Very sad and confused-need advice

Sleepless on LI · Post by **Sleepless on LI** » Sun Oct 30, 2005 6:54 pm

I never thought I'd be posting this topic, but I am really distraught over this and I figured I'd come to the people who are the best and the most caring. Please know this is a very rough decision and subject for me right now and I have debated over posting this many times for awhile. It took me a lot to decide to go ahead and make tonight the night I decide to do it.

I may be ready to perhaps give sleeping without my mask and machine a try. I was diagnosed as having a 4 HI only at the sleep study I had, no apnea events at the first study or the second/titration study. But I guess since I had 14+ PLMs and oxygen levels that dropped under 90%, they put me on therapy.

Loooooong story short, I have lost almost 20 of the 25 lbs. I needed to lose. If you recall, my ENT said there was nothing anatomically causing my OSA and thought it might have been the fact that I was a skinny woman my whole life and recently had gained weight. Told me to lose it and come back and see him.

Well, here's the problem. I am starting to feel pre-CPAP lately. I wake several times a night. I feel it's due to my equipment. I want to subconsciouly make sure it's positioned correctly, not leaking, plus it wakes me up, regardless of which mask I'm wearing. I don't know, but it would seem to me that there may come a time, if your episodes are so few pre and post therapy, when your therapy may make you feel worse off than if you weren't on it. I am concerned that this may be the point I'm at.

I did an experiment a few weeks ago where I set my machine to 4 cms. for the entire night for a bit over a week. My AHI's stayed in the 1.3-1.9 range, except for two nights that they were 3 and 4. In any event, if you judge the need for therapy by the number 5, I didn't need it any night. I no longer have headaches, maybe due to eating right and exercising now and the fact that I drink tons of water now, too, which I never used to do, and they say one of the number one causes for migraines is dehydration. And my borderline high BP was NOT helped by CPAP, but just recently by the addition of a water pill after waiting almost five months for the CPAP to bring it down. It never did.

I won't be able to get my insurance company to give me another sleep study so soon as the last one was just five months ago, at the very end of May, or I would go and see what they say. But this feeling of exhaustion that is setting in from the constant nightly awakenings is making me wonder if I'm really better off without the therapy at this point.

I have tried my machine on auto to see if the pressure may need to be raised, but it never even goes to my titrated range of 10. And my AHI's are consistently low.

I am not looking for excuses to get off CPAP as I had thought I was used to it, but if this is the reason I am getting exhausted now and I really don't need it, then maybe I need to give it a go without? I am very emotional about this. Don't think I am taking this lightly or that this is being looked at as something that isn't a major decision in my life. It is. I am very afraid of making the wrong move. And I don't have a sleep doctor, never did, to talk this over with so I am coming to the experts.

Please be gentle with your advice because, as I said, I am very fragile on this topic and have been debating this for a few weeks now and just am really torn up over it. But I would like to hear what you folks think about it, please. You know, those of you who have followed me since I got on this site, that I am one of the most pro-therapy advocates here and I also always believed a positive attitude is one of the prerequisites needed to succeed. My problem at this point is keeping that attitude and/or knowing if proceeding is the right move right now.

Thank you for listening.

neversleeps · Post by **neversleeps** » Sun Oct 30, 2005 7:03 pm

Yes, it is a rough decision, but one I'd love to be in the position to make! My 2 cents worth: stop using it. Stop using it for a whole month. Then, hook yourself back up for a few nights at 4 again and see what the numbers say.

I can tell you one thing for sure. If I was in your situation with your numbers, I would definitely hang it up for a while and then recheck occasionally just to make sure I wasn't hallucinating.

This is nothing to be sad about! You should be celebrating!!! I am so happy for you, but it just doesn't feel right for me to be happy for you if you're not happy for yourself!!!

Lori, you are one LUCKY lady!!!!!!

johnnygoodman · Post by **johnnygoodman** » Sun Oct 30, 2005 7:05 pm

Howdy Sleepless,

Let me slap a HUGE "Not A Doctor" sign on this post. This post is in NO WAY PROFESSIONAL, OR EVEN GOOD, ADVICE.

I see your problem as not being able to monitor your sleep without your CPAP. You did a test with 4 CM but even that is some positive airway pressure. What is your AHI without any pressure?

The only way I know how to get such an indication without a sleep study or an APAP w/ software is the Sleep Strip:

https://www.cpap.com/productpage/slp-sl ... study.html

Even this may not be a great solution for you because of how it outputs results:

# 0 - no apnea: comparable to a sleep lab AHI of less than 14
# 1 – Mild: comparable to a sleep lab AHI between 15 and 24
etc.

You are sure to draw a 0 if your AHI is as you say.

See what I mean? Bad advice!

Good luck to you with this hard decision.

Johnny

Guest · Post by **Guest** » Sun Oct 30, 2005 7:08 pm

Your AHI was low during the PSG yet you desaturated. That desaturation is why they put you on CPAP. This might be UARS, which many sleep labs don't seem to diagnose.

However, you suspect that you may not need CPAP because of the weight loss. I agree. You just may be correct. Since desaturation was your sole compelling factor for an RX of CPAP, why not sleep without CPAP but WITH an overnight recording pulse oximeter?

If you show no desats and you sleep better without a CPAP mask on your face then you may night need CPAP after your weight loss.

neversleeps · Post by **neversleeps** » Sun Oct 30, 2005 7:21 pm

Anonymous wrote:Since desaturation was your sole compelling factor for an RX of CPAP, why not sleep without CPAP but WITH an overnight recording pulse oximeter?

Smart, smart, smart!!!!
Boy, I was so giddy with excitement at the thought of CPAP being unnecessary that I totally missed the wisdom of suggesting getting a pulse oximeter. Perfect solution! Then you'd know!!!

Let us know what you decide!

RAMBLINMAN · Post by **RAMBLINMAN** » Sun Oct 30, 2005 7:22 pm

Well If I can add my 2 cents or maybe I should say 1 cent since I'm less that 2 weeks into this therapy....but I would have to agree that if your numbers are low and it shows your apnea is within aceptable levels, then yea I would stop for a while.

Why I say stop because I've also read that sometimes the numbers don't mean as much as much as how we feel. I myself being a technician believes in numbers and data to see if things work....but in this case if you stop with your device the only way to see if you'll need it anymore will be on how you feel...not to mention your partner laying next to you seeing if you snore.....stop breathing....or twitch in the middle of the night as well as the feeling when you get up.

One question Lori, you say you don't have a sleep DR to talk to....? How did you go thru a sleep study without a sleep DR?

Oh by the way....if you don't want any excuses to get off of this therapy....feel free to give me some of yours if you have any.....

Sleepless on LI · Post by **Sleepless on LI** » Sun Oct 30, 2005 7:34 pm

I have to say, I am tearful from the replies. I guess being tired has made me an emotional basket case or it's the stress I have had from keeping this dilemma to myself and finally letting it out and getting such support (like I would expect anything else from the people on this site). You guys always have been there for me since before I started this therapy and here you are still.

The thing that made me really let this out was, in another thread I read tonight, Christine, the RRT from Illinois, said something about 80% being a cut-off point, or that it was still normal at 80% or above for oxygen levels. I know my son, who is also an RRT, said at 80% is where they put them on oxygen when they're in the hospital. Mine were no where near that in my study. I am just so tired and if my numbers aren't supporting the need for therapy, that is what is causing this uncertainty.

I had a sleep study at my suggestion to my primary care physician after my son, who was in his senior year in college, majoring in Respiratory Therapy, kept hounding me to go because he felt I had OSA, not to mention my husband having to pick up his pillows and move to the couch some nights because I was keeping him up with my snoring.

I think the move would be to get a pulse oximeter and not use the machine and see what my levels are now. I think I will probably have to speak with my PCP about this and see if she can arrange for it.

I know you all think I must be nuts to be upset, but I got such great relief in the beginning and right up to about a month or so ago and never dreamed this would be the way things would turn out. I believe in the treatment and not only am I concerned about making the wrong move, but I never thought I would be leaving it all behind.

I want to say thank you from the bottom of my heart, sincerely, for the encouragement and help the people on this site have always given to me and all information that was made available for me to learn. I stll have a long way to go to catch up to some of the members here and probably never could, but I will repeat again how blessed I feel I have been to find you all. Okay, enough of this because I am a very emotional wreck right now and I'm getting myself a bit teary again. Just know I am very thankful for you all.

dsm · Post by **dsm** » Sun Oct 30, 2005 7:36 pm

Lori,

I think everyone is thus far saying "follow your own good instincts"

Go for it - have a break & if you want to salve your concience get a pulse oximeter & it should be happy

Goodluck - you are the one to make the decision & it is neither life threatening nor irreversible. Not a hard one at all. But do stay around

Cheers

DSM

ProfessorSleep · Post by **ProfessorSleep** » Sun Oct 30, 2005 7:39 pm

Wow - what motivation to lose weight! Though with an AHI of 72 and 95 arousals, and a history of sleep problems since my skinny kid days, I'm not optimistic. But I'll take the motivation anyway!

Agree regarding the oximeter, if possible. Other objective factors to consider would, of course be snoring and limb movements. Anyone who can help you monitor those points while you sleep? Those things could contribute to poor sleep architecture and possibly some sequelae of sleep-disordered breathing. But hey, with your numbers, I'd consider myself quite normal, as long as the sats are ok. Way to go!

neversleeps · Post by **neversleeps** » Sun Oct 30, 2005 7:41 pm

dsm wrote:Goodluck - you are the one to make the decision & it is neither life threatening nor irreversible. Not a hard one at all.

Dang it!!!! I didn't think to say that either.

Lori, what he said!!!!!

Swordz · Post by **Swordz** » Sun Oct 30, 2005 8:09 pm

I'll 2nd the advice to go a month and come back. I just hope all works out for you, because you are definitely one of the pillars of this board. (One of the rare positive influences that keep alot of us people going.)

If you drop off here, who am I going to make fun of for being old? Or who's going to do the yearbook?

Jere · Post by **Jere** » Sun Oct 30, 2005 8:21 pm

Sounds like you have little risk by taking a CPAP-vacation.

The goal we all share on this board is to sleep well. If you are lucky to be in the position to sleep well without all that equipment plastered to your face, then I don't see this as a hard decision at all.

Sleepless on LI · Post by **Sleepless on LI** » Sun Oct 30, 2005 8:23 pm

I am going to make a promise to you, Swordz, and to all the friends I feel I've made here. I am not going anywhere. Even if I do happen to end up getting off the machine, which I'm not sure is going to happen yet, or ever, I will still stay on these boards. I appreciate your characteristic of me being a "pillar" which I can't say I agree with. But one thing I can admit is that I have always felt very positively about the therapy and have tried to share that feeling with anyone I felt needed a little propping up. Tonight, I guess it was my turn for a little propping and I am not being disappointed by all the support I am getting.

I believe in the therapy. I saw what it can do firsthand. Who knows if how I'm feeling (tired) even has anything to do with the therapy and is not going to turn out to be something unrelated. Won't be the first time I attributed what was happening in my therapy to how I was feeling and been wrong. I just know there was no way I could have gotten where I am today without having been on CPAP. Whether the weight loss has helped alleviate the need for it or what, or if I can even get off it right now, still remains to be seen. I think, as everyone has suggested, finding out what my oxygen levels are without therapy is crucial and that is the direction I am going to take.

I knew I came to the right place for guidance and support. And still, to this day, five months into my treatment, I have the same opinion I did, maybe just further reinforced, that this is THE place if you have OSA to be. I wouldn't have survived these past five months in the same manner if it hadn't been for cpaptalk.com and the people here. So you can't get rid of me that easily, on or off the therapy.

KMoore · Post by **KMoore** » Sun Oct 30, 2005 8:43 pm

Lori,
You do know what you need, just sit quietly and listen to yourself. When you are tired it is hard to make tough decisions. It is so hard to see when you are so close, but some times it is right in front of you and you just need a little boost in the right direrction to do what needs doing.
Give it a try, what have you got to lose for one night, and maybe you have everything to gain.
Freedom from the encumberances that constitute Sleep Apnea Therapy, I don't know of many of us who would turn that down. Good on ya that you were able to lose the weight and perhaps regain restful sleep. You will never know until you try. And an oxygen monitor, will give you a real concrete answer, but don't wait till you can get that. Common sense tells me that with such low numbers, one night is not dangerous to you.

Hope this helps some how, I know I ramble.

felineperson3 · Post by **felineperson3** » Sun Oct 30, 2005 8:46 pm

Lori,
I'm going to do for you what I do for myself when I'm faced with a decision and that is to say prayers for you that the Lord will lead, guide, and direct you to the decision that is the best for you and your health. When you reach the point that you feel an "inner peace" about your decision I think you are there.

Whatever you decide it has been great getting to know you through your kind and caring posts which are always so encouraging and helpful. You are one great gal and I feel privileged that you crossed my path.

May God bless you and do keep us updated.

Mask