to auto). It doesn't have a humidifier. I was told I'd have this machine for 2 weeks then would be given a machine to keep, that has a humidifier, and that has been set to my own settings, having 'learned' from this machine. I'm slightly worried that what it's learning is that I need this "full blast" pressure and that's what I'm going to have to try to live with! Scary thought.

The mask is a ResMed AirFit F10.

Being able to see the data it's collecting and understanding why it's doing the horrible full blast thing would be great. Hopefully I've given you the info you need to help with that?

I don't know about my being overweight / obese being linked to the apnea. Not sure how lack of oxygen / sleep would affect weight? To lose the 21lbs I just cut back hugely on alcohol and made better food choices. I'm sure if I continued it strictly then I'd lose more weight. In fact this has incentivised me to do so, in case it helps.

I know I won't be looking at things very objectively or positively right now as I haven't had a good night's sleep for the last 4 nights and currently I can't imagine sleeping well with the machine on, especially when it's doing the "full blast" thing which I'm sure nobody could sleep through. That even woke my husband up with the air wooshing out the sides of the mask and it not stopping even when I pushed the mask on my face and breathed normally. I think you're all saying that's not normal and doesn't happen to you, right?

Does anyone have any experience of air travel with the machine? I have a long-haul holiday to Asia in November and am wondering if I will have to buy more luggage allowance for it or does medical equipment not count as hand luggage or hold luggage? I don't know if I would use it on the flight as it needs power, would be embarassing and I could do without it for the night that I'm on the plan surely?

Thanks in advance for any further help. Heart-felt thanks.

[Holden4th]

Hello Purples

A few points.

BMI is a seriously flawed way to diagnose obesity. It doesn't take into account that there are a variety of body types out there.

Feeling sad I suppose is a grief response. Life as you knew it is going to change forever. Also, depression is one factor that obstructive sleep apnoea causes in all of us. When your therapy starts to work then your whole attitude will change for the positive. That's what happened with me.

Finally, our bodies are wonderfully adaptable. If your therapy works for you (which it will) then you won't really know about it as it will be happening while you are unconcious. I wake up in the morning and all I have to do is take the mask off and I feel so much better because of the therapy it gave me.

It sounds as if you already have decided that you have to continue with therapy and that's 90% of the battle won.

Best wishes for your ongoing treatment

[Purples]

PS: Co-incidentally the letter from my consultant has arrived that contains some interesting info. It says that my AHI was 49.1 in the sleep study and I remember from the consultation that he said my oxygen levels were at 80% most of the night. Having just googled that I've found out that this is actually really bad apnea!! And has some quite alarming health risks. That's certainly an incentive to continue to try to make the treatment work.

Another question on my mind is whether or not I'm actually already managing to sleep through the therapy as I certainly did get some sleep in the nights since I've had the machine. Maybe the machine is just trialling different levels of "pushing" air at me (sorry, I don't know what that's called!) and learning that the very high one just makes the air come out the mask and wake me up till I switch it off. I'm really hoping that that's not what the level needs to be that I need to get used to.

I've just registered for ResMed "My Air" in the hope that it'll tell me this. It says it'll start to show me data after it's next used, now I've registered. Any experience of what this will show me? It would be great if it could tell me that I am actually getting some therapy and sleeping through it.

Again, thank you so much for the responses. It's really so kind of you to give up some of your time to help me. I am very grateful.

[Julie]

My Air is a big waste of time at best... download Sleepyhead, which most of us use. It's free, and covers much more than MA or other programs, plus was designed by a member here. Go to the 1st 'Tutorial' on the main pg here and look at the info (some of which is a bit out of date, but others here will fill in the gaps). You will download your SD card on Imgur.com and then leave a link to it in this thread.

One thing - don't confuse the severity of your apnea diagnosis (rather middling only, actually) with the level of pressure needed to keep your particular airway open... many people with a 'mild' diagnosis will need a high pressure, others with much higher results than yours only little low pressures...severity of diagnosis is not related to airway size or pressure settings.

And are you using the ramp and what are your pressure settings (not the ramp ones)? There are reasons for the questions - we can help optimize your Cpap life, but need more to go on.

[Purples]

http://imgur.com/aO5kj0L

http://imgur.com/LdwyMMM

I hope these two images are helpful in sharing my summary and last night's output.

[Julie]

Hi again... the second graph is the one to post (a tad larger to begin with as enlaring makes it difficult to read, and minus the calendar, which'll allow more info below it), but good for you for getting it so quickly)!

Things look pretty normal except that you might want to raise the low pressure of 4 to at least 6-7 as 4 is very hard to breathe at and is too low to address events that might occur at levels high enough so that the machine can't catch up in time... most of us have done that, actually going closer to 10 eventually in many cases, but for now just try 6-7 and see how it goes - leave the high at 20 as it's not the 'one' that matters. And if you post again at any time, come back to this thread so we can follow the story.

[sgcpapuser]

The discomfort you described is probably what all of us had gone through. There is a period of time to adapt and to discover what works for you.

The pressure, the gassy stomach, all these will pass once u have gotten used to the machine. Nowadays when I wake up, I took a look at the pressure on my APAP and it listed 12cm! I took 12cm quite comfortably! This is a pretty good achievement when think back, then I first started on cpap, once the machine titrates, to anything above 6cm, I would feel overwhelmed and stated coughing.

I'm 34 and diagnosed with servere OSA. I'm way younger than you and I will have more years to live with the cpap.

Frankly I'm quite thankful to be able to find a solution to this medical condition, and to be able to finally let my wife have a good night sleep.

OSA is a very common medical problem and loads of people are not on cpap because they are not diagnosed yet. So you are certainly not alone in this.

I live in Singapore and we are in the tropics. Weather is a constant humid 34C (93F). I'm able to adapt to cpap at even at our weather.

I have traveled to USA from Singapore (23 hrs by plane) and bringing a cpap is manageable.

I have a coworker who was diagnosed with OSA. However he had other medical conditions that made cpap not suitable for him. For him, the only treatment offered is surgery. That being said, the doctor also said he might need to redo the surgery on a regular basis. His condition is perhaps worse than us?

Hope my story is able to encourage u. Sometimes the best way to keep our spirits up is to think that there are others who are way way worse off than us?

[Purples]

Things look pretty normal except that you might want to raise the low pressure of 4 to at least 6-7 as 4 is very hard to breathe at and is too low to address events that might occur at levels high enough so that the machine can't catch up in time... most of us have done that, actually going closer to 10 eventually in many cases, but for now just try 6-7 and see how it goes - leave the high at 20 as it's not the 'one' that matters. And if you post again at any time, come back to this thread so we can follow the story.

Thanks for pointing me in the right direction so I could share my data. I meant to post last night's graphs, which are now here:
http://imgur.com/HBBwK2T

You'll see that twice in the night I had to stop & start the therapy because I awoke due to loud hissing leakage and VERY strong pressure from the machine. Even pushing the mask onto my face to ensure a seal whilst breathing normally / deeply didn't make the pressure go down. Isn't the machine supposed to adjust its pressure so once I'd created the seal and am breathing normally the pressure goes down?! I thought that was the point that it adjusted itself? It was this awakening that made me upset and give up at 3am and get up (and start posting on here).

As mentioned, I don't believe I can change any settings myself as this is the two-week trial period before I get my own machine. So I guess I have to wait for them to be in the office on Monday.

[Cardsfan]

I'll talk a little about travel. I travel very frequently. The laws in the US are probably different where you are. But,Here, the TSA (transportation safety administration) says that Cpaps
are medical equipment. They do NOT count against your luggage allowance and can not be separated from you. And the airport personnel seem very familiar with the cpap cases, and just
wave me on thru security. You just need to check what your local laws are. Here, the airlines have to abide by the TSA rules.
It is a little bit of time and effort to pack it up and set it up in the hotel. 5-10 minutes. Just be extra careful to pack ALL the parts for your machine, mask, hose, humidifier etc.
I would NOT let it stop me from traveling. And I would NOT leave home without it. I'd leave anything else at home before I left my machine at home.
Heck, I'm packing up today for a trip. And glad that I should feel rested with the treatment.

[Pugsy]

Isn't the machine supposed to adjust its pressure so once I'd created the seal and am breathing normally the pressure goes down?!

Yes, the pressure should and will reduce when you wake up and it's no longer trying to fight the apneas but the reduction isn't as quick as people think. It actually can take several minutes (depends on how high it went) for the pressure to come down and most people find it just takes too long and it's better to just reach over and turn the machine off and then right back on again. That way the reduction to the lower starting pressure is immediate.
These cpap/apap machines don't increase the pressure in the blink of an eye and they don't reduce the pressure in the blink of an eye either.