3 years later...??

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
msr0459
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3 years later...??

Post by msr0459 » Tue Aug 19, 2014 6:33 am

Hello,

It's been about 3 years since starting cpap therapy. My original sleep study only showed hypopneas, though the study itself I've always thought to be flawed due to the small amount of actual sleep that occurred. The lab was horrible, IMO. The room did not have separate climate control,... so I was freezing part of the time, and hot the rest of the time. I could here a city train as it went by a few times during the night, I could here my "neighbor" talking to the tech through the walls,...etc. I probably should have demanded my money back!

That said, and fast forward almost 3 years. I've been totally compliant using the machine. My first pressure prescription was only a 7. My sleep never really improved that much. The doc didn't really have an answer, and immediately prescribed sleep meds., which didn't help at all. After tiring of paying a $40.00 co pay to see the sleep doc every visit, I finally learned how to adjust the machines pressure myself. I experimented all the way to 10.4, and still no real improvement. By and large my AHI is usually VERY low, with only a few hypopneas showing on my software. I did notice that after raising the pressure beyond my original amount of 7, I would see a few actual apneas here and there,... but still basically always an AHI below 3, sometimes higher though.

I eventually had my primary physician write me another prescription for clonazepam, which I'd tried much earlier, and before cpap therapy. Back then it did help my sleep, but eventually stopped working. I refused to raise the 2 mg dosage, and eventually quit the med. That was a miserable experience to say the least. So once again desperate for sleep, 6 months or so back, even though I had sworn to never use that med again, I once again starting the clonazepam 2 mg tabs. As suspected, my sleep improved initially. I went from waking 3 to 5 times per night to go to the bathroom, down to most nights only once. That, to me, proves that I'm not waking up BECAUSE I have to urinate, but I go to the bathroom BECAUSE I'm in a very light sleep, or totally awake, and notice I could go,... and therefore I go.

So now today, the clonazepem is no longer working, and I'm weaning myself off of them again. I'm now trying some herbs to help with the withdrawal,...and I'm taking it much slower this time. A few nights back, just to see what would would happen, I adjusted my pressure back down to my original setting of 7, with the EPR to "off",(which was part of the original cpap prescription)

My AHI's have improved (go figure), although as stated, have always been below 3, with the occasional 4 or so. I am now back to waking several, if not up to 5 times per night. Sometimes I can fall back to sleep easily, sometimes not. I'm ALWAYS very exhausted the next day. About the only time I feel OK is if I get the opportunity to fall back asleep enough on the weekends, which results in enough "fragmented" sleep to at least feel OK at best.

So now what? I'm only posting this because I realize that those that are reading this can at least relate. I really wonder if I every really needed the cpap at all. I definitely snored, as confirmed by my wife,... but not if I was on my right side in particular. If I'm on my left side, I'd still occasionally snore a little(again, go figure?).

Well, that's my story and at this point I really wonder if I'm ever going to get a truly recuperative nights sleep. I'm now 55 years old, with two young children (5 y/o boy and an 8 y/o girl). Otherwise I've always kept myself in great shape physically, but as you can imagine, all these years of sleep deprivation is robbing me of the vital life I so desperately want back.

Again, I don't know what I expect from this forum. I just don't know what else to try. Another sleep study would still cost quite a bit more out of pocket than I have nowadays,.. even with my insurance, so now what. What would some of you guys do or try at this point?

Thanks for reading,
Marc

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Re: 3 years later...??

Post by 49er » Tue Aug 19, 2014 6:44 am

Hi Mark,

Welcome to the forum.

I am in a somewhat similar situation to yours as I definitely empathize. Just like I feel I have done everything I can think of to succeed, you have also which makes it even more frustrating.

Of course, you can keep trying with pap therapy but my question is since you have tried three years, how much longer do you keep trying before moving on? Only you can answer that question.

What is the severity level of your apnea? The reason i am asking is that adjustable dental appliances have between a 60% to 75% chance of getting the apnea below 5 if it is mild to moderate. I have posted a study that you might want to search the archives for.

Your other option is to look into surgery which I am not ready to do yet. You will get very negative opinions about it on this board but in my opinion, if you're not functioning with pap therapy and have done everything possible to succeed, then it seems it is a reasonable option to me.

You do need to make sure you are picking the right surgery for your situation as I am convinced one of the reasons for the low success rates is that patients aren't selected properly for procedures. A good site to check out is http://www.needsleep.net and look at the archives for the non cpap forums.

Anyway, just like I hope to find answer, I hope you do too.

49er
msr0459 wrote:Hello,

It's been about 3 years since starting cpap therapy. My original sleep study only showed hypopneas, though the study itself I've always thought to be flawed due to the small amount of actual sleep that occurred. The lab was horrible, IMO. The room did not have separate climate control,... so I was freezing part of the time, and hot the rest of the time. I could here a city train as it went by a few times during the night, I could here my "neighbor" talking to the tech through the walls,...etc. I probably should have demanded my money back!

That said, and fast forward almost 3 years. I've been totally compliant using the machine. My first pressure prescription was only a 7. My sleep never really improved that much. The doc didn't really have an answer, and immediately prescribed sleep meds., which didn't help at all. After tiring of paying a $40.00 co pay to see the sleep doc every visit, I finally learned how to adjust the machines pressure myself. I experimented all the way to 10.4, and still no real improvement. By and large my AHI is usually VERY low, with only a few hypopneas showing on my software. I did notice that after raising the pressure beyond my original amount of 7, I would see a few actual apneas here and there,... but still basically always an AHI below 3, sometimes higher though.

I eventually had my primary physician write me another prescription for clonazepam, which I'd tried much earlier, and before cpap therapy. Back then it did help my sleep, but eventually stopped working. I refused to raise the 2 mg dosage, and eventually quit the med. That was a miserable experience to say the least. So once again desperate for sleep, 6 months or so back, even though I had sworn to never use that med again, I once again starting the clonazepam 2 mg tabs. As suspected, my sleep improved initially. I went from waking 3 to 5 times per night to go to the bathroom, down to most nights only once. That, to me, proves that I'm not waking up BECAUSE I have to urinate, but I go to the bathroom BECAUSE I'm in a very light sleep, or totally awake, and notice I could go,... and therefore I go.

So now today, the clonazepem is no longer working, and I'm weaning myself off of them again. I'm now trying some herbs to help with the withdrawal,...and I'm taking it much slower this time. A few nights back, just to see what would would happen, I adjusted my pressure back down to my original setting of 7, with the EPR to "off",(which was part of the original cpap prescription)

My AHI's have improved (go figure), although as stated, have always been below 3, with the occasional 4 or so. I am now back to waking several, if not up to 5 times per night. Sometimes I can fall back to sleep easily, sometimes not. I'm ALWAYS very exhausted the next day. About the only time I feel OK is if I get the opportunity to fall back asleep enough on the weekends, which results in enough "fragmented" sleep to at least feel OK at best.

So now what? I'm only posting this because I realize that those that are reading this can at least relate. I really wonder if I every really needed the cpap at all. I definitely snored, as confirmed by my wife,... but not if I was on my right side in particular. If I'm on my left side, I'd still occasionally snore a little(again, go figure?).

Well, that's my story and at this point I really wonder if I'm ever going to get a truly recuperative nights sleep. I'm now 55 years old, with two young children (5 y/o boy and an 8 y/o girl). Otherwise I've always kept myself in great shape physically, but as you can imagine, all these years of sleep deprivation is robbing me of the vital life I so desperately want back.

Again, I don't know what I expect from this forum. I just don't know what else to try. Another sleep study would still cost quite a bit more out of pocket than I have nowadays,.. even with my insurance, so now what. What would some of you guys do or try at this point?

Thanks for reading,
Marc

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Re: 3 years later...??

Post by msr0459 » Tue Aug 19, 2014 7:23 am

Thanks for your input. I have to get on my way to work right now, but will re read your post, and check out the link you posted this evening. I do agree with you though that surgery still seems very extreme to me. You'd think with my level of exhaustion I'd feel differently. I suppose since, for instance last night I only had a total of 4 hypopneas over 8.5 hours in bed, that my issue doesn't seem to be totally a "throat" issue. Thanks again,...will be back later.

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Re: 3 years later...??

Post by 49er » Tue Aug 19, 2014 8:32 am

msr0459 wrote:Thanks for your input. I have to get on my way to work right now, but will re read your post, and check out the link you posted this evening. I do agree with you though that surgery still seems very extreme to me. You'd think with my level of exhaustion I'd feel differently. I suppose since, for instance last night I only had a total of 4 hypopneas over 8.5 hours in bed, that my issue doesn't seem to be totally a "throat" issue. Thanks again,...will be back later.
Totally understand.

The issue is that without your machine, your AHI would be alot higher and you don't feel any better using it. Obviously, using it for now is the best option for health reasons. But long term, you need to sort out what your best option is.

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Re: 3 years later...??

Post by msr0459 » Tue Aug 19, 2014 6:15 pm

To expand upon last nights sleep efforts: As stated, I've been weaning myself off of the 2mg clonazepam tabs using a few different herbs, specifically valerian root, skullcap, and passion flower. I even for the first time last night placed a little lavender oil on a cotton swab, and placed it about a foot away from my cpap air intake. I'd read on here where many have tried that method to further aid in sleeping. I will say that last night, I did get up 3 times, but at least was able to fall back asleep all 3 times, so I wasn't completely exhausted this morning,... didn't feel "refreshed" by any means,... just not as bad as usual.

Again, when I first started back on the clonazepam, I would usually only awaken once during the night, and would get up to urinate. Some nights I would sleep straight through, though still not feel refreshed/rejuvenated, which to me means I wasn't getting enough Delta, or deep sleep. To me that would also indicate that my waking CURRENTLY multiple times a night is not a prostate problem/issue,...meaning now that I've built up a tolerance to the clonazepam, I'm waking multiple times per night, just like I did before sleep studies, cpap, etc.

From my research, I truly thought that perhaps my cortisol was spiking in the early a.m. hours. I went to a specialist and had my adrenals checked out. As you might expect, he said everything was functioning as it should be. I'm still not completely convinced. I've read that the type of tests an endocrinologist does isn't really a good indicator as to whether or not my cortisol is "spiking" too early in the morning. I did, on my own, order a saliva test and had it sent to a lab. It showed that my cortisol was definitely high during the 2-4 a.m. time frame,... which would explain my multiple awakenings during the night, which usually starts around 2 a.m. or so. The specialist used, from what I understand, a standard blood test, combined with a particular cortisol lowering drug, to see how my adrenals react. Again, he said all is well, so who knows?

As far as whether or not I need to use the cpap... at some point I believe I'll try a few nights without it and see how I feel. If I feel about the same as I do now, wouldn't you surmise that perhaps I don't really need to use the cpap? I mean, why bother if I don't "feel" more rested in the morning? Isn't that the main indicator as to whether or not the cpap is working or not? Since using the cpap, my wife says she does't notice me snoring,... but I also know that just because someone snores a little doesn't mean they have "apnea", which remember, I only showed that I had some hypopnea's in my sleep study. I do realize of course that if I had been able to actually "sleep" more during the study, there's a chance that some apnea's could have shown up.

So basically I suppose I'm as confused as ever. The only "plan" I have as of now, is to get completely off of the clonazepam, again. I'll likely continue to experiment with different herbs, though I have spent a small fortune over the years already on different herbs, and/or amino acids trying to help me get some recuperative sleep,... to no avail thus far.

Maybe as I can afford it, I'll give cognitive behavioral therapy a try, yet for some reason, I just don't think my problem is "in my head", so to speak. I could be wrong though, again, who knows,... obviously not me! lol

Thanks again for reading,
Marc

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Re: 3 years later...??

Post by library lady » Tue Aug 19, 2014 7:02 pm

Why bother if you don't feel more rested? The answer is, without it your AHI will go up and you will be more susceptible to heart attack and stroke. You are 55 and have two young children, ages 5 and 8. Wouldn't you like to live to see them graduate from high school? In thirteen years your youngest will be eighteen, and you will be 68... that's definitely doable if you don't have a heart attack or a stroke before then but both of those conditions are life-threatening if they are severe enough and the danger of going without cpap is the increased odds of having one of those emergencies. The primary purpose of cpap is to prolong your life, as well as give you more restful sleep.

Please come back here as often as you need to with specific questions about your difficulties and we will help you as best we can with our knowledge and/or experiences. You owe it to yourself and your family to stay with it.

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Re: 3 years later...??

Post by Paralel » Tue Aug 19, 2014 7:36 pm

Honestly, if I was you, I'd have another sleep study done, at a different place that isn't a disaster. From what you've written I'd have a high index of clinical suspicion that you have something going on that won't be helped by an xPAP. What exactly that is, it's impossible to say with the information you currently have available to you, as sleep is so incredibly multifactorial, which is why I think another sleep study is strongly indicated.

If that checks out, well, I think you would be best served by seeing a board certified sleep medicine specialist that is not a pulmonologist. Most specialists have what I call a "Hammer Mentality". They have one particular hammer they use because that's what they learrned, as a result, every problem they see looks to them like something that can be hammered down with the tool they have, even if that isn't the case. It's basically clinical myopia due to specialization. Sleep medicine specialists can be board certified through the specialties such as anesthesiology, internal medicine, otolaryngology, and neurology (as well as the aforementioned pulmonology, and a few others that are essentially irrelevant to the discussion at hand, like pediatrics). If I was in your situation I'd first hit up a sleep medicine neurologist to absolutely rule out anything neurological.

If you still come up empty, you may need to strongly consider the need to travel to a research university medical center that specializes in complex sleep conditions. There is an answer, it just depends on how difficult it may be to find it and how badly you want or need the answer.

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Re: 3 years later...??

Post by jencat824 » Tue Aug 19, 2014 9:17 pm

Marc,

First, how are you monitoring your progress & AHI? If you are using Sleep Head or other software, it would be helpful to post a few nights data here, we have some members who are great with spotting issues. Perhaps you have a leaky mask or mouth breathing issue. Or perhaps you have more complex apnea that might require a more sophisticated machine (bi-pap or ASV). Posting data could lead you to some answers so I recommend it.

Also, how's your sleep hygiene? Sounds like you have sleep maintenance insomnia. That's a tough issue to deal with. My hubby has insomnia issues really bad & because of his job, sleep meds are no longer an option. He is using herbals & supplements. What seems to be working for him is Valarian Root, GABA, 5-HTP & he recently added a new supplement, Kavinace. It helped, but. I'm still leary of the Kavinace because its a proprietary blend, so I don't know the amount of all its ingredients.

One of the most helpful tools in battling my hubby's insomnia was a book recommended by another forum member, RobySue, 'Sound Sleep, Sound Mind' by Dr. Barry Krakow. This book contains tons of helpful information on sleep hygiene, insomnia & lifestyle changes that can help bring about restful sleep.

Finally, I don't think stopping CPAP is a good idea. In fact it is probably a deadly one. Unless you have a sleep test that confirms you DO NOT have apnea in any form (even hypopnea's) its dangerous to take that chance. Sleep Apnea causes heart disease, high blood pressure, diabetes, strokes & other life threatening conditions that can be avoided by CPAP therapy. Why take the chance & stop lifesaving therapy because it hasn't fixed all, your sleep problems? Sounds to me like you have multiple sleep issues & need to get them sorted out & dealt with individually.

This forum is a wealth of knowledge & you may be able to find some answers here, or at least some helpful tips. First step would be to post some dates. When you post, let us know specifics such as 'for this night I got us 5 times, starting at 1am & every1/2 hour after that' etc. That way the data experts can help you learn to read the data so you can see specifics.

Good luck & don't give up that CPAP yet!
Jen

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Re: 3 years later...??

Post by 49er » Wed Aug 20, 2014 6:33 am

jencat824 wrote:Marc,

First, how are you monitoring your progress & AHI? If you are using Sleep Head or other software, it would be helpful to post a few nights data here, we have some members who are great with spotting issues. Perhaps you have a leaky mask or mouth breathing issue. Or perhaps you have more complex apnea that might require a more sophisticated machine (bi-pap or ASV). Posting data could lead you to some answers so I recommend it.

Also, how's your sleep hygiene? Sounds like you have sleep maintenance insomnia. That's a tough issue to deal with. My hubby has insomnia issues really bad & because of his job, sleep meds are no longer an option. He is using herbals & supplements. What seems to be working for him is Valarian Root, GABA, 5-HTP & he recently added a new supplement, Kavinace. It helped, but. I'm still leary of the Kavinace because its a proprietary blend, so I don't know the amount of all its ingredients.

One of the most helpful tools in battling my hubby's insomnia was a book recommended by another forum member, RobySue, 'Sound Sleep, Sound Mind' by Dr. Barry Krakow. This book contains tons of helpful information on sleep hygiene, insomnia & lifestyle changes that can help bring about restful sleep.

Finally, I don't think stopping CPAP is a good idea. In fact it is probably a deadly one. Unless you have a sleep test that confirms you DO NOT have apnea in any form (even hypopnea's) its dangerous to take that chance. Sleep Apnea causes heart disease, high blood pressure, diabetes, strokes & other life threatening conditions that can be avoided by CPAP therapy. Why take the chance & stop lifesaving therapy because it hasn't fixed all, your sleep problems? Sounds to me like you have multiple sleep issues & need to get them sorted out & dealt with individually.

This forum is a wealth of knowledge & you may be able to find some answers here, or at least some helpful tips. First step would be to post some dates. When you post, let us know specifics such as 'for this night I got us 5 times, starting at 1am & every1/2 hour after that' etc. That way the data experts can help you learn to read the data so you can see specifics.

Good luck & don't give up that CPAP yet!
Jen
Jen, I know your advice was very well intentioned but how long should Marc keep trying after 3 years. Five, ten? At what point do you say it is time to move on?

While I don't doubt that some cases of cpap intolerance are due to sleep maintenance insomnia, not all cases are and I think we do a disservice to people to assume that is true. I asked the sleep medicine dentist that I have corresponded with from the other board about how many of his patients who allegedly had sleep maintenance insomnia had it disappear once they had adjusted oral appliance therapy? He didn't know the exact number but thought it was quite a few.

By the way, I am not suggesting that oral appliance therapy is the answer. That also has some downsides although I am convinced if you find a very competent professional which is a whole other discussion that they can be mitigated.

And Jen, I don't mean to sound like I am picking on you as this has been a sore point of mine for quite awhile and is obviously a hot button issue for me. Obviously, Marc has to decide what the best course of action for himself is at this point. Maybe it is to continue with pap therapy but it may be he needs to look at other options.

Anyway, rant over.

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Re: 3 years later...??

Post by palerider » Wed Aug 20, 2014 8:15 am

jencat824 wrote: If you are using Sleep Head or other software
SleepyHead

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Re: 3 years later...??

Post by msr0459 » Wed Aug 20, 2014 8:34 am

Paralel wrote:Honestly, if I was you, I'd have another sleep study done, at a different place that isn't a disaster. From what you've written I'd have a high index of clinical suspicion that you have something going on that won't be helped by an xPAP. What exactly that is, it's impossible to say with the information you currently have available to you, as sleep is so incredibly multifactorial, which is why I think another sleep study is strongly indicated.

If that checks out, well, I think you would be best served by seeing a board certified sleep medicine specialist that is not a pulmonologist. Most specialists have what I call a "Hammer Mentality". They have one particular hammer they use because that's what they learrned, as a result, every problem they see looks to them like something that can be hammered down with the tool they have, even if that isn't the case. It's basically clinical myopia due to specialization. Sleep medicine specialists can be board certified through the specialties such as anesthesiology, internal medicine, otolaryngology, and neurology (as well as the aforementioned pulmonology, and a few others that are essentially irrelevant to the discussion at hand, like pediatrics). If I was in your situation I'd first hit up a sleep medicine neurologist to absolutely rule out anything neurological.

If you still come up empty, you may need to strongly consider the need to travel to a research university medical center that specializes in complex sleep conditions. There is an answer, it just depends on how difficult it may be to find it and how badly you want or need the answer.
Hello,

Sadly, the sleep specialist I had the sleep study done with IS a neurologist, and a very well respected one, at least as far as my research on him beforehand lead me to believe. As stated, after quite a while using the cpap therapy, and having him review my data,... which was actually good on paper,... all he did was prescribe some sleep meds, which I reluctantly tried, and which did nothing at all to help.

Eventually I tired of paying a $40.00 co pay for him to do nothing at all to help, IMO, and stopped going to my follow up appointments. For probably 2 years I plugged along using the cpap, changing pressure's, looking at the ResMed software data,... trying different herbs,.. all the while feeling exhausted nearly every day.

If I had unlimited money, I would, without a doubt seek out another sleep specialist. My dentist actually recommended me to go to the Charleston, SC sleep specialist division located at the University(he knows one of the board of directors), since I live here in SC. It's such a difficult position to be in though. The cost of going down that road I'm sure would be VERY steep, even with insurance. My family moved into a home 6 months ago, that, unbeknownst to me, had MANY water issues that weren't disclosed, and we are having to pay exorbitantly to have them rectified. I'm having to spend most all of my "off" time working on said issues. I can't afford to hire an attorney to try and sue the seller, due to the cost to litigate. Not to sound like a martyr, just saying that, while I obviously realize how serious an on going lack of deep sleep can be,... at the same time, I don't want to put my family deeper in debt chasing my sleep issues.

Marc

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Re: 3 years later...??

Post by msr0459 » Wed Aug 20, 2014 8:51 am

jencat824 wrote:Marc,

First, how are you monitoring your progress & AHI? If you are using Sleep Head or other software, it would be helpful to post a few nights data here, we have some members who are great with spotting issues. Perhaps you have a leaky mask or mouth breathing issue. Or perhaps you have more complex apnea that might require a more sophisticated machine (bi-pap or ASV). Posting data could lead you to some answers so I recommend it.

Also, how's your sleep hygiene? Sounds like you have sleep maintenance insomnia. That's a tough issue to deal with. My hubby has insomnia issues really bad & because of his job, sleep meds are no longer an option. He is using herbals & supplements. What seems to be working for him is Valarian Root, GABA, 5-HTP & he recently added a new supplement, Kavinace. It helped, but. I'm still leary of the Kavinace because its a proprietary blend, so I don't know the amount of all its ingredients.

One of the most helpful tools in battling my hubby's insomnia was a book recommended by another forum member, RobySue, 'Sound Sleep, Sound Mind' by Dr. Barry Krakow. This book contains tons of helpful information on sleep hygiene, insomnia & lifestyle changes that can help bring about restful sleep.

Finally, I don't think stopping CPAP is a good idea. In fact it is probably a deadly one. Unless you have a sleep test that confirms you DO NOT have apnea in any form (even hypopnea's) its dangerous to take that chance. Sleep Apnea causes heart disease, high blood pressure, diabetes, strokes & other life threatening conditions that can be avoided by CPAP therapy. Why take the chance & stop lifesaving therapy because it hasn't fixed all, your sleep problems? Sounds to me like you have multiple sleep issues & need to get them sorted out & dealt with individually.

This forum is a wealth of knowledge & you may be able to find some answers here, or at least some helpful tips. First step would be to post some dates. When you post, let us know specifics such as 'for this night I got us 5 times, starting at 1am & every1/2 hour after that' etc. That way the data experts can help you learn to read the data so you can see specifics.

Good luck & don't give up that CPAP yet!
Jen
Hi,

I'm currently using the ResMed software. For some reason, once I load the sim card into my computer, it doesn't always upload all the info it seems. For instance, last night the software is only showing the "events" and "AHI",.. then on other nights it'll show ALL the info, i.e., snore index, pressure, events, flow limitation, minute ventilation, leak, and AHI.

Not sure how to actually attach this report info. But for instance, last night, I went to bed around 10:30. I sleep through until almost 4 a.m., which is pretty good for me. The problem though is that I never really got back into a deep sleep(or any sleep), and consequently got up to go to the bathroom 2 more times until around 6:00 a.m., which is what time my wife has to get up,... which means I'm pretty much up at that point. So, again, exhaustion.

The night before was a little better. I again went to bed at 10:30. I slept for approx. 3 hours,>>> bathroom,>>> 3 + more hours,>>> bathroom, then 1 hr. 30 mins., then up at 6 a.m. or so, but... I felt better than I did today I believe because I had two sections of sleep that lasted at least 3 hours each, instead of last night that only resulted in one section of 4 hours.

Both nights my AHI was 0.3 and 0.4,... so again,... my problem is obviously not apneas or hypopneas, but the inability to sleep for longer stretches of time. I just wish there was something I could try that doesn't involve more sleep studies, which translates into more money... although I do realize that unless some kind of miracle happens,... I'll have to eventually do down that road, again.

Thanks,
Marc

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Re: 3 years later...??

Post by Kennerly » Wed Aug 20, 2014 9:29 am

Marc:

Sorry about the difficulties that you are facing. I know what it's like to go on sleep meds and to stay on them waaay past the recommended duration. And unfortunately I've also had to deal with the rebound insomnia when coming off of them. In my case it can throw me straight into depression. Be careful to just reduce as the docs recommend: by one clinical dose at a time. Never fast or cold turkey.

I'm with some of the folks above who recommend another study, but with the caveat that you first try to locate a really good sleep doc. After my apnea diagnosis when my sleep doc was prepping me for PAP he explained that just preventing apneas is sufficient for most of his patients, but for others its not. So his approach is to help the patient reach a successful level with the cpap, then reevaluate at that point and see what else might still be lurking around. Seems to me that this is exactly the point that you are stuck at, but your doc either isn't fully aware of this, or isn't invested enough in your care, or isn't capable enough.

To 49ers point regarding whether after 3 years enough is enough, I"m in a very similar boat as you both seem to be, so I can definitely "feel your pain." I think however that focusing on elapsed time is a faulty approach. Instead we should think more in terms of milestones reached, or checked off if you will:

AHI consistently low? Check... Consistent 45-55 hours per week at therapeutic levels? Check... Leaks low? Check...

You get the point. The folks on this board can supply the wizardry needed to make sure that you get everything PAP related checked off, especially if you supply sufficient data. But for some of us this is just stage one, and there is more exploration required after that, and the length of time spent at it so far really isn't the issue. (By the way 49er thanks again for your input on generics the other day, it was really helpful.)

So Marc I really would recommend you stay the course, but maybe with a better doc guiding you. Also if you post your graphs on this forum the folks here may spot something helpful.

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msr0459
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Re: 3 years later...??

Post by msr0459 » Wed Aug 20, 2014 9:47 am

library lady wrote:Why bother if you don't feel more rested? The answer is, without it your AHI will go up and you will be more susceptible to heart attack and stroke. You are 55 and have two young children, ages 5 and 8. Wouldn't you like to live to see them graduate from high school? In thirteen years your youngest will be eighteen, and you will be 68... that's definitely doable if you don't have a heart attack or a stroke before then but both of those conditions are life-threatening if they are severe enough and the danger of going without cpap is the increased odds of having one of those emergencies. The primary purpose of cpap is to prolong your life, as well as give you more restful sleep.

Please come back here as often as you need to with specific questions about your difficulties and we will help you as best we can with our knowledge and/or experiences. You owe it to yourself and your family to stay with it.
Thank you for your concern, I do appreciate it. I am aware of the health consequences that NOT using cpap therapy can bring. That said, I've used the unit religiously for the past 3 years. As for my age... not to brag, seriously,... but I've always been a physical fitness/nutrition type since my late teens. I even was a certified personal trainer for many years(but on a part time basis). When I met my wife, I figured she was young, I just didn't know how young. At the time I was I believe around 43,.. she say's she "assumed" I was in my early 30's. Long story short, before we knew it, it was too late!, lol... even though there was an 18 year difference in our age. We did have the discussion of children early on. I never had children, and so, BECAUSE I still felt like I was in my early thirties, if not late twenties, physically speaking that is,... I was more than delighted to now have the opportunity. Obviously my children and my wife are the best things to happen to me.

Now however, with the ongoing insomnia problem,... I admittedly constantly think about seeing my children grow to adults. I feel like on most days my insomnia has definitely taken back many biological younger years from me. Now, crazy enough,... on any given weekend when I happen to get enough sleep to feel "OK",... I'm able to get a workout in,... do 6 + hours of very intense work outside, i.e., excavating foundation dirt for french drain,... moving tons of serge stone by hand,...etc., lol. Again, I state this not to brag, but to point out that "hopefully" I'm still in pretty decent shape, in spite of my insomnia. Every physical I've had for the past decade has been spot on, according to my family physician. My blood pressure is still great, my blood work superb,...I'm simply told to "keep doing what I'm doing", as far as working out and nutrition goes.

Now I'll admit though that on the day that I feel absolutely horrible,... I do indeed "feel" like I'm 55, if not OLDER! ugggg Then, I'll get a little sleep, and I'll be almost back to my vital self again. It's quite a battle though.

I do so wish I could just SLEEP THROUGH THE NIGHT!,... without prescription meds of course.

Marc

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Kennerly
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Re: 3 years later...??

Post by Kennerly » Wed Aug 20, 2014 9:53 am

Incidentally, if you are still going through the withdrawal period from your sleep meds you may see some funky results on your graphs for awhile. Especially if you have a problem with centrals.

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