Well that didn't work!

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Already with moderate COPD (53% lung fiunction) the Dr had me tested for Sleep Apnea. It's three years since this was muted and I'm really fed up of constant tiredness so was looking forward to this being identified and finding a solution.

​How wrong I was! Yes, "moderate OSA" disagnosed BUT I hadn't anticipated the risk to my driving licence, the CPAP machine giving me daily nose bleeds and the fact that I'm just as tired with the CPAP as I was before it!

​Sorry, sounding like a real whinger but all I can say is - be careful what you wish for, the grass really isn't any greener!

 

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14 Replies

  • Posted

    Hello

    I too have OSA and use a CPAP machine.

    It sounds as though you are frustrated with this treatment and that is understandable.

    The nose bleeds can be caused with the dryness of the air. Have you tried some nasal lubricant? There is a brand called Secaris which is good, I am sure there must be others...do not use petroleum jelly as it is an oil based product , seek out a lubricant that is suitable...your pharmacy could help with this.

    The other very helpful effort is to utilize humidity. Not being certain of your machines capabilities, but the one I use has a humidifier that can be used and I find this very helpful.

    In respect to the fatigue, it is difficult to know what percentage is caused by the COPD and what is related to the OSA..perhaps once your nose is doing better and the mask is more comfortable you may sleep better...the other consideration is returning to your respiratory person to see if some adjustments are needed  in the settings...this is not uncommon as adjustments are frequently necessary in the beginning or over time.

    Ensure you are using your medications as prescribed and using your inhalers correctly as this is very important for your COPD.

    Also, getting regular exercise is one of the most important things to do to slow the progression of the COPD...the more we exercise the stronger we will be and the less tired...because having more tolerance and more muscle lessens the work on our heart and lungs.

    Maybe these suggestions will help.

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  • Posted

    I also wanted to mention that perhaps a change in your mask would be a consideration.

    Nasal pillows can be more irritating and drying for some,while a nasal mask may be more comfortable and a newer one that sits outside the nose, rather than inside the nostrils would be less invasive.

    This is something else the repiratory person who sells the machines and equipment would be able to help you with. Seeing as we are supposed to replace our masks every six months or so.

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  • Posted

    Just a note to lill, regarding using a humidifier....I spoke to my Pulmonary specialist about putting a humidifier on our furnace OR using a room humidifier (we live in Colorado, USA).  I was told by my Pulmonary specialist that they really don't recommend humidifiers; however, if you do use one.....first of all, a stand alone humidifier in a room will ONLY humidify that room.  Also, I was told if you DO use a humidifier, you need to use distilled water, empty it, clean the humidifier and refill will distilled water EVERY day.  This is because a humidifier will collect bacteria which will then disperse in to the air.  Just a thought.

     

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    • Posted

      Hello Sandy!

      The humidifier I was speaking of is one which comes on some CPAP machines..for instance the resmed s9...has one that can be removed from the machine or left on..it can be set to come on or, you can leave it attached and not use it(confusing I know..basically it can be left on or taken off, regardless if it is attached , you do not necessarily have to have it working)

      This humidifies the air while your CPAP is working. And yes, it uses distilled water. Very simple to utilize, and as usual, easy cleaning of your mask, tubing and the water chamber is weekly.

      It makes a great difference. If you do some video research for instance you can see how they humidify the air...

      The tubing that I have with my CPAP can be used as aheated tube, so that in cooller rooms it keeps the tubing warm, while the humidifying water is also warmed..it works very well.

      Hope I explained well enough..confused

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    • Posted

      PS Sandy

      I agree whole home or those large stand alone humidifiers are  not great for more than one reason.

      During the winter months when it is drier in the home, I have a small table top unit that works marvellously and is very easy to care for.

      I keep it near where I sit.

      However, COPDers can have increased breathing difficulties sometimes if humidity is too high, just to be aware. I find this true for me...however when the levels drop enough as to be uncomfortable on the eyes and the breathing, it is nice to add some moisture into the air.

      Hope this helps smile

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  • Posted

    Thanks lill!  That's interesting information.  My husband has sleep apnea and is on a CPAP during the night.  We try to stay positive about our health situations and for a little bit of humor......I am on oxygen all night and he is on his CPAP.  When he was first diagnosed with sleep apnea, he said "I hope we don't get our hoses mixed up!"  Of course, there is no chance of that happening; however, like I say, we try to be positive every day.
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    • Posted

      Hahha! Sandy...comical story for sure!

      And I do agree.

      Being diligent to staying positive as much as possible is for certain and benefit in many ways!

      And never may your hoses be crossed...cheesygrin

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  • Posted

    sorry people, my head is not in a good place right now. i guess i shouldnt have posted while in a dark place.

    very sorry.

    ​ill leave it a couple of days and see how tnings pan out - thank you for your comments

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    • Posted

      Hi lill, sorry for my earlier post, maybe I should have waited before posting  [neutral] .

      I've just completed a week’s trial using an auto CPAP. I followed your advice and bought Gelesitin nasal spray (sesame oil based) which is helping (Thank you!).

      Took the auto CPAP back and, once results were sorted they said that if I reported to DVLA (UK driving licence centre) the hospital would not be able to confirm that it is "controlled" so I would lose my licence! They gave me a manual (pre-set) manual CPAP and, at my request, supplied a face mask (as well as the nasal mask) to try.

      That was two days ago, the nasal spray has helped and the face mask has allowed me to sleep thought out the night (waking only once each night) and my O2 levels are fine! I am beginning to feel strangely human at last!

      Finally I am in a better place – many thanks for your helpful comments and lack of pressure so I didn’t feel that I HAD to reply immediately.

      I know there is a long way to go but I start to feel that my licence is safer now, I'm more awake and 2016 is beginning to look a whole lot better than it did a few days back!

      Much appreciated.

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    • Posted

      Good Day y-not!

      Well isn't this just the best news?!!!

      So very happy for you, over time you will feel even more improved.

      As an alternative to the nose spray, there are also nasal gels that are great as well (they come in a tube and can be used by anyone, for instance people who work in dusty environments to prevent dust particles being inhaled etc).

      Don't be afraid to change your face masks as every user adjusts to different ones differently.

      Sincerely happy and thankyou very much for the update!

      Lill  smile

       

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  • Posted

    What a difference a week makes!

    ​Last Tuesday I was tired, depressed and at risk of losing my driving licence due to the OSA.

    ​Because I asked for a face mask (rather than nasal mask) my night breathiung has improved, I wake only once a night (before it was so bad that I fully awoke aroufn 4 times every night), I'm sleeping soundly for 7 - 8 hours and waking refreshed - I'd forgotten how good it feels to be awake!

    ​It's only now that I realise how bad it had become, how it affected my decision making, food intake, ability to remian awake and active - life changing!

    ​Looking back all I can say is, if you are feeling down just remember how quickly things cna change (and often do).

    ​Can I thank you all for the kind comments over the last week and wish you all the best for 2016!

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