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

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Post: #1
Question One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.

Having a 0.3 AHI means nothing as far as I can tell, if you have other problems as well. I am REALLY disappointed with the whole CPAP thing, I have 100% Utilisation, I don't even take a nap without it. I felt better for about two weeks when I first got it. That was a year ago, I am once again so weak and tired that I can not turn myself over in my bed. Heaven forbid I have to pee at night. (Warfarin and Diuretics for DVT and clotting in legs.)

I have picked up 15kg, and now weigh 165 kg.

I am awoken by botherings of my legs, pain and discomfort. I suspect that the awakenings due to a plethora of other causes like some mask slip and leak (which wakes me instantly) amongst other reasons, might be the cause that even though, when I sleep, I have no apneas but I sure aint getting high quality sleep.

Does anyone care to enter into into discussion of

"Just because your sleep apnea has been addressed, and you have super low AHI does not mean you are sleeping properly and could display ALL the symptoms of untreated sleep apnea even though causes are not related to your breathing any more."

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.

I want to research all this myself, did I not pay them THOUSANDS of Rands (South African Currency approx 10 to 1 on the US dollar) and I am no better.
01-09-2014 01:17 PM
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RonWessels Offline

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Post: #2
RE: One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
(01-09-2014 01:17 PM)TobieV Wrote:  Does anyone care to enter into into discussion of

"Just because your sleep apnea has been addressed, and you have super low AHI does not mean you are sleeping properly and could display ALL the symptoms of untreated sleep apnea even though causes are not related to your breathing any more."

Probably not, because there's not much to discuss. The statement is absolutely correct. As with any diagnostic effort even for things like your car, just because you found and fixed one problem doesn't mean that there isn't another problem that causes the same or similar symptoms.

(01-09-2014 01:17 PM)TobieV Wrote:  I also want oxygen saturation logger.

Have a look at Supplier #19 in the Supplier List. They specialize in pulse oximeters. I personally have the CMS-50F. Being a wrist unit, the clamping pressure on the finger will be less than an all-in-one unit. It does only record one "session", overwriting it when a new "session" starts, so amongst other things, you have to keep it on/powered if/when you get up to go to the bathroom in the middle of the night.
01-09-2014 03:32 PM
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me50 Offline

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Post: #3
RE: One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
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. I had another sleep study (not required to switch to BIPAP) and am getting a BIPAP Auto next week.

Try to get a mask that isn't FFM and see if it controls your leaks better and helps you feel more rested. I would also make sure you are looking at your data to see what your leak rate is because that can affect your therapy.
01-09-2014 03:53 PM
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Tez62 Offline

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Post: #4
RE: One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
Tobiev, welcome, have you been back to your sleep specialist to review your data? I would suggest another sleep study even though you don't want to pay the $400, there are 70 - 80 other sleep disorders that you may have as well as sleep apnea I.e RLS, PLMD etc. my sister has sleep apnea and narcolepsy and the narcolepsy wasn't picked up till the second sleep study.
01-09-2014 03:57 PM
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DocWils Offline

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Post: #5
RE: One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
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. All this can effect your sleep quality and your waking life quality, and it is the weight and other problems that now need to be addressed. 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, 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 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 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.
01-09-2014 04:27 PM
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trish6hundred Offline

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Post: #6
RE: One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
Hi TobieV,
WELCOME! to the forum.!
I encourage you to stick with CPAP. Maybe you need to try a different mask to see if you get better results.
Best of luck to you and Hopefully, you can look into your other problems and get them straightened out.

trish6hundred
01-09-2014 04:55 PM
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robysue Online
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Post: #7
RE: One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
(01-09-2014 01:17 PM)TobieV Wrote:  One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.

Having a 0.3 AHI means nothing as far as I can tell, if you have other problems as well. I am REALLY disappointed with the whole CPAP thing, I have 100% Utilisation, I don't even take a nap without it. I felt better for about two weeks when I first got it. That was a year ago, I am once again so weak and tired that I can not turn myself over in my bed. Heaven forbid I have to pee at night. (Warfarin and Diuretics for DVT and clotting in legs.) [emphasis added]
You are right. Having a super low AHI means nothing if you have other medical issues or other sleep related issues going on. And from the rest of your post, it sounds as though you have some pretty significant other medical issues going on. More about that in a minute.

The point of CPAP is to fix OSA. It does nothing else---all CPAP does is make it harder for your upper airway to collapse when you are asleep. Now don't get me wrong: Fixing the OSA is important because untreated OSA can lead to a whole host of other medical issues and it can aggravate a whole bunch of medical issues. But fixing the OSA may or may not do diddly-squat when it comes to making a difference in how you feel, because how you feel may depend strongly on things other than the OSA.

If your only pre-CPAP problems were excessive daytime sleepiness and fatigue caused directly by the untreated OSA and you are getting a good 7 hours of sound sleep with the PAP every single night, then it's reasonable to assume that the daytime sleepies and fatigue should have improved subtantially. But---if the sleep remains fragmented for any reason OR if there are other medical conditions to deal with, then you might not see much improvement in terms of daytime sleepiness or fatigue because those symptoms may be driven by the fragmented sleep or be symptoms of the other medical conditions or be side effects of drugs used to treat the other medical conditions.

In other words, the CPAP won't relieve daytime sleepiness and fatigue that are caused by things other than sleep disordered breathing.

Quote:I am once again so weak and tired that I can not turn myself over in my bed. Heaven forbid I have to pee at night. (Warfarin and Diuretics for DVT and clotting in legs.)
Extreme weakness and fatigue are symptoms of a whole host of other medical conditions in addition to untreated or undertreated OSA. When was the last time you had a complete physical exam by your primary care doctor?

Have many of the standard causes for fatigue been checked out and eliminated? For example, when was the last time your thyroid levels were checked? What about your vitamin D levels? Has your testosterone been checked? Have neurological causes for the weakness been ruled out?

You are on both warfarin and Diuretics for DVT and clotting in your legs. Have these conditions been properly monitored for the past year? Any chance you need the dosage on these drugs to be adjusted? Here in the US, the prescription labeling for warfarin includes "unusual tiredness or weakness" among the list of potentially serious side effects that should be reported to the prescribing doctor. Other potential side effects of warfarin include:
  • lack or loss of strength
  • a general feeling of discomfort or illness
  • unusual drowsiness, dullness, or feeling of sluggishness
Go to http://www.drugs.com/sfx/warfarin-side-effects.html for a full list of recognized side effects of warfarin.

Quote:I have picked up 15kg, and now weigh 165 kg.
First to translate this to units us poor dumb Americans undertand:

15kg = 33 pounds
165kg = 364 pounds

So you weight was about 150kg (330 pounds) before you started CPAP. How tall are you? And what's your BMI?

At any rate, it appears that excess weight was a problem before starting CPAP, and it's gotten worse since being on CPAP. Chances are the CPAP is not responsible for the weight gain, but other issues, including your ongoing problem with not getting high quality sleep, are likely contributing to this. (More on the lack of high quality sleep in a bit.)

Quote:I am awoken by botherings of my legs, pain and discomfort.
"botherings of my legs"
Were restless leg syndrom (RLS) and periodic limb movement disorder symdrom (PLMD) ever considered as possible causes for some of your sleep problems? If not, then it's worth considering whether you might have either of these two problems.

Also note: For some people with both untreated OSA and untreated PLMD, the arousals caused by the untreated OSA mask the PLMD problem. In other words, on the diagnostic sleep test, the vast majority of the arousals/awakenings and consequent sleep fragmentation are easily tied to OAs and hypopneas, and the PLMD stuff is hidden. Once the OSA is controlled by a properly tuned CPAP, however, the PLMD continues to cause arousals and awakenings and fragmented sleep. As much as you don't want to spend more money on a sleep test, it may be worth having an in-lab test done with the PAP mask on your face to evaluate you for PLMD.

Restless leg syndrome (RLS) is usually diagnosed through a detailed medical history taken during a physical exam or an appointment concerning "bad sleep". RLS tends to manifest itself most at night, but RLS often has daytime symptoms as well.

There are several different drugs that can be used to treat PLMD and RLS.

"pain and discomfort"
Is the pain and discomfort limited to the legs? Or is it more widespread? Where does it hurt? How does it hurt? And what is uncomfortable?

Pain all by itself can cause severely fragmented sleep. And fragmented sleep can lead to daytime symptoms of excessive sleepiness, tiredness, fatigue, and brain fog.

And it's also worth pointing out that the pain and discomfort could be due to either the DVT and clots (in which case you need medical attention) OR they could be caused by an undiagnosed medical condition OR they could be possible side effects of the drugs you are taking. Warfarin's side effects include:
  • burning, crawling, itching, numbness, prickling, "pins and needles", or tingling feelings
  • arm, back, or jaw pain
  • pain in the toes
  • joint pain
  • muscle pain
So again, it's worth talking to the doc who prescribed the warfarin about whether or not the dosage needs to be adjusted and whether or not some of your ongoing symptoms might be related to the long term use of warfarin.

And it's worth talking to your PCP about the on-going pain issues, how the pain and dicomfort seem to be disturbing your sleep, and asking him/her what might be causing them.

Quote:I suspect that the awakenings due to a plethora of other causes like some mask slip and leak (which wakes me instantly) amongst other reasons, might be the cause that even though, when I sleep, I have no apneas but I sure aint getting high quality sleep.
And so we also come to another thing that is contributing to your fragmented sleep: Sensory issues stemming from the CPAP machine and mask. Alas, I'm way, way too familiar with that problem: Sensory issues made my first three months of PAPing feel like a living hell and the next three months feel like purgatory.

Sometimes the issues can be addressed. Let's start with the mask slipping issue. How often does it happen? A couple of times a week? A couple of times a night? A couple of times each and every hour when you are trying to get some sleep?

Because what to do about the mask issues depends strongly on just how often they're occurring. If you are having mask issues multiple times each and every night, that's a sign that either this mask is not the right mask for you (and you need to try another model) OR you're not fitting the mask well enough for it to stay put all night long.

The cheap thing to do is to try to make the current mask work better: Mask liners might help. Rereading the fitting guide for the mask and taking the time to follow the instructions carefully might help. Cleaning the mask cushion regularly might help. Making sure your face is both clean and dry before masking up might help.

But if the mask is still not working after you've spent a week or two working hard on ideas to fix the problem, then it's probably a sign that you need to consider trying a different mask, and possibly a different mask type altogether.

And then there's the fact that you're just not getting high quality sleep. The question is really Why is your sleep so bad?. More on this in a bit.

Quote:Does anyone care to enter into into discussion of

"Just because your sleep apnea has been addressed, and you have super low AHI does not mean you are sleeping properly and could display ALL the symptoms of untreated sleep apnea even though causes are not related to your breathing any more."
This was my BIG bugaboo issue during the first 12 months of PAPing. You can the short version of my long odyssey towards becoming a PAPer who finally found some benefit to PAPing at http://www.apneaboard.com/forums/Thread-...0#pid48790 .

But one of the things I've learned during my on-going journey is the truth of what a sleep tech who posts over on the forum sponsored by Supplier #1 has said multiple times:

CPAP can't fix bad sleep.

In other words, CPAP fixes sleep disordered breathing and nothing else. If the bad sleep is caused by nothing except untreated OSA, then CPAP is going to make a world of difference. But if the bad sleep is caused by other things in addition to OSA, then CPAP by itself is not going to make much of a difference in the overall (subjective) quality of the sleep. And bad sleep has the same daytime symptoms of excessive daytime sleepiness, tiredness, fatigue, and brain fog that untreated OSA does.

And if CPAP is disrupting your sleep through mask leaks and other problems, then the objective net benefit of using the CPAP to fix the OSA is subjectively influenced (strongly) by the sleep fragmentation caused by the CPAP disruptions.

As someone who has been fighting bad sleep that is caused by a host of non-OSA issues since starting CPAP, I can tell you that it's taken a lot of time and effort to sort out what things make my sleep for the worse and what things make it better. In my case, my sleep finally improved about 9-12 months after starting PAP: At that point, several things had finally been addressed:
  • the CBT for Insomnia had taught my body how to fall asleep within about 10-15 minutes of going to bed---provided I was sufficiently sleepy at bedtime;
  • the CBT for Insomia had convinced me of the necessity of maintaining a rigid wake up time, regardless of how little I slept, and the rigid wake up time encouraged my body and mind to start getting sleepy at an appropriate time and to stay asleep more soundly during the night;
  • my chronic migraines were beginning to be controlled through prescribed vitamins rather than medication that was aggravating my existing insomnia as well as triggering a host of daytime problems caused by side affects;
  • my on-going TMJ problems were finally being addressed by a specialist who had designed a plan on healing my TMJs rather than just making night guards;
  • and my body had finally learned how to ignore some of the most irritating sensory aspects of PAPing---the air blowing down my throat at the beginning of the night no longer triggered immediate aerophagia, the lips were no longer painfully chapped every morning, and I'd figured out how to sleep in my favorite position for example.
I've had setbacks since then, including a major round of insomnia that started over a year ago and that has only begun to abate in the last couple of months. It's good to finally be almost "sleeping well" again, but there's still work that I have to do to beat back the insomnia monster and his ally "chronic headaches" that have ruined so much of my sleep during the past year.

Quote: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 think you mean EEG, not ECG. At any rate, Zeo (which is what I think you're talking about) is no longer in business. The FitBit and other "sleep bracelets" or "activity bracelets" don't have EEG data; rather they infer when you are awake or asleep based on movement data gathered by an accelerometer.

But regardless: In my opinion, you need to start thinking about what causes your bad sleep rather than trying to objectively measure how bad your sleep actually is. And once you've identified potential causes of bad sleep you need to address fixing the the causes. Once you've addressed the causes of your bad sleep, your sleep should (finally) start to improve while using your CPAP.

And I'll even give you a starting point for listing possible causes of your on-going bad sleep:

Other medical conditions. Pain from any medical condition can disrupt sleep, sometimes severely. You've mentioned pain in your legs waking you up or at least being noticeable when you wake up. You need to get back in contact with the person treating you for the DVT and leg clots.

Side effects from necessary drugs. Obviously you can't just stop taking needed medication. But if a drug is interfering with your sleep, then the doc who prescribed it needs to know about it. Sometimes an alternate drug can be prescribed. Sometimes the dosing schedule can be addressed.

On going CPAP issues. Leaks that wake you up on regular basis have to be addressed because they ain't going to fix themselves. If the mask is constantly slipping off and leaking, you need to work on finding a new mask or figuring out how to stop the current one from slipping out of position. And then there are the host of other potentially CPAP-related issues: aerophagia, hose entanglement, air blowing in the eyes or on the arms, noise of your own breathing, etc. All of these can be addressed, but you have to identify what the problems are before you can fix them.

Life-style issues or sleep hygiene issues. How much caffeine do you consume each day and when? How much physical exercise do you get? When is supper relative to bedtime? Have you got a bedtime routine? Do you regularly watch tv or web browse while in bed? Do you have a regular wake up time seven days a week or do you sleep in on weekends? What do you do when you find yourself awake in the middle of the night? The answers to all these questions may provide suggestions on how to improve the quality of your sleep.
01-09-2014 06:54 PM
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jdireton Offline

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Post: #8
RE: One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
I'm really not trying to be mean, but I we get frequent posts here that "CPAP isn't working for me" and then comments about out of control diabetes, worsening depression, fluctuating blood thinner levels, etc.

If you break you leg you don't sleep well (been there). OSA is a specific medical issue and CPAP only treats that. Please look at your other medical conditions. If you gave up on xPAP therapy, it would be just like stopping one of your mediacations.

Again, I wish you the best and hope you can find a way to manage your health issues and lead a full life. I just want anyone reading this post to realize xPAP is not a cure all, just a treatment just like a medication.
01-09-2014 07:37 PM
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me50 Offline

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Post: #9
RE: One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
I agree with what the others have said. The thing is, if you are having fragmented sleep, there is likely another cause besides OSA as others have said. And, fragmented sleep causes day time tiredness and sleepiness which makes you not have the energy to do things that most people do without thinking twice about it (go to work, run errands, etc.). When you are tired and/or sleepy, you/we don't get active/stay active and the sedentary lifestyle along with other things such as poor nutrition will cause weight gain which makes you/we more tired, have more of a sedentary lifestyle and the circle keeps going. As many have said, it is important for you to find out the cause of how you are feeling and it is likely to be other health issues/medication or a combination of those.
01-10-2014 09:50 AM
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me50 Offline

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Post: #10
RE: One Year CPAP - AHI 0.3 - Feel like death, gained 15 kg.
Forget about bandaids and heal the wounds!
01-10-2014 09:51 AM
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