1.41 Wrote:I decided then and there I could and I would make it work, that I would have a positive attitude.
That right there is what's going to get you through all this.
Good post, 1.41
. (interesting username)
I think your post will encourage others also!
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My experience so far seems a bit different than most. First, I have never really felt tired or exhausted or sleepy during the day. I don't fall asleep driving or any other time other than if I lie down for a nap or maybe watching a ball game in a prone position. Otherwise, rarely sleep during the day. Sleep pattern was to go to bed, wake and go to bathroom after a couple of hours, wake again in a couple more hours, wake early in the morning then doze off and on until time to get up. Been going on for years - also big time snoring especially if extra tired.
However, my blood pressure is up some, sugar is borderline, HDL cholesterol is bit low, LDL bit high. So my doctor recommended a sleep study which I did a year ago. Study did not go that well - slept initially only 135 minutes with no N3 delta or REM sleep. Had 2 OA's and 50 hypopneas for an AHI of 23 per hour. Lowest oxygen sat was 90%. They put me in a mask at 6 cm and I slept only 22 minutes with AHI of less than 3. I had claustrophobia and could not tolerate the mask. So then I saw a sleep specialist who had me try the ProVent thing you use on your nose. I determined that I was breathing through my mouth while sleeping thereby defeating the device so I gave up on that and did nothing for some months. Saw my regular doctor again in December and agreed to see the sleep specialist again which was scheduled for Feb. In the meantime, I did some serious research on this board and elsewhere.
I determined that I wanted a RedMed S9 autoset, H5i humidifier, climate control tubing etc. I also determined that I did not want to do a titration study which, as far as I could determine, made no sense if I was going on an auto CPAP machine. So, at my sleep specialist appointment, I told him that I wanted the S9, wanted to just set it up on a range of pressures based on the prior study and then give him the results so he could adjust the settings. He was reluctant to do it that way but finally agreed to write the prescription (I supplied the equipment specs) and see me after 90 days. I got the equipment on Feb 29 and have had three nights so far. I am using the ResMed Swift FX nasal pillows mask and a chinstrap (I have allergies so I have to use saline nasal spray, allergy pills and an allergy nasal spray to clear nasal passages before sleep and the chinstrap to prevent mouth breathing).
So far I have done well with compliance getting an average of 7 hours use, 6.5 median (I haven't actually slept that well as it takes a bit to get used to this but I have been able to tolerate the mask etc. without claustrophobia). I don't fully understand the "leak" thing yet but mine reads Median = 0; 95th percentile = 6.0 and max = 163.2 (I assume that is when I removed the mask and let it go to auto-off). AHI works out to 1.6 with apnea at 1.4, OA is .4; Central Apnea is .5 and Hypopnea is .2. Still have to learn what all this means but I think this is pretty good for first 3 nights.
The S9 is quiet and with the climate control tubing and H5i (set at 80 degrees), it has kept my nasal passages open most of the time so I am not using my mouth to breath (chinstrap) and am not waking up out of breath.
So far so good - just hope to be able to gradually go to sleep a bit faster with the mask etc. and stay asleep all night. I appreciate all the info I have been able to get from this board and other sources. There is one website that has a bunch of video demos of machines and masks that is quite good. Also, I have downloaded both software packages and am learning to use them after some initial problems with the installation of the ResMed software due to a conflict with my NVidia display software.
Thanks, sorry to be so wordy
(02-28-2012, 06:48 PM)1.41 Wrote: I now sleep, I dream, I wake up alert and refreshed. I can't believe how easy CPAP therapy is. I believe that CPAP saved my life. It certainly gave me a life I didn't think I would ever have. Or maybe ever have again. Good sleep with dreams are things I didn't know anything about.
Hi 1.41 and
I'm not as far along in my cpap therapy as you are but I have discovered the joys of a good night's sleep and dreams. I used to have dreams but they were very fragmented and odd. Now I have normal dreams and I wake up rested on most days. What a difference.
I'm happy for you that you found a make and machine that doesn't sound like a jet bomber buzzing in you ear.
You are so right that a positive attitude makes a world of difference.
(02-20-2012, 11:24 PM)SuperSleeper Wrote:
jeffy1958 Wrote:I'm on cloud nine. Go ahead- I dare you to ask me why?
Oh what the heck I just came from my Dr's office - the E.N.T. (ear, nose, throat). I have got this machine under my full and complete control along with what I'm suppose to be doing!!!! The big thing is my AHI. Are you ready for this - 0.6!!! Yes that right 0.6!!! No the decimal point is not in the wrong place, it's suppose to be in front of the 6!!! My leak rate is a - drum roll please - 7.2 median, 95th%: 13.4 and the max was 23.4!!! And that may be due to the itching problems I get once in a while and the fact I may be opening my big mouth a time or two. To go along with that o.6 how about this: Apnea index - 0.5 Obstructive: 0.3. I'm so below mild I scare myself.
I am proof that anyone can do this with the positive outlook I have. I can relate to: Frustrating - Aggravating - Irritating and any other ing you can thinkl of. It always wasn't the "bed of roses" it is now - trust me!!! I too do not wake up with the headaches. I have more energy to get throgh the day. I actually look forward to going to bed and hooking up!!! How can anyone NOT sleep with a big chunk of plastic and a 6 foot hose - they must be crazy - they are the abnormal people of the world - we are the normal ones!!!
Did I tell you my AHI was 0.6???
I am floating on cloud nine - the sun has been shinning all day - the temp hit 47 today - what could possibly... Oh crap we loose an hour of sleep this weekend. Oh well - can't have it all perfect can we!!!
Ummm... Spring forward is March 11, methinks
Hi DenD746 and
(03-03-2012, 03:54 PM)DenD746 Wrote: So far so good - just hope to be able to gradually go to sleep a bit faster with the mask etc. and stay asleep all night.
You will get used to the mask and will notice that you are sleeping longer and longer. Not everyone sleeps through the entire night but once people are used to their cpap therapy, they tend to get a decent night's sleep.
Quote:Thanks, sorry to be so wordy
No problem. I didn't think it was wordy. I thought it was a good explanation. I like that you knew what machine you wanted when you saw your sleep specialist again and that you were persistent enough so that he gave you the prescription. Please let us know what happens after you see him again in 90 days. I think your doc will be please with your progress.
(03-03-2012, 03:54 PM)DenD746 Wrote: I determined that I wanted a RedMed S9 autoset, H5i humidifier, climate control tubing etc. I also determined that I did not want to do a titration study which, as far as I could determine, made no sense if I was going on an auto CPAP machine. So, at my sleep specialist appointment, I told him that I wanted the S9, wanted to just set it up on a range of pressures based on the prior study and then give him the results so he could adjust the settings. He was reluctant to do it that way but finally agreed to write the prescription (I supplied the equipment specs) and see me after 90 days.
God, I wish I had your sleep lab. :-)
I hate doctors. A lot of people say that... what they mean when they say it comes no where near the truth of how I feel about them. And hospitals - doctor corrals - are even worse. I am seriously phobic about hospitals, more then a half hour in one and my teeth start to itch. My jaw hurts from the effort of not shouting at people. Etc.
Did I mention I loathe hospitals?
So, I tend to not go to them. And I'm very good at self diagnosis. I've known for years that I probably have sleep apnea. I've been a snorer for as long as I can remember, been married 25 years... and in the last6 or 7 years the wife has mentioned several times that I kick or jerk in my sleep, that I stop breathing, that she often nudges me or whatever, until I start again. Etc. About 4 years ago, I started to notice that I was having problems concentrating... that progressed to micro-naps, poorer then normal memory, etc. It got to the point that if I wasn't actively concentrating, I'd start to nod off. Then it started happening during conversations that were less then stimulating...just a flick of the eyes, a long blink... and startle awake. Never happened when I was driving, fortunately - that was a high enough level of concentration.
In March of 2010, my stepfather mentioned to me that he was going in for a sleep study. I should mention that we're in Ontario, Canada. Our healthcare covers CPAP machines (or APAP under some conditions) at 75% of the cost. Interestingly, they only allow 2 sleep studies every 2 years - 1 diagnostic, and 1 titration. Anyhow...he mentioned it to me, and I kept up to date on his progress. His doctor sent him to a private sleep lab, he went in about a week later, the technician woke him up half way through the night, put him on CPAP, did the titration right then and there. He went 2 days later to get a machine (IIRC the ResMed S8, set to 14 cm). Totally hated it, tried it for a couple nights, the pressure really bothered him. Called his therapist, went in to see him that day, and the suggestion was made to put him on an Autoset at 8-16. He still found it unsettling, but better, and he's eventually gotten used to it. As to coverage on healthcare: "No problem, we'll just get your doctor to sign off on it." Total elapsed time, about 2 weeks.
So... I finally decided that I had to do something about it. I'd done my research, and was pretty sure I could see and raise his 14 cm. So, I went to see my GP - gotta have a referral. He was surprised to see me - last time I was in to see him about *me* was 1989. He asked what I needed, I told him I have sleep apnea. He does, too, so he knows about it from personal experience. So, he told me about the assorted sleep specialists in town, I said "My stepfather went here, things seem to have gone well... they have their own lab, I think I'd be okay trying to sleep there as opposed to the hospital's lab..." and stressed that I didn't think I'd be able to sleep in the hospital's lab (Even though it's a separate building.) This was in April. Next day he called me with an appointment... in August. With the head of respiratory medicine. At the hospital. /facepalm.
Stupidly, I went along with it. Went to the appt. in Aug. They told me to bring the wife, so she can tell them how i sleep. "What can I help you with?" "I have sleep apnea." "Well, we'll check you out and see if you're right...why do you think you have sleep apnea?" Actually...I didn't think it, I knew it. :-)
So, he books me in for a sleep study.
*But* we can put you on a waiting list, might get it sooner... And I did, I was there a couple weeks later. Barely slept, tossed, turned, etc. By about 5 am, the tech woke me to tell me to go home, yes, I have SA, in fact, she's going to fax my info the next day, expect to hear from my Dr. and she's recommending they get me a loaner machine in days...well before they can get me in for titration...so, an APAP machine. I got that 2 or 3 days later, with a mirage nasal mask...and set at 8-18. I'm a scuba diver - I really have *no* problem functioning with stuff on my face, and breathing pressurized air through some clumsy device, so, first night I managed a mere 9 hours. Woke up the next morning and felt... absolutely amazing. Awake. Fresh. Alert. Like it was the first time I'd slept in years. I haven't nodded off once since Aug 2010. I've started seeing the end of movies... and remembering them for more then a few days later.
They had me use the APAP for about 1 week, to gather data, then brought me in to check the 95th percentile it had established - 18 cm. "So, we should get you on CPAP at 18 cm." I asked how he arrived at that number... "if you had it set to top out at 18...and it spent 95% of the time at 18... how do you rule out it needing to be 19?" Oh. Right. Okay... lets set it to 10 to 20 for a week or two. Guess what? The number in 2 weeks was 19. Now, they set it to CPAP mode, at 19, I take it home...and it blows the mask off my face the moment the 5 minute ramp up ends. I wake up in the night feeling inflated. I *totally* hate it, but decide to try a second night. No way. by 5 am I take it off in total frustration. See... they "can't justify an APAP machine without a titration study that shows a variation of more then 5 cm..." Oh - didn't mention - now I'm having to wait to Nov for titration, I have a loaner machine until then. So...fixed cpap at 19 cm is *NOT* going to work. I complain, they set me up with a ResMed S8 at 16 because "it's an easier breathing machine, and 16 should do fine..." Nope. Had to use it that way until the titration...and hated it more every night. I felt better, but no where near as good as I did the first few weeks. And it irritated me like crazy. I actually turned off the ramp up - the only purpose it served was to let me get to sleep before it blasted the mask off my face and woke me up.
During this time, I decided that I *would* have a ResMed S9 Autoset, from my research. I got the software, read the manuals, learned how to program it, how to read the advanced data, etc.
Got the titration results... after a night at the hospital lab where I slept all of about 2 hours. CPAP at 14cm. And that got me to an AHI of 6 which is "good enough."
Not for me.
Dr absolutely refused to consider an APAP. I don't need it. We can't justify it to the healthcare. "I don't care. Prescribe it, and I'll buy the damn thing myself." Oh.
So he did...and I did. I told my RT how I wanted it set up. I showed her that I both fully understood the settings, I could also program it myself, and read the data. For my followup visit a month later, I handed the Dr. 30 days of detailed data, printed out. Clearly showing an AHI of less then 1, average pressure of 16.8, high of 19.2, lows of 14...and certainly more then the required 5cm variation for him to have prescribed an APAP. Yes, I know it's not considered as accurate as a sleep lab titration, but in my mind 30 days of data trumps 2 hours worth. After a year, the numbers were about the same. In the last few month - and after losing nearly 30 pounds since starting with the machine, the numbers are going down, AHI is often 0 now, 95th percentile pressure around 14.5.
And I feel great. So really, that's all that matters. :-)
(03-03-2012, 09:32 PM)Kayro Wrote: Ummm... Spring forward is March 11, methinks
You are correct. For 2012 Daylight Savings Time begins in North America on Sunday, March 11th. Since we have members from across the pond and down under, Europeans change their clocks on Sunday, March 25th. In New Zealand and parts of Australia the change is on Sunday, April 1st.
I haven't seen your name on the boards before so welcome.
I found your story fascinating. Sorry to hear that you loathe hospitals but I'm glad for your health and life that you had the sleep study done.
(03-04-2012, 03:37 AM)CHanlon Wrote: About 4 years ago, I started to notice that I was having problems concentrating... that progressed to micro-naps, poorer then normal memory, etc. It got to the point that if I wasn't actively concentrating, I'd start to nod off. Then it started happening during conversations that were less then stimulating...just a flick of the eyes, a long blink... and startle awake.
I wasn't as quick as you were to notice these symptoms. I figured my lack of concentration and memory was due to age, extra weight and fatigue. From everything that I've read, the micro naps can be quite dangerous because you are not consciously aware that they are happening. (This wikidpedia article
explains micro sleep.)
I read about some research done on a college campus where they kept college students awake for 36 hours or so. Not unusual for some college students. During that time the students were in rooms with a huge light similar to the headlight on a train that blinked on at intermittent intervals. The students were supposed to hit a button every time the light came on. The more sleep deprived they got, the slower their reflexes were at hitting the button. It eventually got the point where they didn't hit the button every time. When asked why not, the students responded "I didn't see the light." How could they not see the equivalent of a train headlight? Their brain forced them into a micro nap because of the sleep deprivation.
(03-04-2012, 03:37 AM)CHanlon Wrote: Dr absolutely refused to consider an APAP. I don't need it. We can't justify it to the healthcare. "I don't care. Prescribe it, and I'll buy the damn thing myself." Oh.
This just goes to show that doctors don't always know what is best for their individual patients. Most doctors serve most of their patients well but there are always exceptions. I'm glad that you were persistent and ended up with the machine that will help you the best.
(03-04-2012, 03:37 AM)CHanlon Wrote: And I feel great. So really, that's all that matters. :-)
AMEN!!! This is truly all that matters. Thanks for sharing your story.
Finally went for my sleep study Sepetmber 2011. GREAT IDEA! I had been falling asleep in the afternoons, and I couldn't control it. Would feel sleepy and the next thing I knew, two hours had passed. Even would dose-off while driving, so much so that my wife wouldn't let me drive long distances. Sleep study results: SEVERE SLEEP APNEA. Assigned a pressure rating of 21/25, very high! Swear I could inflate my truck tires with that pressure!
After getting the ResMed S9, full mask and headgear, another problem arose. The mask kept "Farting" on my face. Not even the sleep study people could stop the air leaks. Just pulling back on the straps didn't help. Wasn't comforting being told one could over tighten the mask either. Nothing worked! Pressure was reduced to 16/20 which helped but didn't correct the problem. I was ready to give up on the whole affair! Proud that the mask only went flying thru the air and bounced off the wall one time before problem 1 was corrected.
After exhausting information from the "Experts", I took the matter into my own hands. When holding the mask to my face, while getting into the head gear, no air would escape. I went to Lowes Building Supply and purchased a packet of two velcro straps, one inch wide and eighteen inches long. Price around $5.00. After putting on the mask and head gear, I place one of the extra straps over my head and rest it on the masks air nozzle. The strap then continues under my ears. This doesn't restrict operation of the mask in any way. I seems to pull the mask straight back, much like holding the mask to ones face. The other strap is an extra in case you lose one! Problem 1 solved.
Problem 2: Hose kept getting wrapped up and in the way.
Solved: I purchased a "C" clamp type item at the flea market that may have had a light on it at one time. The 6 inch piece that rises from the clamp is high enough to keep the hose directed above my head while sleeping. The clamp is placed at the top of the headboard, allowing the hose to come down to the mask instead of being pulled to the side. I also purchased an 8 foot hose on eBay to allow me to turn on my side without restriction. There are stands that can be purchased to do the same thing, but the clamp was only 25 cents and isn't on the floor.
Glad to report my wife lets me drive again. Occasionally I still fall asleep while watching television, but not as bad as before. The first nights sleep without air leaks was GREAT! I got a wonderful, restful, refreshing nights sleep.
In closing, PLEASE DON"T GIVE UP ON USING YOUR CPAP/BIPAP MACHINE!!! These machines are life savers! Not only your life, but possibly your or someone elses family. You will feel great when everything finally starts working right.
Remember there is a reason doctors call their profession a practice. They don't know everything! If you can find a solution to make your machine work for you, thats great. Please let others on this site know how you corrected your problems!
(03-04-2012, 03:55 PM)sailor4you Wrote: Remember there is a reason doctors call their profession a practice.
Once an attorney friend of mine was my guest at a local Rotary Club meeting. Yeah, I know, with attorney friends, who needs enemies.
He was introducing himself & said he had been practicing law for 16 years. OK, those of you who know me are getting ahead of me right now.
I just couldn't help myself.
As soon as he said he had been practicing law for 16 years, I quickly replied: Any idea when you might get it right?
The other 3 attorneys & 2 judges in the room were the ones who laughed the most.
Using the ResMed Mirage SoftGel Nasal Mask with a chinstrap
I do not use either the Ramp nor the EPR Comfort features
Have been on CPAP since December 1998
This is my 3rd machine
I use the ResMed ResScan Software (Version 3.16)