3 years later...??

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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49er
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Re: 3 years later...??

Post by 49er » Wed Aug 20, 2014 10:05 am

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:
Kennerly,

You make some good points but what if you can't stay asleep on the machine as I have been unable to do no matter what so far? I am still not out of things to try, which includes a desperately needed full scale sleep study that I can't for some reason get sleep doctors to order that I have seen. I am trying another route next week that hopefully will work. But if that doesn't provide any answers and the general consensus is that my nasal issues aren't impacting pap therapy tolerance which I don't know is the case or not, it is time for me to move on.

I guess my point is you could spend years chasing milestones that may be simply unobtainable no matter what you do. It is clear to me that there is a significant subset of people even though many folks on this board would deny it who can't use cpap in spite of their best efforts. Whether the three of us are in that category, I have no idea but I think we need to be honest about this and stop pretending that everyone has a happily ever success story.

Glad I hoped you on the generic drug issues.

Anyway, let's hope we all find some answers.

msr0459
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Re: 3 years later...??

Post by msr0459 » Wed Aug 20, 2014 10:09 am

Kennerly wrote: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.
Presently I'm still only down .25 mg from my original prescription of 2 mg. I have been at this dosage since 8/8... so I'm pretty sure I've "evened out" for now. I'll likely have more battles every time I reduce the dosage though. Since I've reduced my pressure down to what was originally prescribed, which is 7,... I've had no centrals, and only a few hypopneas.

Thanks though,
Marc

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Re: 3 years later...??

Post by palerider » Wed Aug 20, 2014 10:58 am

msr0459 wrote: 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.
you might want to try sleepyhead, http://www.sleepfiles.com/SH I find it a lot friendlier, and easier to get around in than resscan, and it shows more information on one page, so you're not going to a bunch of different tabs, and it's a lot easier to zoom in and see the detail if you want to.

plus, you can hit 'f12' and it'll make a screenshot, that you can then upload to an image sharing site, like photobucket or imgur, then post the link here.

like this:

Image

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Re: 3 years later...??

Post by Kennerly » Wed Aug 20, 2014 11:00 am

Actually 49er I don't really disagree with you. It's damn frustrating, and creating unrealistic expectations doesn't help.

Maybe for us hard cases it's more of a measured pace sort of thing. Try to move forward but do it at a pace that doesn't unravel everything else. Easier said than done when you're always fatigued ...

Then unfortunately there are also the financial tradeoffs.

I would still though be careful about putting much emphasis on how long it's been since someone was first diagnosed and first got a CPAP. As we often see on this board some people who are years into the process still haven't even had a look at their own data, have never seen their sleep study, etc. And many times it's through no fault of their own...

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Re: 3 years later...??

Post by msr0459 » Wed Aug 20, 2014 11:09 am

Kennerly wrote: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.
I'm pretty sure I'm in a "holding pattern" as far as the clonazepam goes. I reduced my dosage from 2 mg down to 1.75 mg back on 8/8, so, according to that meds half life, I should be normalized by now. I know I'll have more "battles" to come when I reduce the dosage again.

Since reducing my pressure down to the original prescription, which is 7,...I've had no central's, and literally only 3-4 hypopnea's per night. This has only been for last 3 nights, so I'll see if the trend continues. Again, it's the multiple awakenings, and, IMO, not reaching the delta/deep sleep is why I still feel totally exhausted most every morning.

Thanks though,
Marc

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Re: 3 years later...??

Post by Paralel » Wed Aug 20, 2014 3:42 pm

Reading this I had a thought pop in my head, did the endocrinologist check your testosterone, total, as well as free, and SHBG?

It's one of the more unusual symptoms that can be seen, but severe sleep disturbances have been known to occur with testosterone deficiency, which requires those three tests to accurately diagnose. One can appear to be fit, healthy, etc... while having a deficiency that only manifests in very unusual ways. It would be rare, but it's not out of the realm of possibility. The tests would be inexpensive, far less so than anything else suggested so far. Your age puts you in the prime category in which it is typically diagnosed (40-50's).

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Re: 3 years later...??

Post by msr0459 » Thu Aug 21, 2014 6:39 am

Paralel wrote:Reading this I had a thought pop in my head, did the endocrinologist check your testosterone, total, as well as free, and SHBG?

It's one of the more unusual symptoms that can be seen, but severe sleep disturbances have been known to occur with testosterone deficiency, which requires those three tests to accurately diagnose. One can appear to be fit, healthy, etc... while having a deficiency that only manifests in very unusual ways. It would be rare, but it's not out of the realm of possibility. The tests would be inexpensive, far less so than anything else suggested so far. Your age puts you in the prime category in which it is typically diagnosed (40-50's).
It's been about a year back or so since the endocrinologist testing. I don't believe he tested for testosterone. My GP has tested during my normal physicals, though I doubt the test was also for "free" as well as "SHBG", as you have suggested. All know is that the physical shows "normal" for my age, whatever that means.

When I did my own "saliva" hormone test done, through an online lab/company. I did show my testosterone was on the "low end" of the acceptable range for my age. I tried supplementing with DHEA for over a month, without any noticeable results or improvements. I'm still not even sure if the saliva tests are accurate or not, as there are, as usual, varying opinions.

Marc

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Re: 3 years later...??

Post by msr0459 » Thu Aug 21, 2014 7:15 am

palerider wrote:
msr0459 wrote: 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.
you might want to try sleepyhead, http://www.sleepfiles.com/SH I find it a lot friendlier, and easier to get around in than resscan, and it shows more information on one page, so you're not going to a bunch of different tabs, and it's a lot easier to zoom in and see the detail if you want to.

plus, you can hit 'f12' and it'll make a screenshot, that you can then upload to an image sharing site, like photobucket or imgur, then post the link here.

like this:

Image
OK, I've downloaded "sleepyhead" and uploaded my data. It doesn't look exactly like your screenshot, but similar. I haven't as of yet figured out how to upload the screenshot and then post on here. Gotta run to work for now, will try again later.

Thanks,
Marc

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Re: 3 years later...??

Post by Paralel » Thu Aug 21, 2014 11:30 am

msr0459 wrote:
Paralel wrote:Reading this I had a thought pop in my head, did the endocrinologist check your testosterone, total, as well as free, and SHBG?

It's one of the more unusual symptoms that can be seen, but severe sleep disturbances have been known to occur with testosterone deficiency, which requires those three tests to accurately diagnose. One can appear to be fit, healthy, etc... while having a deficiency that only manifests in very unusual ways. It would be rare, but it's not out of the realm of possibility. The tests would be inexpensive, far less so than anything else suggested so far. Your age puts you in the prime category in which it is typically diagnosed (40-50's).
It's been about a year back or so since the endocrinologist testing. I don't believe he tested for testosterone. My GP has tested during my normal physicals, though I doubt the test was also for "free" as well as "SHBG", as you have suggested. All know is that the physical shows "normal" for my age, whatever that means.

When I did my own "saliva" hormone test done, through an online lab/company. I did show my testosterone was on the "low end" of the acceptable range for my age. I tried supplementing with DHEA for over a month, without any noticeable results or improvements. I'm still not even sure if the saliva tests are accurate or not, as there are, as usual, varying opinions.

Marc
Total testosterone, as a value by itself, only gives you 1/2 the story. because the "active" portion of that total is the "free" portion. The "non-free" portion is bound to SHBG and inactive. If your total is normal, but your SHBG is too high, then you can still be deficient because the free portion, being the active potion, is too low. Total testosterone and SHBG should always be done together because they are both influenced by different factors. If your SHBG comes back high, then you'd want to do a free testosterone value specifically using the equilibrium dialysis methodology, as there is more than one way to obtain this value, but equilibrium dialysis has been proven through research to be the only methodology that has any accuracy. Many people that read this may think "Well, if you know total, and SHBG, you should be able to calculate free without having to do another test". This kind of calculation often has a correlation that is just too variable to be completely accurate because other things also bind testosterone other than SHBG, and all those factors add up together to push the level either up or down. One may also think reading this "If that's true, why not just do all three at once" the main reason this often doesn't happen is that unless total testosterone or SHBG are abnormal insurance won't pay for a free testosterone value because it is not a cheap test and they have no interest in paying for it unless they have no choice, as either one of those other two values being abnormal would be enough clinical evidence to qualify for further investigation. If your physician can convince your insurance to do all three at once and it won't cost you much more than just doing the two, I'd go for it. It saves you wasted time with another blood draw, another wait, and another call or visit to get the results. Plus, the results of all 3 at once are much more tightly correlated than two values at one time and one value at another time. Also, you always want to get your blood draw for total testosterone, SHBG, and free testosterone between 7 and 8 AM in the morning, as that is when your level will be at peak, and is the reference point used for determining sufficiency. Doing it any later in the day, you risk a false positive as levels drop throughout the day.

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Re: 3 years later...??

Post by msr0459 » Sun Aug 24, 2014 10:38 am

OK, I've been monitoring my data through "SleepyHead" over the last week or so. I've managed to save a screenshot as a jpeg, but can't figure out how to attach it to a post.

Can anyone help with that, or direct me to the instructions somewhere on this site?

Let's see if this works, here's link from Photobucket. Not sure if it'll show up as a jpeg though.

http://s1141.photobucket.com/user/msr04 ... 4.jpg.html

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Re: 3 years later...??

Post by msr0459 » Sun Aug 24, 2014 11:01 am

Well, I can see that you guys will have to actually click on the link. That said, I'm still not familiar enough with SleepHead to know what the results are telling me,...other than as usual, just like with the ResMed software, my AHI is VERY low, yet I still wake several times a night(usually), and even when I don't, I still NEVER feel rejuvenated, only varying degrees of exhaustion.

Please, again, I'm not feeling sorry for myself. It's just been so long since I've experience a truly "good" nights sleep. Not really sure why I waited 3 years into my cpap therapy to try and find an answer.... again. As I recall, it was probably around the 6 month or 1 year point that I started trying to find an answer,... since my sleep doc was basically worthless, i.e., sleep meds either don't work at all on me, or not for very long,... and besides,.. IMO sleep meds are for sure just a "band aid" on the problem. As others on this thread have already alluded to,...I really don't think my problem is JUST having a few apneas or mainly only hypopneas,...it HAS to be something else.

I think with me, after searching and re searching over and over again,...herbal remedies, yoga stretches, deep breathing,...etc,.. I just get mentally exhausted and just give in to the status quo. Oh well, maybe if some of the more savvy cpap software folks on here can have a look at my data, I can move on from there.

Also, as stated,... I'm still weaning myself off of the clonazepam 2 mg tabs. I just decreased another .25 last night, so as expected,.. last night was EXTRA crappy! lol....( I have to laugh to keep from crying,...seriously). I think I'll wait until completely off the sleep med until posting more,.. unless someone suggests otherwise.

Thanks again to all for reading,
Marc

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Re: 3 years later...??

Post by palerider » Sun Aug 24, 2014 2:22 pm

msr0459 wrote:Well, I can see that you guys will have to actually click on the link. That said, I'm still not familiar enough with SleepHead to know what the results are telling me,...other than as usual, just like with the ResMed software, my AHI is VERY low, yet I still wake several times a night(usually), and even when I don't, I still NEVER feel rejuvenated, only varying degrees of exhaustion.
I can't say anything about the sleep med, but your cpap data looks good, which makes me think your problem is elsewhere.

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