[CPAP] Help

[ElasticFrust]

I was diagnoses with mild apnea. My first try with cpap was horrible, even though the machine (ResMes autoset 9) showed my AHI has dropped to less than 1, I could barely function. After this 1 week trial I met with the doctor, and he suggested we give it another try. We did, and it seemed to work better (on the first few days I wasn't sleepy at all!!!, later I found myself feeling a bit sleepy again but not unusually as before). The doctor hasn't changed anything in the settings between the meeting, so I have no clue what cause such a big big difference in my reaction. In any case, after 2 such weeks I was convinced I should by a CPAP machine. I bought the same machine (ResMed autoset 9), With the exact same setting (pressure 4-12 H2Ocm, EPR 3), but with nasal pillows rather than nasal mask (which irritated my nose bridge for some reason). I have to tell you guy's, I''m tired. Not horribly tired as in my first trial, but certainly more tired that without CPAP. To my horror, I found that if I now sleep without the machine I cannot get out of the bed- I just crash all day and cannot function, at all. It's been 5 weeks since I started my first trial, and I'm now worried that I got somehow to be dependent on the machine, but also that the machine is just not working for me and I'm doomed to be a walking dead all my life.
I could really appreciate some of your experience, kind words, anything really. I seriously want it to stop in any f*#$ing way possible. I want my life back.

*edit*: Also, these day (from the second trial on) my AHI is always under 5 (at times it's even under 1- and it seems that the days when it's lowest I'm sleepiest). HELP!!!

[justMongo]

There is a period of adjustment to CPAP therapy. We have all experienced it.
I don't know how long you've had apnea; nor how old you are.
One cannot expect to reverse the long term effects of apnea in a short period.

In a sense one does become dependent upon the machine.
My personal experience is that I can sleep without it should I have to; but do not feel as sharp the next day.

There may be other medical reasons for your feeling tired.
You should consult a physician and be screened to find or rule out other conditions.
You are your own best advocate for your healthcare.

Your minimum pressure setting is a bit low. Many people cannot tolerate 4 cm-H₂O starting pressure.
Starting at 6 is often better. You might need a little more headroom at the top end too.

I would suggest downloading Sleepyhead (link at top of page); and tracking your therapy on a PC.

There are many knowledgeable people on the board to guide you.
It's hard to get a handle on things from a first time post.
So, stick around, read, ask questions, and become a self empowered user of CPAP.

Kindest Regards,

Mongo

[ElasticFrust]

Thanks justMongo for your reply! I'm 28 male. I already use sleepyhead (been doing it since the second trial). As I mentioned in my original post, on screen, it seems the CPAP works- I have AHI lower than 5 most of the day it's less than 3 actually with some days even less than 1. However, I feel *worse* than ever. I cannot pass a day without sleeping at least 1 hr in the middle of it, and I'm still very very tired. More tired than I was before I started CPAP. Horribly I found, that when I try not using it for a night or two, the following day I'm so tired I can't get out of bed.

[justMongo]

That would seem to suggest that it's working; but perhaps needs to be fine tuned.
You can post a screen shot from sleepyhead as long as it's under 300KB.

Did you have a sleep study? What type of apnea was found; and what was your untreated event rate (AHI)?

I have to ask this (you don't have to answer, just think about it): Have you been screened for depression?
How's your weight? Taking any medications? Any other health issues? Thyroid function been checked (blood test?)

I get that you're a young man; and feeling bad; not being able to function is frustrating.
Even untreated, mild apnea should not be dragging you down so much.
Mild apnea is treated to prevent the long term effects on the cardiovascular system.

[ElasticFrust]

185 cm Height, 90 kg weight BMI 26, a bit high but not too high... NO med's no other health issues. Thyroid normal (though TSH is high within normal range). Not screened for depression, not sure there is need to it too- Before the CPAP was a bit tired usually, yet nearly never had to take a nap during the day, and was content. Before treatment I had two tests, the first AHI of 9 on the second (a few months later) AHI of 18.

[justMongo]

You just should not be that tired.
Perhaps CPAP is disruptive to your sleep; and hence you feel worse?

You are discussing things with your doctors(s)?

[PaulaO2]

It has just been a few weeks. If you had another illness, one that had been with you for as long as sleep apnea has, would you expect to be rock climbing two weeks after starting therapy? Probably not.

Give it time. Watch the data. Consider taking naps in the meantime.

And for pete's sake, stop "testing" by going without the CPAP! That's not helping. It is like trying to reach a destination but turning around and driving back a quarter of your path thus far then starting forward again.

[PoolQ]

My experience with CPAP showed me that there are two parts of CPAP therapy. The actual therapy settings that have dropped you AHI to a good level and then there are the comfort settings, you will not sleep well if you are not comfortable. I agree that the 4 setting is a little low, mine has to be at 6 or above or I feel starved for air.

If when you decide to tweak settings, do one at a time and small steps. Some will notice right away and others may take several days to see how you feel with the change.

EPR of 3 is to make it easier to exhale into the reduced pressure. The nasal pillows will make it harder to exhale than your full face mask (FFM). I tried the same thing and had to go back to FFM, a different one though. I started with Simplus and changed to Amara View.

Eventually I had to change to a BiLevel machine (AirCurve) and now I am doing fine.

You have an alien sitting on your face blowing air up your nose, yes it takes time to get used to, but tweaking some settings can make it better. The chances of all the default settings being just right for you is pretty slim. Don't assume you know what settings you will like, test them all. I thought I like humidity (in the shower) but eventually turned it all the way off and using a dry tank. Who knew?

You don't get dependent on the machine any more than you get dependent on medication that you still need. CPAP does not repair your body, it just splints your airway open so you can breathe, so for now CPAP is the gold standard for treatment.

Good luck and this is just the latest project that needs to be solved, start tweaking.

[trish6hundred]

Hi ElasticFrust,
WELCOME! to the forum.!
CPAP therapy can take some getting used to so just stick with it, and it can take a while before you notice improvements.
Hang in there for more responses to your post and much success to you with your CPAP therapy and getting it fine tuned to meet your needs.

[DariaVader]

You've had some great advice here on what to do next with respect to cpap settings... but it caught my eye that you said

Thyroid normal (though TSH is high within normal range)

One thing that is fairly well understood by most endocrinologists today is that the "normal range" is way too high! I believe the top end is 5 point something... but you will have symptoms of hypothyroid if you get very much over 2 to 2.5 you should talk to your doctor about treating with synthetic hormone and aim for tsh between 1.5 and 2.5

hypothyroid symptoms include:
dry skin
water retention
fatigue
depression
sleep issues
hair loss
weight gain
and more.