Calling all Zombies.

For years I have not slept through the entire night. Waking up between five and twelve times a night. Expectedly, I have also been tired for the same many years. I knew that I had sleep apnea for the simple fact that occasionally, I would wake up gasping for air, so it was no surprise when the diagnosis came in. I was given a good machine with a humidifier and the nostril pillow setup and showed how to use it properly.

Well I have used the machine for two weeks (to be honest, I picked it up on Friday the 16th of May and used it thru the 21st. I then went camping and started use again upon return the 26th). While I do remember twice taking it off in the middle of the night, in that half sleep / half aware state that you really can’t be held accountable for, I have used it through out the night. It is slightly uncomfortable, mainly when I try to sleep on my side, but not entirely unbearable.

My real issue is that I have never been more tired than I have been since starting usage of the CPAP device. Seriously, I have worked some long hours and been sleep deprived many times, but I have never felt as bad as I do in the morning after using this machine. No matter how little sleep I received the night before, I was always able to hit the floor most of the time before my alarm went off (still tired, but functional). Since using this machine (for thirteen actual nights) I have used my snooze button and been late to work more times than the previous ten years. I feel like the walking dead since the first use.

I understand that there is an adjustment period, but I really do not believe that I will live to see it through. I now fall asleep at work if I am not participating in a physical aspect of my job; I fall asleep in my chair at home faster, and the biggest is I have caught myself dozing off on the way to and from work almost every day.

I will keep using the CPAP until I get back to the respiratory therapist and discuses the negative effects and possible optional treatments. I was wondering if anyone else has had issues like this. If so, what did you do to overcome them?

Thank you in advance

B6

Yes, B6, I've had the same problem of feeling terrible when first starting xPAP. However, the symptoms you're describing sound like someone not on xPAP at all, or at least not on xPAP that's working. Stop driving and get help NOW before you kill or maim yourself or a family on the road. It's good that you will keep using your CPAP. Which ideas in this bag of tricks will work for you?

1. Temporarily stop driving. Car pool, getting dropped off by a family member, public transportation?

2. Get help from this forum now, from replies to this post, and also read the articles in Our Collective Wisdom/light bulb icon, especially on machines, pressures, solving mask problems, Stages of CPAP and What Is Feeling Good?

3. Usually respiratory therapists are prohibited from giving you much information you need (if they even know it) and are required to refer you to your physician. However, make an appointment with the RT asap and see what results.

4. Some physicians, even sleep doctors, aren't that familiar with the intricacies of xPAP treatment. That's why your own xPAP management and information from other patients are helpful. However, make an appointment with your doctor asap after seeing the RT and see what results. It's good that you're taking primary responsibility for your treatment.

5. Learn from this forum now or a clinician's manual how to access the machine set-up menu (see two articles on pressure) and check the accuracy of the settings against your prescribed pressure. The main reason I was feeling so bad in the early stages of xPAP is that the RT set the machine up wrong, for a split night study, giving me only 4 hours of PAP a night. She made this prescription error twice. I had to set the machine myself.

6. If you have a machine without software capability (beyond compliance), neither you, the RT, or the doctor knows what's going on (see article on machines). What is your AHI overall? Do you have an APAP so you can see how your AHI changes under various pressures? Does your mask leak excessively? You may need to get a fully data capable APAP and software. You'll need a prescription for an APAP and to buy the software on your own.

7. When I first started APAP, the effects of dropping my denial of sleep apnea were huge. It was like a house of cards collapsing. I needed to make up a huge sleep deficit. Can you temporarily reduce or change your work hours? Sleep as long as you can with no alarm to wake you? Take an afternoon nap on xPAP? Take a short vacation or leave of absence while dealing with this excessive fatigue and sleepiness?

May the problem-solving genie come to your assistance. There are lots of them on this forum.

MHS

If you are mouth-breathing at night your therapy is going up your nose and out your mouth, and not splinting open your throat. Hence, no therapy.

Black_6

I have only been on my Apap/xpap for almost one week so take this as a grain of salt from someone that's just started. I had severe OSA AHI=58.9 . Before the Apap I got through the day without ever feeling tired except for the first 3 hours when I first got out of bed every day. Everyday I woke up and had brain fog and I had no energy till pounded down three big cups of coffee at about 10 am. Then I was good to go for the rest of the day and didn't even want to go to bed at 1 AM. Each night was poor sleep but never did I have problems of falling asleep during the day.

Now after almost one week on the Apap I am going to bed early since I get tired about 10 PM instead of the 1 AM before. I wake up fresh every day but I don't have the endless endurance that I had before the Apap. However I am more active now than I was before the Apap so I think I am getting tired by working my body harder.

Physicologically I use to hate to go to bed it was my enemy and I have even said I hate sleeping. Now I want to go to sleep. I don't have your answer but I been thinking this is really weird also to wake up feeling great but not have that endurance at night. All I can say is I am working harder now when I was more lazy during the day before the Apap. Maybe I will be normal someday soon but I feel what you seem to be going through.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): AHI, APAP

If we knew what machine you have, what mask you have and what your prescribed pressure is we could help more. Would you click "Profile" at the top of the page and fill that in? There is lots of help here.

Black 6:

Unless you have a full face mask, I would bet money that you are losing therapy because you are mouth breathing.

Did you get specific results from your doctor about what sleep position most of your apneas occured. Mine (including central apneas) happened about 95% of the time when I was sleeping on my back. I also notice that even now with CPAP, my numbers are better when I sleep only on my side.

You might see if sleeping on your stomach or side will give you abetter nights sleep. Also, look into the mouth breathing.

I have been on CPAP for almost 4 years now and I still have good days and bad days. I have found, however, that when I tie a tennis ball to the back of my sleep shirt (so I cannot sleep on my back) I feel much better the next day.

Also, your doctor may need to tweak your pressure. It may not be high enough yet or it may be too high and is causing central apneas.

Trust me when I say this is not an easy process but it is well worth it once you get the bugs worked out of it!

Another thread strongly pointing to the importance of having data and using it to assess causes for symptoms. We can speculate all day long, but if you had data, you'd know if you had leaks, high AHI, effective pressure range, etc. Maybe complete your profile so we have a better idea what equipment you are using.

[quote="Sleeprider"]Another thread strongly pointing to the importance of having data and using it to assess causes for symptoms. We can speculate all day long, but if you had data, you'd know if you had leaks, high AHI, effective pressure range, etc. Maybe complete your profile so we have a better idea what equipment you are using.

Thank you all for the responses. I realize there is a lack of information, that is merely because I am at work and do not have the information available. When I get home (pending I do not fall asleep taking my boots off) I will update my profile with the necessary information.

As for the speculation of mouth breathing, I can safely say that that is not happening. The machine wakes my wife up a lot, and she has told me that I have my mouth closed. The other reason is that I am acutely aware of when my mouth does open, this has happened only twice, and each time it woke me. The angle of my head forced my mouth open. Since then I have rearranged my pillows to keep my head at the proper angle.

As mentioned, I will post the stats upon return home this evening.

Thank you all,

B6

I was so exhausted during my first six weeks of therapy, I cried all the time, I couldn't see straight, wanted to hit EVERYONE, and had to take lots of time off work. I finally begged my doc for something to help, and she gave me Provigil. A lifesaver. I could only tolerate 1/2 a pill.

I also discovered a mask that fit after 8 different masks. That and the Provigil got me over the hump to full compliance and feeling normal in the AM.

Try everything you can. Definitely look for a mask that allows you to side sleep. Back sleeping is bad for OSA sufferers - makes it worse.

You can read most of my story here:
viewtopic/t23207/Babettes-Nasal-Aire-II-Tip-Sheet.html

Good luck!
Babs

So I have updated the information in my profile with the exception of the software. I am not sure what it is other than what came loaded. This unit was given to me by my service provider as was the nasal pillow system because I did not have the tendency to open my mouth.

Some basic information off the machine is;
Usage:
7 day average= 7:12 hours/night
30 day average= 5:24 hours/night

System leak:
7 day average= 30.0 L/M
30 day average=30.7 L/M

AHI:
7 day average= 1.6
30 day average= 2.0

Pressure= 9cm


From the sleep study;
Epworth Sleepiness Scale= 23 of 24

Arousal index= 19.2

Predominantly normal sinus rhythm

No significant change in blood pressure (normal BP)

Supine position= 80%

Right/Left side= 10% each

Prone position= 0%

Periodic leg movements= 16 (associated with 8 arousals) at a Myoclonus index of 3.5

No obstructive apneas, 59 hypopneas, no mixed or central apneas

Apnea hypopnea index= 25.7


I can post my pant size Qual and GT score if that helps.



Thanks again,
B6

Welcome to the forum, B6!

I'm sure others will have experience with the leak rate of your mask, and will comment on it. Your AHI looks pretty good. I agree with all of Mile High Sleeper's suggestions. Also, it would be in your best interest to purchase the software for your machine. Too many variables for a one-night sleep study to get the best therapy over a lifetime.

I, too, was Soooooo tired when I first started therapy. I often slept 12 hours on weekends, and went to bed at 9:00 on weekdays. For months I didn't feel "rested", but since I had the software and knew that my therapy was on track, I was confident that eventually I would pay back my sleep debt. It took about 4 months for me.

The user KTEAGUE wrote a very poignant post about the healing process after starting CPAP. I hope she won't mind if I quote her:

There is a certain "letting down the guard" for some who go on cpap and allow themselves to place hope in it. I think this leaves some new cpap users vulnerable to experience that crash, and once it happens, the body will require a time of healing and recovery.

Keep up your therapy, and give yourself as much time as possible to heal. This will mean cutting yourself some slack in any other area of your life that you possibly can.

Take Care,
Cathy

B6 - You have a complex sleep disorder, meaning not just apneas but leg movements going on.

I wonder if that has increased with treatment - usu. it will decrease when on cpap. Does your sleep study compare the difference?

I would say to tell your doc what you are feeling. Call to make an appt if you don't have one. They will usu. schedule you for another PSG to see what the leg disorder is doing after you get accustomed to cpap.

Data is gonna be a must for you to help yourself.

Maybe now you can see why so much info was needed to understand what is going on with you. The crystal ball has a crack in it.

Good Luck,
GumbyCT