Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

Looking for some help - almost 5 years and not feeling a lot better
RE: Looking for some help - almost 5 years and not feeling a lot better
I'd give the experiment of trigger very high a go. Worst is you try and don't like for whatever reason and switch it down to high.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply






Donate to Apnea Board  
RE: Looking for some help - almost 5 years and not feeling a lot better
Yes, it's a low risk change.  Thought it made sense to try.

Wish the old bod would hurry up and acclimate!  Really dragging this afternoon.
Post Reply Post Reply
RE: Looking for some help - almost 5 years and not feeling a lot better
small 52 oz coffee probably sounds good now
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
RE: Looking for some help - almost 5 years and not feeling a lot better
Awful, restless night.  Far worse that the numbers would indicate. Sad  Really feel unrested, unrefreshed, and dragging.  Mentally foggy too.  Only change I made was Trig=Very High.  Some time in the night, I got up feeling quite uncomfortable and changed it to high.  I wish I knew when, as I'd really like to know.  Absolutely have no recollection of the time and can't find a video capture of this event so have no idea when it happened.  If it was 4:15am, I'd conclude that Trig=Very High was good, as the number of events was low prior to that point.  But if it was at 11pm, then the conclusion is a lot different.  It's a pity that OSCAR doesn't reveal information about machine settings, and the time of the change.  Don't even know if my machine even logs that.  

Both OSCAR and my video app handle the end of daylight savings time differently which makes things a lot more confusing to resynchronize.  A day ago everything lined up pretty well.  Not saying OSCAR is wrong, just saying the two piece of SW are doing it different.  Confuses my brain.  Hopefully tomorrow it will make more sense, as the time stuff will become static again.

Actually OSCAR and the machine are playing with time a bit.  Perhaps a design choice, but confusing for a sleep deprived analyst like me!  In my UF #2 event list I have:  #01 23:49:42 (19).  If I highlight this, it shows up on the flow rate graph occuring at 22:49:42.  If I put the cursor on the start time the cursor reads 23:41:21, but the graph markings are 22:41:21, an hour offset.  To make it more confusing my clock read bedtime as 10:41PM EDT, which is 9:41PM EST, (because DST is defined as +1 hour advanced from ST) and I woke up at 6:30AM EST.  So the span of time is thankfully correct, which is good.  My head hurts just thinking about stuff like this!

I do know that I felt like I was aroused quite a bit.  I recall the sensation of mask flapping or farting when my head was at different positions.  
Speaking of air, I'm noticing an increase propensity towards gas.  (Last couple of days.) Not sure if it is due to increased pressure.  Stomach does not seem bloated.  Might only be coincidental.

Something that was different last night.  Had ice cream for dessert.  Dinner was an hour later than usual.  After the meal, I was hungry for some reason and had some cheese and crackers.  Both high dairy fat items.  Is that relevant?  I don't know.  Other than what I noted, no changes in sleep hygiene.

Seriously, this was a bad night.  Feeling like a zombie.  Perhaps just another speed bump in the journey, but unwelcome. I'm sorely tempted to do some random thing to make it better, but know it's not the right thing to do.  Just checked the machine to confirm, the machine was changed to TRIG=HIGH again. 

So what's recommended?  Trig=Very High again and hope for the best?  Or?  
(On my part I will have neither ice cream nor cheese in the evening.  Oh the sacrifices we make in the search for sleep!  Rolleyes )

   
Post Reply Post Reply






Donate to Apnea Board  
RE: Looking for some help - almost 5 years and not feeling a lot better
You happened to mention in passing that you have COPD.  What medications are you taking?  You brought up having ice cream last night, are you possibly diabetic?  All these can effect why you're having problems with your therapy.
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Beginner's Guide to Sleepyhead and OSCAR
Apnea Helpful Tips

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
RE: Looking for some help - almost 5 years and not feeling a lot better
For COPD, I take Pulmicort for long term relief.  Pulmicort is a powdered corticosteroidal inhaler.  For any short term asthma like symptoms, I use an albuterol inhaler.  Haven't had to use the albuterol inhaler in quite a while (many months).  If I don't use Pulmicort, in two days there is an audible wheezing in my lungs.  But I do use it - every day, and there's no wheezing whatsoever.  As you have observed, my tidal volume is lower.  If I use a spirometer, I am on the low side.  Honestly don't remember my spirometer results, nor even where mine is.  I've not noted any decline, however.  According to my old Respironics my TV has not declined in the 5 years of use.

Not diabetic.  Paternal grandmother was, but not me, nor my parents.  All blood tests (just recently, as a matter of fact) are normal.  Sister is lactose intolerant, but not me.  But if I do have a lot of dairy fat (equivalent to 2 scoops) then I get a sort of feeling of a heaviness in my stomach.  Not saying dairy fat is a cause of anything, but if I don't mention it, how would anyone comment?  I'm up for any and all suggestions.  Since I am not a heavy eater of either ice cream or cheese, it's easy enough for me to avoid for a while.  Let's remove a variable.

Hope that answers your questions.  If not, ask away!
Post Reply Post Reply
RE: Looking for some help - almost 5 years and not feeling a lot better
Your CA's didn't seem to pop up until around 4:15. Any speculation other than positional? I would up the pressure to 11 EPAP 15.6 IPAP and PS 4.6. I am hoping at some point we might see a further reduction in flow limitations and an increase in tidal volume. If your CA's persist, set the Trigger to Very High.

As always, your thoughts or anyone else wishing to help.
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Beginner's Guide to Sleepyhead and OSCAR
Apnea Helpful Tips

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply






Donate to Apnea Board  
RE: Looking for some help - almost 5 years and not feeling a lot better
Willing to try. Also willing to listen to any other advice.

If I'm interpreting this correctly, there's both PEEP translation and PS increase. Based on previous changes and results, should I assume there will be transition period? Just trying to gauge my expectations. Don't want to cry uncle too soon, but want to know enough to say that with some confidence that its good or bad. Bad isn't always obvious - due to acclimating.

To reiterate, in case it wasn't clear - feeling rather bad today. Why? Likely sleep. (Haven't got a better guess.) Drowsy, foggy, tired, unrested and unrefreshed. Feel like it's the end of the day already! Not looking forward to more days like this. Hoping to make some progress on dialing in a effective therapy. I'll keep plugging, but it's not easy today!
Post Reply Post Reply
RE: Looking for some help - almost 5 years and not feeling a lot better
I have COPD as well, and fluctuates around GOLD 1,2, as in a mixture of some level 1 and some level 2 symptoms at times. I find for myself, 2 big aspects can hinder or help therapy. Your PAP must have timing controls and it appears sleep stages cause disruptions to sleep and/or therapy. I am aware your PAP has some/maybe all of the available timing controls by the mention of the trigger setting.

I am setting aside for a moment my very complex status of COPD/Complex Apnea, but intentionally focusing on COPD. I have Ventolin as the rescue and Breo Ellipta and Spiriva Respimat as daily maintenance. All of which I mentioned before.

I only mention all the above to ask, is it possible that a different treatment machine should be seriously discussed and considered? As in a serious conversation with the doctor. I know where the new nurse that is more or less in charge of my pulmonary needs wants my sleep therapy to go. And she thought my COPD is enough an issue to immediately script a nebulizer to go with these other inhalers, which the former pulmonary doc didn't once consider. She wants to get me to a machine that has AVAPS mode. Do not mistake this as me prescribing this for you as well, but an opening of conversation only. COPD is to be factored in with apnea or the answer cannot be accurate or complete.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
RE: Looking for some help - almost 5 years and not feeling a lot better
Your CA's didn't seem to pop up until around 4:15. Any speculation other than positional?

Positional, I think.  There's video of some (legs, body, torso) movement, but nothing to support me changing TRIG.  Nothing was captured.  That CA sequence is roughly 20 minutes long.  According to OSCAR I had CA events during that time of 2 minutes 5 seconds, or 10% of the time.  I can't tell you how annoyed I am not to know the time when I changed the value for TRIG.  Makes this all a guessing game.  

I do know I was awake enough to move my head over the nightstand and mess around with knobs to change setting.  And at the time I was feeling somewhat distressed.  If I were to bet, it's probably around that time, but I have ZERO supporting evidence.
Post Reply Post Reply






Donate to Apnea Board  


Possibly Related Threads...
Thread Author Replies Views Last Post
  [UPDATE] Improvment thanks to you, but feeling "sleepy" rafaaa 1 113 11-17-2020, 02:58 PM
Last Post: deity999
  Feeling Bad Over Good Scores: Help Please TiredOne789 26 794 11-11-2020, 05:57 PM
Last Post: OpalRose
  [Symptoms] 1 year into therapy feeling tired again novanoe 2 136 11-09-2020, 02:17 PM
Last Post: staceyburke
  Raw, dry feeling in Nose and sinuses kshansen 4 171 10-29-2020, 10:40 AM
Last Post: happydreams
  Any thoughts on problem with gap between teeth since using CPAP for a few years? green wings 17 449 10-21-2020, 12:23 PM
Last Post: Hydrangea
  5 years on cpap, no improvement. getting desperate for some help. kc210 38 993 09-20-2020, 06:24 PM
Last Post: sheepless
  [Symptoms] New To Therapy Feeling Tiredness Returning dalkantrell 6 225 09-13-2020, 06:40 PM
Last Post: Dormeo


New Posts   Today's Posts






About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.