"please keep me updated about oximeters "
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Replies to This Discussion
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Permalink Reply by Ronald Bree on
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I was originally diagnosed with sleep apnea about 5 years ago. Over the years I have had 3 different sleep studies and all 3 studies revealed similar results. About 9 or 10 months ago I decided that I felt the same whether I slept with it or not. I could not convince myself that it was going me any good. Even when using it I did not sleep thru the night. I have not used it since and still dont't "miss it". I now have to wonder if I outgrew it or if there is something else going on.
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Permalink Reply by Banyon on
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How old are you? What is your BMI now and five years ago? What was your AHI from the sleep studies?
You say you "felt the same with or without CPAP". How did you feel? Energetic all day long or lethargic?
When you started CPAP, did you change anything else? What is your sleeping position?
When you were using CPAP, what machine and mask did you use? Did you have software or other tools to use at home to monitor the effectiveness of your treatment (AHI and other statistics)?
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Permalink Reply by Mary Z on
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I hope your sleep apnea was mild and possibly weight loss or other life style alterations have made changes for the better for you. What made you go for a sleep study in the first place? If you felt tired, fell asleep during the day, or had other symptoms did you have follow up when CPAP did not improve how you felt? I hope you no longer have sleep apnea for whatever reason.
Banyon asked some good questions, if you could address those questions we would be in a better position to help you, Ronald.
Ronald Bree said:I was originally diagnosed with sleep apnea about 5 years ago. Over the years I have had 3 different sleep studies and all 3 studies revealed similar results. About 9 or 10 months ago I decided that I felt
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I will try to answer these questions as best i can:
I am now 58 years old; I weigh approx. 165 lbs (my weight has not chnaged in 20 - 25 years) and am 5'9"; I do not know what my BMI is and I do not know what AHI is; I averaged 29 episodes per hour; I never had problems falling asleep...anywhere or anytime. My mornings were miserable as I woke up feeling more tired than when I went to bed (with or without the CPAP). Often, I felt like I was running all night. By lunch I wanted to sleep. By mid to late afternoon, trying to stay awake was near impossible. I have fallen asleep at trafic lights or in a store waiting for my wife to finish shopping. I had nothing resembling energy. I have a Respironics CPAP with a Comfort Gel mask. I actually have 6 different masks, none of which were an improvement over any others. I normally sleep on my left side. By the way, I am now taking Provigil for help getting through the day.
I hope this information helps especially if you can offer some insight.
Banyon said:How old are you? What is your BMI now and five years ago? What was your AHI from the sleep studies?
You say you "felt the same with or without CPAP". How did you feel? Energetic all day long or lethargic?
When you started CPAP, did you change anything else? What is your sleeping position?
When you were using CPAP, what machine and mask did you use? Did you have software or other tools to use at home to monitor the effectiveness of your treatment (AHI and other statistics)?
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Ronald, I sure hope the Provigil helps- I take nuvigil and it helps me.
It sounds as if you were never properly treated in the first place. If you have not been back to the sleep doctor I urge you to do so. If the sleep doc has checked you and is giving your Provigil You maybe just one of us for whom the excessive daytime sleepiness does not stop with CPAP use.
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Ronald Bree said, “I averaged 29 episodes per hour; I never had problems falling asleep...anywhere or anytime. My mornings were miserable as I woke up feeling more tired than when I went to bed (with or without the CPAP). Often, I felt like I was running all night. By lunch I wanted to sleep. By mid to late afternoon, trying to stay awake was near impossible. .... I am now taking Provigil for help getting through the day.”
You have classic symptoms of someone with a serious case of sleep apnea. I know by experience that life is very difficult under these conditions.
Your sleep studies confirm sleep apnea. AHI is the apnea-hypopnea index or the number (29) of episodes per hour.
The feeling of “running all night” likely comes from the stress your mind and body are under from suffering apneas. In particular, your heart is beating at a high rate for much of the night and not getting proper rest and recovery. Serious damage is being done to mind and body over the long run.
Ronald Bree said, “About 9 or 10 months ago I decided that I felt the same whether I slept with it or not. I could not convince myself that it was going me any good. Even when using it I did not sleep thru the night. I have not used it since and still dont't "miss it".”
Your conclusion that CPAP was “not doing you any good” may be entirely correct. It is common for CPAP patients to start out with the wrong machine, wrong machine settings, wrong mask, and wrong techniques. In such cases it is common for the patient to be using CPAP but still suffering many apneic events throughout the night. This was my experience starting out. The lab titrated an incorrect pressure, prescribed the wrong mask, and told me nothing about sleeping positions.
So many patients fall in this category, that about half of them give up CPAP.
The solution for many of us that persevered is to obtain a data-capable machine with software. The software provides daily reports of how you were breathing during the night. The reports show apneas, hypopneas, snores, mask leak, and other data.
In my case, once I had my own report, I could see the therapy was not effective. Then came the opportunity to begin changing things that I saw in the data – switch to a different mask, work out all the leaks, change the pressure settings, etc. Over a few months time, I went from AHI of 32 starting out with the setup from the lab and doctor, to AHI<2 after all my tweakings.
Get a machine with software and get control of your therapy and your health. Use the forum for advice on making improvements.
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Thanks again for your input. Over the years I have already been to 3 different doctors and had 3 different sleep studies all having virtually the same results. All doctors have recommended the same settings and the same type of equipment. What has changed over the years has been a wide variety of masks. My biggest issue now is that I have been out of work since last December. New equipment or more doctor visits is no longer an option.
By the way, are you a doctor or someone with a lot f experience?
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I'm just a guy that likes to see people get good results in an economical way and not suffer with the bullshit that often comes from the medical professionals and equipment suppliers.
Look at your case: 3 doctors, 3 sleep studies, a lot of time and money spent, no improvement.
I don't think that is what you wanted. Time to do something different.
Just making some suggestions in an attempt to help. What do you want to do next?
How are you paying for the Provigil? Provigil is only treating the symptoms and not the underlying problem. Provigil is quite expensive. It is likely cheaper to divert the Provigil funds to buying a data-capable CPAP machine and software and then treat the problem instead of the symptoms.
I have empathy for your problems, but that is worthless without action.
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When it seemed that no one was able to resolve the problem, I decided to "think outside the box". If I couldn't treat the cause of the problem, the I had to treat the symptoms, namely, staying awake and not falling asleep at my desk. At the very least, it is extremely embarassing to fall asleep in some of the unfortunate places I have fallen asleep. At least I had a fighting chance withthe Provigil. By the way, I was able to get an ample supply before I lost my joband insurance.
Thanks anyway for your input.
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We do what we have to do and what we are able to do.
Millions of people treat the symptoms of sleep-disordered breathing with a popular drug, caffeine (witness the popularity of Starbucks et al). So I don't consider treating the symptoms with Provigil as thinking outside the box. In fact, if that is all you do, you are trapped in the box.
I don't know the answer to your problems, but I do know many people find the answer by getting a data-capable machine and tweaking their therapy. That is the most logical and practical next step, IMO.
The financial issue is something to be overcome. You can often find excellent used machines at cpapauction.com and software is widely available for some models.
Let me know if you have any questions and good luck.
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