New kid on the block

People here that know me know that my situation is different, not regular OSA. But my experiences are similar enough that I can try to help others by sharing.

While I am almost positive I have OSA, my problem stemmed from an inability to breathe properly when laying down. I finally told my Neurologist who immediately referred me to a Pulmonologist. Before my first appointment and starting down this arduous road of sleep studies, cpap, bipap and ultimately the machine I'm on now, I had a dream that almost three years later, I still remember as if it was yesterday.

I was in a burning building and the smoke had almost suffocated me. The firemen brought me out and put an oxygen mask (covering nose and mouth) on my face and I inhaled deeply and with such relief. I was almost dead, but then I could breathe. I still shudder and shake a bit, thinking about how I felt after that first breath on that oxygen mask.

I used that dream, remembering how it made me feel, when I needed to get acclimated to the mask. Yes, the mask covers my nose & mouth, but there's AIR in that mask (and plenty of it) if I just BREATHE....

Even now, when I'm having more difficulty before I go to bed, the feeling of relief that comes through that mask...

It keeps us all alive.

Hi Angela, Sorry I mistakenly called you Abby in the other thread.

Sounds like you need a different boyfriend.

I forgot about all that extra stuff in SleepyHead. It is not needed for the software to do the calculations. I didn't bother with it on one of my user profiles and it makes zero difference in the data.
So just create the profile and don't do anything with the stuff you don't know about. None of it is critical.
Time zone probably should be done but the rest of it just skip over.
Once you finally get your reports you can then see what the setup is and add it to your profile if you wish but it isn't a deal breaker.

Won't hurt a thing to just skip on past it.

Welcome Abby,

I'm a newbie too, but (partly) past the first trauma of this. The first month and one half were hell. Can't say I'm in heaven now, but things have gotten better! I certainly know what you mean about embarassment. At first I put the mask on only after the lights were out so my husband wouldn't see it. And it goes deeper than vanity. Eventually realized that the problems were in my head, not his. Still haven't kissed him with it on, but we have found ways to snuggle and his touch is reassuring.

The claustrophobia, I can't help with much. I have found it comforting to put my hand in front of the exhaust. it feels good and is reassuing that there is plenty of air there! I will also echo the advice to loosen the straps a little. I go back and forth between a little too loose, which causes leaks, and a little too tight, which is uncomfortable.

You should also take heart that there are many masks out there. I have had trouble with sweating into the mask, and tried the sleepweaver cloth mask. I still sweat some, but the cloth is more comfortable that the silicon. More importantly, there are times when I wake up and am not even aware that I have anything on my face because it is so light. There are huge differences in faces and in mask preferences, so I think this will take continued experimentation. Right now I'm waiting for my 3-month replacement with insurance point in order to try another style.

I didn't read carefully enough to get why you need the chin strap, which seems to be adding to your trauma about the stuff on your face. If your leaks aren't bad on your data, you may not need it.

Try to be patient with yourself. And be stubborn about trying to make this work. I'm doing better and (amazingly) seem to have accepted the idea of being a hosehead. A couple of nights, I've even looked forward to going to sleep. A real change from sleeping because I was exhausted, with a dread of insomnia, as in my pre-pap days.

For the sleepyhead, there is a data card in your machine (looks like a S9?) If it is a S9, the card is just above the filter. You can get sleepyhead to read your data from the card.

PS Looks as if you are a real redhead. My screen name and avatar are in honor of my grandmother who was called Red Gert in the 1890s due to her long red hair.

AbbyNormal wrote:I feel like I'm a prisoner to this machine and I can't go anywhere now. How do you guys get around that??

There are always ways or options or choices. Some may not be ideal but we do have choices. We can choose to leave the machine at home...not the greatest of choices to make but it is a choice. It isn't handy to pack along a battery pack to go camping but people do it all the time because it is important to them. You know we can usually find a way to do something that we really want to do. The trick is to really want to do it. You aren't a prisoner unless you make yourself into one. You do have choices. Might not be the greatest of choices but there are choices.

It is unfortunate that you are struggling so much. Both with the whole idea and the actual treatment. If you had been one of the lucky people who take to this therapy quickly and easily and see marked improvement immediately...then your attitude about all of this would change and you wouldn't be fighting it so much. I know it is difficult to think that "I have to do this or else" when we aren't seeing anything but negatives. When I first started therapy my pressures weren't ideal and I didn't feel one tiny bit better and I welcomed the whole idea. It took me a couple of weeks to get the software (back then more involved because of special equipment needed) and begin to get an idea why things didn't seem to be improving.

I wish this therapy wasn't so difficult for some people but it just is.
When you have time you might read Robysue's struggles. She has had way more than her share.
http://adventures-in-hosehead-land.blog ... er_19.html

Pick your battles one at a time. If one of the battles is mask comfort...fight it first because without mask comfort none of the other battles stand a chance to be won. If one of the battles is staying asleep with this alien stuck on your face then fight that battle however best you can. Talk to your doctor about possible choices in making the adjustment. Sometimes it just takes time but sometimes we need extra help. The brain is a powerful drug. It can work for good and it can also work for bad.
It sometimes takes a lot of work to convince the brain that the alien on our face is a good alien.
So pick your fights. Don't try to win the whole war in one night. Just try to win a few battles at first.

AbbyNormal wrote:PS- One of the big "trauma" factors for me right now is my boyfriend and I were planning on taking a trip together. He can't sleep with me in the same room so we decided he needed to just go ahead and use his vacation days and travel while I work on sorting this mess out. No, getting two separate hotel rooms isn't an option right now, I'm looking for work so I can't afford it. I don't even know how you'd travel with this stuff. I mean, some of the places we've been looking at are camping sites. I feel like I'm a prisoner to this machine and I can't go anywhere now. How do you guys get around that??

There are at least three three solutions:

1. Limit travel to places with electricity, including hotel rooms and camp sites with hook-ups, and take a long extension cord with you. Most hotel rooms do have electrical outlets near the bed, but they may be well hidden and already occupied with superfluous stuff such as the hotel's alarm clock, so it is often easier to use a different outlet.

2. Batteries. There are a lot of threads discussing this, and you will need specifics for your machine.

3. Provent. It only works for some people, and is generally not as effective as XPAP, so check with your doctor and experiment at home first, but I found it very convenient for travel.

Camping can be whatever you define it as.
I picture the pampered Victorian 'hunter' on safari in Africa (old movie reference)
--with numerous bearers bringing along the fancy folding furniture, camp chest, fine china, and silver; and of course the French chef.
How are we any different? "Mistress, I have set out your breathing apparatus; and your favorite chocolate is next to it on the night stand."

Just wondering --- could he sleep with you in the same room if you are using your cpap? If it's the snoring that bothers him, then that should be better now if your therapy is working. It is one extra thing to carry the S9 briefcase on the plane (and don't ever check it!), but it's not a big deal. The airlines will let you take medical equipment as an extra carry on. (At least domestic ones; you'd need to check for foreign travel.) And I've had no trouble going through security.

As Pugsy said, you do have choices. As an example of what can be done, I took my S9 on a week's trip with a bicycle as the only mode of transport. We did stay in a B&B with electricity, but got there and back with all the stuff for a week and the machine in saddlebags and a backpack. I adapted by leaving the humidifier at home to reduce the weight (which meant getting a plain hose to fit the S9 outlet). Was I happy to be fussing with a machine and worrying about falling off the bicycle and damaging it? No. But that choice was much better than the alternative of sleeping without it. And certainly better than not taking the trip! In fact, dealing successfully with this sort of adversity can actually be empowering.

AbbyNormal wrote:Hi there! I'm Angela. I have only been a member for a few hours so forgive me if I'm doing this wrong. I figured the polite thing to do was to at least introduce myself. I'm in Houston, TX. I'm 41 if that matters to anybody. I've snored ever since I was very young, and my boyfriend has booted me to the guest bedroom because of it. Humiliation galore. I guess if I'm being honest, it's the only reason I'm willing to even be on the CPAP machine. Now that I'm on it, I of course feel like a circus freak show.

I don't feel like I can win. I'm just going into my second week of being on it, and so far I just can't get used to it. I'm claustrophobic so that's not helping matters any. I go to sleep with it on and I have been waking up with it off. According to my Snoring U app on my iPhone, I'm still snoring... so a chin strap has been ordered to complete this humiliation trifecta. Guys, I don't expect you to get that. You're probably all like, so what, it's no big deal?? Woman, thy name is vanity... yadda yadda. Maybe. But to me it IS a big deal.

So, I'll wrap this up and just say I'm having a horrible experience both with and without the CPAP. I don't feel like I can win no matter which direction I go, and I feel powerless to do anything about any of it. Unless of course I find a more understanding partner that perhaps also is stuck on this horrible machine... but I REALLY like this guy. *le sigh* Shoot me, I'm pretty sure I'm in hell. It's almost 1am. guess I better wrap up and go crawl in for another night of clawing my face off. Yippee. Thanks for listening to me whine. <3

PS- I have always tried to make the best of a crappy situation. I'm also a designer/seamstress. I'm debating making headgear that looks like Princess Leia buns or the Alien facesucker. Thoughts?? LOL

Wow ... you're a really nice looking woman and your boyfriend is an idiot for kicking you to the guest room. You can come stay with me and I'll treat ya like a princess. Same goes for you Gertrude ... I have a thing for redheaded and hose heads

In any case, you really need to make this therapy work and this forum is the right place to make that happen.

Best of luck and if you need to replace that so-called boyfriend, shoot me a PM and I'll see what I can do

It has been mentioned that CPAP is a good way to weed out the relationships that are not worth your time.