Looking for Help

[Running on empty]

Brand new to the Forum.  Looking to get some advice on what is going on with me.  My story is one of over 6 years.  I started having symptoms of chronic fatigue, morning headaches, eyes burning, feet tingling, & heart palpitations (pvcs).  These all didn't happen at one time, but became more prevalent over a course of about 6 months.  I was 37 when this all started and was in good shape with no health concerns up to that point.  I worked with several doctors at the time and we ruled out all the bad stuff with no angle on what was causing my issues.  After about 3 months into our analysis I had a doctor that felt suspicious of sleep apnea since many of my symptoms lined up with that diagnoses and were the worst in the early morning.  I had a sleep study performed and the results came back that I did not have any significant apnea.  We moved on and somewhat forgot that as a consideration of a problem.  Fast forward 3 years later, I actually awoke several times in the course of a week with a sensation that I was choking.  I bought me a pulse oximeter that would track my saturations during the night to see in my O2 was desaturating in my sleep.  Sure enough, I identified that was happening.  My GP referred me to a sleep doctor and I share with him my findings.  He agreed that it looked like something was going on and he scheduled me for a new sleep study.  Well, the results of that study came back the same as the first.  Only mild apnea note, however he did reference my apnea index was significantly more prevalent during REM sleep.  He said the index was just under 5 and couldn't recommend treatment, but did what o do it again.  So, we did a third sleep study and an MLST study.  This time the apnea index was high enough to treat, but was still very mild, just over the 5 per hour mark.  The MLST for Narcolepsy was inconclusive and I had never had any of the symptoms that come along with that condition, so we ruled that out.  The doctor prescribed me a Resmed Curve 10 VAuto machine with a bilevel setting of 13 and 8 (no auto).  I began using this in Dec 2015.  I have remaining on this setting most of my therapy time, however I have never seen an significant improvement.  It does help and has improved my symptoms somewhat over not using it, but it has not eliminated many of my symptoms that still remain today.  Worst is chronic morning headaches and significant daily fatigue.  My sleep doctor pretty much had given up on any other means to improve my symptoms.  Essentially my apnea index is fairly low and controlled and he said he didn't know what else to do.  I have read a lot on the site regarding the significant additional analysis that may be needed to identify sleep related issues.  I have tried everything over the course of 6 years to identify what is going on.  Blood work comes back good and many other concerns have been eliminated.  I have had a ABG test that came back with some slight abnormalities, but it was disregarded.  Also, l've had a recent lung function test that also showed a couple of abnormalities, but nothing that the pulmonologist was ultra concerned about.  Whatever is going on, it has been chronic and consistent.  I feel awful when I wake up in the morning.  I feel like I sleep well but I wake up like I've not slept for days.  I feel like I am struggling with significant sleep deprivation.  I have had several normal days that I can count on my hands over the last 6 years, and everyone of those I knew immediately that I felt well when I woke up.  I feel the best during the day, right before I go to bed, and then wake up feeling like trash all over again.  I do not struggle going to sleep at time, in fact, I feel exhausted and fall to sleep quickly.  I do use Sleepy Head to review my Therapy, but I have not had any luck in identifying additions concerns or problems.  I am hoping someone out there may can offer some help or insight.  I can post sleepy head data if that helps and I appreciate anything suggestions anyone may have.  Thanks!

[sheepless]

you might have something other than apnea and cpap issues going on but there's no way to know if apnea and cpap are problematic for you without seeing some sleepyhead/oscar charts.

I sympathize with your waking up feeling like 'trash'. for years I have said with only a touch of irony that sleeping is exhausting.

while ahi 5 is a magic number for the sleep profession, it is only part of the picture. for example, ahi doesn't include flow limitations and RERA (respiratory effort related arousal). it doesn't address anxiety and sleep hygiene issues. to say nothing of other non apnea and cpap related issues like pain, medications and in my case, periodic limb movements. as you will often read here, how you feel is the bottom line. I can also tell you it's not unusual to feel poorly even with cpap treatment and while there are many possible causes, the most obvious is inadequate treatment. 1.5 years into apap, my long term ahi was between about 5 and 6. my doc thought this was great. never looked at anything other than a compliance summary and didn't seem to have anything to suggest when I said I continued to feel tired and sick ("stick with it", "try a different mask", "it's in your head", "it's conditioned", you'll adapt"). with help from forum members I picked up a more sophisticated machine which I probably would not have been prescribed through the 'system'. 10 months into that machine and my most recent 31 day ahi is 0.27 and my life is finally starting to improve. don't get me wrong, I still have other issues that impair my sleep but apnea is no longer one of them. I don't feel sick so much anymore and am much less tired.

post some sleepyhead/oscar charts to get some feedback to optimize your machine therapy or rule out apnea and cpap as the source of your fatigue.

[ajack]

Please put a chart up and I'd also use spo2 meter for tonight, to see how that is going, If it is one of the CMS, it can be uploaded in oscar. I would fix the sleep apnea as best I could, to rule it out. Then see if your sleep needs further investigations.

[Sleeprider]

I suspect the answer may lie in flow limitation, and the only way we can identify that is a look at your OSCAR or Sleepyhead charts. You are using an Aircurve 10 Vauto, and as long as central apnea is not an issue, that is perhaps the best possible machine on the market to solve this problem. Let's take a closer look and see if we can offer some insights the doctors missed.

[Running on empty]

I have uploaded a couple of screenshots from my data representing last Saturday.  I have been sick the past several days and wanted to give you a more representative illustration of a typical night.  Please let me know if you'd like to see any additional details.  Thanks so much!

[Sleeprider]

My only suggestion would be to change to Vauto mode, EPAP min 8.0, PS 5.0 IPAP max 16.0. This will start you out at your current pressure of 13/8.0 and allow the machine to automatically increase pressure up to 16/11 if and when needed. Your results are fine at current fixed pressure (VPAP S), but might be a bit better with auto mode. Again results look good.

[ajack]

I'd swap over to auto mode and keep the epap 8 PS 5. See what the machine thinks. The epap can move. The PS is still fixed. The ipap is raised to 20, to allow the epap to move.

Edit, it looks like we posted at the same time. The fixed 13/8 is PS 5 and a simple thing to mistake, normally they have 4.
The lab set it up for 5. Depending on your height, the tidal volume and minute vent may be right and you don't need any more.

[Running on empty]

Thanks for the suggestions.  I will try those settings tonight.  I have attached last nights data as well which I had a very low AHI (approximately .5).  Whatever is going on with me, I feel like it is happening within the last few hours I sleep.  I'm not sure if it has something to do with more prevalent REM sleep during that time and how my breathing is reacting to it.  I also included a screenshot of that timespan as well.  Again, thanks for the input!

[ajack]

Did you get the clinical manual from the top of the page?
Can you also check what are the rise time, Ti and cycle settings are? The vauto may not have rise time in auto and is only in S mode? The mask pressure generally look more block like in bilevel. I just wonder if they were changed or weren't set up mostly in default. If the lab wanted different than default, they would had added it to the script. It's just one more thing to cross off the list.

[Running on empty]

Got into the clinical settings.  The TImin was set at .3 and the TImax was set at 1.8
The trigger was very high and the cycle was high.

Trying settings on VAuto with ExpMin at 8 and InsMax at 20 with PS at 5.

Based on reading some of posts Iset the trigger and cycle to med, and the TImin to 1 and the TImax to 2.5.

I’ll see how tonight goes.  If anyone has any other thoughts, please share.  Thanks for everyone’s comments.