"please keep me updated about oximeters "
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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?
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Replies to This Discussion
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Permalink Reply by Carl on
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I agree 100% with Banyon!!! Do a new sleep study!!!
I would INSIST that the first one be done with NO CPAP at all. Get a baseline so you know where you are BEFORE they start "drugging" you with this stuff. THEN, and ONLY THEN, if a real problem is found, (in order to determine if there is a problem, have it analyzed by a sleep doc, MAYBE BY MORE THAN ONE!!!), go back and have it redone with a machine - but make sure it's a machine that is appropriate for you. CPAP, like someone said, is like the Model T, an auto titrator (APAP) is more like the Ferrari. I would skip straight over BiPAP, it's just a CPAP with one pressure for inhalation and a 2nd slightly less for exhalation - kind of like a Model T with a governor ;^)
Of course, APAP machines are more expensive, but not so much so that they're ridiculous - at least not anymore ridiculous than what these companies try to charge as rentals for regular machines!!!
The reason things sounded strange here is that, according to Paige, these symptoms seemed to come on suddenly. I may be crazy, but I do not believe that sleep apnea is something that hits you like a ton of bricks, more like it's something hat can be traced back to a long history of things becoming worse over time. Sure, you can miss the beginning of it, but, when you realize it, then you notice how it's been getting worse for a while now.
I'm curious - have these doctors ever done a set of sleep studies on "normal" people? If so, what AHI index do THEY show? What types (how much and for how long) of DSATs do THEY have? I mean, is this something that we know that absolutely NO normal people EVER dsat more than 4%? How have these numbers been determined? Lots of questions here, there should be some answers, or, at least someone should be doing research into this and attempting to ascertain what "normal" really means? I mean, has ANYONE ever done a sleep study and NOT been told they need an XPAP machine?
Good Luck!
Carl
Banyon said: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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Permalink Reply by Banyon on
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Carl, I doubt that the latest problems came on so suddenly. My suspicions are that this has been building up and Paige finally reached a desperation point. This is not uncommon with SDB - the patient really doesn't know how poorly he is doing until he reaches a breaking point.
Reviewing the thread, I see Paige said at one point, "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." My guess is that did not happen suddenly but Paige did suddenly come to the conviction that she needed to get something done.
Paige, This thread has been going on for nearly three weeks. What is the status of your appointment with the sleep doc?
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Guys thanks so much for all the concern! There are lots of new replies & I had several comments while reading, but will prob forget what I was going to say. 1st: there are too many posts on this 3 week old thread for y'all to have read them all, but I had serotonin syndrome. Stopped taking lexapro & am now back to my usual level of tiredness, awakenings, etc. 2nd: my appt with a new sleep doc is Monday. It is at the university with dr Andrew chesson, who is a well-known & respected sleep doc. I think he helped write the new psg scoring manual, so I am confident that he will lead me in the right direction. 3rd: Once I went to the doc I saw a few weeks ago I got a copy of the sleep study reports & I didn't post everything as far as the recommendations, but the dr who read my study whom I never saw, suggested I be referred to a university where they do esophageal manometry to test for upper airway collapsibility or UARS. That could certainly account for the arousals without registering as apneas, correct? I think that is what I understand from dr park. And regardless of desats (which obviously are more serious), the arousals cause fragmented, unrefreshing sleep. I believe cpap is the typical treatment for uars? I think when I had my study was before they started scoring reras? I have read a lot abt sleep disorders in the past month, which is why I am following up with this, even though I am over the serotonin syndrome. From what I have learned, it seems as though a better quality of sleep & therefore life may be in my future. Also, my mom, grandma, & uncle all have apnea. And one of dr parks articles mentioned something about uars being subclinical apnea or apnea in the making. As long as you are careful, how would a "therapeutic trial" of cpap really be more damaging than living with untreated sleep disordered breathing.
Banyon said:Carl, I doubt that the latest problems came on so suddenly. My suspicions are that this has been building up and Paige finally reached a desperation point. This is not uncommon with SDB - the patient really doesn't know how poorly he is doing until he reaches a breaking point. Reviewing the thread, I see Paige said at one point, "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." My guess is that did not happen suddenly but Paige did suddenly come to the conviction that she needed to get something done.
Paige, This thread has been going on for nearly three weeks. What is the status of your appointment with the sleep doc?
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Carl, obviously medicine in trial & error, it is science after all, as you said. I believe sleep medicine is relatively new in the medical field so yes they are still learning. But even in other disciplines, you try different techniques & approaches for different people because we're not all the same. And trial & error is the basis of the scientific method, which is the only reason there have ever been any medical cures. It's not fair to judge the sleep study doctor's opinion as a cop out, like he just didn't know so he makes something up. He wasn't treating me. He had no vested interest in my case. He simply was an educated enough sleep doctor to recognize that it's not cut & dry & fragmented sleep can cause difficulties even without "sleep apnea".
Carl said: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...
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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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Here's my 2nd study- the titration. In case u happen to notice all the leg movements, the reason there weren't any in the initial study was because I was taking tegretol for possible partial seizures. But I don't have them & quit taking the tegretol in between the two studies. These were in 2005, and yeah I do feel more tired than I did then, but I was also 26. I'm also very thin, which dr park points out often differentiates between apnea & uars.
SLEEP STAGES: Sleep staging including 14.5 minute Stage I sleep, 204 per minute Stage II sleep which is increased, 30 minutes of Stage III and 92 minutes of Stage IV sleep und no Stage REM which is decreased. Stage awake was 33.5 minutes, which is within the normal range.
AROUSAL ANALYSIS: The patient had 96 arousals, 17 of these were associated with periodic leg movements and only 14 were associated with upper airway obstruction. Most of that was snoring, Patient continued to have snoring in spite of increases in CPAP.
PERIODIC LEG MOVEMENTS: Periodic leg movements were a total of 349 index of 55 and arousal index of 2.7.
ISOLATED LEG MOVEMENTS; Isolated leg movements were 32 with an index of 5 and arousal index of 0.2,
RESPIRATORY SUMMARY: Across all levels of CPAP from 6-14, the patient had two central apneas, no mixed apneas and three obstructive apneas. Hypopneas did not occur. Overall apnea plus hypopnea index was 0.8. Heart rate varied from 54 to104. Snoring index was 20.7 and was not extinguished even by CPAP of 14. Baseline SAO2 is 98%, low SAO2 was 93% with desaturation index of 0.9. The patient had no hypopneas. Her obstructive apneas really did not occur until she got up to CPAP of 12 and the central apneas did not occur until she got up to a CPAP of 5 and she had no desaturation. The periodic leg movements persisted throughout the study in spite of very good control of her apnea and hypopnea, in spite of incomplete control of snoring.
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Well looking at these results, I'm not sure how much the cpap helped either (though it was a nasal mask & I'm a mouth breather). Sheila mentioned that she no longer snores like a freight train or moves her legs since being on cpap & it didn't control either of those for me. I wonder if it's like medicines that take time to reach therapeutic levels? Or maybe that is why the dr that was treating me recommended septoplasty, adenoidectomy & soft palate reduction surgery. Apparently I have a gigantic tongue. :-P But it also could've been because I expressed my extreme dislike of the cpap. Or maybe he just wanted to do surgery because he'd make a lot more money that way. Lol.
Anyways I really appreciate this forum & all the information/advice/opinions for my upcoming appt.
Paige said:Here's my 2nd study- the titration. In case u happen to notice all the leg movements, the reason there weren't any in the initial study was because I was taking tegretol for possible partial seizures. But I don't have them & quit taking the tegretol in between the two studies. These were in 2005, and yeah I do feel more tired than I did then, but I was also 26. I'm also very thin, which dr park points out often differentiates between apnea & uars. SLEEP STAGES: Sleep staging including 14.5 minute Stage I sleep, 204 per minute Stage II sleep which is increased, 30 minutes of Stage III and 92 minutes of Stage IV sleep und no Stage REM which is decreased. Stage awake was 33.5 minutes, which is within the normal range. AROUSAL ANALYSIS: The patient had 96 arousals, 17 of these were associated with periodic leg movements and only 14 were associated with upper airway obstruction. Most of that was snoring, Patient continued to have snoring in spite of increases in CPAP.
PERIODIC LEG MOVEMENTS: Periodic leg movements were a total of 349 index of 55 and arousal index of 2.7.
ISOLATED LEG MOVEMENTS; Isolated leg movements were 32 with an index of 5 and arousal index of 0.2,
RESPIRATORY SUMMARY: Across all levels of CPAP from 6-14, the patient had two central apneas, no mixed apneas and three obstructive apneas. Hypopneas did not occur. Overall apnea plus hypopnea index was 0.8. Heart rate varied from 54 to104. Snoring index was 20.7 and was not extinguished even by CPAP of 14. Baseline SAO2 is 98%, low SAO2 was 93% with desaturation index of 0.9. The patient had no hypopneas. Her obstructive apneas really did not occur until she got up to CPAP of 12 and the central apneas did not occur until she got up to a CPAP of 5 and she had no desaturation. The periodic leg movements persisted throughout the study in spite of very good control of her apnea and hypopnea, in spite of incomplete control of snoring.
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I think anyone who is a mouth breather at times ( like myself)....should try and wear a FULL face mask.
Couldn't that make a difference?
If you only tried the nasal you would not know if the snoring and leg movements could be improved by a full face mask
or not, right?
I could not wear the nasal one.. so know nothing about it besides how bad it freaked me out to try it.. but IF you open
your mouth all the time w/ a nasal mask.. doesn't that STOP all the air from being beneficial and it goes right out your
mouth and is not treating the apneas?
when they did the test on you...did you use a nasal mask? I am probably the worst person to give any kind of advice
on this site..tho' I feel a strong connection and affection for the members here.. I am an amateur at all of it. I simply
have a machine that does NOTHING but blow air for me. No data capability..I can't afford it.. I am about to lose my insurance..but I envy all those who talk about their machines and what all they can find out about how their night went
My SA is probably not as bad as some others here. My machine is set to ramp from 4 to 6. So far this is working
ok for me..my dream would be to have another study done.. have a machine that can actually monitor me..and of course.. win the state lottery.. (( sigh)) .
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Permalink Reply by 99 on
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stay on your cpap
i think there is another problem, puffy eyes, large tongue
these are tipically thyroid problems and sometimes are within normal range but can be checked by a morning temperature test at home
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Permalink Reply by Claire A. Murray on
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I suffered from several sleep apnea for many years before "self diagnosing" and getting myself to the sleep dr. I, too, always had a stopped up nose and was a mouth breather. CPAP therapy has altered that former reality for me. By keeping fresh, moist air coming in through my nose all night, my airways stay clear, I don't suffer from the severe post nasal drip that caused constant bouts of bronchitis, and I sleep with my mouth closed most of the night. It took a bit of practice the first week, but then I adjusted to the CPAP machine and won't go to bed without it. Hang in there because this can be a truly life-altering experience for you. I know firsthand how much the right therapy can make a positive change in your sleep and thus your life. Good luck!
Paige said: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.
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like banyon said it comes on over a peroid of time and it is the last straw that broke the comels back
Banyon said:Carl, I doubt that the latest problems came on so suddenly. My suspicions are that this has been building up and Paige finally reached a desperation point. This is not uncommon with SDB - the patient really doesn't know how poorly he is doing until he reaches a breaking point.
Reviewing the thread, I see Paige said at one point, "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." My guess is that did not happen suddenly but Paige did suddenly come to the conviction that she needed to get something done.
Paige, This thread has been going on for nearly three weeks. What is the status of your appointment with the sleep doc?
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Permalink Reply by Mike on
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bump
99 said:like banyon said it comes on over a peroid of time and it is the last straw that broke the comels back
Banyon said:Carl, I doubt that the latest problems came on so suddenly. My suspicions are that this has been building up and Paige finally reached a desperation point. This is not uncommon with SDB - the patient really doesn't know how poorly he is doing until he reaches a breaking point.
Reviewing the thread, I see Paige said at one point, "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." My guess is that did not happen suddenly but Paige did suddenly come to the conviction that she needed to get something done.
Paige, This thread has been going on for nearly three weeks. What is the status of your appointment with the sleep doc?
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Bump?
My appt with Dr. Chesson went great! Such a better experience than mouffarej. I'll review them both after I'm diagnosed. Dr. Chesson said many patients don't have full blown apnea but upper airway resistance syndrome. He mentioned a narrow airway, something about my soft palate tissue & nasal or nostril collapse. I didn't catch everything he was explaining to the resident, who told me Dr. Chesson was one of the top sleep docs in the world. I have to wait for a new sleep study. He said they used to try to use the esophageal manometry mentioned in one of my studies to measure upper airway resistance or whatever but weren't very successful in getting people to sleep with that thing up their nose & down their throat. They use different pressure transducers and such now. What a relief! He said cpap is the standard treatment & a full face mask would be more appropriate for me & should be a lot more comfortable. So good news. Now just playing the waiting game.
Mike said:bump
99 said:like banyon said it comes on over a peroid of time and it is the last straw that broke the comels back
Banyon said:Carl, I doubt that the latest problems came on so suddenly. My suspicions are that this has been building up and Paige finally reached a desperation point. This is not uncommon with SDB - the patient really doesn't know how poorly he is doing until he reaches a breaking point.
Reviewing the thread, I see Paige said at one point, "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." My guess is that did not happen suddenly but Paige did suddenly come to the conviction that she needed to get something done.
Paige, This thread has been going on for nearly three weeks. What is the status of your appointment with the sleep doc?
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