Diagnosed today, need a little encouragement

Hey Everyone,

Well, today i join your group. I got the results from my study (was done at home with a machine hooked on me). I scored 78 . Went to the therapist (forget her real professional name) and was given a cpap machine to try out. She showed me the buttons and whistles, pretty straightforward. She made me try it on ....and THEN I ALMOST PANICKED. omg...the wind was really strong and i freaked out a bit I really wasn't expecting the wind to be so strong. She says its probably because i openend my mouth.

She spoke about my score being so severe that if i dont go to my apointements (they are once a week for adjustements) she will call my dr and they will consider taking my lisence away (theory being that i could fall asleep while driving). I didnt appreciate the threat, but i do understand her concerns. That was my second surprise. Third, She mentionned that severe as i am i might actually need another machine, a bipap? Just great. We need to try this one first to see if it works. I'm willing to put in the effort, im just incredibly scared

I'll be honest i cried my whole way back home... and im teary eyes now... This does get better right?

Welcome,
Just a quick reply to let you know that you've come to the right place to get answers. There are some great people here that will help. I also am new to all this (only 2 weeks on my machine). My pressure are high so I know what you are talking about with the "wind". I actually find it refreshing knowing that I'm getting enough air while I sleep. My O2 levels were dipping into the 70's which was pretty scary to me. During my titration study, I failed the CPAP and BiPAP and went straight to a AutoSV machine. So although it can be scary at first, hang in there. Take it one night at a time. It takes time to get adjusted to it but I believe I can do it and so can you.

Like I've seen everyone else post to new people, go to the User Control Panel, profile, and edit your equipment in text mode. Then others will have a better idea of how to help you.

That's really crappy that they scared you and were so harsh. It takes a while to get used to wearing a mask, try just holding it up to your face for a couple seconds at a time during the day to get used to it. Then try putting it on with the head gear, but not fastening it down. The ramp is really a great feature so your pressure can start out low and then build up so it isn't a big shock all at once. Some people like the bipap function where the pressure decreases when you exhale, but I really don't like it. It feels like I keep trying to out-think the machine and I don't breathe normally.

Hang in there and just take baby steps, and you'll be fine!

Like the others, I'm sorry to hear that they used scare tactics to try to induce compliance. Then again, if they are monitoring you that tightly, it's better to know up front (but the delivery could have been better).

As others have said, it might take a bit of time to get used to the treatment, including the RT needing to adjust your settings, to make things more comfortable for you (and if he/she can't do it, there are some GREAT people in this forum who are very capable of helping).

When I got my CPAP I too was more than a little overwhelmed by the force of the air flow, not to mention learning to forcibly exhale against the pressure. To acclimate myself each evening, I would go to bed 1/2 hour or so early and read while using the CPAP. After 30 min or so, I became accustomed to the pressure to the point that I would doze off. For me, this worked like a charm and I was able to get 6+ hrs of sleep from night one (note: note everyone is this lucky). Others might be offer tricks that worked for them.

Good luck and welcome to the community.

Welcome! Agreed that using the machine in the daytime to get accustomed to it can be helpful. Strangely enough after awhile you'll wake up in the morning and it won't even feel like there is air flowing (you become so accustomed to it). It sounds like you might have a decent DME, as they pre-scheduled appointments for adjustments? Many of us don't get any follow up and have to initiate contact, and then have trouble getting help. The most common thing to need to go back to the DME for is a different mask, as they are quite individual and often take trial & error. But it sounds like they want to follow up with your data or settings or something? Although there is a steep learning curve and the adjustment period can be long for some folks, it does get better. The first week was pretty rough for me. For some its months. For some its no time at all. Best wishes.

Kaiser?

Getting used to the mask was quite a transition for me. It took several weeks to feel I could sleep uninterrupted. Also I began with a full face mask and eventually moved from a nasal mask to nasal pillows. Sticking with it before getting the pillows was the most difficult part. And once I settled into a rhythm with the present mask it's been relatively smooth sailing. I look forward to getting the mask on and sometimes feel I could handle a lot more pressure now. It's been one year since I began ADV use.

I have every confidence that you will adjust to nightly use. Just stick with it and ask for lots of help from your DME while you figure it out.

I'll add my vote to the "put the mask on an hour before bed" brigade.

When I started I hated it and panicked. However I found watching TV / reading for an hour with it on before bed meant that by the time I tried to sleep I didn't even notice I was wearing it.

2 months in and I never notice it at all. (Unless I get an itchy nose, then I get really angry and annoyed. It's either slip a finger under the mask to scratch, which makes a loud noise and annoys the wife, or have the faf of turning the machine off, removing the mask and scratching which is even worse.)

I find your therapist's behavior is appalling. Though I personally adapted to the nasal plugs easily I can imagine that for others it might be difficult.

I think that supportive information to assist is the appropriate behavior and resorting to threats when a patient might already be upset or nervous or ill at ease with the CPAP just is appalling.

My advice is to use the machine, the advice given by the others is good and should be helpful. Once it is established that you are using it and your drivers license is not at risk drop the therapist and the institution employing her and have a strong talk with your doctor that you don't appreciate being referred to an individual or institution that resorts to this behavior. If your doctor doesn't get the message get a new doctor also.

Also, I am not interested in people defending the therapist's behavior.

This should be a warning also to people that when they give you the paper test about sleepiness consider how your answers might jeopardize your driver's license and if you happen to have an accident how a lawyer might use it against you.

thank you so much everyone for the support!!!

the watching tv trick DEFENITLY speeded up the process of me being accustomed to my mask. first night to try it on was today ; I am so impressed. slept 4 hours, im wide awake and i feel like i have enough energy to start my day. Im not usually this refreshed after a full night sleep. What do normal people do with all their energy?? lol

I feel like singing the lego movie song ; everything is awesommme lol

Saya wrote:thank you so much everyone for the support!!!

the watching tv trick DEFENITLY speeded up the process of me being accustomed to my mask. first night to try it on was today ; I am so impressed. slept 4 hours, im wide awake and i feel like i have enough energy to start my day. Im not usually this refreshed after a full night sleep. What do normal people do with all their energy?? lol

I feel like singing the lego movie song ; everything is awesommme lol

I don't think "normal" people ever will ever think about their energy levels the way someone who has lost energy, and found it again does.

How does the song go, "Don't it always seem to go, that you don't know what you've got till it's gone..."