Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-21-2007, 10:50 PM #1
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Default Question about cpep machine.

When I mentioned I was getting a cpap machine someone on here said they were on one. I can't remember who.

I am getting mine next week. I wanted to ask which oxygen mask do you think is best. I tried the one that goes in your nose like an oxygen tube and then they switched me over to the old time mask because the other one was hurting my nose.

I know from what they said they make several different ones. I want to be sure when they come next week I have an ideal on what might be the best mask.

I know not sleeping has to do with RSD but does breathing problems go with it? I thought about this today and was wondering if others have breathing problems.

Thanks,
Ada
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Old 07-21-2007, 10:58 PM #2
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Hi Ada! I believe I told ya my husband was on the machine. They put him on the mask. He could not get used to it, but if he doesn't use the thing(Free from uncle Sam ;0) ) Then I use it! LOL.. anyway, he used his for all of 4 days, and just quit!! Good luck! The mask ajusts to your comfort you need! Love, Desi
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Old 07-21-2007, 11:00 PM #3
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Oh.. forgot to ask Ada.. Is yours pure oxygen?? Bill's was air.. and ohhhhhhhhhhhhhhh.. feels so good!! Love, Desi
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Old 07-22-2007, 12:07 AM #4
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Default Hi Desi,

Mine will be Oxygen.

What you said about your husband is what I am worried about. My best friend is 70 and she can't get use to hers. The night they did the sleep test everytime the machine made that noise when I breathed in my body jerked everytime. First I started out with one that fastens around your head and goes into you nose and it hurt my nose as I said but even with the mask I jerked everytime. I am worried about getting use to it.

Thanks for the help.
Ada
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Old 07-22-2007, 02:04 AM #5
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Attention Attention Ada!!!

Quote:
Originally Posted by dreambeliever128 View Post
Mine will be Oxygen.

What you said about your husband is what I am worried about. My best friend is 70 and she can't get use to hers. The night they did the sleep test everytime the machine made that noise when I breathed in my body jerked everytime. First I started out with one that fastens around your head and goes into you nose and it hurt my nose as I said but even with the mask I jerked everytime. I am worried about getting use to it.

Thanks for the help.
Ada
Ada,
Please inform your doctor about this jerking everytime. My hubby just said I don't feel comfortable with this! Ada, you need to wear this mask with the oxygen, as they did perform the "sleep apnea" test on you, and this is a huge thing!! please don't give up .. you will get used to it!! my hubby is stubborn, like I told ya many times in my PM to ya hun. This is nothing to play around with at all. Bill stops breathing and when he does, I have to hit him so hard.. he then leaves out a huge breath! Am I trying to scare ya, Ada.. bet your boots I am(In a nice way, of course) But, please do excatly what your dr. who did the test on you says!! please let me know how go's?? what about the oxygen in your nose?? maybe that won't be as bad as a mask?? how does that hurt your nose? Good golly, I wish my DH would use his, as I am tired of nudging, hitting him to make his breathing start again! Love and to you sweet Ada! Love, Desi
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Old 07-22-2007, 06:55 AM #6
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Hello Ada,

I use a Fischer&Paykel CPAP machine, please feel free to ask me anything you want about it's use
Bye for now
Tayla
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Old 07-22-2007, 09:22 AM #7
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Default Hi Desi,

I will try my best to get use to it. Bill use to check me all of the time to make sure I was alive too.

I had this test 4 years ago and the man who did it said I had sleep apnea and the Dr. got mad because he told me and wouldn't ok it. I thought that and when I saw the Immunologist that wanted the test this time he said sometimes Drs have big heads and don't like being told what to do so he let me do without.

The tubes are like the ones that are on oxygen machines and the thing holds it around your head so it pulls up on it and it was hurting the inside of my nose.

Tayla, what kind of mask do you use? I know they make several. I tried to look them up on the web but all I get it sales advertisements.

Desi, your Bill sounds just like mine. We had to fight him to get him to go to Drs. and you couldn't get him to stay in a hospital. That's why my PCP made him come in every week for the last year or so to make sure he was ok. He saw him every 2 weeks to a month the last 3 years because of his health.

I tried to get him to go to another heart Dr. He had already seen 4 and none of them were any good but I finally found one that I thought might help him and he said no more. I know what you are going through. I told someone the other day it must be those men named Bill. They were telling me a simular story about their man. LOL

Ada
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Old 07-23-2007, 01:19 AM #8
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Hi Ada,

It is called a FlexiFit HC 407 nasal mask.
It is now very comfortable and lighweight although initially it felt like I had a brick on my face and that I was choking.
The machine is whisper quiet, in fact you'd be hard pressed hearing the motor at all, it certainly doesn't keep anyone awake.
I must admit the discomfort is well worth it to have a sleep (what little sleep there is) that is not interrupted by seizures caused by oxygen sats of 50-70%.
Bye for now and take care
Tayla
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Old 07-23-2007, 08:57 AM #9
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Default Thanks Tayla,

Does not having enough oxygen cause the jerking or seizures as you call it?

I hope to have it today or tomorrow. I have had such bad nights here lately. I am getting worse. Last night was awlful.

I have to call another company this morning and I am hoping to get them out soon. The one company that has my order I have decided not to go with. Bill had his oxygen machine with them and when he passed his machine was not working right. They came out twice and didn't get it fixed. I thought they'd bring him a different one but they didn't.

I am hoping that I just fought the mask that night.

Ada
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Old 07-24-2007, 02:47 AM #10
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Hi Ada,

I have developed seizures since my CRPS has become so widespread and even though my EEG shows changes it seems that I am more likely to fit when my Oxygen levels are low. I have fitted twice in the operating room when they were intubating me.
I guess this is something that differs from person to person but there are many medical reasons that hypoxia will cause seizures.
Getting used to the mask did take me a couple of weeks Ada. I find it hard to be awake for any length of time with it on as it does not seem natural to have oxygen forced into you like that so now I wait until I am absolutley sure that I am about to fall off to sleep (even if it isn't for long) before I put the mask on.
I hope that you will become accustomed to it as I have and that you will feel so much better from the more refreshing sleep you will have.
Wishing you luck
tayla
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