CPAPtalk.com

Posted: **Wed Jun 27, 2012 8:51 am**

jjjmac wrote:
I did not expect the mask to feel so tight, and it must not even be tight enough because I kept having air leakage problems last night.

First things first. Are you sure that you must use a full-face? Have you tried a nasal mask? They are MUCH easier to adapt to. And then I would recommend that you shop around for one of the masks that give great seal without hardly any headgear tension. Such as the ResMed Mirage ACTIVA LT or the Soft Gel.

Posted: **Wed Jun 27, 2012 8:53 am**

jjjmac
You would be better off starting your own thread with any questions that you have. Also please register as a member and add your equipment to your profile, that will make it so much easier for us to help you out. The thread you are using was a spammer who tried and did get our dander up with his stupidity. Unfortunately it is hard to know when someone is legitimately asking questions and needs help and someone that thinks this is a big game.
As I said start your own thread and we can go from there and get you going in the right directions....and WELCOME to the land of hoseheads.
Cheers
Nan

Posted: **Wed Jun 27, 2012 9:37 am**

DynoDad wrote: I hate the whole idea of CPAP, it's such an inelegant engineering solution to the problem by just blowing air into someone's face all night

Inelegant? INELEGANT? You call a therapy that uses nothing more than cost free air at a pressure at only about 1/10 the pressure you create when you suck a soda, controlled by an unbelievably sophisticated control system that monitors parameters at 25 times per second, and that prevents conditions that lead to premature death, inelegant?

I'm an engineer. I am awed by the elegance of such high technology delivering such an apparently simple solution with almost zero operating cost.

First of all, recognize and accept the fact you are being perfectly normal, and you are grieving the loss of a previously comfortable life. If you haven't already may I suggest you read the paper linked to in the announcement section about dealing with change.

Continue to express your frustrations. We will listen, although not always gently. Ask questions. We have answers. Why? Because nothing you have experienced is new. Someone here has dealt with every issue that upsets you now, and has found a way to resolve it, or live with it.

Good luck.

Posted: **Wed Jun 27, 2012 9:42 am**

jjjmac; your experience is not at all unusual.
Many have had to work around numerous problems to make this therapy work.
Some people have even had to fight phobias.
Many of us had nearly immediate health results, with 'feeling better' coming months later.
Some are still waiting, but never giving up. I salute these courageous souls.
The advice and support here has enabled many of us to continue, thrive and regain the joy in our lives.
Read the mask fit threads; your provider often does not know beans about fitting and adjusting masks.
It does NOT have to hurt!

Posted: **Wed Jun 27, 2012 9:49 am**

HA! It seems funny to me that this topic has gone on for so long and so much has been said-pro and con-and it's a topic started by a trollish spammer?
I gotta secret for ya! I hate it too but the alterative ( premature death) is not a very good option!

cheary!!

Posted: **Wed Jun 27, 2012 10:01 am**

I was lying in bed last night, a little early for me at 9:30pm, so thought I'd take a little nap without the mask. First was the collapsing airway, then the 'SNORK' sound of trapped air... a few minutes later some snoring, then more waking and SNORKING; more tossing/turning; more frustration. After fifteen minutes of this unpleasantness, I vividly recalled my bad old days (well, two months ago) when my nights were dominated by this sleep stealing disease. I put the mask on and was comfortable.

Posted: **Wed Jun 27, 2012 12:22 pm**

Hi, jjjmac. I'm very new to this too (about 10 days now, I think?) so I'm still figuring a lot of this out and having a lot of these same problems. But one little ray of hope for you: After the first few days of being deeply wary of the tubing, my designated nighttime-cuddling cat has decided the hose isn't a threat, and has returned to snuggling up next to me at bedtime. So yours may return too!

Posted: **Wed Jun 27, 2012 12:56 pm**

When I started,almost a year now one of our cats always sleep up in the corner of our bed on my side and like yours it stopped and that lasted about 2 weeks. She's back and so will yours just give her time to adjust to it. We've got three and only one sleeps on the bed.

Posted: **Wed Jun 27, 2012 8:44 pm**

I hate having to wear a bra for my big boobs to keep them in place.

According to the sources of this wikipedia article: "Brassiere"

Women sometimes wear bras because they believe they prevent their breasts from sagging, but there is no medical research to support that conclusion.

To the thread starter:

You are lucky, you could hate cpap PLUS feel none of the reliefs.

Posted: **Wed Jun 27, 2012 9:04 pm**

Sloop wrote:
jjjmac wrote:
I did not expect the mask to feel so tight, and it must not even be tight enough because I kept having air leakage problems last night.

First things first. Are you sure that you must use a full-face? Have you tried a nasal mask? They are MUCH easier to adapt to. And then I would recommend that you shop around for one of the masks that give great seal without hardly any headgear tension. Such as the ResMed Mirage ACTIVA LT or the Soft Gel.

Yeah, I'm sure. I tried some kind of nasal mask when I did the sleep study (they just had me put it on for like 5 minutes). I decided against it because I was uncomfortable with having the air rushing out of my mouth every time I opened my mouth - and I know that I'm a mouth breather. I have chronic rhinitis/post-nasal drip/allergies... so it seemed like it would be wise to start with a full face mask, even though the nasal mask was more appealing. :-/ I go back for my first follow-up appointment in early August, so that's probably my first chance to switch out the mask, but my insurance only covers a new mask every 6 months - so I'm also not sure how much choice I have in masks overall (they had 5 models to choose from - 2 full face and 3 nasal).

I didn't realize this was a troll-thread. sorry. I usually read through threads more thoroughly, but I was pretty distressed when I woke up this morning. Is there an admin who could/should deactivate or delete this thread?

Posted: **Thu Jun 28, 2012 1:44 am**

I've only had CPAP for two nights and haven't even been able to keep it on all night. The first night, I had it on about half the night and kept waking up every hour with the dryest mouth I've ever experienced. I have the full face mask (I know I'm a mouth breather) so I had to take it off every time just to take a sip of water. I tried it last night, and after 2 hours, I couldn't fall asleep (usually it only takes me 5 minutes) so I just took it off because I figured - after already losing 2 hours of what may have been poor quality sleep but would have been sleep nonetheless, it was doing me more harm than good. I know it takes some people a while to get used to it... I figure I'm one of those, so I'm going to stick it out and not focus on the negatives too much. But I did wake up this morning and google "I hate CPAP" and found your post.

I hate pretty much everything you've described too. I hate only being able to sleep in two positions (one side and back). I hate how it feels - I did not expect the mask to feel so tight, and it must not even be tight enough because I kept having air leakage problems last night. I hate not being able to turn over and snuggle with my boyfriend or cat (the cat also used to sleep on the corner of the bed by my head, but no more thanks to CPAP hose). I hate the dry mouth (mine does have a humidifier and turning it up does help, but not solve the problem). I also have to wear a retainer at night, which was attractive enough, but now this too? good grief, I feel like I'll never have sex again! The whole thing is dreadful. The only good thing is that it's a lot quieter than I thought it would be.

Right now the thought of having to wear this the rest of my life seems dreadful. I didn't read through all the posts on here -but it seemed like most people were telling you to suck it up and be grateful to be alive (and now they'll probably say the same thing to me). Well, I don't know about you, but my apnea wasn't near a point where I was really in danger of dying - I was just tired. And I'm still tired. And right now being tired seems worth not wearing the mask. ugh. I know that it could start causing more and more problems as time goes on, but the only problem I really had was being tired - and not to the extent where I was falling asleep while driving. My apnea score was 20, which they say is moderate, so maybe I'd be more grateful for the CPAP if I was in the severe range? I don't know. Again, I'm going to stick it out, but it's also helpful to vent a little to someone who knows what it's like.

I'm about 2 months into my treatment, and I had some of the problems you mentioned. I also use a full face mask due to being a mouth breather. I had dry mouth at first, and it is better now. I do occasionally have it again, but most nights I do not have it anymore. I had to adjust the settings on my humidifier until I found what worked well for me.

I do sleep in all my normal positions. I do toss and turn a lot less, mostly sleeping on my sides. So, I am more comfortable than before cpap, and my position and pillow do not affect my mask.

And my cat is totally able to snuggle with me. She did sleep a little further away for a couple weeks, but she is back to snuggling up against me. I wake up with my arm around her, and her paws around my arm. She just needed to get used to it.

Most of the problems do go away. You just have to work at each one, on its own, and it will get better. My main problem now is sleep fragmentation. For awhile, it was pretty noticeable, but it is getting better now. My wake-ups are fewer and shorter, and the last few nights, I have only had 1 bathroom trip per night. My normal, even before cpap, was 2-3 trips to the bathroom.

It does get better with time. I know that I spent a lot of time in the middle of the night, swearing at my mask when I couldn't get it to fit without leaking. I couldn't figure out why I could get it perfect one time, and then the next time, I would have to put it on and take it off 10 times or more to get a decent fit. I still don't know what I am doing differently, but I seem to be getting better at it. I usually get it right with the first or second try now.

Posted: **Thu Jun 28, 2012 1:53 pm**

The cat stopped sleeping with me when my snoring scared the bejeebers out of him.

Posted: **Fri Jun 29, 2012 2:18 am**

chunkyfrog wrote:The cat stopped sleeping with me when my snoring scared the bejeebers out of him.

I suspect my cats think I purr oddly.

I used to have a "therapy" cat. Really, I called him a nurse kitty since he was the one who would always be there when I was sick. It took me a while to figure out what was going on, but he would sniff and paw at my face during the night, probably when I was making odd noises. It used to bother me as he would fuss with my face and then leave once I woke up. I finally realized he was probably waking me before a big gasping event, and for that I was grateful. With those events, I sometimes inhaled acid reflux, and that would burn for hours.

He died a little over a year ago. It could be a coincidence, but my blood pressure and sleeping problems started getting worse last summer, and he died the first week of May. No more kitty nurse helping me out. My other cats are nice, but not smart enough to be a kitty nurse or therapy cat. Jay Jay sleeps out of reach, and is not very bright at all. Quinn is a bit smarter, and cuddles with me. But she has never woken me up for anything. Okay, once, but that was in a hotel after she spilled the dish of water in the bathroom. She ran across me, quite wet.

Posted: **Fri Jun 29, 2012 5:01 am**

You will also hate all of the cardio problems that go along with sleep apnea - B/P, afib etc,

Posted: **Tue Apr 14, 2015 11:54 pm**

Wow, most comments here have simply made this journey more unbearable! Try so much air forced into the gut that you are doubled over in pain all night and tell me how you just suck it up and deal with it! After two weeks of sucking it up doubled over in pain, getting severe acid reflux which was never an issue prior to the machine, no sleep and a doctor who simply says, "Well then you aren't a candidate for this treatment" and that's that I am appalled at the insensitivity of the comments here. Fortunately I am pursuing treatment with an oral appliance. It is slow going, it hurts, causes mio facial pain but at least allows me to get a few hours sleep. I get treating this disease is a necessity but I don't get lack of compassion. How do you find your comments to be helpful or supportive? You would be the last people I would call for help or suggestions. I am sincerely pleased many of you have found a way to deal with your machines and wish it was an answer for all cases of sleep apnea but it just isn't! To the original poster: give it time and see if you can manage, if not please keep looking for alternatives to help you. Don't give up and don't feel you are just a complainer if you need support or alternatives to improve your odds of coping with this miserable disease!

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