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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?

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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.
Do 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.
Have you considered a certified dentist for a mandibular advancement device? It may be that the time period of untreated sleep apnea, or SDB, has finally taken it's toll. What symptoms are you having when you say "it all fell apart", and what symptoms led to having a sleep study in the first place? The adderal could have kept you awake and functioning during the day until the sleep debt and other side effects of your untreated apnea caught up with you. We can give you lots of hints on coping with cpap and getting over the bumpy start.
Good Luck
Yes I just found out about oral devices & that is definitely my preference if given the choice. I felt like I was suffocating on the cpap. I had the sleep studies in the beginning for tiredness & severe headaches. After the 2nd study I was found to have low b12 & after getting the injections the problems went away. That's what I thought my be going on now. But doctors just make all these assumptions. I'm sure it is that my adderall helps me function normally, so I've been able to cope just fine until about 6 weeks ago. I suddenly couldn't get enough sleep, 8-10 hours nightly. Being a lot more aware of waking up gasping & with palpitations. Morning headache lasting longer than usual, never feeling like adderall "kicks in", a kind of scary decrease in mental abilities & puffy eyes that won't go away. Also I guess I have blurry vision now. Oh & shortness of breath after walking up one flight of stairs & shaky legs after walking down one flight. I'm really falling apart all of a sudden. It's weird.

Mary Z said:
Have you considered a certified dentist for a mandibular advancement device? It may be that the time period of untreated sleep apnea, or SDB, has finally taken it's toll. What symptoms are you having when you say "it all fell apart", and what symptoms led to having a sleep study in the first place? The adderal could have kept you awake and functioning during the day until the sleep debt and other side effects of your untreated apnea caught up with you. We can give you lots of hints on coping with cpap and getting over the bumpy start. Good Luck
NOT using your cpap or you need an apap which is not so aggressive and it is also better as it follows your apnea ups and downs more accuratly
sleeping on your back causes more apnea
sleeping pills make apnea more dangerous
lack of good food and lack of rest

puffy eyes sound like thyroid
Thanks for all the replies. So the general consensus is "don't ignore apnea". Just because you can stay awake all day doesn't mean your body isn't paying a price. Got it. And getting the PAP isn't the worst thing in the world.
Good to hear your latest comment as it sounds like you are getting a fresh perspective. Your comments remind me of an observation I made years ago when first getting diagnosed and starting. A friend said it must be awful to wear a mask every night. I thought a minute and said, "No it is not, what is awful is to not wear the mask and suffer the results of severe obstructive sleep apnea. CPAP is a blessing."

BTW, dental appliances often reduce the severity of sleep apnea but rarely treat it completely. Plus, personally I find wearing an appliance that pulls my jaw forward to be much more uncomfortable that CPAP.
The oral device is probably a bad idea since it came from a dr that I decided not to be treated by. 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.
Also I am well again. The correct answer was serotonin syndrome/toxicity. I thought I was dying. Still going to the sleep dr tho. I'm looking forward to feeling even better.

Banyon said:
Good to hear your latest comment as it sounds like you are getting a fresh perspective. Your comments remind me of an observation I made years ago when first getting diagnosed and starting. A friend said it must be awful to wear a mask every night. I thought a minute and said, "No it is not, what is awful is to not wear the mask and suffer the results of severe obstructive sleep apnea. CPAP is a blessing." BTW, dental appliances often reduce the severity of sleep apnea but rarely treat it completely. Plus, personally I find wearing an appliance that pulls my jaw forward to be much more uncomfortable that CPAP.
Something else to consider SDB in children can cause agitation, over activity, inability to concentrate giving them a diagnosis of ADHD/ADD. Once Sleep issues were resolved a percentage returned to “Normal”.

http://organizedwisdom.com/ADD_and_Sleep_Disorders
To answer the question what exacerbates SDB?
Weight gain, weight loss,Stress, sinusitis, allergies, environmental toxins, lung infections, fluid retention, cardiomyopathy …
i think stress is a precursor like major stress from the distant past and now it has caught up with you and you need to pay back the debt somehow and that usually involve cpap treatment
then it take time to repay that sleep debt
i have been on cpap for two years and it is only now that i am sleeping with my best friend the cpapor rather an apap
a cpap can be likened to a trabant; and an apap to a rolls royce both are cars both will get you from A to B but the rolls brings with it comfort
And I wonder about UARS. Look it up. Upper Airway Resistance Syndrome.There is a dental device I've been reading about, can't remember its name, that runs about $400-$500 w/some fitting by a dentist as an alternative to the $2500-$3500 dental appliances.

The major advantage of an APAP over a fully data capable CPAP is that the APAP can be run in auto mode OR in straight CPAP mode, so for just a very few dollars more (if you are buying out of pocket) you get two for the price of one. And if insurance is paying for all or most of the cost of an xPAP for you, they pay by HCPCS (insurance) code NOT by brand and model and CPAPs and APAPs are the exact same HCPCS code.

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