BrainsNeedSleep

Member since:

Dec 5, 2014

Number of posts:

99

Reply to tired now that using cpap
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[-] BrainsNeedSleep +0 points · about 1 year ago

I love to read from other patients who persist in trying to figure out their own care, while at the same time despair at the state of sleep care for so many. Keep advocating for yourself! And have you tried the SleepyHead software created by JediMark? It's available online, and also check out SleepImage -- "cardiopulmonary coupling" and you can see, and your physicians can see, a lot more data than will be available from your CPAP. Good luck!

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[-] Verne7 +0 points · about 1 year ago

I imported the Sleepyhead software before I changed my machine. Since I regularly sleep past noon, the Resmed myAir splits my sessions to the wrong days. Sleepyhead allows me to see the real sleep session. It is interesting though to look at the wrong one. Like today in my last hour I had an AHI of 3.5, along with lots of leaks at the end there. Total sleep period(9.4 hrs) AHI of 2.23 according to Sleepyhead. That last hour of sleep will be added to the results the Resmed site calls tomorrows sleep session.

But it is interesting. I woke up with my heart pounding, and bad blood pressure readings... And, seemingly it was all in that last hour.

EDIT: Ha ha! I found 1/2 of my nighttime bp meds on a table! I had set them down when I searched for the other med that I had just gotten at the drug store. So, that's the reason for the bad blood pressure yesterday. Todays waking pressure is showing the apap is working fine - 136/85 and a heart rate of 55. That's the rate I used to be before the Afib onset in April. The bp is kind of new, I've never been able to stay at this level unless I was exercising. In fact, my meds may begin taking my readings too low and will need to be changed. Time to see the Doc.

Reply to cpap problem
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[-] BrainsNeedSleep +0 points · about 1 year ago

So one good strategy for all patients leaving the overnight sleep test is to have written down the name and size of the mask found effective? And that should go to the DME. And the DME should provide that mask. Some seem to carry only a few selected masks, but they (IMLE) do seem to carry some of the "most popular". I have also had better luck with ResMed masks - the AirFit FFM in particular seems to shift least when I am on my side, and I have a hard face to fit. The CPAP pillow you see in the catalogs was miserably uncomfortable and did not prevent shifting at all. Experiences may vary...

Reply to cpap problem
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[-] BrainsNeedSleep +0 points · about 1 year ago

Hmmmm...sounds interesting! Numbers under 1 = good!

Reply to Resmed Airsense 10 for her help with nose pillow
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[-] BrainsNeedSleep +0 points · over 1 year ago

Before I had to return to a FF mask for unrelated reasons, I also used the Swift FX nasal pillows and LOVED them -- no issues with soreness at all, ever. Respironics also has a new nasal-kind-of mask where it doesn't actually go up into the nostrils and it seems to be pretty cool -- though, alas, at the moment I cannot use it. I am hoping to adapt my stuff to work with it one of these days. I wonder if those satin pillowcases that women use to keep their hairstyles from getting messed up (at least my elderly aunts did) would be helpful in reducing mask slippage, especially with nasal pillows.

Reply to Singer performer suffering with dry mouth and throat
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[-] BrainsNeedSleep +0 points · over 1 year ago

You wrote: "My sleep study scores were 5 episodes per hour during light sleep and 12 during REM sleep. I was really only prescribed the machine because my oxygen drops to 81%." *This is the stuff that drives me nuts. * YES you needed the machine because of the O2 desaturations down to 81%, but you ALSO NEEDED IT because of the numbers! It is NOT only the number of apneas/hypopneas that causes trouble, and the desaturations they can cause in some but not all people, but ALSO the *sleep fragmentation! * ANYthing that rouses you out of the normal sleep "architecture", that cycle of light/deeper/deep sleep we do, can become a problem if it happens frequently enough for long enough. I don't know who suggested you really only needed the machine because of the desaturations. The AHI numbers are a moving target, the machines and the scoring are variable, and you need to protect your sleep regardless of the numbers. If they tell you AHI of 5 is normal -- here's a pound of salt for you. IF they tell you under AHI of 15 is acceptable -- here's a ton of salt for you, and in my own imperfect but long-experienced opinion, get yourself a second opinion. It's YOUR brain, it's YOUR life, and a lot of what I am learning about AHI and guidelines etc is politics. By the way, I loved the suggestion of trying to keep tongue on the roof of the mouth -- I will have to try that one, now, too. And Dan's suggestions about the humidifier etc were (of course) great, and I only ever wake up with such dryness and/or sinus headache when I have, despite my best efforts, slept on my back with my mouth open OR if the humidifier ran out of water. Good luck!

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[-] DiligentChocolateSparrow1989 +0 points · over 1 year ago

Thank you, BrainsNeedSleep!

Yes, the sleep study folks said that my numbers were low enough they didn't think I'd get put on a machine. My neurologist ordered oxygen for me right away while I waited to get to the sleep lab again. My pressure score was 16 but I was suspicious because the stupid mask leaked all night at the lab and I told them that. It was a nightmare. I got my machine programmed to 16 with a ramp feature but I thought I was going to die. It just didn't feel right. I couldn't sleep at all because I kept swallowing a ton of air and burping after each breath. I was persistent in asking for help and my neuro doc had my machine set to auto-titrate (between 8-16) and sure enough, my number usually sits around 10 on average.

I don't think I want to live without my machine. I slept fine until I had children #4, 5, and 6. About 20 years ago I began waking up a lot at night (with 3 kids under 3 I had to!) but once the kids started sleeping I was still waking. I thought I would get back into a good sleep pattern but never did. A couple years ago I was waking up 12-15 times a night and thought it was normal! I reported this to my primary doc and after asking me if I snored (I don't) he just gave me the normal advice for better sleep habits... which I tried to no avail.

So, after gaining weight... having my BP go up slightly... being exhausted every.single.day... I also began having muscle spasms.. and then occasional headaches. One got so bad I thought I was going to die so ended up in the ER. I kept almost passing out and my MRI showed those white spots in my deep white matter... so off to neurologist I go. I gave him all my symptoms and he carefully listened and said "I'm pretty sure you have sleep apnea." I was floored! He told me every single one of my symptoms pointed toward the apnea. We'd already ruled all other causes out. I encourage everyone to get checked form sleep apnea now. Wow... it can do some serious damage.

I recently began riding my mountain bike 5 days a week and I'm into week 4 now. I am building muscle and hopefully losing some weight. I have a TON of energy during the day compared to what I used to have and I can actually THINK clearly now. It no longer takes me an hour to fall asleep. I am asleep in less than 5 minutes. I no longer have to stay in bed for 10 hours to feel somewhat rested... I'm ready to hit the floor running after 7 hours! My machine is giving me my life back.... and if I can keep my tongue from drying up I'll keep singing too!!

Thanks and check out my reply to Dan up above... it explains the 4 things I've tried for this dry mouth...

Reply to Help Adjusting Cpap
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[-] BrainsNeedSleep +0 points · over 1 year ago

Wow, Dan, I didn't know that about the machines and I have been for a while using the same one!
For what it's worth, that C-Flex option is GREAT for those of us with claustrophobia --

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[-] DanM +1 point · over 1 year ago Sleep Enthusiast

Hi BrainsNeedSleep. The process is mention above about monitoring for 30 days and then going to a fixed pressure is only for specific machines that are set to that particular mode. An APAP machine stays in automatic mode all of the time and will adjust pressures as needed. APAP never automatically changes to a fixed pressure. Glad you find the C-Flex option helpful! I have found C-Flex/A-Flex and other similar functions helpful for improving comfort as well.

Reply to More tired than before!!
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[-] BrainsNeedSleep +0 points · over 1 year ago

weird, I wrote a reply to you but it seems to have disappeared along with a reply by someone else.
The short answer should be, we don't know what else is going on with you that could account for this. Additional info: if you have had the condition for a long time, then there is a period of time (varies by who tells you) where your body is trying to make up sleep, and your sleep architecture can change so you wind up having your regular get-up time be in the middle of deep sleep, which is miserable and can make you cranky and groggy. If you don't notice improvement, get back to your doc and don't take a non-answer for an answer. Are you having mask leaks, and so aren't getting full benefit from therapy? All kinds of things could be going on.

Reply to Brain Fog: Understanding Excessive Daytime Sleepiness & Sleep Apnea
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[-] BrainsNeedSleep +0 points · over 1 year ago

Yikes. Have you looked at Dr Thomas's article on complex sleep apnea? I've got it myself and didn't get treatment that worked until I went to see him and started using the EERS treatment (simple) -- massive change. Here's a link to the article on this site: https://myapnea.org/blog/2016/02/complex-sleep-apnea or go to Blogs, then Research, and look for that title. I don't know if that will help, but .... give it a read?

Reply to Can I submit data from my SD card?
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[-] BrainsNeedSleep +0 points · over 1 year ago

I'm not sure I entirely understand your post, especially the question at the end. One reason SleepyHead might be saying there is no new info could be that, after the last time you downloaded from your SD card into SleepyHead, you left the SD card locked. If the SD card is locked and you put it back into the CPAP, the PAP will not be able to write new data onto the card.

For those who use PCs, the SD card apparently does not need to be locked before inserting the card into your computer's SD card slot. I use a Mac laptop and MUST lock the card first, or Mac, an otherwise delightful fellow, will try to write a bit of code onto the card and mess things all up. So I have to remember to LOCK card, then insert into computer to upload, then eject card, UNLOCK it, and reinsert into the PAP machine.

Does that help at all?

As for the download: into SleepyHead, you will get all kinds of data, most of which unless you are a respiratory tech or sleep professional -- OR a very-well-educated consumer -- you will not know what to do with. MyApnea is hoping at some point to have some info here about how to look at SleepyHead data; there are other forums on the web where some people have become quite expert at it and will offer help (at your own risk); but basically it will tell you what the MACHINES are flagging (there will be more things happening than the machines will flag...). ResMed does not flag "RERAS" and Respironics does -- in SleepyHead -- but all will show apneas, hypopneas, snoring, mask leaks etc. The most important thing is the breathing waveform -- it looks like a black squiggly line all night -- and that, like the other horizontal band charts, is expandable so you can see down to the seconds exactly how you are breathing. You also see when things happen in relation to each other: mask leaks happening and triggering an apnea, for instance...

This is all a lot of info. But if you learn it, you will be able to tell what behavioral, pharmaceutical, and/or even dietary changes you make that hurt and help your sleep. It has made a huge difference for me, and I am in NO way a well-informed or skilled user.

good luck.

Reply to Can't wake up in the morning
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[-] BrainsNeedSleep +0 points · over 1 year ago

A couple of things:

  1. Using one number to judge sleep IMO is ... let's just say not the best idea. Use your judgment about daily functioning, regardless of the numbers. For me, I can be a zombie with an AHI under 2 -- but if my sleep fragmentation was bad the night before, the next day functioning is definitely impaired: I've been tracking this for over 6 months in specific fashion now.
  2. I am not entirely certain of this but I have been told that once you start on the PAP, you are having some sort of make-up sleep, may have rebound REM (again, not sure of the terminology), and your sleep architecture (what stage you're in, at any given point of time) changes. So as another responder above said, it may be that now you are in deeper sleep at get-up time, and that certainly can make you feel groggy. Brain fog, on the other hand, that lasts all day, is a separate issue.

I would suggest, if you are so inclined, to download SleepyHead software, and read the data on your SD card in SleepyHead. That will give you a much, much better idea of what is actually going on in your sleep than the software your PAP company gives you. In conjunction with my ResMed device, I am also using a separate device called SleepImage, and this week am tracking the data from that with the data in SleepyHead to sort out a few remaining issues.

Good luck with this -- come back and let us know how it's going, and I wouldn't wait too very long for improvement. A few weeks, a month, and you should be seeing SOME sort of betterment, IMO.

Reply to Can I submit data from my SD card?
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[-] BrainsNeedSleep +0 points · over 1 year ago

LOVE SleepyHead. Am also doing a trial of SleepImage.com (no relation) and like that it gives sleep interruptions (trying to find out from them what they are, to the device) and also position in bed -- I thought I had managed with pillows to stop rolling onto back, but -- apparently not!

JediMark tells on his site which machines and oximeters his software supports.

Reply to CPAC machine and brain fog
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[-] BrainsNeedSleep +0 points · over 1 year ago

OMG! Been there, done that, FINALLY getting better! If you would like some more reading, read the article I wrote for this site (briefly) about my experience -- specifically about the EERS treatment for complex apnea that has given me my brain back, but in general you may notice some similarities to your experience.

Catch it before it gets worse!

And YES, aerobic exercise -- I am doing the hamster thing at a gym on an elliptical and a recumbent bike, too many ortho issues for running -- helps VERY much! In fact, I am due to go do mine today in an hour...writing fast, here :-)

The brain fog, in my somewhat educated opinion, is a result of several things: how is your diet? I found wheat and sugar killed my brain, made fog worse; how is your apnea treatment? ARE you in fact being treated adequately and/or properly for the kind of apnea you have; and what drugs are you taking, because some of them actually can cause that brain fog....

Let us know how you do! https://myapnea.org/blog/2016/02/complex-sleep-apnea-a-patient-s-story

Reply to Poor Sleep Using CPAP
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[-] BrainsNeedSleep +1 point · over 1 year ago

Hiya --

I have discovered through trial and error and years of waking up exhausted that -- for me -- it is the number of RERAS, or respiratory-effort-related-arousals that matter, and those are not included in the almighty "AHI" that everyone points to. Unless some do include RERAS, I have been given to understand it is the apnea/hypopneas index -- and that does NOT give you ANY measure of sleep fragmentation, which will make you feel like horsehockey in the morning!

In fact, I have had AHIs of 3 and felt better on awakening than I have with AHIs of 0.3 -- no typo there -- but when I put my SD card (from a Respironics machine, the ResMeds don't flag these in the software -->) into SleepyHead software, the mornings I feel like horsehockey, I have had a BIG batch of RERAS in the couple of hours before get-up; mornings I wake up okay or good, very few.... and the sleep fragmentation is what got me into the horrors of bad cognitive deficits.

My guess is that just about ANYthing can fragment your sleep: a restless bed partner, sore muscles, too much sugar/carb before bed, a dangerous neighborhood with gun shots or break-ins, a dangerous relationship, a sick child or significant other....if it fragments your sleep, and you wake up too many times each night, you are going to be in a world of hurt.

So I suggest if you aren't already doing it, go find JediMark's opensource software program called SleepyHead -- it's on his own site now and supports the newest of the Respi machines, so he's keeping it current. Flip him some bucks if you think the software is helpful. There's a lot to learn, but if nothing else and you have a Respi machine, you'll see the RERAS and can track your own subjective quality of sleep versus the somewhat more objective machine data.

You could also go check out SleepImage.com -- I am doing a trial of that device right now, and it provides some info I'm still learning to discern.

Good luck, and let us know how you're doing?

Reply to New machine
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[-] BrainsNeedSleep +0 points · over 1 year ago

Can you explain what it is you aren't sure you "agree with the whole sleep apnea thing" about? Maybe we could help sort it out with you.

Reply to Data for FAA
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[-] BrainsNeedSleep +1 point · over 1 year ago

Hi, captain -- I have a friend who is a pilot and he uses an old Respironics but is now getting a Dream Station; whatever you get, also download SleepyHead opensource software because if you really want to see what's going on, right now that's the way to do it. All the top machines will provide the insultingly-labelled "compliance" data to your doc. But unless you have a keeper, most docs just want to know your AHI is 5 or less. YOU want to know if your sleep is actually good sleep, and for that you need to do a wee bit of work. JediMark, who created SleepyHead, now has updated downloads available on his own website, including versions that support the new DreamStation. And as a long-time PAP user, let me tell you, your brain WANTS to be on that machine any time you sleep, not just the "compliance" time. Come back for more ....

Reply to What is Winx?
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[-] BrainsNeedSleep +0 points · over 1 year ago

Dan, what are the potential side effects of that treatment? And do you have any sense of how often docs actually LOOK in people's noses? Dr Thomas was the first one who ever did, and that was only after finally I got an ENT to check it and try to fix it. The airway begins in the nose, doesn't it?

Reply to Apnea or Emphysema!? Help.
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[-] BrainsNeedSleep +0 points · over 1 year ago

Another thing -- regarding the weight despite eating well -- I'd like to offer what has worked for me -- the "whole grain, healthy carb" recommendation spiel is not necessarily so helpful. In a weak moment I caved and bought a package on a fundraiser on public television, read it, and experimented -- and not only did it help with weight, but it changed my brain fog significantly. If you're interested, Dr David Perlmutter's book Grain Brain is one place to start. Your library may have it or be able to obtain it for you. High healthy fat/low carb helps me tremendously. This is the first winter I have not put on the extra 10-15 pounds and I am able to maintain stable weight for the first time ever. You might care to try it once you feel you are sleeping better. Which I hope is very very very soon!

Reply to What would you like to learn about?
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[-] BrainsNeedSleep +0 points · over 1 year ago

Personally the only software I use or trust is SleepyHead. Still learning how to use it well.

Reply to Central apnea?
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[-] BrainsNeedSleep +0 points · over 1 year ago

I am not a medical doctor either but 89 I have been told is not good, but it depends on how long, how often, etc. As for whether it represents central sleep apnea, I believe oxygen desaturations occur with any sort of event, obstructive or central, that lasts long enough (I may be incorrect on that) -- but you should look at the details in your sleep study report (be sure to get a copy for yourself!) -- it will tell you how many events were obstructions, partial obstructions, and centrals. If you have a mix of them, go to the article on here in the RESEARCH section by Dr Robert Thomas about complex sleep apnea. That might help. Good luck and let us know how you do.

Reply to Biggest obstacle
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[-] BrainsNeedSleep +0 points · over 1 year ago
  1. a friend helped by sending me her unused CPAP and mask (!), and telling me to go on cpaptalk.com, where people helped me set the machine for my prescribed pressure and provided more information than I could absorb at the time. THIS website did not exist back then.