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What exacerbates SDB?
Hi all, I was diagnosed with SDB 5 years ago, but I found sleeping with the CPAP the worst night's sleep of my life. Given the alternative of 3 surgeries, I chose no treatment. I take adderall for ADD, so I'm usually fine. Then about 6 weeks ago, it all fell apart. I'm waiting for appt with a new really good sleep doctor, but have seen a couple other doctors recently who blamed stress. Ugh. So my questions are, in the absence of any lifestyle changes, is there anything that could exacerbate this condition so significantly? And is it just "status quo" or whatever for the report to mention parkinsonism or other neuromuscular disorder should be considered?
Views: 276
Replies to This Discussion
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Permalink Reply by Paige on
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Well that is encouraging...that it's possible to be head over heels with your cpap, as opposed to a love hate relationship. I have my appointment Monday morning. Yay. At this point I just want treatment. I don't want to wait forever to scedule a new study, and then wait for follow up appointment. It's such a long drawn out process & I'm tired of being tired. Just ready to feel better.
So I know people say they feel better with cpap, but specifically- less tired, smarter, better concentration, more energy?
Sheila Knowles said:I use a full face mask.. I tried the nasal but I opened my mouth just for a second..and it felt like a hurricane rushing out of my mouth.. took my breath away..and I could NOT rip that sucker off my face fast enough. My full face mask..covers my mouth and nose.. and I KNOW I open my mouth a lot while I am sleeping....even BEFORE I fall asleep. The air that is blowing into my nose AND mouth is awesome feeling. it actually opens UP my sinuses...it is like I am breathing better than I have all day long.. my mask and I have a blissful relationship.. ( wink)...If I feel like I can't feel the air.. I simply rest one hand
above the exhaust vent on the mask and feel all the air blowing on my hand.. and I instantly feel like I am breathing better and deeper and am aware of all the air flowing that I am breathing in. I used to snore like a freight train.. ( sucking in the walls?? )..and kick my legs a LOT while I was sleeping.. I never knew it..or woke myself UP.. and since using my CPAP
I DO NOT snore at ALL anymore..and very rarely even move my legs at night.
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Thanks for another great answer. That's great your nose is less stuffy. Seems like it may not be the torture device I've made it out to be. Ahh to be calmer :-D
Andy said:
Paige said:... I only wore cpap during the titration study & I can't remember exactly but I think it was like an oxygen mask covering my nose & mouth. I guess I like to breathe thru my mouth since my nose is always stopped up. But every time I opened my mouth it sucked it closed like a vaccuum or something? Am I remembering it wrong? I felt suffocated all night
Hi Paige,
Welcome to the forum!
Please don't let your first and only time on CPAP (during your sleep study/titration) affect your decision. In spite of all the efforts of the sleep tech and the work that's put into making the environment as comfortable as possible, the nigh in the lab is not a typical night for you!
I, too, have had a stuffy nose for years. Since I've started on CPAP, it's gone! I guess the pressure of the CPAP keeps my nose passages clear, though I did use some nasal spray for the first few weeks.
I use a nasal pillows mask, and my wife and kids get a laugh out of the fact that I open my mouth and the air comes rushing out! My son, a Star Wars fan, always tries to get me to talk once I put on the mask, so he can hear my "Darth Vader" voice.
The fact is, I'm far more healthy, calm, and productive since starting on CPAP. Through a vacation, business trip, and a few colds, I have not missed a single night on CPAP, and my average time per night on it is 7 hours 37 minutes.
So, don't give up, and stay around the forum asking questions and getting answers!
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Permalink Reply by Banyon on
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Paige, Don't make it too complicated in the beginning.
Keep it simple. Two things:
- Without CPAP you have serious difficulty breathing while asleep. You possibly have oxygen desaturations; you certainly have interrupted sleep and are sleep deprived; your hormone system is out of whack. These are all conditions which are very damaging to your mind and body.
- CPAP is an attempt to allow you to breathe while you are asleep and avoid oxygen desaturations, sleep deprivation, hormome imbalances and serious damage to mind and body.
Choose one.
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Permalink Reply by Mary Z on
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Paige, for most of it is a rather drawn out process. Ironic considering how dangerous sleep apnea can be. But most of us have to wait for a sleep study, then wait for the Doctor to read it, then wait for the DME to get us set up with the new machine. Then things don't always go as smoothly as we would like in the beginning. I'd go with what Banyon said, when you look at the two choices of going through the process, or suffering the effects of untreated sleep apnea, well there's really only one choice. And unfortunately the process can't be rushed.
Hang in there and keep us posted. Soon you, too, will join the ranks of the treated.
Mary Z.
Paige said:Well that is encouraging...that it's possible to be head over heels with your cpap, as opposed to a love hate relationship. I have my appointment Monday morning. Yay. At this point I just want treatment. I don't want to wait forever to scedule a new study, and then wait for follow up appointment. It's such a long drawn out process ....
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Permalink Reply by jim allAn on
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Mary Z said:
Why do I get this garbage every time I try to reply.Jim, You need to look at your machine and tell us exactly what brand and model it is. Somebody here should know or be able to look up if it's a data capable machine. As an alternative, with this same information you should be able to go to the brand web site and check the specs. But first tell us exactly the brand and type of machine- all the info available to you.
Mary Z.
The top side says: Philps Respironics
System One
The bottom side: Remstar Auto lpx_ ?
bo966636
bob f
No model number, but I guess the bo number is it.
I don't see any port to hook a computer to. It does give me a bunch of information on the top side lcd display. I don't think the agent that delivered it left any manual. Will have to look for it. I will check the web site idea also.
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Does the info on the lcd screen give AI and AHI? I don't know the button sequence to get this data. Maybe someone else could post the handshake for viewing the lcd data screen for AI and AHI?
<.
The top side says: Philps Respironics
System One
The bottom side: Remstar Auto lpx_ ?
bo966636
bob f
No model number, but I guess the bo number is it.
I don't see any port to hook a computer to. It does give me a bunch of information on the top side lcd display. I don't think the agent that delivered it left any manual. Will have to look for it. I will check the web site idea also.
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Rooster said:
I agree! I have been using CPAP for the past 5years. Yes , you have to get used to it and maybe you need to try different masks but you will soon realize how much it helps and how good you feel and it will become second nature. My wife and I took a long weekend away several months ago and I did something that I NEVER do-I forgot to take my CPAP machine.I didn't sleep the first night and slept poorly the second night. As soon as we got home I put my mask on and napped for about 3hrs. and I felt as though I had slept for three days. Try it ,it works well! Good LuckDo what you should have done five years ago - make a commitment to being a CPAPer. Get educated about CPAP. Use the help of the patient forums. Take charge of your therapy - the medical professionals can't do it for you.
Very important - get a data capable machine with software which will allow you to see how the therapy is working. A graph is produced daily which is a minute-by-minute time line of the night showing apneas, hypopneas, snores, pressure, mask leak, etc. This is critical to becoming a dedicated and healthy CPAPer. I would bet you did not have this five years ago.
Be aware that many patients start out CPAP with the wrong machine/wrong mask/wrong pressure settings - they are setup to fail. This could have been you five years ago.
If you have insurance, get a new sleep study since the condition is progressive and may be worse than five years ago. Make sure your sleep lab is accredited.
BTW, sleep deprivation caused by untreated sleep apnea is often the underlying cause of ADD.
Good luck and hope to see you on the forum.
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Mary Z said:Does the info on the lcd screen give AI and AHI? I don't know the button sequence to get this data. Maybe someone else could post the handshake for viewing the lcd data screen for AI and AHI?
I didn't see any reference to them. I think I will wait and see if anyone has the button sequence. The lighting in my bedroom is so bad I possibly missed it. If nobody has the button sequence I will bring it out to get a better look.
<.
The top side says: Philps Respironics
System One
The bottom side: Remstar Auto lpx_ ?
bo966636
bob f
No model number, but I guess the bo number is it.
I don't see any port to hook a computer to. It does give me a bunch of information on the top side lcd display. I don't think the agent that delivered it left any manual. Will have to look for it. I will check the web site idea also.
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Paige, don't RUSH into anything, especially if you have been fine and this is just a temporary change. If you look at the report, it *clearly* states
The patient had 65 arousals with an arousal index of 10. Most of these were spontaneous in nature and did not clearly correlate with periodic leg movements, or scorable apneas or hypopneas or snoring.
So, your AROUSALS were not linked to anything apnea related! You and your doc should find out WHY these arousals are occuring. If the arousals are NOT linked to anything apnea related, then attempting to cure something that a) isn't linked and b) may not even BE a problem well, it just seems wrong. I would advise talking to this sleep doc as well as a DIFFERENT sleep doc. CPAP should be approached just like taking a drug.
It has been found that CPAP can actually INCREASE Central Apneas! If you do end up going this route then I have to agree with the other poster that an APAP would probably be more appopriate. Rather than having a FIXED pressure, the APAP will continuously adjust to what it is detecting. Since you have very few apnea events, the machine shouldn't be doing much most of the night except for a low continuous pressure, so it should be a lot easier to tolerate than the straight CPAP.
Good Luck!
Carl
Paige said:Here's my first report.
SLEEP STAGES: Includes 16 minutes of stage I sleep, 193.0 minutes stage II sleep, 38.0 minutes of stage III sleep, 60 minutes of stage IV sleep and 87 minutes of stage REM and 40 minutes of stage awake.
AROUSAL ANALYSIS: The patient had 65 arousals with an arousal index of 10. Most of these were spontaneous in nature and did not clearly correlate with periodic leg movements, or scorable apneas or hypopneas or snoring although there were a few arousals do to these causes.
PERIODIC LEG MOVEMENTS: Periodic leg movements of sleep were not identified.
RESPIRATORY SUMMARY: There were 3 central apneas, 2 mixed apneas and 14 obstructive apneas and 6 hypopneas. The patient did have a prolonged period of supine REM sleep. The total apnea plus hypopnea index was 4 there was no strong REM component. There was no strong positional component. Heart rate tended to show some tachycardia bradycardia varying from 60 to 112. The patient’s baseline SAO2 is 98%. The low SAO2 was 89% she was at that level for the less than 1% of the lime. She had49 desaturations with a desaturation index of 4 and these pretty well matched the scorable apneas and hypopneas. Snoring occurred with 116 events and an index of 25.
IMPRESSION; This study does show significant sleep disordered breathing apnea plus hypopnea index is 4 although the usual upper limits of normal is considered 5 that is an arbitrary number in view of her desaturations and arousals and syncopal tachycardia bradycardia. I think this patient probably does have significant sleep disorder breathing particularly in view of her other difficulties at least it is worth a therapeutic trial.
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Your statement do not follow any logical path. The report stated that her arousals were not related to any of the apnea events. Just because something happens WITHOUT CPAP does NOT mean that it is the cure. While she does have O2 desats according to the strict definition, none of them were below the magic 88%, and, only 1% of the time (a very small percent) was at 89%. So, I guess that I would ask the question... Is a dsat such as this *really* damaging? If so, what is the mechanism? I do know that desating below 88% can, over the long term, cause primary pulmonary hypertension.
But, in this case, the interrupted sleep may be due to something else going on. CPAP is not a cureall for all sleep disorders. Again, I would approach CPAP just like I would any other drug. I would NOT take it unless there was compelling evidence.
The last sentence in the analysis stated...
quote
I think this patient probably does have significant sleep disorder breathing particularly in view of her other difficulties at least it is worth a therapeutic trial.
unquote
I personally think that this is a cop out. It flies in the face of the fact that her AHI was 4 and up to 5 is considered normal. I would ask that why, if 5 is considered normal is 4 being treated like it's not? Stating that the 5 number is "arbitrary" means that it could just as easily be 10. It further underscores the problem that a lot of this "medicine" is really a trial and error because the underlying science is not well understood - well, at least not all of it.
Carl
Banyon said:Paige, Don't make it too complicated in the beginning.
Keep it simple. Two things:
- Without CPAP you have serious difficulty breathing while asleep. You possibly have oxygen desaturations; you certainly have interrupted sleep and are sleep deprived; your hormone system is out of whack. These are all conditions which are very damaging to your mind and body.
- CPAP is an attempt to allow you to breathe while you are asleep and avoid oxygen desaturations, sleep deprivation, hormome imbalances and serious damage to mind and body.
Choose one.
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Well said, Carl. You made a more careful study of Paige's test results than I did. I tend to believe that sleep disordered breathing should always be treated with CPAP, and this is selling the patient short if they don't have OSA.
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I do agree with Carl that the sleep doc has not done a good job so far. But if I understood the thread properly, it has been five years since a PSG and diagnosis and Paige is now feeling worse. This could certainly be because SBD is a progressive condition. A new sleep study is due.
BTW, If my AHI was 4 or 5 (28 to 40 AIs per night), I would still treat it with CPAP. But that is just me. :)
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