[Treatment] One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.

[JohnNJ]

Have you tried to change masks? I have been on CPAP for 3 years and had no improvement, great AHI's but had defragmented sleep, waking every few hours, daytime tiredness/sleepiness, etc. Finally, the sleep lab gave me a nasal mask and chin strap and things have improved.

me 50: I may be reading this incorrectly so I apologize in advance if I am.

You had no improvement on CPAP and it took you three years to change masks?

[me50]

Have you tried to change masks? I have been on CPAP for 3 years and had no improvement, great AHI's but had defragmented sleep, waking every few hours, daytime tiredness/sleepiness, etc. Finally, the sleep lab gave me a nasal mask and chin strap and things have improved.

me 50: I may be reading this incorrectly so I apologize in advance if I am.

You had no improvement on CPAP and it took you three years to change masks?

I don't know what my AHI's were b/c the DME never downloaded my info and I didn't know then what I know now. However, when I complained about mask issues, the DME never offered nasal masks or pillows and just tried changing the size of the mask I was first given which did not work. I wouldn't say I didn't have any improvement but I still had fragmented sleep and was tired during the day. My AHI was low even before my last sleep study but I still had fragmented sleep, etc. I then got a nasal mask and had a new sleep study. One thing to look at is masks, medical conditions, medication taken, whether you can tolerate the pressure (15 and above) to see if it warrants a different type of machine (BIPAP).

[Bladskinner]

One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.

I want that mini ECG machine that measures sleep quality that they used in the sleep lab. I cant pay the (approx $400) R4000 again for a sleep study over and over, I'd rather buy the machine and get my own polysomnogram. I also want oxygen saturation logger.

Try amazon.

[justMongo]

At your present weight, likely you also suffer from high blood pressure; and perhaps diabetes.
Blood pressure meds can really sap one's energy. Especially beta blockers.
A quote I heard from a physician, "We can control anyone's blood pressure; but they may not be able to get out of bed."

Just because you machine reports a low AHI does not mean you are not desaturating with regard to O2.
I do suggest you get a recording oximeter. You might need to have an O2 concentrator flow O2 into your CPAP airstream.

Have you had more than one sleep study? What was your O2 nadir % ?

If your sleep doctor is not your primary care doctor; make sure the sleep doctor knows every med you take.

[grumpycat]

Robysue: Yours was one of the most detailed, informative posts I have read in a long time. Thank you for the time and effort you put in!

[TobieV]

Tobiev, welcome, have you been back to your sleep specialist to review your data?

I have been back to the CPAP provider, whose answer to the following question, "If I sleep for 10 hours and, for an hour sometime in the night, I have 30 apneas, my AHI is 3. Everyone goes whoopy do any AHI below 5 is great ! My further question is how come there were apneas at all, if I am on a pretty high pressure CPAP" Their answer : "AHI is below 5, we owe you no answer."

As far as getting back to the sleep specialist , It is just too expensive.
Their fee is exorbitant.

[TobieV]

First of all thank you to all responses ! Your opinions are worth more to me in my search for answers, than those of the health professionals I have been paying for four years now, and still have no result or outcome.

Thank you once again.

I will try to respond to each one seperately I guess.

1. It may well be that what we are talking about here is not related to your sleeping disorder at all but directly related to your weight and your drug regime.

Yes the drug regime and interactions have been a major problem in the past. My risk of stroke is too high to drop the warfarin (coumadin). I believe it does play a major role in my state of being too weak to move.
I have a separate investigation going on around that. Trying to get off the pharmaceuticals.

2.The use of CPAP cannot be attributed to your weight gain, and I suspect that now you need to find all the other things you need to deal with,

I know it does not contribute to weight gain, (see point 4) I was hoping I'd lose weight considering that my metabolism is compromised by the drugs. My complaint is , any doctor should know that sleep apnea is damn near a direct result of obesity, and when a patient complains that he is gaining 1 - 3 kg per month ... there must be something wrong.

3. and forget a home eeg machine (ecg or ekg is for your heart, eeg measures your brain waves and therefore your sleep quality), although a recording oxymeter is worth investing in to keep track of you sO2sats, but even then, it will mostly be unrevealing to the untrained eye.

I meant EEG, my apologies, I also know it's EEG and not ECG, just a typo I guess. My motivation for that is wanting to know what quality of sleep i had, the AHI on my CPAP is meaningless to me, considering my other, yet to be identified problems. I want to know .. Did I have deep sleep.

4. I would suspect that you have had unrealistic expectations of CPAP, and once it dealt with the problem of apnoea, the underlying other problems are now being revealed and brought to the fore. You need to see your doctor and start dealing with all those aspects. Any number of things can be making you feel crappy and even contribute to your weight gain, ranging from your

This was one of my expectations ? Is it really unrealistic ?

"Once you have been diagnosed with OSA and start on Positive Pressure therapy your sleep quality is usually restored allowing you to feel refreshed and alert during your usual wake hours. Many of my clients start to slowly lose weight without trying, but if you actually try to diet while using CPAP you can have the same oppertunity to lose the weight as a person without OSA does."

5. .. continue from 4...... thyroids to well, just about anything that overweight bodies can bring out. The CPAP dealt with just one of your problems, and you have a plethora of health issues that need to be addressed. No matter how effective CPAP can be, if your other issues aren't fixed, you will still feel like crap and probably also have a bad night's sleep. Stay on the CPAP and high thee to thy healer.

Thyroid was tested .... fine !

[TobieV]

Robysue: Yours was one of the most detailed, informative posts I have read in a long time. Thank you for the time and effort you put in!

YES ! Thank you thank you thank you.

What I take from your wonderful post, besides that I agree with everything and there are very few surprises for me there... is : "CPAP does not fix bad sleep" OSA in one potential cause of bad sleep, it fixes that. Sort of.

I will study other potential problems, and keep you guys informed on what I find, in case it can help some-one else.

[robysue]

This was one of my expectations ? Is it really unrealistic ?

"Once you have been diagnosed with OSA and start on Positive Pressure therapy your sleep quality is usually restored allowing you to feel refreshed and alert during your usual wake hours. "

If untreated OSA is the ONLY cause of the bad sleep, then this is a reasonable expectation.

But if the bad sleep has other causes in addition to the untreated OSA, then this is NOT a reasonable expectation. The sleep will only improve when all of the underlying causes of the bad sleep have been addressed and fixed to what ever degree it is possible to fix them.

(continuing the quote from the doc) "Many of my clients start to slowly lose weight without trying, but if you actually try to diet while using CPAP you can have the same oppertunity to lose the weight as a person without OSA does."

If untreated OSA is the ONLY cause of the excess weight, then this is a reasonable expectation.

But if the excess weight has other causes in addition to the untreated OSA, then this is NOT a reasonable expectation. You have to do address all the underlying causes of the weight gain in order to loose the weight and keep it off---the same way "a person without OSA does"

[robysue]

Robysue: Yours was one of the most detailed, informative posts I have read in a long time. Thank you for the time and effort you put in!

YES ! Thank you thank you thank you.

You are both welcome!