Bad Night

[unadog]

I thought you might all enjoy this!

Until a week ago I was doing pretty well on my VPAP ASV. Then I changed my pain meds, my pain got a little out of control, my allergies started to get bad, I had insomnia for about 1 week, etc., etc. You know the story.

So here is the data from my attempts to use the ASV on Saturday night. Ten attempts that is - ResMed calls one start/stop session with a mask a mask event. Note the times for each:




I actually slept for 3-4 hours in the middle there without the machine. Of course, that is pretty poor quality sleep.

I told my wife in the morning that I had a bad night. She is totally unsympathetic. She said basically "I just sleep, then get up, and however I feel I don't think about it much." Of course she has no clue what torture these machines can be!

So I limped through the day, faking everything, pain out of control, drinking coffee, soda, so tired all day.

Then here is last night. I was dreading trying to sleep again, After 4 false starts - finally! And I feel pretty good today, pain is low, etc. Cheap thrills with therapy ...... now to get on with life.





Cheers!
Michael

[Pad A Cheek]

Michael,
I can relate to your bad night. When I first started out it seemed that I had one good night and 2 bad nights for a long time. Gradually the good nights began to outnumber the bad ones and the bad ones got less bad. It took me 6 months to LOVE my CPAP machine.
Now I go to bed, hose up almost without even thinking about it. Good nights most all the time now are the result of getting used to the whole CPAP experience. I cannot imagine sleeping for even 30 min without my mask. It has become almost psychological that when I put my mask on, my brain knows it is time to dream, and off I go to sleep.

I know for people just starting out that the whole CPAP therapy can be daunting at times, but do not give up. Persist and it will get easier over time. The other thing I learned, when you are getting better sleep some of the time, you begin to want that kind of sleep more and more, so it motivates you to learn and improve your therapy. CPAP is good stuff for those of us who need it. It works.

Karen

[kteague]

Michael, you have my sympathy with that terribly fractured night. Those who haven't lived it can't understand the misery. That 7+ hour night must have felt wonderful! I have been going thru a period of discontent. Rigged headgear methods that worked for years have become unreliable and cause more aggravation than sleep. Last night I slung it all off after 3 hours and moved to the recliner.

Having a change in treatment at the same time as a med change sounds like an adjustment nightmare. Hopefully it is behind you now, and you'll see lots of those 7 hour nights.

[unadog]

Michael,
Now I go to bed, hose up almost without even thinking about it. Good nights most all the time now are the result of getting used to the whole CPAP experience. I cannot imagine sleeping for even 30 min without my mask.

Karen

Thanks Karen!

That is actually where I **had been** until last week. I would sleep 8-9 hours on the machine, with maybe a 15 minute gap when I got up during the night. Heaven!

I have been on xPAP since Dec 18. I bought my own used machine when it took too long to get started with the DME!

I had Complex SA at my titration. When I still felt like crap around March 3rd, while waiting for another sleep study, I bought a Bipap, and then finally an ASV around March 26. And I started to sleep through the night for the first time in 20+ years! Yeah! (I'd estimate my improvement at: CPAP 15%, BiPap 50%, ASV 80%)

But I have chronic pain - one of the reasons for so many arousals, etc. - and it hard to stay balanced on the 5-6 meds I take. The docs are always afraid of overprescribing, so I am always undermedicated. Pain comes and goes with activity, lots and lots of pollen make it hard to breath through the nose, etc. So back to a week of hell after not quite a month of heaven!

Interesting, I had no events for only the 3rd time during that final 7 hour sleep! I actually took a sleeping pill - Ambien - both nights, which I had quit a while ago.

Best,
Michael

[edunhamfly]

I had a bad night myself last night which makes me a very grumpy person today. I was the one who posted the "WOW" factor at titration and have been waiting on another WOW factor night since. I have had a few good night sleeps and a lot more bad night sleeps. I have been on CPAP for 3 weeks now and I know it takes getting use to. I have nasal pillows which I love, but have discovered I open my mouth at night which is causing me to wake up. I did go out and buy some paper tape, but haven't had the nerve to put it over my mouth yet. The thought just kind of freaks me out. Since I am still within 30 days of beginning my treatment,I can go back and get a full face mask. I know it takes patience and I am willing to wait it out. But really.... is it asking too much for a good night sleep?? Thanks for listening, maybe I won't bite anyones head off at work now!

[unadog]

I have been going thru a period of discontent. Rigged headgear methods that worked for years have become unreliable and cause more aggravation than sleep. Last night I slung it all off after 3 hours and moved to the recliner.

Ah ktleague, I hope you can get past it soon! I empathize completely!

I actually fell asleep for about 40 minutes last night after whipping the mask off! Of course apneas then woke me up right away. I moved to my "Zero Gravity" chair to meditate, which turned into listening to music, desperate for distration. I finally felt like maybe I could sleep, went back, tried, failed, took an Ambien (which I hate, but ...) and **finally** got that beautiful 7 hours!

Up to then I was ready to kill someone, or at least go to the hospital and beg for something to knock me out!

Please hang in there - you know that we are all struggling with you! I'd tell you to call at 3 am, but I just might be sleeping! Cheers!

[DreamDiver]

Michael,

I'm sorry to hear you had a rough night. It sounds like pain is a major cause of arousal from sleep. I hope you'll be able to figure it out soon and get better sleep again without pain.

[unadog]

Thanks DD!

I was coasting along pretty well, until I ran out of some meds for a couple of weeks!

It happens every 3 months or so. I just can't stretch what they give me out to last the time it is supposed to last. And asking for more pain meds is always difficult, so .... you punt.

This was the first time I ran out since I got effective xPAP therapy. Sometimes I fool myself and think the pain is gone when the meds are effective - then I find out the truth! Not yet ....

Cheers, this is better than before ASV, no question! I hope you are finally making some progress? Damn sleep studies are a PITA. I couldn't wait for insurance!

Actually, to that point (that you made in another thread): The **best quality care** for CompSA would be to issue a temporary ASV for 2 months. Then step down and see if a CPAP Is sufficient for the 80% that stop having centrals. I am going to propose taht my docs do a study on quality of life to test that! Treat the centrals right away!

The lower cost option - the current practice - is to make CompSA patients suffer for 3 months, then if they still feel terrible, bring them back .... Rough on the patient that doesn't get over centrals right away!

What I am curious about too, though, is whether the centrals will go away faster than 8 weeks for the 80%, and whether they will also have a better quality of life when starting xPAP?

SWS or Muffy may know ....

Michael

[unadog]

I was the one who posted the "WOW" factor at titration and have been waiting on another WOW factor night since. I have had a few good night sleeps and a lot more bad night sleeps. I have been on CPAP for 3 weeks now and I know it takes getting use to. I have nasal pillows which I love, but have discovered I open my mouth at night ... I can go back and get a full face mask.

It is good that you had a taste of that "wow" factor! Hopefully that will keep you going!

I was congested at my titration and did best with a full face mask. So that is what I started with. With the mouth breathing, you may want to try one! Get the best therapy you can ASAP!

It took me almost 3 months to get a machine to help me more than 15%-20%. When I finally got the right therapy at 3.5 months or so, I felt that I was getting better every day! After 3 days I was starting to feel alive again.

Hang in there. Keep fighting! I am sorry for the bad nights, but there is clarity - somewhere - toward the end!

Welcome! Good Luck!

Michael

[fiberfan]

Bad nights are the pits for sure. I have had a few of them myself the last 2 weeks. I try to remember that at least the SDB portion of my sleep problems is usually well controlled.