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URSYL153's Photo URSYL153 Posts: 295
7/5/09 8:28 P

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One of the suggestions my doc gave me was to go into the sleep lab during the day just to try on masks. This was a lab with many different types of masks though, more than they generally wanted to overwhelm a first time patient with during their first study.

I hope the original poster is still around and reading!

"What will you do once you know?" ~Inuit wisdom


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GRAMMACATHY's Photo GRAMMACATHY Posts: 25,962
6/30/09 12:45 A

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Ursyl,
Thanks for adding the quotes of the original poster into your posting. It is too bad we can't change the font to italics when we are quoting. And, yes the original poster was badly mislead by the tech. I suppose the tech had some products their clinic wanted to get rid of.




Cathy
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URSYL153's Photo URSYL153 Posts: 295
6/28/09 6:53 P

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I use the Teleflex Hybrid mask, and I like it very much. I can breathe through my mouth or nose. I can use the mask even when I have congestion from a cold or allergies. I even used my machine through a bout of pneumonia back in February and March.


As for this being told to the original poster, I'll be blunt. That tech was lying through her teeth. Blatantly and extremely unprofessionally in my not so humble opinion.

"Oh in response to some things everyone has mentioned... the tech told me the machine was on the lowest setting. Then she told me that the only type of masks anyone gets (even with the home machines) are identical to the one she was making me use."

There are dozens of different types of masks available. Some nasal only, some nasal pillow only (think nasal cannula for oxygen, but they seal), some full face, and some now such as I use: hybrids that go over the mouth with nasal pillows for the nose. A lab might not have the full selection, but a Good lab will at least have some of each type for the clients to try out.

"By what you've all said, it seems she may have lied to me. I had also, asked her about a bi-pap because I had heard about them and she said doctors no longer allow them."

She certainly did lie to you! Not only are there Bi-PAP machines, there are auto-PAPs and Flex and whatever other variations on the self-adjusting to the patient's breathing needs machines. Now it may be that they've moved beyond mere BPAP when a new machine is being issued, but the concept most certainly is still in use.

I hope you return to see our replies. Sorry I haven't been around for a long while, but I'm working at this healthy weight thing again, and this is the best tool I've got. Actually stayed within my calorie goals for the day today!

"What will you do once you know?" ~Inuit wisdom


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BRAVEONE92's Photo BRAVEONE92 SparkPoints: (0)
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6/26/09 10:53 P

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A few weeks ago, I read somewhere on this site that someone had a Hybrid mask. I asked if the person was happy with it or not. Don't know if I got an answer. However, I read about it on line, did lots of research and today I got my Hybrid. I don't know how it will work but I will report tomorrow if I am able to tolerate it. The one I have now is not real bad but there are things I do not like about it. I truly hope that I am able to use this one. I have never seen another quite like this one.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


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GRAMMACATHY's Photo GRAMMACATHY Posts: 25,962
6/26/09 2:15 P

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Yak,
Thanks for the info about the auto cpap. I had got my replacement machine before I found out about the auto. I wish I had the auto, because really the apneas do change as our weight and health change. It would be nice not to be sleeping in a wind tunnel if it is not necessary.

Eventually, I think all cpaps will automatically adjust as needed and will also send out a loud alarm if they cannot correct an apnea event.

Cathy
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YAKNERAK Posts: 4
6/24/09 10:36 P

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Becksdesign, be persistent! I did a take home sleep study, which wasn't a problem for me, but I had HUGE problems with straight CPAP because my pressure is set at 18 (most machines max out at 20)! I couldn't breathe in or out, got panicky and started crying which never helps! I was pretty upset because my whole family is CPAP users and no one had any trouble from the first night on, except me. :( I went to my Respiratory Therapist and long story short... they pretty much lobbied to my insurance company to get me an auto CPAP that adjusts to give you only the pressure you need at the time. I had to be "failure" on the straight CPAP before I could get an auto. Apparently it is not the doctors that resist auto machines, it is the insurance companies because they are more expensive.

Also, keep checking out different masks until you find the right one for you. Even though they may look similar, there are enough differences that can make a big difference. I had a problem with the nasal masks, switched to a full face mask(nose and mouth) had to even try a few of those before I found one that cups my chin (F&P FlexiFit 431) and have slept great ever since!

I wish you the best!

Karen

GRAMMACATHY's Photo GRAMMACATHY Posts: 25,962
6/23/09 6:55 P

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Beck,
Check out www.cpap.com You can write down the actual names and specifications of masks before you talk to your doc.

Cathy
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BECKSDESIGN's Photo BECKSDESIGN SparkPoints: (0)
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6/23/09 7:26 A

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Thank you everyone for such great advice.

I see my doc next week and plan on asking him and telling him a lot.

Oh in response to some things everyone has mentioned... the tech told me the machine was on the lowest setting. Then she told me that the only type of masks anyone gets (even with the home machines) are identical to the one she was making me use. By what you've all said, it seems she may have lied to me. I had also, asked her about a bi-pap because I had heard about them and she said doctors no longer allow them.

Again, I appreciate all the info... I have some fire power now when I go to my appointment.
Thanks everyone.

Quotes:
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“To be nobody but yourself--in a world which is doing its best, night and day, to make you everybody else-- means to fight the hardest battle which any human being can fight; and never stop fighting” - EE Cummings, poet


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GRAMMACATHY's Photo GRAMMACATHY Posts: 25,962
6/13/09 11:37 A

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This team really warms my heart. It is filled with kind and thoughtful people with many good strategies.

Just keep trying and telling the techs and doctors what you need. Good self advocacy will help you reach your goal of improved health.

PS: Has anyone used Xanax during a sleep study to help calm them? It works great for MRI's.

Edited by: GRAMMACATHY at: 6/13/2009 (11:40)
Cathy
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NANCIRELLI's Photo NANCIRELLI SparkPoints: (0)
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6/12/09 10:35 A

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I'm sorry you had a bad experience with your sleep study. I have been working with my tech (I'm blessed with a great tech) on getting the RIGHT mask. I've had mine for about 2 weeks and am on the 4th mask because I'm clausterphobic and sleep on my side. I had problems with the Nasal pillows the 2nd night because I couldn't breathe correctly. I'm still working on the whole mask thing to get the right one.

Talk to your doctor. Sleep centers are generally had a Medical Director who oversees it. Don't be afraid to ask to try a different mask. THere are smaller ones, I used a gel mask for a night and that seems to have helped a bit with feeling closed in. I wake up every night and that's generally when the clausterphobia hits..I just talk myself through it and then fall back to sleep.

We are here for you!!!

Nancy

Life is a journey and only YOU hold the map.

If you believe it, you can achieve.

Failure is not trying at all.
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DTILLER1147's Photo DTILLER1147 SparkPoints: (0)
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6/12/09 10:35 A

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Talk with your doc and see if he is willing to let you use a Bi-PAP instead of CPAP. Bi-PAP assist you on inhale and Exhale. Unfortunately all of them must go on your face some where. Talk with the tech and see if they will allow you to sit in a chair and put the mask on when it is NOT connected to the machine. Once you are more comfortable with it on your face then connect it.

DO NOT GIVE UP!! Keep trying.

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OVERWEIGHT's Photo OVERWEIGHT SparkPoints: (39,467)
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6/12/09 6:16 A

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I could not use the nasal pillows for that reason. If I opened my mouth it was someone chocking me. It was hard to get a breath. My pressure started out at 12 and went to 10 and now I am back to 12. Hang in there, It will get better. emoticon

Edited by: OVERWEIGHT at: 6/30/2009 (00:51)
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DEE107's Photo DEE107 SparkPoints: (1,571,942)
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6/11/09 10:56 P

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Polka mama gave you great advice, I couldnt have done it better.. I know what you mean you cant breathe, I am closaphobic and at times I get scared and dont feel the air I move the mask feel the air and I am fine... hugs

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BRAVEONE92's Photo BRAVEONE92 SparkPoints: (0)
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6/11/09 9:22 P

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Good advice Polkamama!

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


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DIAMONDROSE53's Photo DIAMONDROSE53 Posts: 1,548
6/11/09 7:33 P

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BECKSDESIGN;
Hi i too am a c-pap user, I'm sorry the tech didn't listen to you. You need to report that to the Dr. so he can take measures for that not to happen again. Especially since you asked her to tell you before you got going with all of it to begin with.

That can be a frightening experience the first time you have the machine on. Apparently she had the machine set really high if you couldn't breathe out at first. Make sure you tell the Dr. also about that.

i have been using the machine since feb 16, and love the machine. I haven't been able to use mine for the last 3 12/ weeks because I have a bad case of bronchitis and am looking forward to using the machine again.

Don't be afraid to say something because the Dr. expects his techs to treat the patients with respect and dignity, and the tech apparently didn't.
So give it another try and ask for another tech if you can.
Polkamama1

Judy Ann

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BECKSDESIGN's Photo BECKSDESIGN SparkPoints: (0)
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6/11/09 5:14 P

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Last night was my sleep study where they were going to try out the Cpap on me. I've been really nervous about this because I didn't handle the first one very well because of all the wires and such all over my head.
To explain, I was in a domestic violence relationship for about 8 years and prior to that abused as a kid.... so I can't stand anything or anyone touching my head.

Anyway, I get there, and get back to the room. The lady starts explaining the procedure to me. I let her know when she mentions the wires; she needs to tell me before she starts touching my face, so I don't go crazy. She gets rude with me over that request but we move on and she shows me the Cpap mask.... My already high anxiety jump about a 100 times higher. I think she could tell because she asked me if I wanted to try it before we got started to see if I could handle it.

So she left me with a running cpap machine and mask for about 10mins. It never did get attached to me, because I couldn't even handle holding it on myself firmly. I probably could have gotten to that step but I could breathe with it on the lowest setting. I could take a breath in, but it took everything I had to breathe out against the incoming air; my lungs felt over stretched from so much air coming in.

She told me to call my doctor and he can work with me to fix my problems then I could come back.
I left in tears.... I know I have to do this; my doc says I need to sleep right to lose weight and once I lose weight I should sleep right.

Is there another way? Has anyone else felt like the cpap was suffocating them rather than helping them breath; if so what did you do?

Quotes:
“Those who believe they can do something are probably right – and so are those who believe they can’t.”

“To be nobody but yourself--in a world which is doing its best, night and day, to make you everybody else-- means to fight the hardest battle which any human being can fight; and never stop fighting” - EE Cummings, poet


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