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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Rob K
 
Posts: 142
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Re: New to the forum. Looking for answers.

Postby Rob K on Mon Feb 13, 2017 7:57 pm

Makes sense. I'll try turning ramp off.

I also want to elaborate a little more on the pressure settings you all helped me with.

My body is starting to seem a lot more relaxed during all times of the day now. I seem to be getting into a deeper state of sleep now that my nervous system is not on high alert. I don't know how else to describe it. The constant ache that was throughout my entire body right down to my bones is starting to go away. I have pretty severe aching, shooting, tingling, throbbing pains that affected every part of my body. Driving just a half hour was pretty often torturous. Often had morning headaches and felt horrible for quite a while after I woke up. Gets a little better through the day.

The doctors were convinced I had a nervous system problem. They couldn't explain it so they diagnosed me with fibromyalgia, I had all the symptoms. This was confirmed by two different doctors and clinics, my local clinic and Mayo. I kept telling them that I have sleep apnea and feel much better when I get a lot of sleep, but they still said I had fibro. I went to two different sleep doctors and clinics to figure this out also. I'm starting to believe I was right in saying that their diagnosis was wrong and that most of my problems were due to sleep deprivation. At least that's what it seems like so far. Time will tell.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software
Last edited by Rob K on Tue Feb 14, 2017 7:34 pm, edited 1 time in total.

Rob K
 
Posts: 142
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Gender: Male

Re: New to the forum. Looking for answers.

Postby Rob K on Tue Feb 14, 2017 7:21 pm

Turning the machine off and on worked for keeping track of how many times I wake. Forgot to do it 1 or 2 times last night. Woke 9-11 times. A little more than normal. Started coming down with a cold last night after visiting sick friends over the weekend. In other words it wasn't a typical night, but not far from ordinary. Will keep track of awakenings for a week or two in order to get a good picture of what's happening.

Here's some recent data so you all can see what the pressure changes have done.

Click thumbnails to enlarge. When the link opens where my image is stored, click the image to zoom in.

Statistics
Image

Overview
Image

February 10
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February 11
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February 12
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February 13
Image

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software

Rob K
 
Posts: 142
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Gender: Male

Re: New to the forum. Looking for answers.

Postby Rob K on Fri Feb 24, 2017 10:19 pm

Here's my last three years worth of medical info that may provide some insight as to what's going on. I didn't post previously because it was so extensive. I wouldn't read too much into it right now since the pressure changes that you all have helped me with seem to be slowly making everything better. First thing is to get the cpap therapy figured out. I'm still waking a lot, but have been feeling better and more alert during the day. Starting to have more energy. I'll post some current cpap data soon.





44 year old male. Still searching for answers. Over the last three years, many doctors, many tests, many diagnoses, many treatments and virtually no results until this last few weeks.


Symptoms:
I found trying to explain all this to a doctor makes their eyes glaze over. They have a hard time figuring out where to start and what to do. I'm sure it will do
the same for all of you.

-Occasional light headiness, dizziness, racing heart upon standing, start to black out. I suspect this is a blood pressure problem.

-Limbs are always going numb. Sometimes during the day, but especially when I sleep. Often wake up with both arms dead asleep, even the one I'm not laying
on. Sometimes it's one whole side of my body. It is much worse when the limb is elevated above the heart.

-Sweating, hot flashes, racing heart. Mostly at night, but occasionally during the day.

-Waking up many times through the night. Like every hour. Sometimes more or less.

-Insomnia. A lot of this was due to work stress. Sleep deprivation seemed to make it worse also.

-Takes a very long time to get going in the morning. "Feeling like I have been run over by a truck". Here that one often on this forum.

-Frequent morning headaches.

-Forgetfulness, reduced cognitive ability/slow thought process from what was normal.

-Most days angry, frustrated, impatient, irritable about very insignificant things. Everything is a burden.

-Always very tired throughout the day. Adrenalin seems to kick in during the evening from being overtired and can't get to sleep.

-Muscle weakness, tingling, throbbing, twitching, shooting pains in any muscle at any time. Seems to move around a lot.

-Muscles and joints ache bad. Entire body aches severely right down to the bones. Even skin hurts at times.

-All muscles in body feel tense 24/7, sometimes to the point of cramping and very rarely ever feel relaxed enough to get into a deep sleep.

-All aches and pains are temporally relieved buy moving the body. I never take a break throughout the day, because my body starts to ache bad. Being
stationary for 20-30 minutes is torture. Driving for 1/2 hour hurts real bad. Also get real tired and yawn continually with a short break, body starts to shut
down.

-Entire spine hurts extremely bad for a little while after chiropractic adjustment. Chiropractor has seen this only a couple times in his career and seems to
think this a nervous system problem.

-Vision is blurred sometimes. Seems to change daily. This could be related to my age. Eye doctor says early 40's is a bad time.

-Shake a lot when trying to use fine motor skills.





Had many tests that I won't go into at this point. Maybe will list them when I get time. It's extensive. I had an electromyography to test my nerves. I don't recommend that test to anyone. It was horrible.





Diagnosed with:
-Sleep apnea twice - both places seemed to have gotten the pressure setting wrong which you all have helped me to understand.

-Fibromyalgia twice - I believe this is a misdiagnoses both times. I had all the symptoms, but they seem to all be going away with better sleep.

-Post lyme disease - recently tested negative both times, but they still diagnosed be with it since I definitely had a circular tick rash along with the flu as a
teenager. This was long before we new anything about lymes. We still don't know much.

-Restless legs syndrome - diagnosed with this in response to my complaint about my entire body feeling restless. Sleep study tests confirmed I don't have
this. Actually one out of three studies said I had minor limb movements, the other two recorded nothing.

-Depression - Who wouldn't be having been very sleep deprived for 4 years and having their entire life go to heck. Not depressed at all when I sleep well,
quite the opposite.

-Anxiety - Definitely had this from being sleep deprived. Seems to be mostly gone now with better sleep.

-Insomnia - Had this real bad a couple years ago. Main causes were work stress and anxiety from sleep deprivation.

-Low on B12 - Still take supplements occasionally. Need to have this checked again.

-Vitamin D deficient - Feel much better taking supplements. Still do this daily. Doc says everyone in the north should probably be taking supplements.





Doctors know for sure I have mild to moderate sleep apnea. They seem focused on a nervous system problem since my entire body is being affected.





Treatments:
-They put me on a whole bunch of drugs for all sorts of things. The antidepressants and nerve pain medications for fibromyalgia made me very ill. Mostly bed
ridden and not able to function. A lot of sleeping pills, which seem to make my apnea worse.

-Had two sleep studies done by two different doctors and labs and both places seem to have gotten the pressure setting wrong on my cpap. I talked to them
many times about how very tired I felt and how many times I woke up and they were not able to help. They mainly told me each time that my cpap was
working right since AHI was under 5 and couldn't do any more for me. One of these doctors diagnosed me with anxiety.

-Had classes on pain management and insomnia at Mayo Clinic. I had an enlightening experience. They basically said each time I was there that
prescription drugs are way out of hand in the USA. They have cured many people by providing informative classes and improved quality of life by weaning
people off all the drugs the doctors are pushing. They stressed using drugs as the last option. Apparently we have a prescription drug problem in the USA
with the companies and doctors being the pushers. They said it will likely take decades to change this way of thinking; drugs being the first step in
treatment; but on the bright side a lot of places are moving in the right direction.





What has worked so far:
-Taking Vitamin D supplements reduced the pain considerably. Noticed a big difference within a few days.

-Found cutting work back to part time and getting as much rest as possible has improved things. Can't continue to work part time forever though.

-Getting a lot of sleep helps with everything. All my symptoms seem to be proportional to the amount of rest and sleep I get. 4-6 hours and I feel horrible. 7-8
hours and I feel bad. 9-10 hours I feel decent. 11-12 hours I feel great and ready to take on the world, almost all symptoms are gone. This tells me that likely
most of my problems are related to sleep deprivation.





I eventually gave up on the doctors and took matters into my hands. Knowing that most everything seems to be sleep related, I looked further into my cpap therapy. Found that I can adjust the pressure on my machine, found free Sleepyhead software to look at my cpap data. A few weeks ago I found this forum and you all are helping me to get my cpap therapy right. So far everything seems to be improving with the proper pressure settings. AHI is below 2 now most nights. I'm starting to feel more alert, my body is aching less, my muscles are starting to relax. My anxiety and depression are mostly gone. Sleep is getting deeper. All symptoms seem to be subsiding. I feel like I'm on the road to recovery. Being more rested I'm able to do more and hope to soon start and exercise program which should help with my blood pressure problems. The doctors are probably right in saying it is a nervous system problem; being that it runs our entire body it makes sense that everything would be out of wack and malfunctioning. Probably all brought on by sleep deprivation from untreated apnea.

Being sleep deprived on a daily basis, my body has not had the time to repair itself for something like four years now. That would likely cause all sorts of problems. I'm still not back to normal, probably because I have not completely resolved my sleep issues. I feel like it is sleep deprivation that is causing most of my problems and it makes sense that it would.

Sorry that was so long winded, but I've been through a lot in three years. Didn't even mention all the tests I had.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software
Last edited by Rob K on Tue Mar 07, 2017 7:22 pm, edited 21 times in total.

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palerider
 
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Re: New to the forum. Looking for answers.

Postby palerider on Fri Feb 24, 2017 10:51 pm

Rob K wrote:-Occasional light headiness, dizziness, racing heart upon standing. I suspect this is a blood pressure problem.

buy a wrist bp monitor, they're not expensive. test when you're dizzy, don't forget to hold the device at heart level, don't guess.

Rob K wrote: -Sweating, hot flashes, racing heart. Mostly at night, but occasionally during the day.

-Waking up many times through the night. Like every hour. Sometimes more or less.

-Insomnia. A lot of this was due to work stress. Sleep deprivation seemed to make it worse also.

-Takes a very long time to get going in the morning. "Feeling like I have been run over by a truck". Here that one often on this forum.

-Frequent morning headaches.

untreated apnea symptoms.

Rob K wrote: -Shake a lot when trying to use fine motor skills.

a magnesium supplement might help. many people are deficient in magnesium.
Rob K wrote: -Low on B12 - Still take supplements occasionally. Need to have this checked again.

a b-complex pill a day won't hurt you, and may help.

Rob K wrote: - -Vitamin D deficient - Feel much better taking supplements. Still do this daily. Doc says everyone in the north should probably be taking supplements.

how much? https://www.vitamindcouncil.org/why-doe ... 000-iuday/

_________________
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Additional Comments: S9 Vpap Auto
come hang out on IRC and chat: irc.freenode.net, ##cpaptalk
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Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Fri Feb 24, 2017 11:12 pm

Thanks for taking the time to read all that and respond. You must be retired.

I just recently got a wireless blood pressure monitor. Most days blood pressure is around 120/80 give or take. Occasionally it is higher even up to around 140/90. I have not had those very scary episodes upon standing for the last month or so. Seems to correlate to the period when I started increasing my cpap pressure. I feel like the blood pressure problems were somehow related to my untreated apnea. Will definitely keep the blood pressure monitored since it could be better. Looking forward to start exercising again with regularity and improve things.

I realize now that a lot of my symptoms are/were probably from untreated apnea.

Will look into magnesium.

I go round and round with the amount of D vitamin I take. Whatever is on sale at the time. Right now I'm taking 2000iu per day. Doctors seem to vary on their suggested amounts anyway. Any amount seems to do the job. I've been on it for probably a year or more and have not stopped taking it. Maybe I don't need it anymore. I do not take anything for just the heck of it, just because it might help.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software
Last edited by Rob K on Sun Feb 26, 2017 9:52 am, edited 3 times in total.

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palerider
 
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Re: New to the forum. Looking for answers.

Postby palerider on Fri Feb 24, 2017 11:46 pm

Rob K wrote: Right now I'm taking 2000iu per day. Doctors seem to vary on their suggested amounts anyway. Any amount seems to do the job. I've been on it for probably a year or more and have not stopped taking it. Maybe I don't need it anymore. I do not take anything for just the heck of it, because it might help.

read the article, and take more.

the old advice on how much to take was enough to keep from getting rickets. just like the advice on vitamin c... just enough to avoid scurvy.

however more and more research is coming in that many things respond well to vitamin d, and most people are deficient, even people in the south, because they aren't out in the sun, or if they are, they're covered up or wearing sun block, so their skin can't make the vitamin d they need.

5k a day won't hurt you, and it might very well help more.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: S9 Vpap Auto
come hang out on IRC and chat: irc.freenode.net, ##cpaptalk
https://sleep.tnet.com/resources/sleepyhead
Don't confuse my personality with my attitude. My personality is who I am. My attitude depends on who YOU are.

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Sun Feb 26, 2017 7:34 am

Interesting read about vitamin D. Thanks for that. I spend a fair amount of time outdoors with my maintenance job. Plus my hobby's use to have me outdoors all the time and getting a lot of sun. Not so much anymore with untreated apnea'; my hobby is figuring out how to get better.lol Being able to get my treatment resolved will hopefully get me back into my normal routine and I can eventually cut back on the vitamin D. Sounds like it might be good to increase it for the short term.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Sun Feb 26, 2017 9:35 am

Here's some recent data. Still wake a lot throughout the night for no apparent reason. I've been trying figure it out for years with no luck. Have been feeling a little better with the new pressure settings. I've been turning the machine off/on to record how many times I wake. I forget to do it sometimes just about every night so not all are being shown on the graphs. Most nights I'm still waking 6-8 times throughout the night, sometimes more or less. What do you all think of my pressure settings? AHI is better than it has ever been.

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Re: New to the forum. Looking for answers.

Postby OkyDoky on Sun Feb 26, 2017 9:44 am

I would increase the minimum to 9 cm and see if that helps clear up some of the events. The AHI is not bad but a little more minimum may help. The maximum looks like it is doing the job at 12 and you don't have a lot of pressure increases, so I would leave it there.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Sun Feb 26, 2017 10:01 am

I was wondering if a lot of those events are due to the fact that I wake up so many times. Or maybe I wake up because of the events that I'm having. Which comes first? Wish I knew. Won't hurt to try 9cm so I'll do that tonight.

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Re: New to the forum. Looking for answers.

Postby Pugsy on Sun Feb 26, 2017 10:09 am

I think like OkyDky...try to clean up the reports a little more with another increase in that minimum.
While I doubt those few events are the cause of your wake ups...sure doesn't hurt to try to reduce them in an effort to see if it helps or not.

At some point you might want to consider fixed pressure...remove the auto adjusting part of things just in case you happen to be one of those people who are super sensitive to any little pressure change. At this point the bulk of the pressure changes are those spikey test pressure probes. While small..maybe they are disturbing your sleep.
It's a big maybe...but worth trying to see if it helps...and won't hurt to try it.
If you decide to try fixed pressure...just keep it in auto mode and set your minimum to equal your maximum and that way the flow limitation flagging will still be turned on. If you go over to cpap mode the FL flagging is turned off.

Sleep maintenance insomnia is a tough one because there are so many potential culprits and not all are related to sleep apnea.
CPAP can't fix bad sleep if the reason for the bad sleep isn't related to sleep apnea.

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Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Sun Feb 26, 2017 10:27 am

Optimize the apnea treatment first, then figure out sleep maintenance. Sounds like a plan.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Mon Feb 27, 2017 8:24 pm

One thing I noticed is that my throat and lungs hurt for a week or more with each bump in pressure.

Even though I've been on cpap for nearly 3 years I still find the mask quite annoying at times. I'm not of fan of these higher pressure settings, but seem to slowly be getting used to them. Also my Airfit N10 is annoyingly loud with the high pressures. I know we haven't been increasing the pressure a lot, but the noise level seems pretty extreme. At the least very annoying. I was extremely tired last night, but couldn't get to sleep do to the extra pressure and noise. Finally gave up and watched a movie before I finally passed out. Hopefully I can adjust.

Hopefully I can get this therapy optimized and feeling better. Then I'm going to figure why I have apnea, try to do something about it and get off this torture device. I didn't have apnea 5 or more years ago. I was extremely healthy at that time. I'm thinking I should see an ENT and take a look at whats going on in there. I'm not overweight, 5'11" 170lbs, but I have lost muscle. I don't have six pack abs like I had before apnea. I might have to be muscular in order to rid myself of this problem. Not a bad problem to have I guess.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software
Last edited by Rob K on Wed Mar 01, 2017 7:05 pm, edited 2 times in total.

Rob K
 
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Re: New to the forum. Looking for answers.

Postby Rob K on Mon Feb 27, 2017 8:27 pm

I just read my last post. :roll: Obviously I'm feeling a little anxious and lost my patience after a crappy night of sleep.lol

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 60 Series Heated Tube Humidifier with Heated Tube
Additional Comments: Sleepyhead software
Last edited by Rob K on Tue Feb 28, 2017 1:41 am, edited 1 time in total.

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palerider
 
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Re: New to the forum. Looking for answers.

Postby palerider on Mon Feb 27, 2017 10:08 pm

Rob K wrote:and get off this torture device.

a bad attitude about the whole process just makes it worse, and makes success that much harder to achieve.

I've been doing cpap for over 7 years, and it's not an issue, it's not a problem, it's not torture. find a different mask if you don't like that one...

I got along well with my FFM for years, but the P10 is, I have to admit, nicer. and even though my pressures hit upwards of 22cm at times, it's not an issue.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: S9 Vpap Auto
come hang out on IRC and chat: irc.freenode.net, ##cpaptalk
https://sleep.tnet.com/resources/sleepyhead
Don't confuse my personality with my attitude. My personality is who I am. My attitude depends on who YOU are.

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