Sorry, I rarely post but just need some advice, please.
Had COPD for 4 years, currently on steroids & antibiotics for a chest infection. Because of sleep issues and on advice of the GP I have been referred for sleep apnoea testing.
While waiting (and because I'm getting some real bad nights) I stuck my oximeter on for a few nights and was a bit concerned to find that whilst my oxygen levels are in the low 90's most of the night they drop to the low 80's/high 70's for around 45 minutes usually twice per night (6.7 hours sleep ave).
I've purchased a CPAP machine and used it last night for the first time. Set on "middle positions" for most settings, felt like I slept better, not snoozed this afternoon (even while watching a film) and I actually feel slightly alive ... for the first time in a long time!
Am I wrong to use the CPAP undiagnosed? What are the risks? Are my stats from the oximeter normal - everything I read suggests that such low levels for so long could be doing damage to organs?
Really confused - I have a gadget which makes me feel better yet, logic suggests, there must be a reason why they are normally prescribed?
Any advice would be appreciated.
Thanks
Tony (a very backward ynot)
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Hi tony, this is a hard one to answer, ( for me anyway ) if it's helped u sleep then that's great, I'm not sure if ur suppose to have one without been diagnosed and recommended though , but it also can't be that harmful if u can just buy one that's not on prescription either. Sorry this is no help to ur question u posted, but hopefully somebody will pop on that can. Take care xx Sonia xx
I can't buy the CPAP machine fro a retailer without a letter from Dr; I purchased privately from a seller on the Internet (but a proper, safe model that I researched first)
Anything below 88% will damage your organs Tony so that is very concerning. I have no experience of sleep apnoea but I have heard that it can lower your O2 levels.
You don't say if your O2 levels are better with the Cpap machine but your experience suggests it may be the right solution since your symptoms are so much improved. It must be doing something good to you for you to feel so much better.
BUT you must get a diagnosis and proper advice about what treatment you need.
Is there anyone you could contact to ask in the meantime while you are waiting for your tests?
Maybe someone with sleep apnoea will come by and give you better answers than I can. All the best
Hi And thanks for the reply. Last night was the first "trial" with the CPAP machine. My plan for tonight is to use the SPo2 meter in conjunction with the CPAP and find out the effects.
I was told a couple of years ago that I don't have sleep apnoea because the symptoms of that are lots of rapid drops followed by rapid returns to "normal" whereas mine are just a couple of rapid drops but they last for close to an hour each.
I'm hopeful of a letter from the hospital in the next week or two with a date (the alternative being to go private as my company pay for this option - I might consider that if it's going to take months)
If I were you Tony, Id telephone outpatients/hospital and see where you are on the waiting list. Your O2 experience does seem different to the usual sleep apnoea drops.
Tony I can only add my voice to those above. I was diagnosed with Sleep Apnea a good number of years ago. My GP referred me to the hospital. The hospital gave me a wrist watch type gadget with a wire going to a cover on one finger tip. I was told to put it on and press Start when I settled down and to press stop and take it off when I got up.
I was then seen by a consultant and the info from the "watch" was downloaded onto his PC. He then conducted a range
of tests similar to copd type tests. They sent me into the next room to talk with his staff. They explained the diagnosis and showed me a CPAP machine and a couple of different masks. They then programmed the chip inside the CPAP machine. Then assisted me to put the mask on and start the machine and how to use it.
I urge you to go and get a machine that is set to your needs before you do yourself any possible damage.
Since diagnosis 4 years ago (and being a bit of a geek) I invested (?) in an oximeter with built-in memory (to do the same as the gadget the Dr provided you) that downloads all the data to a PC the next morning and provides an analysis sheet. Also an upper-arm blood pressure monitor and in-the-ear thermometer (both connect to the PC for data capture/storage and analysis).
This means that I have 4 years of data which allows me to see trends, note subtle temperature changes (which every time indicate chest infections earlier that waiting for the symptoms) and take away the "I'm sure it was X" because I have a shocking memory.
Oddly, writing this down I realise that I don't have the lung function peak flow meter - guess I've never thought to add that to the arsenal!
Price seems to have gone up a bit (thought I paid about £35).
Given how these work, any inaccuracies will be offset by the constant use - we all have different levels so, for me, the important thing is seeing if my "normal" is changing rather than is it really 97% or actually 96%.
Build quality of electronics is so good that, for the price it's a no-brainier for me nod, working full time it avoids me wasting time or trying to be a martyr.
Thank you for your kind replies; time for an update.
On the night the clocks went back I slept for almost 2 hours longer than normal!
SPo2 lows over the previous three nights were: 83: 76: 83 then last night 93.3
Average pulse rate: 85.7: 78.3: 82.9: and last night 71.0
Events below 88%: 8: 15: 12: and last night zero.
Now, I'm a million miles away from being a Dr and I agree with the comments that I need this checking medically but these results (ignoring how I actually feel after a second good night's sleep) say that I'm not being starved of oxygen and my heart is relaxing better.
Methinks that tomorrow I need to make a call and get to see a specialist sooner because until/unless they say this is damaging I plan to keep using my new-found dream-maker.
I have bouts of SA but the tests were inconclusive so I do not have anything. The nature of SA means that you stop breathing so your stats will drop. Did you wake with headaches?
If I was you I would keep the machine but wait for the results of the test as it could give a false positive. If it proves that you do have SA you will then have a spare machine.
When ever I am in hospital I am always told to ask my gp for an O2 test as they think I need support O2? But my GP has only in the past few weeks agreed that I do have "Crap lungs" His words.
Thanks for the comments. The COPD diagnosis was four years back and the SA testing at DRI (Derby) around 18 months ago but after one nights testing (at home) they said no, I didn't have SA and the next thing I knew was I'd been discharged from the COPD clinic "because I'd missed an appointment" (they write to tell you when the appointment is but refuse to allow making an appointment whilst at the clinic ... I don't miss appointments!) - I've come across many patients with the same story.
In anger over this I stopped supporting the research team at Nottingham City Hospital (I had attended several times for research - like I said, I don't miss appointments, I even went to ones I didn't have to!) - Have to say I regret that and may contact them to see about starting up again as they do have four years of history with me.
Sadly, I think that DRI are more interested in targets than patients.
Do I get headaches? Yes, long dull thudding aches that leave me feeling I should rip my eyes out to get to the back where the pain comes from daily, I start the day with a glass of water and 500/30 codeine for arthritic knees & chest pains (no, they did the echocardiogram/angiogram etc at the start of 2015 and declared those bits absolutely fine!). Also, wife assures me that I can snore for England, I have a habit of suddenly going silent for long periods followed by gasping (what she tells me)
That was 18 months ago and it's only since a new GP saw me for the chest infection that it's raised it's head again - she suggested I use a different hospital!
All I can say about the dream-machine is I now feel somewhat addicted to it! Feels like I've had 20 years shaved off!
The snoring then stopping is typical of sleep apnoea. From memory, I think it's about 25/30 stops an hour that confirms diagnosis. Even brief breathing pauses will drop your oxygen level so how can it be doing harm when your results are so good? You're very lucky to find a comfortable mask though!
If it was me, I don't think I'd tell them anything until after their "official" diagnosis!
(I have been diagnosed but haven't been using the machine ...)
I recently have had trouble sleeping, waking up gasping or kicking my leg. I asked my lung Dr about it and she told me that even if i have sleep apnea, that i wouldnt be a candidate due to my Bullous Emphysema. It can cause a collapsed lung. So id make sure you dont have any bullae by getting a new chest xray before you begin to use it regularly.
Many thanks for all the kind replies/thoughts and ideas.
Chesterfield Royal Hospital gave me a gadget to wrap around my chest, the oximeter on my finger and a pipe up my nose for the night before declaring my a sleep apnoea sufferer! Yes, they confirmed my thoughts and well done to the locum Dr at my surgery for putting me forward for the testing!
Tomorrow I pick up an automatic CPAP machine to "trial", I did get told off for having/using a CPAP machine when discussed during the results and warned that it could do damage (bit odd if o2 below 88% causes damage but they didn't seem too concerned about that?).
I am quite excited at the idea of a good night's sleep (since the testing I've stopped using the CPAP ... just in case).
Oh, I mentioned that I was short of a lung function peak flow meter - managed to find one (with USB connection) so now I keep a check on how my lungs are doing (in spite of two exacerbations since the start of November 2015!).
Really looking forward to reporting back that I slept like a baby .... oooohhhh, I can't wait! (sorry, just childish excitement)
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