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Some advice please.
I have been on a bi-pap for almost 2 years now. It took me a year to get use to the pressure and problems associated with the therapy. I have been faithful and wear it anytime I sleep. In fact I can not sleep without it. It has helped but, I'm maybe only 60% better and seem to be going down hill sometimes. Some nights I seem to sleep right through the night hardly waking up at all and other times it seems like I'm constantly waking up for very short periods. Lately I have been falling asleep after I read at night to the little one again.
I don't believe that I have a problem with air leaks. I don't snore anymore, so say's the family. I have a Resmed Vpap lll with compliance only info. Wear a full face mask. I have seen the respiratory therapist and they put me on Ropinirole for PLM/RLS as my sleep report indicated moderate PLM and I used to experience RLS quite a bit in the evening before bed and I don't very often now. The Ropinirole gave me insomnia and constipation so we stopped that medicine. I asked for another sleep study to get to the bottom of the continued sleepiness and irritability but they sent me to a sleep doctor instead. This doctor put me on a different medication for PLM/RLS, Pramipexole.
The first night on the new med I had trouble getting to sleep and the next night my legs kind of hurt at night and I've had this spasm in my arm for 4 days now. I stopped taking the drug even though he said to up the dose after 4 days if it does not seem to work. I know I didn't take it for long enough.
My problem is this: I don't really want to take a drug that I don't even know that I really need. I don't like that they are treating something that they don't even know for sure is causing me problems. They are only guessing. Can I insist that they do another sleep study??
I can't say that I really understand the information on my original report. Some of it says:
Split night study. First half baseline study established OSA and hypopneas with an RDI of 91 per hour (AHI of 88 per hour) and oxygen desaturation to a nadir of 76%. PLM normal. Loud snoring recorded. In another portion of the report it states that the PLM is Moderate with PLM index of 24.7 with a 1.7 arousal index.
Respiratory information: Obstructive events 6 apneas, 45 central apneas, 8 mixed apneas, 35 hypopneas, and 9 RERA's. Total AHI was 26.1, RDI of 28.5. REM sleep accounted for 53.0 mins with a REM related AHI of 0.0 and a REM RDI of 0.0. 51.5 mins of sleep was recorded while supine for an AHI of 54.8 and RDI of 61.7. REM/supine indices were AHI 0.0 and RDI of 0.0.
Is that a lot of central apneas? Shouldn't I be on an A-pap machine?
Total of 661 episodes of snoring and the patient spent 6.7% of the total sleep time snoring.
WHEW! That was a lot to write. I don't have a scanner!
Thanks in advance for the advice,
Janet
I don't believe that I have a problem with air leaks. I don't snore anymore, so say's the family. I have a Resmed Vpap lll with compliance only info. Wear a full face mask. I have seen the respiratory therapist and they put me on Ropinirole for PLM/RLS as my sleep report indicated moderate PLM and I used to experience RLS quite a bit in the evening before bed and I don't very often now. The Ropinirole gave me insomnia and constipation so we stopped that medicine. I asked for another sleep study to get to the bottom of the continued sleepiness and irritability but they sent me to a sleep doctor instead. This doctor put me on a different medication for PLM/RLS, Pramipexole.
The first night on the new med I had trouble getting to sleep and the next night my legs kind of hurt at night and I've had this spasm in my arm for 4 days now. I stopped taking the drug even though he said to up the dose after 4 days if it does not seem to work. I know I didn't take it for long enough.
My problem is this: I don't really want to take a drug that I don't even know that I really need. I don't like that they are treating something that they don't even know for sure is causing me problems. They are only guessing. Can I insist that they do another sleep study??
I can't say that I really understand the information on my original report. Some of it says:
Split night study. First half baseline study established OSA and hypopneas with an RDI of 91 per hour (AHI of 88 per hour) and oxygen desaturation to a nadir of 76%. PLM normal. Loud snoring recorded. In another portion of the report it states that the PLM is Moderate with PLM index of 24.7 with a 1.7 arousal index.
Respiratory information: Obstructive events 6 apneas, 45 central apneas, 8 mixed apneas, 35 hypopneas, and 9 RERA's. Total AHI was 26.1, RDI of 28.5. REM sleep accounted for 53.0 mins with a REM related AHI of 0.0 and a REM RDI of 0.0. 51.5 mins of sleep was recorded while supine for an AHI of 54.8 and RDI of 61.7. REM/supine indices were AHI 0.0 and RDI of 0.0.
Is that a lot of central apneas? Shouldn't I be on an A-pap machine?
Total of 661 episodes of snoring and the patient spent 6.7% of the total sleep time snoring.
WHEW! That was a lot to write. I don't have a scanner!
Thanks in advance for the advice,
Janet
Views: 10
Replies to This Discussion
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Permalink Reply by Judy on
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I'd be inclined to find another sleep doctor and sleep lab. I can understand why they felt that had to convert to a split-night study but given the problems you are having a full night in-lab titration appears to be totally justified and w/in reason to me. I was under the impression that the Resmed VPAP III was fully data capable. It wasn't all that long ago that I looked up information on it for someone. But my memory is NOT infallible.
I'd request a copy of the doctor's dictated results (1-2 pages) AND the full scored data summary report w/condensed graphs (5+ pages) if you don't have both (they are part of your medical records and as such you have a legal right to them under HIPAA assuming you are in the USA) and a copy of your equipment order (script) as well.
And, like I said, I would find another sleep lab and sleep doctor. And this time I'd insist on seeing the sleep doctor first, discuss my experiene so far w/o slamming the original sleep doctor (the fact that you are getting this second opinion says all that needs to be said), and ask if "his" sleep lab has ONLY fully accredited RPSGTs conducting AND scoring their PSGs. Ask what his primary specialty is, how he happened to select sleep as a sub-speciality, if his preferred sleep lab is fully accredited, etc., etc.
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Permalink Reply by bonesigh on
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Thank you Judy. I'll get the detailed reports with the script. The sleep doc I saw couldn't tell me weather the machine I have is fully data capable when I asked. Said he would ask a tech and get back to me. Hasn't done so yet. I have Kaiser Permanente insurance and they only work with their own doctors. I'm not sure if within Kaiser they have only fully accredited RPSGT's or not and if the one I saw is the only one in my area. I'm about an hour and a half west from D.C. Guess I need to make a call.
Thanks
Judy said:I'd be inclined to find another sleep doctor and sleep lab. I can understand why they felt that had to convert to a split-night study but given the problems you are having a full night in-lab titration appears to be totally justified and w/in reason to me. I was under the impression that the Resmed VPAP III was fully data capable. It wasn't all that long ago that I looked up information on it for someone. But my memory is NOT infallible.
I'd request a copy of the doctor's dictated results (1-2 pages) AND the full scored data summary report w/condensed graphs (5+ pages) if you don't have both (they are part of your medical records and as such you have a legal right to them under HIPAA assuming you are in the USA) and a copy of your equipment order (script) as well.
And, like I said, I would find another sleep lab and sleep doctor. And this time I'd insist on seeing the sleep doctor first, discuss my experiene so far w/o slamming the original sleep doctor (the fact that you are getting this second opinion says all that needs to be said), and ask if "his" sleep lab has ONLY fully accredited RPSGTs conducting AND scoring their PSGs. Ask what his primary specialty is, how he happened to select sleep as a sub-speciality, if his preferred sleep lab is fully accredited, etc., etc.
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Thanks Cindy. I went to the sleep lab 2 different times. The first time I could not sleep and they tried cpap with a nose cup and my nose plugged all up and I could not tolerate it. The second time I went in I slept enough for them to titrate me on a bi-pap with a full face mask. What's the difference with a full night study? It seemed as if I was there all night from around 10pm til 4-5am, I don't really remember.
Isn't the baseline study of RDI 91, as stated above, done in the first half of the study the number before therapy?
Not much change in weight. I've lost 6 pounds and I'm very over weight at 230lbs. Don't know about the centrals but my pressure is really high and it took me a long, long time to get used to it. 18/14.
I did ask for another study, which I thought they were going to do, but they sent me to this other sleep doc I'd never seen instead. I'd only been seen by my respiratory therapist and the staff at the sleep lab in the past.
Not very long on PLMS a week with the one drug that didn't work and only a couple of days of the second drug.
Sometimes I wonder if some of the problems I have don't stem from peri menopause or depression or something else. I wonder how many other women on this forum are dealing with that as well? I'm sure it's a combination and I'm trying to work on both but, I just know my apnea therapy is not working properly. I'm only 44 but I'm not the same person I used to be. I used to be a nanny for twins and had the utmost amount of patience. Now I complain all the time, I'm irritable, no patience and not interested in (well you know what!). That's a hard one to admit to.
Thanks again.
Cindy Brown said:Janet,
I'm inclined to agree with Judy. You need a full night titration. Has anything changed in the two years such as your weight? I would like to see what your before therapy RDI was compared to your RDI after therapy. If the centrals only began after therapy your pressures may be too high
As far as the PLMS goes you only had an arousal index of 1.7 which I think is relatively normal (I could be wrong). You don't mention how long you've been on treatment for PLMS.
Have you contacted your sleep doc to get a full night titration study. I don't know that it's time to jump ship with your physician but if he doesn't listen to you and help you with your problems then perhaps it's time for a second opinion.
Cindy
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