newly diagnosed, and a rough start

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
roobug91
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newly diagnosed, and a rough start

Post by roobug91 » Wed Jul 16, 2014 2:21 pm

I've been complaining to my primary doctor for a few years that I have been tired a lot. After trying shots of B-12, thyroid medication, and diets, he finally decides to send me in to get a sleep study done. I'm only 22, so I'm thinking they won't find anything significantly wrong with me and it will just be another thing I have that they don't know how to fix. Well, I show up at the sleep study and I get wired up, I hadn't taken a nap or anything that day, so I'm ready to go to bed. Then the tech comes in with one of those masks. Just looking at it makes me start to panic inside. He says I have to try it on for a few minutes and try the machine before I go to sleep. When he puts it on my face, I lose it. I start crying, and I can't control my breathing, and I'm yelling at him to take it off. I don't think I have ever felt a sense of panic like that before. It felt like the world was closing in on me, shrinking. So he takes it off, and gives me a minute to calm down. I'm finally able to breathe again, and he says I still have to try it. So, I do my best to calm myself and he puts the mask back on me. I lay there, clutching the only piece of home I brought with me, my favorite blanket. And I just could not relax. It was only five minutes but it felt like a lifetime. After he took the mask off again, I cried myself to sleep. I was leaving for vacation shortly after that so they squeezed in my follow up appointment just a few days before I left. The sleep doctor told me he was confused by my results. That it looked like I had a few significant apneas, but not enough to diagnose me. I felt relieved, and also a little smug because he kept saying I would have OSA because of my weight. So, he said to give him time to look over the raw data of my study, and if nothing turned up I would have to do another sleep study. He decided it would be a good idea to call me while I was on vacation in Canada (to see my sister), to tell me that it turns out I have moderate to severe sleep apnea. And I had to schedule an appointment for a PAP-NAPS. So I spent quite a bit of my vacation worrying about it, my first experience with a CPAP machine, if I would be able to actually use one, and if I could afford it. I show up at the office to get my PAP-NAPS done, and there is no one at the office. So I call them, and they tell me that they only to that test in their Alameda office, and here I am nowhere near there. Why couldn't they tell me that when I scheduled the appointment? Now I have to wait even longer to get all of these tests over with. And when I realized I was at the wrong office, I couldn't help but sit there and cry. I'm just so frustrated and tired. Not to mention, this has all gone down within the last month. Super fun right? Anyway, that's my story thus far.

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Bill44133
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Re: newly diagnosed, and a rough start

Post by Bill44133 » Wed Jul 16, 2014 2:32 pm

Welcome to the forum You are in a good place here.

When you have 15 minutes I would recommend you view this youtube video:
https://www.youtube.com/watch?v=-gie2dhqP2c

This video helped me to understand what is going on with me. I was able to show it to my family and friends to help them
understand what was going on.

Work out your problems here.

I wish you well

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Tatooed Lady
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Re: newly diagnosed, and a rough start

Post by Tatooed Lady » Wed Jul 16, 2014 2:35 pm

okay...so I don't get how you felt smug over the results that couldn't have given any real info, based on the fact that you weren't able to wear the mask?

Here's a thought...I never went IN for a study, just did the at home variety...but can't they use a smaller style mask for the study? Perhaps a nasal pillow? It would certainly be less intimidating. Also, did the tech strap it on TIGHTLY? If so, I can fully understand the panic. I didn't think I was claustrophobic til the DME tightened one on my face. My cheekbones hurt for days afterward, it was so tight! They should be relatively loose, just snug enough to create a good seal at pressure. Maybe you should start "prepping" yourself mentally...cover your mouth and nose with something similar to a mask. Maybe you can get one from your doctor to really get a better feel and comfort level.
OSA is serious, but it's one of the few "conditions" that *I* know of that can be treated medically without drugs. Very worthwhile to get comfortable with the tools. Good luck!

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kaiasgram
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Re: newly diagnosed, and a rough start

Post by kaiasgram » Wed Jul 16, 2014 5:27 pm

roo, welcome. I'm just up the road in Davis.

I totally got your "smug" comment, no problem.

You're going to be ok with this cpap thing. Part of what's hard in the beginning is not knowing what to expect and not feeling in control. My first experience with the mask was like yours -- RT puts the mask on me and fires up the machine to 10 cm immediately. PANIC. I bet if he had handed me the mask and let me be in control of holding it up to my face it would have been a different experience. Once home with a mask I chose it only took a little bit of time for me to get used to it.

So just know that as you learn more and once home with your cpap "stuff" your anxiety will likely start to go way down.

Ask lots of questions here, we can help.

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ShelaghDB
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Re: newly diagnosed, and a rough start

Post by ShelaghDB » Wed Jul 16, 2014 6:03 pm

Tatooed Lady
Here's a thought...I never went IN for a study, just did the at home variety...but can't they use a smaller style mask for the study? Perhaps a nasal pillow? It would certainly be less intimidating.
Here in Toronto, Canada at least the first sleep study is done without a mask at all. We never even tried one on the first time.
FROM that study you are supposed to be given a machine and a mask, and its set to a certain pressure and you are supposed to be using it for a week or two before your second sleep study and then take in your own mask and use it for the second one.

In my case it did not work out like that and I had to use their masks but they ONLY had FF masks and 14 of the 14 did not work as they had really high leakage for me so my sleep study test was never accurate.

In any event, if the 2 different places we have been to are indicative of the other sleep centres in Toronto, they don't carry a selection of mask and they will just tape then down to your head to the point of an awful headache if they leak..........it seems to me its best if you can bring your own, especially if it is working for you in those few weeks in-between the sessions

worrying about it, my first experience with a CPAP machine, if I would be able to actually use one, and if I could afford it.
Guessing you are from California?
In any event IF american and wherever you are from if you haven't discussed payment for the machines, let us know here if you have insurance or if you are on disability or welfare or whatever your situation might be and then someone can let you know if you even have to pay for it or not.
IF worse comes to worse there are ways to buy them online for a lot less than one thinks

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roobug91
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Re: newly diagnosed, and a rough start

Post by roobug91 » Thu Jul 17, 2014 6:00 pm

Just to clarify, my "smug" comment was reflecting towards the fact that it didn't look like I had OSA when he was first giving me the results from my study, and the doctor believed i would solely because I am overweight. Because I have had many doctors assume things about my health because of my weight.

the tech didn't even tighten the mask when he put it on me. He held it to my face and started putting the straps on, and that was the end of it. He didn't even turn it on yet. not until the second time I put it on.

Anyway, Yes I live in California. I have Blue Shield PPO insurance, and they haven't been exactly helpful to cost about anything. They did pay for most of the cost of the sleep study, but left a big chunk for me to pay still.

The whole process so far has been a huge shock to my system considering I am huge fan of continuity. I don't like to change anything, even something small like the dish soap I use at home.

It's frustrating, and my mom keeps complaining about how we don't have the money for this. But she's never been the supportive type anyway. I appreciate the support I'm getting here more than you know, since I know I'm not getting it at home.

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Bill44133
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Re: newly diagnosed, and a rough start

Post by Bill44133 » Thu Jul 17, 2014 6:20 pm

Sorry for your issues... The only thing that is for certain is change.. Change happens all the time..
You have to roll with the punches... Sounds like you need to find a Doctor you can trust.. Maybe one with better
bedside manner...

Get yourself taken care of...


I wish you well...

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Janknitz
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Re: newly diagnosed, and a rough start

Post by Janknitz » Thu Jul 17, 2014 6:42 pm

We all are with you in the sense that we know this is hard and upsetting and that you even need to grieve for yourself. Take some time and give yourself a pity party. It's perfectly OK.

But, then, it's time to put on your big girl panties and take care of this. You are only 22 with moderate to severe apnea already, and if you don't get a handle on this things will only continue to get worse, never better. Consider that apnea is something they KNOW how to fix and that the potential to finally get rid of the years of fatigue is there, it is totally worth the time and effort to get a handle on this. And consider this--maybe your weight is a result of the sleep apnea, not the other way around. If you get the apnea under control, it will be much easier to get your weight under control if you want to do that, too.

When you go to your PAP NAP you need to tell the sleep technician how upset the mask made you feel at the last appointment. The tech should show you what the mask choices are and let you have some input into which mask to try. You should handle the mask, look it over and see what it's all about. Look for the cushion which is supposed to mold to the shape of your face--it fills with air from the machine, so it may not look very "cushiony" when you first look at it. Look for the exhalation port--usually a bunch of holes in front of your nose where the exhaled air will come out. If it's a full face mask, there's a valve that lets you breathe room air when the machine is off, play with it and see how it works. Look at the straps and supports and see how it will go on. Ask the tech to turn on the air and place the opening of the mask against the palm of your hand to feel the air and how it sort of sucks onto the hand (if your hand is big enough to seal the opening). That's the air pressure filling the cushion and pushing it against your hand. Then slowly--with your own hand, hold the mask up to your face. You can move your head away any time. Press it to your face just hard enough to seal any leaks and just feel what that is like. Don't use the straps until you feel comfortable holding the mask yourself to your face. When the straps are on, you may feel like ripping the mask off. Promise yourself to take a deep breath, count to 10, and not rip it off until you've done that. See if you can go a little while longer. If you do rip it off, calm yourself down and try again. Failure is not an option!

The important thing is that you feel in control and you dictate how the mask will go on your face and stay there. If the tech is not patient with this, leave. Tell your doctor you need to do a home titration with a fully data capable machine and that way you will be in control. If that happens, we will help you through it.

Don't give up on yourself. At 22 you have your life in front of you. And you have a choice to make whether you want to continue to feel so lousy or if you want to feel better by facing the sleep apnea and treating it effectively. If you make the choice for health, we're here to help.
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roobug91
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Re: newly diagnosed, and a rough start

Post by roobug91 » Sun Jul 20, 2014 6:24 pm

Going in for my re-scheduled pap nap tomorrow. Any words of advice for this? I'm not really sure what to expect.

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englandsf
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Re: newly diagnosed, and a rough start

Post by englandsf » Mon Jul 21, 2014 1:17 pm

Tell them about your claustrophobia (that's what it is!) and ask for a nasal pillow set up instead.

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Janknitz
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Re: newly diagnosed, and a rough start

Post by Janknitz » Mon Jul 21, 2014 6:16 pm

Let us know how it went.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

roobug91
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Re: newly diagnosed, and a rough start

Post by roobug91 » Mon Jul 21, 2014 6:40 pm

The good news is, is that I think it went really well today. I had a completely different tech than last time, and he was really nice. Before I could even ask for it he suggested the nasal pillows. He had already been prepared and had read my file, and then asked me what I would feel most comfortable with. He didn't rush me and made sure I was doing okay. I'm really proud of myself, I didn't freak out! I was even able to fall asleep! All in all, I feel more comfortable and my experience today was very reassuring.

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Pesser
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Re: newly diagnosed, and a rough start

Post by Pesser » Mon Jul 21, 2014 6:48 pm

Bravo

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Janknitz
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Re: newly diagnosed, and a rough start

Post by Janknitz » Tue Jul 22, 2014 1:57 pm

Good to hear!
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

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englandsf
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Re: newly diagnosed, and a rough start

Post by englandsf » Wed Jul 23, 2014 11:45 am

Excellent, what kind did you get?

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