Sleep Study Nightmare

SnoreNoMore2005 · Post by **SnoreNoMore2005** » Wed Aug 17, 2005 6:35 pm

None of the medical tests I had taken pointed to the cause of my overwhelming fatigue, memory loss, and difficulty concentrating. My regular doc said he thought I was most likely suffering from either early dimentia, fibromyalgia, depression, or possibly Chronic Fatigue Syndrome, but suggested I have a sleep study to rule out sleep apnea as a possible cause of my symptoms.

I was scheduled for a sleep study at the Bay Area Sleep Diagnostic Center in Tampa. It was a split study where during the first part of the night they would measure my breathing, and the second part of the night they would put me on a CPAP and titrate me, if needed.

The sleep tech wired me up and fitted me with a full face mask and told me to go to sleep. Shortly after midnight she woke me up to tell me I had sleep apnea and proceeded to hook me up to a CPAP machine with a full face mask. Somehow, I fell back asleep until about 3:00 a.m. at which point I started hearing rasberry type noises. Then I began to panic as I realized I couldn't exhale and felt like I was asphyxiating. I yanked the mask off my face and threw it across the bed as I gasped for air. Nurse Ratchet came running in and asked me what was wrong. I told her I couldn't exhale and was choking. She told me she had turned the CPAP up to 20cm which was as high as it would go. (Imagine a person who never used a CPAP machine and was expected to exhale 20cm of pressure.)

I told her I couldn't tolerate that high pressure and she said I either need to do it again or leave. It was 3:30 a.m. I asked her if I could just sleep the rest of the night. Nurse Ratchet told me no. I would have to leave if I was refusing 'medical treatment'. So at 3:30 a.m. I unhooked myself, got dressed, and drove home. End of sleep study.

It gets worse: when my regular doc got my polysomnography report by Leonard Cosmo, MD FCCP who is their Board Certified in Sleep Medicine specialist, Dr. Cosmo reported that I "have severe OSA and had an excellent therapeutic response to CPAP treatment." He further recommended CPAP therapy at 20 cm using a FF mask. No where on the report did it mention the fact that I couldn't exhale at 20cm and that Nurse Ratchet sent me home at 3:30 a.m. I guess that wasn't clinically significant.

I demanded a second sleep study, from a different company of course, but had so much anxiety over my first sleep study, I couldn't even fall asleep for the second study. Luckily my second sleep doc ordered an AUTOPAP. After the DME his office recommended insisted on giving me a CPAP instead of an AUTOPAP, I fired them and got a new DME which gave me an AUTOPAP.

The Autopap therapy and software measures me to need about 8cm pressure. I do feel much, much better after using the AUTOPAP. All of my above symptoms have dissappeard after three months. I now get up early and go jogging then swim laps which I haven't done for years. However, I shudder at the thought that had I listened to the first sleep doc, I would have ended up trying to sleep with a CPAP at 20cm as this "Board Certified in Sleep Medicine" specialist recommended.

Good people out there, you had better learn to take control of your health and your life. If you rely on whatever a sleep doc tells you to do, you could be in for a lot of anguish. Use your best judgement and get a second opinion before embarking on any significant medical treatment. If it doesn't feel right, take the initiative to get help. The people on this board have been wonderful, and I don't feel I would have been able to adapt to the use of an AUTOPAP without their help. Thanks to this board, I have my life back.

Regards,

SnoreNoMore2005

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CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, CPAP, DME

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CPAPopedia Keywords Contained In This Post (Click For Definition): cpap machine, CPAP, DME

Sleepless on LI · Post by **Sleepless on LI** » Wed Aug 17, 2005 7:25 pm

Now, if that's not a tale with a great moral behind it. First off, so sorry you went through a nightmare like that. Their licenses to operate a sleep disorder clinic ought to be revoked, let alone a doctor who totally ignores what went on in his report.

However, after reading Fran Drescher's book, "Cancer Schmancer," which tells of her tale of having eight different doctors misdiagnose her, or miss the diagnosis entirely, she was finally diagnosed and her life saved. But her moral, too, was take a pro-active approach to your own healthcare as nobody knows your body like you do. If you feel there is something wrong and the doctor is saying you're fine, go from doctor to doctor until you find the one who listens to you and finds out what it is that is truly ailing you. It, unfortunately, took her eight doctors before being diagnosed with cancer. Had she not been pro-active, like SnoreNoMore was, she probably would not be alive today.

I applaud your efforts to do what was right for yourself and totally respect your taking that approach. You should never be embarrassed or afraid to speak up and get the care you deserve. After all, you pay a fortune for health insurance and doctors' appointments, etc., for one thing, not to mention you should be given appropriate and optimal medical care. Nothing on this earth gives doctors or healthcare works the right to ignore the signs or treat you like you are not a human deserving the best care you can get. What ever happened to the oath these doctors take to do the best they can for their patients?

I hope you continue to thrive, SNM. Good going.

capt · Post by **capt** » Wed Aug 17, 2005 7:56 pm

Wow, what a story. Thank heaven you had enough confidence to stick to your guns, and how fortunate you were to find someone that knew what they were doing. Your story adds further testimony to me about how important it is to be able to control and monitor as much as your treatment as we can. All the best!

rested gal · Post by **rested gal** » Wed Aug 17, 2005 8:59 pm

Great account of your experiences, SNM!!

Yes! It is so important to educate oneself in this kind of treatment.

Arthur Ole Lancaster · Post by **Arthur Ole Lancaster** » Wed Aug 17, 2005 10:42 pm

I can understand how you feel ,see my post "doctors and cure for snoring" Ole Lancaster.

WAFlowers · Post by **WAFlowers** » Thu Aug 18, 2005 6:37 pm

SNM, I'm just across the bay from you. If you ever need another PSG I can highly recommend a sleep lab in the Countryside area (US19 just north of 580). I dealt with 2 different technicians for my two nights (no split night study for me); one was very good and the other was outstanding!

SnoreNoMore2005 · Post by **SnoreNoMore2005** » Fri Aug 19, 2005 12:33 pm

Hey Bill,

Countryside is about 20 minutes from my house. You might have been able to hear me snoring before I got my autopap.

What sleep doc do you use?

SnoreNoMore2005

WAFlowers · Post by **WAFlowers** » Sat Aug 20, 2005 6:37 am

I see Dr. Averill. His main office is in Largo but he does one day a week out of the Countryside Diagnostic Clinic on McMullen-Booth.

Sleep Study Nightmare

Sleep Study Nightmare

sleep study nightmare