Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Dyane Maybe a different sleep specialist or neurologist or at least more talk to this one. Apnea doesn't sound like the issue on the surface, but something is keeping you from quality sleep. There are so many possible causes other than sleep apnea. The periodic leg movements could certainly be keeping you from advancing. Also the leg movements can normally be treated with fair ease. I would assume your oxygen saturation was ok? I think you could well be on too much cpap even at 14 since there's another issue. What level of oxygen with your sleep? Perhaps overdoing cpap to make up for oxygen or other issues. Maybe an entirely separate issue such as depression or anxiety or meds you're on. The test looks strange too in that I would think at least you'd have a minute here and there of three and four on the way to REM. Did they start the testing over as if you hadn't been tested before and do a two night study or did they just test you on the existing setting? I do share your concern that something isn't right. The total time isn't enough either if thats all the sleep you're able to get. Seems to me its sort of a square one thing to reevaluate the whole situation. Do you remember what your number of sleep interruptions from apnea was before the CPAP? Did they not also test you in 2005 with CPAP to see if that solved the problem and gave you more advanced sleep? If so what were your 2005 numbers with CPAP. We're comparing apples and oranges and if they didn't test you last time with cpap and this time without then there is no data for comparison. Lots of things change in 4 years. > > Here is a question for consideration... > I finally got a copy of the sleep study I had done in June (not the > report the doctor gave me) and even though I didn't reach REM sleep > until the cpap was at 16 they have left me at 14. Comparison from 2005 > (pre cpap) and 2009 (with cpap) > Total sleep time 334 minutes and 382 minutes > Stage 1 sleep 124 minutes and 22 minutes (this is good) > Stage 2 sleep 147 minutes and 313 minutes (+50%) > Stage 3/4 sleep 0 minutes and 0 minutes (shouldn't this > have improved, don't you need stage 4 sleep to recoup? > REM 63 minutes and 47 minutes (less than in 2005) > > I can understand the REM, so I dreamed less that night but the whole > stage 2/3/4 thing just seems more important to me than this neurologist > I saw. (not one of my regular doctors) > > Also Periodic Limb Movements 41 total in 2005, 202 in 2009 but because > only 32 caused arousal, deemed not to be a big deal. I have complained > that I wake myself up throwing my self around the bed, I find this a big > deal. NO WONDER IM EXHAUSTED. > > So, am I just whining or should I talk to someone besides this > neurologist? > > Dyane Phoenix IPF 02 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Pink Good point and I just assumed the neurologist she referred to was one but might well not be. Both neurologists and respiratory doctors (generally of the ENT persuasion, sometimes of the allergy persuasion, sometimes of the pulmonology persuasion) may specialize in sleep medicine. If you're not seeing one who specializes please do so. You need someone who is in the sleep medicine field full time. Others might overreact or underreact to one or another items in the study. For instance 15 interruptions per hour sounds like a lot even if just paraapnea. Yet most sleep doctors would not prescribe a CPAP at that level (full apnea a different story but most of us have paraapnea). Different doctors may look at leg movements differently. Some tend to overlook oxygen saturation thinking the CPAP will correct for that. While it might in minor cases, it won't with those will lung disease. > > > From: dyanebillings dyane.billings@... > Subject: Apnea Report > To: Breathe-Support > Date: Wednesday, August 5, 2009, 6:07 PM > > > > > > > Here is a question for consideration. .. > I finally got a copy of the sleep study I had done in June (not the report the doctor gave me) and even though I didn't reach REM sleep until the cpap was at 16 they have left me at 14. Comparison from 2005 (pre cpap) and 2009 (with cpap) > Total sleep time 334 minutes and 382 minutes > Stage 1 sleep 124 minutes and 22 minutes (this is good) > Stage 2 sleep 147 minutes and 313 minutes (+50%) > Stage 3/4 sleep 0 minutes and 0 minutes (shouldn't this > have improved, don't you need stage 4 sleep to recoup? > REM 63 minutes and 47 minutes (less than in 2005) > > I can understand the REM, so I dreamed less that night but the whole stage 2/3/4 thing just seems more important to me than this neurologist I saw. (not one of my regular doctors) > > Also Periodic Limb Movements 41 total in 2005, 202 in 2009 but because only 32 caused arousal, deemed not to be a big deal. I have complained that I wake myself up throwing my self around the bed, I find this a big deal. NO WONDER IM EXHAUSTED. > > So, am I just whining or should I talk to someone besides this neurologist? > > Dyane Phoenix IPF 02 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 dont forget about restless leg syndrome maybe she needs to be evaluated for that Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Apnea ReportTo: Breathe-Support Date: Wednesday, August 5, 2009, 7:37 PM PinkGood point and I just assumed the neurologist she referred to was onebut might well not be. Both neurologists and respiratory doctors(generally of the ENT persuasion, sometimes of the allergy persuasion,sometimes of the pulmonology persuasion) may specialize in sleepmedicine. If you're not seeing one who specializes please do so. Youneed someone who is in the sleep medicine field full time. Others mightoverreact or underreact to one or another items in the study. Forinstance 15 interruptions per hour sounds like a lot even if justparaapnea. Yet most sleep doctors would not prescribe a CPAP at thatlevel (full apnea a different story but most of us have paraapnea).Different doctors may look at leg movements differently. Some tend tooverlook oxygen saturation thinking the CPAP will correct for that.While it might in minor cases, it won't with those will lung disease.>>> From: dyanebillings dyane.billings@ ...> Subject: Apnea Report> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, August 5, 2009, 6:07 PM>>>>>>> Here is a question for consideration. ..> I finally got a copy of the sleep study I had done in June (not thereport the doctor gave me) and even though I didn't reach REM sleepuntil the cpap was at 16 they have left me at 14. Comparison from 2005(pre cpap) and 2009 (with cpap)> Total sleep time 334 minutes and 382 minutes> Stage 1 sleep 124 minutes and 22 minutes (this is good)> Stage 2 sleep 147 minutes and 313 minutes (+50%)> Stage 3/4 sleep 0 minutes and 0 minutes (shouldn't this> have improved, don't you need stage 4 sleep to recoup?> REM 63 minutes and 47 minutes (less than in 2005)>> I can understand the REM, so I dreamed less that night but the wholestage 2/3/4 thing just seems more important to me than this neurologistI saw. (not one of my regular doctors)>> Also Periodic Limb Movements 41 total in 2005, 202 in 2009 butbecause only 32 caused arousal, deemed not to be a big deal. I havecomplained that I wake myself up throwing my self around the bed, I findthis a big deal. NO WONDER IM EXHAUSTED.>> So, am I just whining or should I talk to someone besides thisneurologist?>> Dyane Phoenix IPF 02> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Pink Yes. CPAP's are amazing and help so many so much. But they aren't the only answer and sleep medicine is much more than just that. The problem can be other things or multiple things. > > > > > > From: dyanebillings dyane.billings@ ... > > Subject: Apnea Report > > To: Breathe-Support@ yahoogroups. com > > Date: Wednesday, August 5, 2009, 6:07 PM > > > > > > > > > > > > > > Here is a question for consideration. .. > > I finally got a copy of the sleep study I had done in June (not the > report the doctor gave me) and even though I didn't reach REM sleep > until the cpap was at 16 they have left me at 14. Comparison from 2005 > (pre cpap) and 2009 (with cpap) > > Total sleep time 334 minutes and 382 minutes > > Stage 1 sleep 124 minutes and 22 minutes (this is good) > > Stage 2 sleep 147 minutes and 313 minutes (+50%) > > Stage 3/4 sleep 0 minutes and 0 minutes (shouldn't this > > have improved, don't you need stage 4 sleep to recoup? > > REM 63 minutes and 47 minutes (less than in 2005) > > > > I can understand the REM, so I dreamed less that night but the whole > stage 2/3/4 thing just seems more important to me than this neurologist > I saw. (not one of my regular doctors) > > > > Also Periodic Limb Movements 41 total in 2005, 202 in 2009 but > because only 32 caused arousal, deemed not to be a big deal. I have > complained that I wake myself up throwing my self around the bed, I find > this a big deal. NO WONDER IM EXHAUSTED. > > > > So, am I just whining or should I talk to someone besides this > neurologist? > > > > Dyane Phoenix IPF 02 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Bruce, 1st off thanks Everyone for your suggestions! ..a)yes this guy is supposed to be a sleep apnea specialist, my oncologist actually recommended himb)I was trying to be brief, and combined some total minutes from pre and post cpap from the first test and skipped how many minutes it took to fall asleep. I don't care how tired you are it takes forever to go to sleep trussed up like a Thanksgiving Turkey LOL On the first test they actually shortened the first part of the first test because I had 92 apnea episodes in 60 minutes broken about evenly between obstructive, central, and hyponeas, at that time they ramped me up from 4 to 14 and I've been at 14 ever since and do not have a problem w/the force. I've bled in 02 ever since March of 2007 going from 3lpm to the 8 I use now. If I need biPap fine, but my sats are always good when I remember to look when I wake up in the night so breathing out does not seem to be a problem, even though I showed the hyponeas in the first test.c)My second test in June they ramped me up from 8 to 16 before I got REM, they said I was fine at 14 until I laid on my back, then I started snoring, having apneas, etc and they pushed it to 16. The center even recommends a 16 BiPap "if tolerated"d)in 2005 my saturation never went below 82 (this was pre-o2) and in june they were bleeding it in at 5(biggest concentrator they had) and it wobbled between 82-92 while sleeping.e)not that I want another drug, but my brother takes Klonipin(sp) for plm. He has no apnea but his wife wanted to kill him over the plm.f)my biggest complaint (and why I asked for the study in June) was excessive daytime sleepiness even though my saturation levels are good. Everyone who I talked to that had cpap talked like it was the best thing since sliced bread. I was sleeping better, no more sore throats from snoring or such, but I was still tired, bone tired everyday. I just can't believe that no stage 4 sleep and 202 limb movements in 334 minutes sleep is anyway to get refreshed. oh yeah, not restless leg, my husband had that, no creepy crawlies, I kick like the Rocketts> >> > Here is a question for consideration...> > I finally got a copy of the sleep study I had done in June (not the> > report the doctor gave me) and even though I didn't reach REM sleep> > until the cpap was at 16 they have left me at 14. Comparison from> 2005> > (pre cpap) and 2009 (with cpap)> > Total sleep time 334 minutes and 382 minutes> > Stage 1 sleep 124 minutes and 22 minutes (this is good)> > Stage 2 sleep 147 minutes and 313 minutes (+50%)> > Stage 3/4 sleep 0 minutes and 0 minutes (shouldn't this> > have improved, don't you need stage 4 sleep to recoup?> > REM 63 minutes and 47 minutes (less than in 2005)> >> > I can understand the REM, so I dreamed less that night but the whole> > stage 2/3/4 thing just seems more important to me than this> neurologist> > I saw. (not one of my regular doctors)> >> > Also Periodic Limb Movements 41 total in 2005, 202 in 2009 but> because> > only 32 caused arousal, deemed not to be a big deal. I have> complained> > that I wake myself up throwing my self around the bed, I find this a> big> > deal. NO WONDER IM EXHAUSTED.> >> > So, am I just whining or should I talk to someone besides this> > neurologist?> >> > Dyane Phoenix IPF 02> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Dyane It's obvious there is more going on. Just don't settle for the answers you've been given. Klonopin is an anti-anxiety med often prescribed for those with sleeping problems although not typically a first choice unless known anxiety. To even take stabs at answers is hard. Your daytime sleepiness could well be from the disease as well, but the limb movements, the lack of sleep over Level 2. Did the center test you on a Bipap? They didn't obviously check your sats at 8 lpm but that would be easy enough with an overnight oximeter. Just the amount of limb movement is tiring though. > > > > > > Here is a question for consideration... > > > I finally got a copy of the sleep study I had done in June (not the > > > report the doctor gave me) and even though I didn't reach REM sleep > > > until the cpap was at 16 they have left me at 14. Comparison from > > 2005 > > > (pre cpap) and 2009 (with cpap) > > > Total sleep time 334 minutes and 382 minutes > > > Stage 1 sleep 124 minutes and 22 minutes (this is good) > > > Stage 2 sleep 147 minutes and 313 minutes (+50%) > > > Stage 3/4 sleep 0 minutes and 0 minutes (shouldn't this > > > have improved, don't you need stage 4 sleep to recoup? > > > REM 63 minutes and 47 minutes (less than in 2005) > > > > > > I can understand the REM, so I dreamed less that night but the whole > > > stage 2/3/4 thing just seems more important to me than this > > neurologist > > > I saw. (not one of my regular doctors) > > > > > > Also Periodic Limb Movements 41 total in 2005, 202 in 2009 but > > because > > > only 32 caused arousal, deemed not to be a big deal. I have > > complained > > > that I wake myself up throwing my self around the bed, I find this a > > big > > > deal. NO WONDER IM EXHAUSTED. > > > > > > So, am I just whining or should I talk to someone besides this > > > neurologist? > > > > > > Dyane Phoenix IPF 02 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Bruce, Thank you I really wanted someone to tell me I wasn't crazy Will insist on better Answers from Different Doc!Dyane Phoenix,IPF 02> > > >> > > > Here is a question for consideration...> > > > I finally got a copy of the sleep study I had done in June (not> the> > > > report the doctor gave me) and even though I didn't reach REM> sleep> > > > until the cpap was at 16 they have left me at 14. Comparison from> > > 2005> > > > (pre cpap) and 2009 (with cpap)> > > > Total sleep time 334 minutes and 382 minutes> > > > Stage 1 sleep 124 minutes and 22 minutes (this is good)> > > > Stage 2 sleep 147 minutes and 313 minutes (+50%)> > > > Stage 3/4 sleep 0 minutes and 0 minutes (shouldn't this> > > > have improved, don't you need stage 4 sleep to recoup?> > > > REM 63 minutes and 47 minutes (less than in> 2005)> > > >> > > > I can understand the REM, so I dreamed less that night but the> whole> > > > stage 2/3/4 thing just seems more important to me than this> > > neurologist> > > > I saw. (not one of my regular doctors)> > > >> > > > Also Periodic Limb Movements 41 total in 2005, 202 in 2009 but> > > because> > > > only 32 caused arousal, deemed not to be a big deal. I have> > > complained> > > > that I wake myself up throwing my self around the bed, I find this> a> > > big> > > > deal. NO WONDER IM EXHAUSTED.> > > >> > > > So, am I just whining or should I talk to someone besides this> > > > neurologist?> > > >> > > > Dyane Phoenix IPF 02> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2009 Report Share Posted August 5, 2009 Bruce, What is the differece between C-pap and Bipap? My husband died from sleep apnea. He was on Bipap. I don't think that he used it much though.Beverley Joy,71, UIP,NSIP 1-09,Diabetes,Sjogren's,Fibromyalgia IdahoSubject: Re: Apnea ReportTo: Breathe-Support Date: Wednesday, August 5, 2009, 8:23 PM Dyane It's obvious there is more going on. Just don't settle for the answers you've been given. Klonopin is an anti-anxiety med often prescribed for those with sleeping problems although not typically a first choice unless known anxiety. To even take stabs at answers is hard. Your daytime sleepiness could well be from the disease as well, but the limb movements, the lack of sleep over Level 2. Did the center test you on a Bipap? They didn't obviously check your sats at 8 lpm but that would be easy enough with an overnight oximeter. Just the amount of limb movement is tiring though. > > > > > > Here is a question for consideration. .. > > > I finally got a copy of the sleep study I had done in June (not the > > > report the doctor gave me) and even though I didn't reach REM sleep > > > until the cpap was at 16 they have left me at 14. Comparison from > > 2005 > > > (pre cpap) and 2009 (with cpap) > > > Total sleep time 334 minutes and 382 minutes > > > Stage 1 sleep 124 minutes and 22 minutes (this is good) > > > Stage 2 sleep 147 minutes and 313 minutes (+50%) > > > Stage 3/4 sleep 0 minutes and 0 minutes (shouldn't this > > > have improved, don't you need stage 4 sleep to recoup? > > > REM 63 minutes and 47 minutes (less than in 2005) > > > > > > I can understand the REM, so I dreamed less that night but the whole > > > stage 2/3/4 thing just seems more important to me than this > > neurologist > > > I saw. (not one of my regular doctors) > > > > > > Also Periodic Limb Movements 41 total in 2005, 202 in 2009 but > > because > > > only 32 caused arousal, deemed not to be a big deal. I have > > complained > > > that I wake myself up throwing my self around the bed, I find this a > > big > > > deal. NO WONDER IM EXHAUSTED. > > > > > > So, am I just whining or should I talk to someone besides this > > > neurologist? > > > > > > Dyane Phoenix IPF 02 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Both accomplish the same thing although slightly differently. Some doctors will argue that there isn't much difference while others will argue the opposite. The truth probably lies in between in that for most patients it doesn't make a difference but it will for some. Here is one explanation. Cpap Machine A Cpap machine provides continuous air pressure at a medically suggested level to treat various types of sleep apnea. Because the air is continually flowing from a mask, it forces the throat to stay open to prevent episodes of sleep apnea. Bipap Machine A Bipap machine has different levels of pressure during inhalation and exhalation. This makes it easier for people to adjust to the machine. Because of its easier application, a Bipap is often a better method for people suffering from congestive heart failure, neuromuscular diseases or various lung disorders. > > > > >> > > > > Here is a question for consideration. ..> > > > > I finally got a copy of the sleep study I had done in June (not> > the> > > > > report the doctor gave me) and even though I didn't reach REM> > sleep> > > > > until the cpap was at 16 they have left me at 14. Comparison from> > > > 2005> > > > > (pre cpap) and 2009 (with cpap)> > > > > Total sleep time 334 minutes and 382 minutes> > > > > Stage 1 sleep 124 minutes and 22 minutes (this is good)> > > > > Stage 2 sleep 147 minutes and 313 minutes (+50%)> > > > > Stage 3/4 sleep 0 minutes and 0 minutes (shouldn't this> > > > > have improved, don't you need stage 4 sleep to recoup?> > > > > REM 63 minutes and 47 minutes (less than in> > 2005)> > > > >> > > > > I can understand the REM, so I dreamed less that night but the> > whole> > > > > stage 2/3/4 thing just seems more important to me than this> > > > neurologist> > > > > I saw. (not one of my regular doctors)> > > > >> > > > > Also Periodic Limb Movements 41 total in 2005, 202 in 2009 but> > > > because> > > > > only 32 caused arousal, deemed not to be a big deal. I have> > > > complained> > > > > that I wake myself up throwing my self around the bed, I find this> > a> > > > big> > > > > deal. NO WONDER IM EXHAUSTED.> > > > >> > > > > So, am I just whining or should I talk to someone besides this> > > > > neurologist?> > > > >> > > > > Dyane Phoenix IPF 02> > > > >> > > >> > >> Quote Link to comment Share on other sites More sharing options...
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