Sleep apnea and those on CPAP

[IntuneJune]

Four years ago I was diagnosed with sleep apnea and have been using a CPAP machine.

All my usual symptoms have exacerbated over.... Hmmmm ........ a year - more or less.

Last week I called and ordered new parts for the CPAP machine.... I have had four nights on the mask, tubing, chamber...... geezzz, I do feel a little better. I was not expecting any change.

We know that a good night's sleep helps our bodies to repair, restore.... (not that we ever get completely there) but I was pleasantly surprised to have a little less muscle pain and stiffness, a little more mental clarity --have a long way to go on that one.

I was told I was supposed to be replacing my mask every six months. If I knew this in the past, I had forgotten.

Thought I would put this info out for others who might have forgotten.

June

 

[kolowesi]

intunejune CPAP parts

Hi, June,

Great to see you over here

Medicare pays for a new mask every 3 months. Tubing as well if I remember. Headgear every 6 months. Unless it's different by state.

My med supply store calls me to ask if I want new stuff. Maybe yours would do that too? It generates money for them and reminds me.

I think it's very important because of mold and pathogens. I also put a few drops of eucalyptus oil in the water reservoir every other night. Then I have to clean it baking soda cause it leaves a film after a while. Probably not good as it scratches. How do you clean yours?

Good luck with this!

Kelly

 

[IntuneJune]

CPAP Info

Hi Kelly, thanks for the welcome. This place is so well organized and run, am enjoying learrning.

The company that issued the CPAP, a home care company, had not called until two weeks ago. The call triggered no memory on my part on the benefits of replacing parts although, I must say, I was "out to lunch" on that one. Geezzzz.

I will be more aware now. Maybe they will call again but I will keep tract of it.

I use the nasal pillow system and clean the pillows every day with warm water and detergent, Ivory dish detergent. I wash out the large hose once a week.

The first night I used the new equipment, the offgasing was obvious, so I let it run for awhile by itself.

Years ago, when I was first diagnosed, after I got the CPAP and used it for awhile, I went back for another sleep study to be sure the setting was correct.

That was years ago. Have you ever gone back for a "check up."

I am hoping I improve more. I could feel a little bit of difference after one night, then a little more after the second. Small changes equate to BIG deals in our lives.

June

 

[hvs]

Hey, guys. In the course of all this I got a diagnosis of OSA. But I cou;dn't tolerate the mask. I heard a story on NPR about how mouthguards are an alternative for folks like me. The mouthguard has worked great. I tolerate it just fine, and keeps me from wakening frequently. It keeps my lower jaw forward and a lovely path for air open. You get one from a certified dentist.

By the way, the OSA and the CFS are unrelated in me. Correcting the OSA didn't cure me, but its been beneficial in other ways.

 

[richvank]

CPAP machines wear out, too!

Hi, June and the group.

I have sleep apnea, too, (but not CFS) and I've been using a CPAP or an APAP machine for several years now.

What happened to me over the past few months was that my APAP machine was wearing out, and was gradually putting out less and less air. Because the change was gradual, I didn't notice it.

My blood pressure was running high, and I was getting higher hemoglobin and hematocrit values on blood tests. Finally, it dawned on me about a month and a half ago that the pump could be wearing out. I switched to my back-up CPAP machine, and could tell right away that the flow was much higher.

My blood blood pressure has gone back down to near the good range, and my hemoglobin has started to decrease toward normal, too.

So I just want to advise you to be alert to the possibility that your air pump could be putting out less than it should. The output can decrease slowly, so that it isn't easy to notice if you aren't paying attention.

Thanks for raising this issue.

Rich

 

[IntuneJune]

Rich VanK and CPAP

Thanks Rich!!

Son of a gun..... they wear out...... Well I guess we all do sooner or later.

If a CPAP is used every night, what is the expected life span of a machine?

The new hose fits a lot tighter than the old hose, but the old hose seemed tight enough (to me). Much more umph is needed to get the new one on.

Looked at blood work done in July and the H&H were well within normal limits as is my BP.

I have not had any continued improvement on subsequent mornings.... this is disappointing, I was hoping this was the WHOLE answer to my "slump" in energy, mental acuity, feeling "normal" (that's an CFS/ME normal---not a normal-normal).

Thanks for the information Rich, I am going to pursue this further.

On the immune issue, thank you for responding to my question and thank you for your offer of additional information.... I will get back to you shortly.

June

 

[MEG]

CPAP supplies

I was diagnosed with OSA about a year ago. I wear the nasal mask. Lincare, my DME (durable medical equipment) company keeps the supplies coming. New face mask insert (cushion) every month and new filters and tubing every 3 months. Since all the equipment is covered (in part) by Medicare, there are federal guidelines regarding replacement of equipment...you should all be having this equipment automatically sent to you. Actual machine replcement is every year, but if you have a problem, call your DME company and ask for a new one.

Hope this helps...

I am going to put a drop or two of euchylyptus (sp..ughhh) in my distilled water....not too much as it could interfere with the humidity outpput of the machine, but oh I love essentisal oils and always put them in humidifiers when my kids are sick!

 

[IntuneJune]

Marian Smartt and CPAP

OK obviously I need to be more on top of this.

Thanks!!

Fondly, June

 

[Dreambirdie]

how do I know if I have sleep apnea

I have MCS, so I could never do a sleep lab unless it was all eco-safe for me. HIGHLY unlikely.

I wake up gasping for air sometimes, especially in winter when the air is dried out from the heater. And then I feel short of breath all morning. If I take L-tryptophan for sleep, it's worse. It dries out my sinuses, and then the sedation plus dry sinus brings on the gasping for air problem.

Any way to solve this naturally. Maybe a humidifier would be good.

Any feedback would help. Thanks.

 

[MEG]

Gasping for air

Dreambirdie,
Ir worries me that you wake up gasping for air. That very likely could be OSA. Obstructive Sleep Apnea. Why you are gasping for air into the morning perplexes me.

A preliminary study can be done in your home. You simply wear (finger, earlobe) a small sensor that tracks your oxygen levels for one night. My husband had this done in the home...easy. Then you return it to a sleep doctor and they analyze the data. I am sure that if your oxygen saturation levels fell to dangerous levels at night, they could arrange a safe way to diagnose and treat you.

Sleep apnea can be a serious disease that needs to be treated. If left untreated, your heart can easily be damaged. Not meaning to scare you, but some sort of preliminary work-up seems in order. Just speak to your primary care doctor about it, to start.

Sweet dreams!

 

[richvank]

Hi, dreambirdie.

I would just like to endorse what Marian wrote.
Using a recording pulse oximeter is a good way to diagnose obstructive sleep apnea. I believe that is the way Kaiser Permanente does it. It's a lot cheaper for them than a sleep study in a sleep lab, and it does well on diagnosing the obstructive type of sleep apnea.

Just to emphasize the importance, and again, I don't mean to scare you either, but one thing the obstructive sleep apnea can do is raise the blood pressure. I have a friend who had OSA and his doctor didn't catch it. He just kept giving him pills for his high blood pressure. He eventually had a stroke. After talking to me, he went to the same pulmonologist that I went to, and he was diagnosed with sleep apnea. I loaned him my spare machine while he was waiting for his to come, and he felt a whole lot better after using it the first night. Fortunately, he didn't end up with a lot of permanent damage from the stroke.

So anyway, I too think it is a big deal and that you should pursue it.

Best regards,

Rich

 

[Dreambirdie]

Thanks Rich and Marian, for your input.

The only problem is that I have never had a doctor. I do know one, who is holistic, and I have a naturopath as well, so maybe I can ask them about this. Also, there is an in home do-it-yourself test they sell called the sleep strip. Is this any good?--- http://www.sleepstrip.ca/

My situation is always worse in winter, when the air gets really dry from my heater. I wake up with really dry sinuses, struggling to breathe. I bought a humidifier today to see if that might help.

I don't think I've ever had high b.p. Usually the very opposite, as low as 85/50. I've never tried to take it in the middle of the night, but that would be interesting to see.

 

[MEG]

Not Comprehensive

Dreambirdie,
The specialty of Sleep Medicine is just "catching on" so to speak.It is tied into cardiology, endocrinology and neurology. The product in the link you provided is very incomplete and basic from my point of view. When I got diagnosed and saw an actual doctor with a specialty in sleep medicine I was blown away. There are so many parameters they check, so many variables, so much data gathered. Maybe go to WEBMD Sleep Apnea to get a fuller picture. Bottom line, I wouldn't spend $59.00 on that device. And I do think you may have OSA.

 

[Dreambirdie]

Hi Marian--

I moved my bed to my living room, and so far so good. The main heat works in here, so I don't have to use the space heater, which keeps my sinuses happy (not dried out), and hence... I have no air gasping. So I think that the cause is mostly EXTERNALLY CAUSED and not OSA.

I spoke to my holistic doctor yesterday about this, and he said he doubts that it is sleep apnea. He was an ER doctor for 12 years, and for the past 15 has worked using mostly alternative methods (TCM, Ayurveda, functional medicine, etc.) He suggested that I use a netti pot before bed, and then rub sesame oil inside my nostrils, which I did last night. I think it may have helped some of my sinus inflammation.

For now, I am happily crashed in my living room, and have adopted the wait and see attitude. If the problem re-emerges, then I will pursue it more.

Thanks for your helpful input on this.

 

[Gknee]

I have MCS, so I could never do a sleep lab unless it was all eco-safe for me. HIGHLY unlikely.

I wake up gasping for air sometimes, especially in winter when the air is dried out from the heater. And then I feel short of breath all morning. If I take L-tryptophan for sleep, it's worse. It dries out my sinuses, and then the sedation plus dry sinus brings on the gasping for air problem.

Any way to solve this naturally. Maybe a humidifier would be good.

Any feedback would help. Thanks.

I have been using a CPAP for about a year now. I too was gasping for air. I did find out I had hypopnea during my sleep study. It's somewhat like apnea but instead of stopping breathing my breathing slows until I don't have enough oxygen then I gasp for air. It's somewhat the same. With my CPAP it keeps me breathing and not gasping for more air.

Only a sleep study can tell if it's apnea or hypopnea either a CPAP will help you sleep better. We all know sleep makes us feel better.