2nd sleep study maddening!

First sleep study showed "severe" OSA with 90 episodes during night with longest being 41 seconds. CPAP was not put on because, per nurses, I did not have any episodes before 1am. Dr. ordered a second study to be performed 1/2 without and 1/2 with CPAP. I figured if he ordered it then it would be done. I had stopped night pain medications slowly following first diagnosis and was eager to see if results w/o CPAP would show milder apnea due to meds not relaxing throat. First nurse was practically hostile from the minute I walked in and said they don't help patients with CPAP. Second nurse assured my husband and me that they'd be able to assist with the CPAP. I have had it for two months and have struggled but not adjusted. (Variety of situations: burning and redness and swelling of face; strong feeling of not being able to exhale completely <10 pressure>; awakening feeling woozy; loss of seal whenever I toss and turn, which is often, thus awakening me and negating reported good effects of CPAP.) I awakened about 1am and figured nurse would be in soon to start CPAP. Awoke again at 3:45 and nurse told me computers would be turned off at 4:30 and I could get up if I wanted. I tried to go back to sleep but just sobbed. When the nurse came in to disconnect me and asked if something was wrong, I said, "I feel as if I have been condemned to strokes and heart attacks." Inappropriate. Unkind to say. It is just such a costly test and they were firm that they couldn't see why I needed 1/2 and 1/2. I countered that who am I to say why the doctor wanted it. If they didn't understand it, they could have called him. They were then firm that I didn't qualify because I again didn't exhibit symptoms before 1am. I thought doctor's order would override that. It one has 90 episodes during the sleep period, wouldn't it make sense for some of them to occur before 1am? What do I know? I am venting. I am so disappointed. I feel as if I am lost. I want so to get a handle on this and I am not doing it. Maybe I was counting too much on the nurse's input during this second study. I have to figure it out. Thank you for "listening". ....... Sharon

I know this probably doesn't help but I have found the whole medical services experience like wading through treacle. No information given and people working in all directions and I am a nurse working for the NHS Just what you don't need when you are too tired to think.

I found this board yesterday and being aware of others in the same position helps.

I do hope you get some sense.

David

Sharon,

What's magic about 1:00 am? Is that when the nurses go "on break" for the rest of the night?

Sounds like you already have a cpap. How did you get a prescribed pressure if they didn't hook you up to the cpap during the first sleep study?

Was your second sleep study ordered because of your lack of success with your machine?

Maybe you could just get an auto-adjusting cpap and see what pressure works for you at home.

As far as the mask problems, what mask are you using? In many cases there are better choices than the standard masks given out.

Sounds like you have been served poorly in getting you started on cpap, but there's no reason to give up yet.

Post a reply with the particulars about the equipment you have and maybe those of us on the forum can give you some suggestions to take to your Doctor and try to get equipment that will work better for you.

I had a similar, but not as severe experience with my two sleep studies. Ultimately I managed to get the equipment that works for me.

Your sleep study sounded like mine in many ways. I went to an actual sleep lab at a hospital, but the first test was HORRIBLE! They had me in the room next to the nurses or techinicians station & they laughed & giggled & talked LOUDLY ALL night! Plus they had the audio on for the different rooms & one man was snoring,snorting, wheezing & gasping for breath so much it about drove me insane! I could hear everything. I barely slept all night, so didn't get to have the mask trial or anything. I felt like crying, too. I did after I went & sat in my car & debated on whether I could stay awake on the hour & a half drive home. My dr. wasn't too happy about the nosie at the clininc, so on my second test they put me way down the hall at the end, but were very RUDE to me, I suppose because I had "told" on them. They rubbed raw spots on my scalp (to attach the electrodes to) & cinched the chest belt so hard it brusied my ribs & they hurt all night. Again, they refused to put the mask on me because I couldn't go to sleep. I ended up sleeping very little again, but in the 30 minutes I slept, I had 27 episodes. My dr. was convinced of my apnea even without the tests, but to get the insurance qualifications, they require you meet certain standards. What a bunch of hooey! Anyway, I do hope you can stay on your machine & get it all figured out. I about died when I saw the bill! My insurance paid over $6,000 TWO times! That was just to the sleep lab!

Wow! What experiences. That hospital should be sued out the you know what!

I'm now thanking my lucky stars that my test went the way it did. I see I had it great compared to you two.

But, Sharon, I hope you answer "Wade's" questions. Someone will help. I'm new, only had my machine five days. ....Had anyone mentioned a BiPAP? That was prescribed for me, I'm told probably because of the high pressure needed for my apnea. But maybe the auto cpap is good too.

And Sharon, I cried at the end of my test. Near the end of it, I was struggling so hard with the mask, I burst into tears. So I know a thing or two about crying during these things. But someone on this forum suggested I was probably having a tough time during the end because they were testing pressures even beyond what was needed for me. And the results of the sleep test showed that. Be sure to ask for copies of sleep test reports. They are your right.

Those rude "professionals" don't deserve the title. Their treatment of you is not normal, not right, and they ought to be taken to task for it.
Hang in there.

Linda

Sharon:
Breaks my heart to hear how you were treated; please hang in there and keep advocating for yourself. I have learned SO much from this forum and feel really welcomed by the others on the forum. Share your experiences, ask questions and draw support.
I know this sounds all touchy-feely, but so what? Being diagnosed with OSA, or any medical problem, can be a huge emotional crisis (it certainly was for me) and we need to have the courage to do whatever it takes to get appropriate treatment.
Be well!!

I would complain very loudly to your "INSURANCE COMPANY". "Yep, you heard me correctly...." They are paying the bills so they should know how their money is being used (abused). I would also speak to the CEO or President of that particular medical facility. This type of treatment (or lack of it) does not sit well with Top management. "Venting" here in the forum is great medicine for your feelings but venting "Face-to-Face" with one of the "Big Shots" will solve most problems.

First, thank all of you for your kind replies. Second, my doctor was puzzled too as to why and how he ordered a CPAP for me and indicated a pressure without my ever having had the CPAP during the sleep study. That plus my not adjusting had him order a second study. Now I have not had the CPAP a second time, and we are still in the dark about pressure. The one informative nurse suggested that pressure might be too strong. Respiratory therapist is scheduled to visit this week, and I will discuss with her the pressure and possibility of bi-pap or auto-adjusting machine. Also have an appt. with the doctor who read the study for a fuller explanation of what is going on and his take. I will get a copy of the second study, thank you. I don't know the names of all the face masks I have tried. There is the larger V-shaped piece that seems to work the best but raises welts on my skin. There are the nasal pillows, both medium and small which come out during the night when I pitch. The medium is a tight fit, enlarging appearance of nostrils. There are the medium and small smaller nose pieces which look like little almost V-shaped cups. There is the piece that looks somewhat like an oxygen conduit with two slender tubes that meet under the chin and which has an insert for each nostril. (My doctor said this one was not appropriate. It blows out anyway, possibly from backup of pressue due to deviated septum.) I sometimes feel as if I am suffocating with CPAP on, as weird as that sounds. Maybe appt. with respiratory therapist and sleep study doctor will assist. I'll let you know what goes on. Again, thank you so much for all your kind remarks. ...... Sharon

I am puzzled about your experience. To me this it is normal to test with and without the cpap. Sometimes the test is split into two nights, one with and one without the cpap.
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Without the cpap is to determine if you have the apnea or not. With the cpap is to determine what pressure eliminates the apnea. When I recently had another study I had great difficulty falling asleep without my cpap, but am still having 89 episodes (I presume per hour) without the cpap.

Were the nurses who did the tests sleep techs? Were they trained in polysomnography? It sounds as if your testing was an expensive nightmare.

I hope your problem gets resolved soon.

sharonokc

My experience was a little different. I have recently been to a sleep study within the last few months and after the first the doctor called me and said that I had an apoenic event 9.5 times and hour. I am suprised they could find this out since I only slept for 3 hours.
The nurses were very loud during my study and I am a pretty light sleeper so they kept me awake. I also heard a man coughing like he had a hairball all night. It was terrible.
In order to avoid having to complete a second sleep study because of cost and annoyance I asked my doctor if there was a way he could just perscribe a CPAP for me since he had told me that I had SLeep Apnea from the first sleep study.
He said yes and that he could help me find a cheap machine since I had no insurance. I did a little research and found out about Auto CPAPs which can adjust themselves to your pressure. I called and asked him about that and he said that would work great for me and for me and he would write a perscription if I had a particular brand in mind. I told him that I liked the features of of the Respironics REMstar Auto and he wrote a perscription for that and faxed it to cpap.com so I could order it. I have been told by others that I saved a few thousand dollars by getting supplies online instead of relying on medical suppliers. Is this true?

Also another thing that is bothering me is that when I forst saw the doctor I told him that I had been experiencing jerking movements while I was trying to go to sleep such as my head would nod back and forth very fast for a few seconds and my shoulders would jerk. He didn't really seem to say anyhting about it but when I had my slep study he said that the results should I had Restless Legs most of the night. He said they may go away when I use the CPAP.
Shortly after I got the CPAP in, I was still having trouble with the jerking movements and called the doctor and he perscribed Clonazepam 0.5 mg. This seems to be a very small dose and it has not seemed to make any difference in the movements.
What should I do?

Wow and I thought mine was bad. I did complain to my insurance co, my Dr and the sleep lab itself. I was treated like a queen the 2nd time. We have to stand up for our selves no one else will. Don't give up the fight for good sleep. I hope things will work out for each of us.

I am sorry that you had a bad experience. I didn't realize how lucky I am. It is a long story, but I have become Deaf in the last 13 years.

So when I went to the center I explained that I needed to see their face. The young man came in and would ask me to LOOK UP...he came back in..LOOK DOWN. .etc. He was very polite.

I didn't hear anything! Ok you can laugh here!! I stop breathing 80 times an hour. The test started at 10:30 or so and by 1:30 the tech was coming in to turn on the machine. He said he had to watch for two hours before he could do anything.

What I would suggest is GO TO ANOTHER CENTER! I drove 1 1/2 hours to get to mine. My experience was good I think. My insurance covers it all..so far anyway. I am severe apnea.

I wish you well. I told my doctor how nice the young man was. TELL YOUR Dr your experience!! This way he/she can help others.

onemorething