Went to see the sleep doc today to ask for apap, and not surprisingly, he wants a new sleep test before doing anything. He didn't rule out an apap, but he said that if he gives me an apap, he needs a baseline that he thinks is current. He stressed to me that apnea is not my main problem, that he used cpap to treat the main problem of severe daytime sleepiness that borders on narcolepsy and moderate pmls; the apnea is mild, and they don't know why I needed to sleep so much in the sleep test I had five years ago. And I never came back for my follow-up visit after they gave me the machine.
For those of you who don't know my story, I was prescribed cpap five years ago, used it for about a month, gave up and then took it up again four months ago when my ability to sleep extremely long periods became unmanagable. Initially, it helped a great deal, but I still have pre-cpap symptoms. My pressure of 8 now feels like nothing.
I'm not mad. In pulling out my sleep test a couple of weeks ago, I saw that most of my apneas/hypos are csa's not osa's, and as rested gal pointed out, that may mean there are issues that need addressing beyond the simple thing of increasing cpap pressure.
Plus, he said the sleep test, which of course will include the daytime sleepiness test (MSLT) will be done with cpap machine (theirs) rather than without. That alleviates a lot of my anxiety about sleep lab tests. I had traumatic ones at allegedly the best sleep lab in the country, where I was 100% insomniac one night and got 40 minutes of sleep the second night, and the sleep tech yelled at me to go to sleep. The diagnosis was severe PMLS. Three years later, in 2001, at a different but locally well-thought of sleep lab, it was only traumatic because the test lasted so long, but the sleep techs were nice -- i was only supposed to be there 16 or so hours, but it lasted so much longer because i slept so long and they had so much trouble waking me up. The titration sleep test was actually a breeze. So I feel that as long as we're doing it with cpap machine, it may be okay.
I understand their point of view, and self-diagnosing is exhausting. And there may have been developments either in me or in the technology or in sleep knowledge that may help me more than my single-minded campaign for an apap. It's not his problem that I ended the doctor-patient dialogue after he gave me the cpap machine--I was not frustrated with him. I was frustrated with the saga and with the DME. The sleep doc did the smartest thing anyone did. I just gave up after years of frustration, then something worked, and then it didn't work.
so thanks everybody.
caroline
I surrender! Back to the sleep lab!
I surrender! Back to the sleep lab!
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| Additional Comments: Large mask collection | ||||
caroline
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Guest
A high level of involvement in one's own care/management is great and there are times when a good sleep doc is needed. I didn't know your history-you have a more complex sleep disorder than most people. Look at this as a consultation on a complex issue-that it sounds like has not been accurately diagnosed yet.
Faced with the choice between changing one's mind and proving that there is no need to do so, almost everyone gets busy on the proof.....Galbraith's Law
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Guest
Hi there!
I'm newbie here and have to introduce myself. My name is Alex, 28 y.o. from Hungary. I have been looking for such kind of forum for a long time and at least I'm here. Hope that I'll become a member of this community and finally get the answers on all my questions, and may be my experience will be useful for all the ppl around. My Geek code GKDGRGBJ68QN.
Good news today in my plea for APAP justice from the sleep doc, insurance company, etc.
Although I agreed to do this the sleep doc's way over the weekend, last night I wondered how much money this was going to cost me. To wit, although the HM0 insurance company says it pays 100% of cpap supplies, including new machines, last night it occurred to me that the sleep tests could well cost me more than an APAP. So called insurance company and maximum cost for four ordered tests (including breathing and chest xray) will be $120, less if some can be done on same day. Big relief.
Next big relief came when I made appointment for sleep test -- it's just a re-titration, bring-your-own-mask, and MSLT. So sleep doc was just saying, show me and show insurance company that cpap has improved your borderline narcolepsy, I think. Show us that CPAP works for you enough that we should buy you a new machine. But that we are not re-inventing the wheel just because five years has passed made me feel better.
Test scheduled for July 16-17, earlier if there is a cancellation/no-show. Great, I said, I can come tonite if there is a no-show. But they said my paperwork has to be processed before I can even be put on the no-show list.
So I think it's promising. If not, there's always Ebay...
Caroline
Although I agreed to do this the sleep doc's way over the weekend, last night I wondered how much money this was going to cost me. To wit, although the HM0 insurance company says it pays 100% of cpap supplies, including new machines, last night it occurred to me that the sleep tests could well cost me more than an APAP. So called insurance company and maximum cost for four ordered tests (including breathing and chest xray) will be $120, less if some can be done on same day. Big relief.
Next big relief came when I made appointment for sleep test -- it's just a re-titration, bring-your-own-mask, and MSLT. So sleep doc was just saying, show me and show insurance company that cpap has improved your borderline narcolepsy, I think. Show us that CPAP works for you enough that we should buy you a new machine. But that we are not re-inventing the wheel just because five years has passed made me feel better.
Test scheduled for July 16-17, earlier if there is a cancellation/no-show. Great, I said, I can come tonite if there is a no-show. But they said my paperwork has to be processed before I can even be put on the no-show list.
So I think it's promising. If not, there's always Ebay...
Caroline
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caroline
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polysomprincess
- Posts: 10
- Joined: Tue May 30, 2006 2:18 am
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Guest
hi - my mslt results were:
sleep latency: 4.30 minutes
SOREM noted 1/4 naps: 13:30 minutes
micro-sleep noted 1/4 naps
ESS:13
Thing was, he wrote it up as if apnea was the main thing, meaning the first conclusion then, in order, 2) excessive daytime sleepiness; 3_ Increased periodic movements; 4) Alpha-delpha sleep.
Under MSLT conclusion, he wrote 13/Severe Excessive daytime sleepiness. Presence of short sleep latency plus SOREM, 1/4 micro-sleep suggested narcolepsy/ideopathic hypersomnolence. This diagnosis cannot be substantiated in the presence of Sleep Apnea Syndrome/Increased Upper Airway Resistance Syndrome.
Apnea/Hyo INdex(Rem/NRem) 5
Apnea/Hypo Index (Rem) 11
A&H Index Supine 6 (53%) of sleep time
Baseline o2 saturation 96%
Lowest o2 sat 86%
Duration of o2 less than 90% 53 minutes
mild to persistent snoring
Most of the apneas were centrals, not osas. Most of the arousals/awakenings were ideopahic.
50% increased intercostal activity and 50% paradoxical movement noted during study.
there was a good amount of rem sleep, but in the percentages over half my time was spent in stage 2, longer than is good in stage 1, and very little stage 3 & 4. total nighttime sleep time was 11 hours with 13 awakenings.
Treatment recommendations: 1)CPAP (the best) 2) Mandibular Device 3) Surgery. Consider various pillls (named) 3) Re-evaluate for excessive daytime sleepiness after successful apnea treatment.
So I dunno if he wrote it up this way to please the insurance company so i could get a cpap machine or what. But clearly, in his head, he was using cpap to bring the severe daytime sleepiness under control.
when he said that on saturday, it bothered me a little, because the apnea numbers are justifiable for cpap. but when in his office, i couldn't find the main conclusion that said apnea, and the bit about we can't diagnose the excessive daytime sleepiness without addressing apnea. i guess what he was saying was that i was not one of these people who could choke on my own breath during sleep or stop breathing for so long that i would die. although the distinction bothers me a bit, we can talk about it after the sleep study, i think. unless i'm missing something here.
i take his last recommendation, re-evaluate for daytime sleepiness after successfully treating apnea, because either it won't work or it will only partly work. or he wants to know it does work.
i don't have any fears about showing that cpap has worked in a sleep test because cpap has unconsciously trained me to sleep only on one side because of the hose, whereas i used to flip back and forth between sides and sometimes land on my back. it seems to me that i usually wake up in the same position I started in. at school, under a pressing deadline, i now can "get away with" 3-4 hours sleep--i hate it but i can do it if i absolutely have to, whereas before that was impossible. i still wake up in the middle of the night sometimes, but i don't have the sleep marathons i used to, and I don't seem to need sleeping pills unless i am under severe stress--whereas I used to not be able to sleep without a pill. the last month i have needed a pill many nites, but stress has been severe, and i went a coupla months before hardly taking any. (i use small amounts.)
anyway, i hope this does not strike you as narcissistic, but since you asked, i figured i might as well spill it out.
any suggestions/tips are much appreciated.
thanks.
caroline
p.s. maybe blood work is in order now. he asked for an iron test, which was fine. i've been tested for lupus/lyme a bunch of times. i had chronic fatigue syndrome for a long time, and I interpreted some of this as residual stuff , but I also had similar symptoms in my teens and 20s. my CBC's had been normal for a while since this test. my blood work historically has been normal except for mild hypothyroidism and something called an acquired bronchial humoral defect, (abnormally low pneumocoocal antibodies) which is fine unless i get strep, which thankfully i have not had.
sleep latency: 4.30 minutes
SOREM noted 1/4 naps: 13:30 minutes
micro-sleep noted 1/4 naps
ESS:13
Thing was, he wrote it up as if apnea was the main thing, meaning the first conclusion then, in order, 2) excessive daytime sleepiness; 3_ Increased periodic movements; 4) Alpha-delpha sleep.
Under MSLT conclusion, he wrote 13/Severe Excessive daytime sleepiness. Presence of short sleep latency plus SOREM, 1/4 micro-sleep suggested narcolepsy/ideopathic hypersomnolence. This diagnosis cannot be substantiated in the presence of Sleep Apnea Syndrome/Increased Upper Airway Resistance Syndrome.
Apnea/Hyo INdex(Rem/NRem) 5
Apnea/Hypo Index (Rem) 11
A&H Index Supine 6 (53%) of sleep time
Baseline o2 saturation 96%
Lowest o2 sat 86%
Duration of o2 less than 90% 53 minutes
mild to persistent snoring
Most of the apneas were centrals, not osas. Most of the arousals/awakenings were ideopahic.
50% increased intercostal activity and 50% paradoxical movement noted during study.
there was a good amount of rem sleep, but in the percentages over half my time was spent in stage 2, longer than is good in stage 1, and very little stage 3 & 4. total nighttime sleep time was 11 hours with 13 awakenings.
Treatment recommendations: 1)CPAP (the best) 2) Mandibular Device 3) Surgery. Consider various pillls (named) 3) Re-evaluate for excessive daytime sleepiness after successful apnea treatment.
So I dunno if he wrote it up this way to please the insurance company so i could get a cpap machine or what. But clearly, in his head, he was using cpap to bring the severe daytime sleepiness under control.
when he said that on saturday, it bothered me a little, because the apnea numbers are justifiable for cpap. but when in his office, i couldn't find the main conclusion that said apnea, and the bit about we can't diagnose the excessive daytime sleepiness without addressing apnea. i guess what he was saying was that i was not one of these people who could choke on my own breath during sleep or stop breathing for so long that i would die. although the distinction bothers me a bit, we can talk about it after the sleep study, i think. unless i'm missing something here.
i take his last recommendation, re-evaluate for daytime sleepiness after successfully treating apnea, because either it won't work or it will only partly work. or he wants to know it does work.
i don't have any fears about showing that cpap has worked in a sleep test because cpap has unconsciously trained me to sleep only on one side because of the hose, whereas i used to flip back and forth between sides and sometimes land on my back. it seems to me that i usually wake up in the same position I started in. at school, under a pressing deadline, i now can "get away with" 3-4 hours sleep--i hate it but i can do it if i absolutely have to, whereas before that was impossible. i still wake up in the middle of the night sometimes, but i don't have the sleep marathons i used to, and I don't seem to need sleeping pills unless i am under severe stress--whereas I used to not be able to sleep without a pill. the last month i have needed a pill many nites, but stress has been severe, and i went a coupla months before hardly taking any. (i use small amounts.)
anyway, i hope this does not strike you as narcissistic, but since you asked, i figured i might as well spill it out.
any suggestions/tips are much appreciated.
thanks.
caroline
p.s. maybe blood work is in order now. he asked for an iron test, which was fine. i've been tested for lupus/lyme a bunch of times. i had chronic fatigue syndrome for a long time, and I interpreted some of this as residual stuff , but I also had similar symptoms in my teens and 20s. my CBC's had been normal for a while since this test. my blood work historically has been normal except for mild hypothyroidism and something called an acquired bronchial humoral defect, (abnormally low pneumocoocal antibodies) which is fine unless i get strep, which thankfully i have not had.
_________________
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| Additional Comments: Large mask collection | ||||
caroline
[quote="chdurie2"]Good news today in my plea for APAP justice from the sleep doc, insurance company, etc.
Although I agreed to do this the sleep doc's way over the weekend, last night I wondered how much money this was going to cost me. To wit, although the HM0 insurance company says it pays 100% of cpap supplies, including new machines, last night it occurred to me that the sleep tests could well cost me more than an APAP. So called insurance company and maximum cost for four ordered tests (including breathing and chest xray) will be $120, less if some can be done on same day. Big relief.
Next big relief came when I made appointment for sleep test -- it's just a re-titration, bring-your-own-mask, and MSLT. So sleep doc was just saying, show me and show insurance company that cpap has improved your borderline narcolepsy, I think. Show us that CPAP works for you enough that we should buy you a new machine. But that we are not re-inventing the wheel just because five years has passed made me feel better.
Test scheduled for July 16-17, earlier if there is a cancellation/no-show. Great, I said, I can come tonite if there is a no-show. But they said my paperwork has to be processed before I can even be put on the no-show list.
So I think it's promising. If not, there's always Ebay...
Caroline
Although I agreed to do this the sleep doc's way over the weekend, last night I wondered how much money this was going to cost me. To wit, although the HM0 insurance company says it pays 100% of cpap supplies, including new machines, last night it occurred to me that the sleep tests could well cost me more than an APAP. So called insurance company and maximum cost for four ordered tests (including breathing and chest xray) will be $120, less if some can be done on same day. Big relief.
Next big relief came when I made appointment for sleep test -- it's just a re-titration, bring-your-own-mask, and MSLT. So sleep doc was just saying, show me and show insurance company that cpap has improved your borderline narcolepsy, I think. Show us that CPAP works for you enough that we should buy you a new machine. But that we are not re-inventing the wheel just because five years has passed made me feel better.
Test scheduled for July 16-17, earlier if there is a cancellation/no-show. Great, I said, I can come tonite if there is a no-show. But they said my paperwork has to be processed before I can even be put on the no-show list.
So I think it's promising. If not, there's always Ebay...
Caroline
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Guest
guess what! sleep lab had cancellation for this sunday night and monday. that was fast-- so we're on! i'm a little nervous about being able to fall asleep without a pill--no drugs. but my stressed situation may resolve itself by sunday because i had another "good news" phone call today. that would make things easier. also, i'll do no caffeine sunday and try to wear myself out doing yard work, assuming it's a nice day, or clean the upstairs of my house. i'll also bring some milk to warm, breath-rite and rhino-cort. so i should be okay.
i think the sleep doc is ordering another MSLT because that's his main concern. my guess is that with the traditional apnea patient, you assume that cpap will take care of the daytime sleepiness. but i'm guessing that with my diverse symptoms, he wants to know cpap is working--otherwise we get to try other things. also, since the apneas are borderline for the insurance company, he may feel he needs a strong argument to get them to continue financing my cpap. and who knows, maybe he's writing an article on treating the non-traditional patient with cpap? i don't really care.
and you're right. $30 a pop for an overnight sleep test is a deal. of course, for what i pay in premiums...
anyway, never thought i'd be excited to have a sleep test.
caroline
i think the sleep doc is ordering another MSLT because that's his main concern. my guess is that with the traditional apnea patient, you assume that cpap will take care of the daytime sleepiness. but i'm guessing that with my diverse symptoms, he wants to know cpap is working--otherwise we get to try other things. also, since the apneas are borderline for the insurance company, he may feel he needs a strong argument to get them to continue financing my cpap. and who knows, maybe he's writing an article on treating the non-traditional patient with cpap? i don't really care.
and you're right. $30 a pop for an overnight sleep test is a deal. of course, for what i pay in premiums...
anyway, never thought i'd be excited to have a sleep test.
caroline
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Pad A Cheek
- Posts: 836
- Joined: Sat Oct 22, 2005 3:40 pm
- Location: Virginia, In the shadow of the Blue Ridge Mountains
- Contact:
Sleep Test
That is indeed great news Caroline, I hope they can find out how to make you feel great and get the sleep you need. It can be frustrating when there are unanswered questions.
Good luck, I am sure you will do just fine.
Remember to wear your PJs with the tigers on them. And your fuzzy slippers.
I know it will all be better than it has been for you. Take care and sleep soundly.
Good luck, I am sure you will do just fine.
Remember to wear your PJs with the tigers on them. And your fuzzy slippers.
I know it will all be better than it has been for you. Take care and sleep soundly.
_________________
| Machine: DreamStation Auto CPAP Machine |
| Additional Comments: This CPAP stuff at night makes the days so much more productive |
And I think to myself...... What a Wonderful World
caroline,
Doer you "no-drugs" comment mean it'll a night of no sleep medicine immediately after a time of taking it? If so, you might find yourself with rebound insomnia, which might reall screw up the diagnosis!
O.
Doer you "no-drugs" comment mean it'll a night of no sleep medicine immediately after a time of taking it? If so, you might find yourself with rebound insomnia, which might reall screw up the diagnosis!
O.
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
o-good thought. i've been taking very little--.125 to .25 of triazolam a night most nites the last few weeks. so starting tonite, i should probably take .065 tonite and be off as soon as possible--warm bath and milk for me. and try letting the mask put me to sleep as i did in my pre-stress days.
thanks for reminding me. i do not want to be bouncing around in a sleep test.
caroline
thanks for reminding me. i do not want to be bouncing around in a sleep test.
caroline
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| Additional Comments: Large mask collection | ||||
caroline