CPAP still not working so did an experiment

[chunkyfrog]

Physical affection: Give a hug, get a hug. If you're lucky, it may lead to the world's best headache remedy.

[jdm2857]

I guess hugging a frog isn't as bad as kissing one.

[kteague]

It's sad but length of time trying to use CPAP doesn't mean much if that time isn't invested in finding and consistently using the treatment at a therapeutic level. In the case of subpar treatment or when there is a failure to seek out and address related and unrelated contributing issues, it's like putting a bandaid on a cancer then wondering why there is no improvement. I admit, I am quick to roll my eyes when people make excuses instead of effort. I've had a hard road and can feel a bit impatient with those who, in my estimation, are easily thrown off track. But it takes only a flash to remember the many jaw-dropping stories on here of what some have endured to make this treatment work - the time, money, and misery invested before finding what really works for them. In comparison, I am a whiny baby. In discussions like this I am always torn between taking a hard-line stance on the merits of perseverance and the realization that sometimes, just sometimes, the person comes along who really should stop trying to make it work. I'm convinced my fear of what my CPAP was doing to me early on was valid, and that I was better off without it until I figured out how to change something. Fortunately with support on here I quickly found resolution. There is no award or reward for continuing in error. The hard thing is knowing the difference. What I do hate to see is someone quitting prematurely because they haven't given the treatment a fair shake or have another treatment in place to address their OSA. Just walking away and ignoring a valid diagnosis is a recipe for disaster.

Whether to continue treatment, whether to take meds to help get through the trying times (to improve mental status, performance or sleep) - those decisions simply cannot be assigned a one size fits all answer. I would be a hypocrite if I said never resort to meds when in desperate times I've used so many of them. What does concern me though is when I see meds used in the absence of other diagnostics - a resignation to treating the symptoms with no effort to find if there are fixable root causes. There have been many stories on here of people whose needs regarding certain drugs has changed with effective treatment of their OSA, and I think the effect of OSA is under appreciated in looking at mood disorders. However, I do believe that in a segment of the population no matter what else a person may do perfectly, a problem will remain that needs treatment. I've seen it too many times to not believe it is real. I mean, how could I be accepting that a body can have shortcomings that merit pharmaceutical intervention yet think a brain is immune to such a dysfunction? From the outside looking in I can have an opinion on what another person should or shouldn't do, but in the end it is just an opinion. May my opinion never cause anyone to suffer unnecessarily. Just this week in my circle of friends, one family has lost their bright seemingly healthy 21 year old son to suicide. How I wish he had gone to someone who would prescribe him a pill to help him stay afloat and get him through whatever was going on. And if that happened to be forever - so be it. I'd rather have him here with us on medication than gone or living in misery. Not feeling very judgemental about these things today. Feeling quite tolerant of whatever gets you through, good for you.

[Sir NoddinOff]

Touching commentary and very well said, kteague. I should take the time to say that kind of stuff, but I'm just a guy, so it's hard for me. Bravo.

[kaiasgram]

Touching commentary and very well said, kteague... Bravo.

+1

[Mozart22]

I personally think that it would be painful for these few individuals to read about the other 98% who embrace CPAP and claim it saved their lives. [/b]

98%? There are certainly several people on here who have had success, but a lot of the threads I see on here are from people who either feel no better, feel worse, feel very frustrated, have bad leaks, mask problems, rainout problems, AHI goes up and down, etc. So no, it is not painful for us to read about that because we know for a lot of people, CPAP is frustrating and unpredictable at best, and makes you much more exhausted at worst. We are not dissenters, we are part of the many people who tried CPAP, made changes, tweaks, gave it time, and ended up in worse shape than before when it comes to energy levels. Look at the OP, nearly 2 years on CPAP and always exhausted. Stops using CPAP then gets more energy. There are a lot of cases like this.

[jdm2857]

Mozart --

Are you looking for absolution for not using your APAP?

You're unlikely to find it here.

[sleepstar]

CPAP isn't for everyone. Many who persist get there in the end. But for some people it's just not for them.

[sleepstar]

It is a bit frustrating though when a patient says straight out to you "i'm not going to wear one of those mask things" before they have even had a sleep study. Before they even know they have sleep apnea.
I was about to bring a lady to her room for the night and before I could even say hello she said the "I'm not going to wear one of those" line.
I find though a lot of the people who say that open their mind up a little when they've been diagnosed :p And a lot do give it a go and are happy they did.

[kteague]

CPAP is frustrating and unpredictable at best...

My guess is that statistically those who come here with problems are a small portion of CPAP users. Some never seek this kind of help. But I'm guessing the majority use their CPAP with little issue so have never seen a need to find a forum like this. Just counting - I am the only one of a circle of 5 friends who had problems that were were not readily remedied by their medical providers, and I am the only one on here. One person told me they were content with their treatment, felt just fine, had no trouble sleeping, had no equipment issues, and feel no need to make something more complicated than it needs to be. Can't argue with that.

...and makes you much more exhausted at worst... Look at the OP, nearly 2 years on CPAP and always exhausted. Stops using CPAP then gets more energy.

In all fairness, it has not been determined that the OP's CPAP made them worse - only that they felt worse after starting CPAP and felt better when they went off. They have acknowledged a limb movement issue and how there seems to be a correlation. The CPAP did not cause the limb movements. They are an entity of their own. The OP is a perfect example of someone who has other issues that have not been addressed (the limb movements) and we don't know the details of what has happened in regards of making sure the actual CPAP treatment was therapeutic. In my mind I would consider them, even after 2 years, as someone who has quit prematurely. By prematurely I simply mean before all known available avenues toward success have been attempted. They did not fail at using CPAP nor did CPAP treatment fail them. They have a medical issue that has comprised their ability to use CPAP, and I certainly understand that. When my legs were bad, I could hardly stand to use my CPAP. My nerves were so on edge I couldn't stand the mask or headgear even touching me. Hard to be successful that way.

So, while I agree that maybe some people can't use CPAP or are better off quitting, the OP has not said anything to convince me they fit in that category. The sad thing for this OP is that can't just go try another OSA treatment like a dental device or Provent. It's probable that reducing their OSA by any means will have the same effect on their legs. OSA needs treatment. I don't care how - whatever works. For the OP that likely means addressing the other issues. It can be done.

[Mozart22]

In response to the above post by Kteague, I agree that the people most likely to use this forum are those who struggled with CPAP, while those who
adapted quickly don't need to use this forum, so we don't hear from them much. However, what is also true is that CPAP has a high rate of abandonment at the one year mark. Some studies say around 50% of people end up ditching their CPAP after 12 months or less. CPAP therapy is obviously complicated for a lot of people, or very uncomfortable, or doesn't work, or makes them feel worse. If it wasn't, the long term rate of abandonment would not be so high.

As for the restless legs thing... I agree with Kteague that we can't blame it all on OSA... there are other things like restless legs, insomnia, etc.
However, the OP said he used CPAP for almost 2 years and felt exhausted, and after stopping, he has more energy. That tells me a lot, regardless
of whether there are additional sleep problems. What I want to stress is that there is a big difference between "feeling the same" while using CPAP
versus "feeling worse/more tired" with CPAP. It's good to know that CPAP can help the heart and brain, but if you feel completely exhausted all the time,
really what's the point anyway? I love being alive, but not if being alive means sleeping all day or not having any energy to get off the couch.
Someone who is totally exhausted is not living, they are simply existing. We thought CPAP would increase our energy levels, and much to our horror, the energy levels
became worse

In response to some of the other posters, all I wanted to do was say that I agree with the OP that CPAP has made me feel more tired, and when I stopped it I have
more energy. (still tired, but not exhausted). I hope to hear more from the OP because this is their thread, not mine. It does seem a few others have also said
CPAP made them feel more tired too.

[sleepstar]

In response to the above post by Kteague, I agree that the people most likely to use this forum are those who struggled with CPAP, while those who
adapted quickly don't need to use this forum, so we don't hear from them much. However, what is also true is that CPAP has a high rate of abandonment at the one year mark. Some studies say around 50% of people end up ditching their CPAP after 12 months or less. CPAP therapy is obviously complicated for a lot of people, or very uncomfortable, or doesn't work, or makes them feel worse. If it wasn't, the long term rate of abandonment would not be so high.

As for the restless legs thing... I agree with Kteague that we can't blame it all on OSA... there are other things like restless legs, insomnia, etc.
However, the OP said he used CPAP for almost 2 years and felt exhausted, and after stopping, he has more energy. That tells me a lot, regardless
of whether there are additional sleep problems. What I want to stress is that there is a big difference between "feeling the same" while using CPAP
versus "feeling worse/more tired" with CPAP. It's good to know that CPAP can help the heart and brain, but if you feel completely exhausted all the time,
really what's the point anyway? I love being alive, but not if being alive means sleeping all day or not having any energy to get off the couch.
Someone who is totally exhausted is not living, they are simply existing. We thought CPAP would increase our energy levels, and much to our horror, the energy levels
became worse

In response to some of the other posters, all I wanted to do was say that I agree with the OP that CPAP has made me feel more tired, and when I stopped it I have
more energy. (still tired, but not exhausted). I hope to hear more from the OP because this is their thread, not mine. It does seem a few others have also said
CPAP made them feel more tired too.

Mozart, did you ever go back and ask for a titration on CPAP? The AHI that the machine was giving you could be different from what is actually happening. The only way you will know for sure is with a sleep study.
I think the AHI on the machine is generally fine - especially if people are feeling better - but if you were feeling tired or even more tired, I'd further look into it.
At our clinic if patients are still not feeling refreshed after CPAP, even if there AHI looks low on the machine, we do a titration study. It's likely that your pressure requirements will be different from what the machine shows.
You might be having flow restriction that your machine wasn't picking up. Your PLMS might be worse. There's a variety of reasons why you didn't feel the benefit.
I'd definitely ask for a titration study.

[49er]

I hope Lullaby will forgive me for this comments after I apologized to him by PM for taking his thread off topic but I feel the need to say a few things before getting back to the topic at hand.

All I said in my initial comments was that in my opinion, that for most people taking antidepressants that the risks did not outweigh the benefits. I never said that people were weak if they chose to go that route and I am very sad if I gave a different impression. Obviously, if nothing else is working to keep you from killing yourself, you gotta do what you have to do.

And since I was on meds for 15 years, I would kind of be a hypocrite if I thought people were weak for taking meds because I would be indicting myself, right?

I am also the same person who has criticized folks in the withdrawal community for taking the position that no one should ever take meds on an emergency basis. Again, it is the philosophy that you do whatever is necessary to survive.

I also find this discussion ironic because I don't sense the same compassion as someone who so far has failed at cpap treatment. Interestingly, when people mention the possibility of alternative treatment, they get hit with the low success rates instead of being praised for a willingness to do whatever is necessary to at least get some treatment.

They are then told they don't have the right attitude and need to try harder. But yet, when I made the arguments that ADs don't work, i felt I was essentially criticized for giving that message. You can't have it both ways folks.

Anyway, I am sad that I failed to let Lullaby know that I identified with his issues. Even though what we are dealing with is totally different, I relate so much to what he has said.

Finally, one more off topic comment about meds and then I am truly done with the topic. If you are considering going off of them, never ever cold turkey them because there will literally be h-ll to pay. Check with your doctor although to be honest, I say that with some hesitation since some of them have given very dangerous advice regarding this issue. But since we're not medical professionals, it is still the best thing to do.

49er

[Goofproof]

CPAP isn't for everyone. Many who persist get there in the end. But for some people it's just not for them.

Ignoring your illness, when there is a solution is called suicide. As far as feeling better after stopping xpap, that doesnt mean because you stop rowing your intertube in De-Nile, you wont drown. Jim

[Mozart22]

Mozart, did you ever go back and ask for a titration on CPAP? The AHI that the machine was giving you could be different from what is actually happening. The only way you will know for sure is with a sleep study.
I think the AHI on the machine is generally fine - especially if people are feeling better - but if you were feeling tired or even more tired, I'd further look into it.
At our clinic if patients are still not feeling refreshed after CPAP, even if there AHI looks low on the machine, we do a titration study. It's likely that your pressure requirements will be different from what the machine shows.
You might be having flow restriction that your machine wasn't picking up. Your PLMS might be worse. There's a variety of reasons why you didn't feel the benefit.
I'd definitely ask for a titration study.

I never had a titration before and I won't get one now. I have no health insurance and very little money. I had to pay for APAP and home sleep test out of pocket.
According to both Sleepyhead and Encore Basic my AHI was almost always under 5 and usually under 3, with a few exceptions. No significant leaks. No significant
centrals. Stopping the apneas was not the problem, the machine did that fine. But I felt much, much more tired when using the machine. It made me feel totally
and completely exhausted. So after several tries, different masks, tweaks, etc, I quit. And now I'm tired but at least functional.

By the way I never said I have PLMS. I think it's the OP who has that. I'm not the OP.

I'm not the only one this has happened, I have seen several other examples. The OP is one of them, but there are several others. CPAP therapy just isn't for me.
I can't continue using a machine that makes me totally exhausted where I can barely get off the couch. It appears OP has the same problem, I don't know how he managed
to go for more than 18 months before quitting.