sleep study torture

I am overwhelmed with gratitude.
Thank you.
Zoocrew, what a comprehensive and time consuming answer. You are so thoughtful. Thank you. As are the rest of you. I am grateful for your words of wisdom and the expressions of sympathy, but I feel a bit bad about that because I did not want it to be about my son...but it sort of is. He was 30 and beautiful. To say we had a hard time getting along would be an understatement. He had a substance abuse problem, a compromised immune system, didn't take care of himself, and died from septic pneumonia. I have unresolved issues with him. I started taking antidepressants in order to cope, this is when the apnea peaked. I am off them now because they made me gain weight. I am taking some herbal things and am in talk therapy and I exercise.
Truthfully, part of my problem with cpap is I am have what is called complicated grief. Yea, that is a real term and a real diagnosis. I think the apnea flared because I was trying to die of a broken heart. Darn! My husband wouldn't let me!
I know in my heart that I always had it, it just got to the point where it could no longer be ignored. It is also true that it probably contributed to my weight gain.

Thanks to all of your encouragement, I had a great nights sleep last night for the first time since first starting cpap. I bought this weekend a mattress topper, a side pillow and pure white sheets. I remained calm knowing I had all of your support. I slept for 7 hrs without getting up to use the bathroom. That is a miracle. (I usually get up 2-3 x per night) And, the ahi was 2.6. The thing was set at 6. Isn't that pretty darn good? Now, the next goal is to dream, wouldn't that be fantastic?
Zoocrew, I am not that tech savvy, but I will try to get these reports on with my husbands help in a couple of days, we have to work now so cannot now. It is sort of wonderful that you are here and willing, but a bit sad I could not get the information from the Doctor or all those Respiratory people. Peace to you all. You are fine individuals with big hearts. Thank you for your time.

Reneee wrote: I forget which one of you said that you could get used to high pressure and not feel it. I am happy for you if that is your goal, but the reasoning escapes me. Could someone please explain why I would want to? If I was at zero with a 6 pressure, isn't that the goal? Why can't I understand this concept? I feel so stupid.

You usually want the lowest pressure that will control your apnea and give you good treatment.

Some people find that this pressure feels too high and is uncomfortable to them. They feel like they're trying to breathe into a hurricane. I'm pointing out that even if the pressure you need feels uncomfortable, you will usually get used to it and you'll be able to breathe easily after you adjust. It may take a few weeks. You may need to start at a slightly lower pressure and slowly increase it over the course of a few weeks.

The point is that you will probably eventually get comfortable with the pressure you need, not that you should go to a higher pressure just for the heck of it.

Reneee wrote:I also think that the Dr. does not really listen, although he is a neurologist and a smart guy. I feel like that I gave him tons of info and he just sort of patted me on the head and sent me to be a lab rat. If he had been more open with me and told me what he was trying to accomplish, then I would have had an easier time understanding what was going on. Thanks again, Reneee

Just because of the paragraph above, I'd say you need to find another doctor. No one should go to a doctor who feels the doctor is patronizing them, and/or won't consider what the patient is trying to accomplish. When my doctor suggests something that I don't care for, I have a reasonable discussion with him about it and we agree on a solution. Everyone should be able to do that, or should find another doctor.

I am a newbie here, but feel the need to jump in here, Reneee. I am disabled and have had many, many doctors in my life (I'm 61).

I agree that you could use a more supportive doctor. If your doctor is patronizing you, please go to another doctor! Finding the right doctor may take some time and may involve some travel and expense, but once you find the doctor that "clicks" with you (one that will really listen to you and take you seriously), all that effort to find her/him will be well worth it.

You need the support and care of a doctor, not the other way around!

Please stick around and let us know how you are doing. There are so many very knowledgeable people here that will help you, and then there is me, who knows next to nothing but cares...

Phil

Reneee wrote:... Thanks to all of your encouragement, I had a great nights sleep last night for the first time since first starting cpap. I bought this weekend a mattress topper, a side pillow and pure white sheets. I remained calm knowing I had all of your support. I slept for 7 hrs without getting up to use the bathroom. That is a miracle. (I usually get up 2-3 x per night) And, the AHI was 2.6. The thing was set at 6. Isn't that pretty darn good? Now, the next goal is to dream, wouldn't that be fantastic? ...

It really does take a while to adjust to the therapy. VERY, very few doctors and DMEs do the work they should to help us learn to live with CPAP therapy. They just sort of toss it over the wall and if you're lucky they say "Good Luck!".

As to the idea of not needing it ... You might be one of the lucky souls that does not need CPAP therapy if you loose the weight. You also might not. But it will help improve the effectiveness of the therapy. Sometimes people don't need CPAP if they loose weight. But most of the time, it just does not matter.

For example, I was underweight as a teen, but I distinctly remember my sister telling me that I snored just like "Grand dad". I'm not certain that he had obstructive sleep apnea and that it killed him early. His heart just gave out at about age 62. So, even as a teen I had obstructive sleep apnea - and I was WAY underweight at the time.

So, weight sometimes does not have an impact on the sleep apnea.

But more important than getting off the CPAP is loosing the weight because of the detrimental impact that extra weight has on your health. THAT will help you feel better more than just about anything else you can do.

As others have noted, it takes time for your body to adjust to CPAP therapy. It's not natural to sleep with a leaf blower! .. .. But you will adjust to it. And you will find that you will sleep more deeply than before ... and the dreams will return. Hang in there! And let us know how you are doing.

Reneee wrote:I had a great nights sleep last night for the first time since first starting cpap. I bought this weekend a mattress topper, a side pillow and pure white sheets. I remained calm knowing I had all of your support. I slept for 7 hrs without getting up to use the bathroom. That is a miracle. (I usually get up 2-3 x per night) And, the ahi was 2.6. The thing was set at 6. Isn't that pretty darn good? Now, the next goal is to dream, wouldn't that be fantastic?

Great job. Yes, that AHI and your report of sleeping decently is pretty darn good.

You know the nighttime pee breaks every hour on the hour was the first sign that my cpap therapy was doing what it was supposed to. The second sign was the absence of the every morning killer headaches upon awakening.

When I first started therapy I read about all these people who just "loved" their cpap machine and to be honest I thought "what the heck are they talking about". While I was okay with using all this stuff on my face I sure couldn't see "loving" it.
I still can't say that I "love" it but I accept it as that's the way it is going to be. Would I rather not use it? Sure but it is what it is and the alternative is not very pleasant. This will get easier for you with time and experience.
You may never "love" it but you will come to accept it for what it is.

A newbie a while back said something that really stuck in my mind so I will offer it to you now.
"It's not about perfection....it's about progression"

Yes, there will be bumps in the road and we are all here to help you past those bumps. As you can tell some of us offer a helping hand and some will offer a swift kick in the behind...all depends on the perceived need. It is the way this family here is.
Some of us are helping handers and some of us are butt kickers but all of us care that you make a success of this therapy and want you to have the least amount of problems as possible.

I'm sorry for your loss, too, Reneee.

I'm one of those that thinks it is possible to be cured of OSA with weight loss (this despite the fact that I am thin and have OSA). Obviously it won't work in every situation, or perhaps even most (who knows), although there is no doubt whatsoever that losing weight will improve your health otherwise. I say wear the CPAP while trying to lose weight. If you lose the weight and your OSA is gone, terrific! If it's just improved, well, good. If it's just the same, I doubt if you'll regret having lost the weight! I believe you mentioned that it's hard for you to lose weight, as it is for most people. There are several threads on this board under different names where this is discussed (e.g., search for "low carb"). In many people's opinion here, this approach is easiest to comply with, and most effective.

Good luck!

Just a note about changing doctors. Some relationships are worth salvaging, some are not. I had one sleep doctor, when I challenged him about my needs not being met, he turned into something really ugly. Another doc, when I expressed my disappointment that they hadn't yet been able to help me, they saw how desperate I was to get better (not just whine) and became everything I could hope a doctor would be in partnering to improve my health. If changing doctors is a hardship for you, it may be worth seeing if your doctor is willing or able to do better. I have to admit, my approach was better with the 2nd doctor mentioned.

Renee,

I am glad to hear you had a great night! I however, had a bad night lastnight. Lastnight was my 4th night of treatment and at about 2am I lost my mask for 3 hours. I am not sure if it slipped off or I got mad in my sleep! I am feeling it today! I have been feeling tired all day.

Before my CPAP machine I could get a bad night sleep but have energy in the morning but it was difficult to make it thru a whole day without feeling heavy eyelids. So I am hoping this machine works for me. I sure hope it makes me a believer as I am giving this thing a fair chance to work. I hope you have many, many more good nights.

Yo

Ok, great comments. Thank you so much to you all. If I never got diagnosed w/ sleep apnea, you are the people I'd like to know. Is this a great country or what? Actually it is a pretty great world. All of your comments about Dr are well taken.
wiguy, you have no idea how many times I have sent my mask on a free vacation!! See if you can get the thing to not get too cold, tight, or loose. Make sure there is distilled water in the humidifier, and the hose comes over the back side of your head board if this is possible. Make sure your blankets, sheets and pillows are just right. Say lots of prayers and think good thoughts. If you have bad apnea, keep trying. Try seeing about your vitamin D3 level. I get sun all the time and mine was low. I swear since I started take lots of it, the weight started to come off. I guess the bike riding helps too.

Now, here is the weird thing that happened today. I had a phone appt w/ my Dr. I asked about the blast up to 13 at the sleep study. He said because of my original oximeter reading (home study) of 85 then subsequent study of 18 (home study) with Provent, that he was pretty convinced my apnea was severe and not treated well enough by any other treatment other than cpap. I said that I had offered him my chip from my machine to show that I was treated well with a pressure of 6, with a zero ahi. He then said my home machine, despite the fact that it is brand new, the latest model, was not reliable as far as data was concerned. Ok, I said, so why is the oximeter which is a portable test done at home, reliable? I can't recall the answer. I get kind of frustrated when what I think is logical is not listened to. It makes me feel kind of dumb. He said he'd get back to me in 2 weeks with all the details of my test. To his credit, he tried very hard. I am not blaming him.
Well, the weird thing is.....10 minutes later, I got a call from another Doctor, in another near by city who is a part of the same system. She was so unbelievably different. She said she wanted to tell me the results of my sleep study! I was really surprised. I guess the sleep lab sent the results to her, and she interpreted them. She said she suspected that my original oximeter test was wrong, because the test put me on low pressure on cpap, and I did well, that the bi pap did not work at all, and the time that they pushed up the pressure gave me more events. Bottom line is she said that she suspected that I would be a candidate for the mouth piece, and that they would do another study with some sort of temporary one to see if it worked, then have one made by a dentist especially for me. This will not happen for two months, because that was the first available appointment. Sooooo.......I want to try, and try to lose more pounds before then to try to make it work. With all of your help and support, I know that even if it does not work, I can handle all of this. I will be much more cooperative if I know that this was not caused by my over weight, but by my anatomy. I am humbled by the love and acceptance I have received here. Even though I don't dream at night, the thoughts and kind words of all of you are dreams enough. Angels, all of you.

Being the cynical person that I am, I would want to know if the so-nice second doctor had an investment in the mouthpiece company - while it might work for some people, it's not the 'gold standard' treatment for apnea and doesn't necessarily provide the same level of therapy at all. Be careful with your money and your health.

SleepingUgly wrote:I'm one of those that thinks it is possible to be cured of OSA with weight loss.

I don't think any of the sane people don't think it's impossible. Even if it doesn't cure your apnea, many of us would benefit from the weight loss.

What is insane is to put off CPAP while you try to lose weight. Successful weight loss is very rare. CPAP may make it easier to lose weight.

Ha ha ha ha....I thought the same thing, but I thought I was paranoid...but I also thought the same thing about cpap...there is a whole industry around sleep apnea....really makes me wonder. Anyhow, I will continue to work hard at using my cpap, and will probably keep it even if the mouth piece works. I don't think I will ever be totally free of it especially as I grow older. Thannks for your comments, points well taken!