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SUCCESS from Scrapper

Posted: Thu Jan 14, 2010 8:27 am
by scrapper
Genetically, I'm a walking billboard for the classic OSA victim. Three of my three brothers have sleep apnea, heart and circulatory problems overwhelm the family genes in the elder generations, and I'm 50 & sturdy (that is the adjective I've chosen to describe myself of late......)

Prior to the realization that sleep apnea was a problem for me, I trained my body to sleep prone--on my stomach--completely with my face down--breathing in a little space created by the pillow. For the past couple years, I felt like I was choking.....but chalked it up to slightly increasing weight and age. Despite my sleep position--which in retrospect was an attempt to keep the airway open--I snored horribly. I come from a long line of robust snorers--like many of them, I had it perfected to an art form. I was attempting to sleep longer and longer periods of time without feeling good, and I planned my life around sleeping these longer intervals--giving up things I loved. And still I felt crappy......and lazy. I remained in denial and never considered sleep apnea as the culprit--thinking this was because of the schedule I kept for a couple years--going to grad school fulltime and working fulltime, requiring a hour commute each way, each day.

Fast forward....reality hit. I wasn't recovering after the hectic schedule of grad school and work, despite the fact that my teens were almost out of the house and the demands on me were decreasing. And yet, depression was increasing. Daytime sleepiness dogged me--and the yawning was uncontrollable and embarassing. Being of German descent, I've always accepted that "things are just the way they are--accept it and move on." So despite having three close brothers on cpap--it was just another thing that we didn't discuss--it was just the way it was.

I finally started reading about osa--and it described me to a "T". I couldn't wait for a sleep study. The wait FX nasal pillows. Every couple nights when I'm sick of one or the other, or one is giving me trouble for whatever reason, I switch to the other and go right to sleep.

It takes tenaciousness to jump through the hoops-------make one appt with the GP for a referral in three weeks; pay $110 for that appt, wait another 6 weeks to get into the sleep specialist; wait another month for a sleep study--which thankfully had a cancellation that allowed me to skip much of that wait, be billed for another $3000 for that.......wait two more weeks for results, and finally get a machine, but no follow up. "See you in 3 months to receive your lifetime prescription." I haven't even seen the rest of the bills yet. (Where else in life would we spend that kind of money, for that kind of service?)

THANK GOD FOR THE GOOD PEOPLE OF THIS BOARD.

Personally, some of the things that have contributed to my success BESIDES having the machine set correctly and responding appropriately to my sleep apnea (as evidenced by the ResScan software and reader ALONG WITH education from this board) are having two masks to switch between--I have both an Activa nasal mask and the Swift FX. I use the machine 7-9 hours every single night, and feel the change! The brain fog has lifted, and the energy has increased. I pop awake in 7-8 hours and am ready to go at life again.

In addition to feeling 1000% better, an antidepressant that joined my life 8+ years ago when my hubby died suddenly is weaned off and successfully gone (nevermind that the doc said it couldn't be done in MN in the winter)......and the weight that has crept on is my next victim to conquer------But one thing at a time.

Re: Newbie would like to hear success stories, please.

Posted: Sun Jan 17, 2010 4:15 pm
by AirBreather
I was diagnosed with moderate to severe obstructive sleep apnea in 1993. I have used CPAP (recently Auto CPAP) constantly since that time. It dramatically improved my life from the first night I used it. I slept so much better with CPAP from the very beginning that inconveniences related to its use seemed negligible in comparison.

Many first-time users have trouble finding a mask that fits and works properly for them. Some say masks make them feel claustrophobic. Some find it difficult to go to sleep with the extra air pressure. I didn't have any of those problems. I have tried many different masks over the years and definitely have liked some more than others, but I slept well with the first mask I tried and I have found others since that I like even better. Masks don't make me feel claustrophobic. I would prefer not to have to wear one, because masks and the hoses connected to them restrict sleeping positions to some extent, but I haven't found the need to wear a mask much of a problem. As to the air pressure issue, I am a little puzzled about why some people find it difficult to go to sleep with extra pressure. I actually like the pressure and except for a couple experiments have never used CPAP ramp or Auto CPAP settling-time modes.

Anyone who uses CPAP over a long period of time will have occasional irritations; such as a hose that breaks during the night or while traveling where it may be difficult to find a replacement; a mask that slips, starts leaking and wakes them up; a flexible plastic hose joint that squeaks when they turn in bed, etc. However, problems like that are nothing compared to not breathing many times per hour.

We are all different. We have different medical conditions. We tend to be annoyed to different degrees by various problems. We have other differences. However, because of the great success I and others have had with CPAP therapy, I would encourage anyone who has significant obstructive sleep apnea to try to solve whatever problems they may be having with it before giving up, because a good sleep each night is a terrific payoff against whatever trouble and expense may be involved in solving their problems.

Re: Newbie would like to hear success stories, please.

Posted: Sat Jan 23, 2010 1:19 pm
by shnoress
What is taping? What kind of tape? How? Where? How do you know if the pressure is right and how do you change it? I am only two weeks in, but the leaks are upsetting my husband and I'm not sleeping.

Re: Newbie would like to hear success stories, please.

Posted: Sat Jan 23, 2010 2:47 pm
by Nemleu
It’s been a long time since I visited this forum, but I just wanted to share my story….I’ll be brief. I was diagnosed with sleep apnea 19 months ago. I didn’t fit what they called the “profile”. I was only about 30lbs. Overweight. I took meds for high blood pressure, and high cholesterol. Today my weight is under control, and I’m off the meds. OH, I sleep well too.

The best advice I can give anyone is to learn how to read your equipment. Ask your clinician to show you how to retrieve your readings. Every morning I check, (and record) the readings on my ResMed. I check my Leaks, AHI, AP, and HI. You don’t have to wait for checkup to gain knowledge on how you are doing. If you have excessive leaks, above 0.4, adjust your headgear, or get a new mask. Typically if you can keep you leaks below L/s - 0.4, everything else should fall into place. AHI (Keep Number of cessations below 5) The entire process of writing down my readings takes about 20 seconds.

Re: Newbie would like to hear success stories, please.

Posted: Sat Jan 23, 2010 4:44 pm
by pmcall57
shnoress wrote:What is taping? What kind of tape? How? Where? How do you know if the pressure is right and how do you change it? I am only two weeks in, but the leaks are upsetting my husband and I'm not sleeping.
You're more likely to get responses to questions if you register on the forum and then start a new thread with a subject line that tells people what your question is. Be sure to say what kind of equipment you're using. This is best done by completing your user profile, or you can just write it in the post if you can't figure out how to do the profile. People will not be looking for questions to answer here. Just a tip you might find useful.

Getting there.....if this helps 1 person, it's worth it!

Posted: Wed Jan 27, 2010 9:07 am
by dcnuman
Here's my story- if it helps even 1 person struggling the way I have, it will be worth it!!

My CPAP story starts with 3 agonizing months of repeated dizzy spells (O2 deprivation??) after which finally going to my PCP he asked the RIGHT questions (after we ruled out diabetes, etc with blood tests)...."How do you sleep?" (I wake up a lot, go the bathroom several times a night and feel tired all day, which I attibuted to getting older and being overweight). He made a referral to the sleep apnea clinic and the rest is history. I got my CPAP only recently- new years eve 2009.

Prior to diagnosis I was going on for years with 'panic attack' awakenings in the night, which I first noticed on vacation in Mexico sleeping on a reallllly hard bed, feeling progressively more lethargic daily (falling asleep at the computer, reading a book, watching TV, at the movies, hitting a wall almost daily at about 10:30, noon, 2:00, 5:00....)

My AHI was 104, stopping breathing literally 2x per minute during "sleep", which was obviously doing nothing for resting my body, heart or brain which were all working overtime. The first night on CPAP was a fight but I was startled to find I had slept a whopping 4 hours straight at one point; the next night was awful, struggling with the mask, hose, noise, etc and finally taking it off for the remainder of the night. At this point I was already in tears and fearing to go to bed to wrestle with the horrible thing. Third night was MUCH better and I slept soundly almost all night waking up with more energy than I'd had in years.

This continued for a few weeks....until the dryness of my sinuses started to kick in (I didn't initially have a humidifier attachment) and I'd wake up at 2, 3, 4, 5 in the morning struggling to breathe despite being propped upon pillows and using a chin strap. Energy level dropped fast and yawning all day returned. Yesterday I had another really bad dizzy spell which was interpreted by me that it was time to get a humidifier and see how that works. Last night was better with the warm moist air but I still woke up a few times stuffed up a bit (cranked up the humidifier level from 2 to 3). We'll see how it goes....like others have said...."baby steps-baby steps..."

Re: Newbie would like to hear success stories, please.

Posted: Sat Jan 30, 2010 2:51 am
by robertjvan
My first mask was one of those ones that blow in your nose, well that went about a week and the nose got irritated. I up graded to a Nasal mask that fitted only over the nose and that's the same as I still use. My month quickly got trained to stay closed, and I seldom have trouble except when I have heavy congestion from a chest cold.
I started with just a CPAP and no humidifier, that lasted about two months. I got so dried out I was getting up 4-5 times a night to drink water. So the Dr got a humidifier first one was a passive one just a tray of water that the CPAP air blowed over that was great and that lasted for almost 9 years, I then got a heated humidifier that attached to the CPAP machine VIA a hose similar to the other one. In June 2008 I retired moved from Florida back to New York and Changed Health Ins. Then in January 2009 I got My present New CPAP and they had me do a sleep study at home with the New one (oxygen Monitor attached to me for the night, to make sure it was working).


I started Many Years ago remember the year 1997 seams about April but could have been sooner, started with the nasal pillows that didn't work to well, settled on the nasal mask and have been using since. On the 2nd machine now it's a slow habit to get into but works well no snoring is the best benefit atleast to me it is I've been a snorer all my life in the Service I was known as the Rafter shaker, not a good nickname. The effects were not immediate. Now I wake up at night say if the power goes off, that has occurred a few times. If I travel and forget to been it, I get a very bad night's sleep.

Re: Newbie would like to hear success stories, please.

Posted: Sat Jan 30, 2010 4:03 am
by cpap-wolf
I have to admit it took a few years before it was recognised and found out that I suffered from OSA (obstructive sleep apnea). At first the Drs. I went too put it down to stress and working too hard. However, a few years later I had moved in with my partner and changed Drs. Both my partner and myself were noticing I was getting worse and worse with my tiredness. I was like a zombie and would fall asleep at the drop of a hat and be tired and irritable all the time! On the occasion I saw my new Dr. he had told me he had recently come back from a conference and during this Sleep Apnea had been discussed and he wanted me to go and get tested. Have to admit I had never heard about sleep apnea before and wasn't sure what would happen. Anyway a few months later I was given an appointment at a nearby hospital and had to fill in the epworth sleep questionnaire and asked all questions about my tiredness and sleep routine which I must say was appalling looking back on it.

Following from this I had to do the Stardust sleep test overnight and bring the machine back the following morning. I did this and a few weeks later I had a second appointment and was told there and then I suffered from OSA and would need treatment. Another appointment was setup with the local sleep lab at the nearby hospital and I was booked in for an auto-set test for 3 nights where I would be given a CPAP machine and it would see what level of pressure was required. I have to admit the first night of using the machine I woke up so differently. It is hard to put into words how I felt when waking up! I felt like a new person and that had slept through the whole night without waking up every hour and being restless. After the test I was told it would be a few weeks before getting my own machine and have to admit going back to nights sleeps without the CPAP was horrific! It is so strange to feel how I did again without the machine.

After the few weeks I had an appointment to collect my own CPAP machine. A Phillips Respironics. The first mask I had was a nasal mask. I used this for a few months but then was getting very sore around my nose and bridge. I then went to nasal pillows and used them for a long time. However, as time went by I was starting to have issues with these and went back to the sleep lap and was advised to try a full face mask. I am currently using the full face mask but am starting to find issues with that!

Yes this must make having a CPAP so easy and good but it is hard work and does take some time to get yourself into the routine! I have been on CPAP over 2.5 years now and now am going to be a lifer but I am not disheartened by this and don't let it bother me as it is now part of my routine. My partner was diagnoised with OSA a year after myself and we now both have CPAP machines and must say we don't look back as couldn't do without them! If we go off anywhere overnight or holiday etc we ensure our CPAPs are with us!

I hope this helps and shows that CPAP is very very helpful!!

Re: Newbie would like to hear success stories, please.

Posted: Wed Feb 03, 2010 3:49 pm
by janeysmom
Here's my story:

Through out my life I have been able to fall asleep very easily and almost anywhere. At different points in my life, I have snored but it wasn't until most recently that it became a huge problem. In the last two years, I have gained some weight and that I believe partially contributed to my snoring becoming a lot worse. But I know now that I suffer from moderate sleep apnea.

I was recently diagnosed and it was after spending at least a year or two nagging my doctor, she finally ordered a sleep study. I had my first one in mid-December and then a second one just over 2.5 weeks ago. I come to find out that my apnea episodes happen when I am in REM sleep. It turns out I had 43 of them in my REM sleep. Last week, I received my machine and I am extremely happy with the results. The first night went OK and I felt OK the next day but not as good since then. I finally feel that the fog has lifted and I can see straight and not want to fall sleep while watching TV or in the middle of the day. I know it is not common for people to have success so quickly but I did and I am so thankful for it.

So for those of you who are starting out or thinking of this therapy.. give it a try. I am interested to see what happens over time and see if my other health problems go away now!

Re: Newbie would like to hear success stories, please.

Posted: Thu Feb 04, 2010 10:13 am
by Sleep Nazi
There's three reasons why people are "non-compliant" on nCPAP: 1. Improper mask fit - causing discomfort (long term) 2. Over titrated (too much nCPAP pressure - causing nCPAP induced respiratory events 3. Claustrophobia

Fixes: 1. Explore different masks, possibly try the new Easylife by Respironics - which self seals 2. Ask your doc for CPAP titration study at an accredited sleep disorders center by the American Academy of Sleep Medicine 3. Manually hold the mask up to your nose while watching TV or reading intermittently until you can get to the point of wearing the mask for two hours at a time.

Remember it's all about quality of restorative sleep instead of quanity of no restorative sleep.

Hope this helps,
Sleep Nazi

Re: Newbie would like to hear success stories, please.

Posted: Fri Feb 05, 2010 7:28 pm
by ozij
The name you chose gives me nightmares. This is a bump to make it disappear. Nazis were cruel murderers.

Re: Newbie would like to hear success stories, please.

Posted: Wed Feb 17, 2010 8:38 pm
by Debjax
I've been off the board for a while now, it's been a busy year. Hubby and I are now both officially over our first year on CPAP and will not go without it voluntarily. I hit my first year in December, hubby at the end of January. While I took to it like a duck to water, hubby had problems getting used to it. Recently I heard him telling a friend of his that the friend really needed to go get checked out for apnea and mentioned that CPAP had changed his life....and went on to say "When I first started, I did not like it and would have quit if not for Deb continuing to nag me about wearing it. I decided to give it a month, then I was going to tell her that it just was not working and be done with it. Funny thing was, after about 2 weeks, I realized I was sleeping better than I had in years. So I decided to try it a bit longer and give it a chance. I won't sleep without it now."

We have had to sleep without our machines twice in the last year, and both of us hated it. When we travel, no matter how tired we are when we get there, the first thing we do is set our machines up. He has heart problems and his Ejection Fraction has gone up 10 points (from 37 to 47) since he started CPAP.

Gang, if you're having problems adjusting, give it time, get the right mask and let it work. It is well worth it.

Re: Newbie would like to hear success stories, please.

Posted: Sun Feb 21, 2010 1:56 am
by Craig P
Being new to the forum I suppose you could call me a newbie, however, I have been using cpap for going on ten years. I was fortunate in that I took to the cpap and mask right away. I did spend some time working with masks until I settled on nasal pillows as the most comfortable for me. As I have not kept up with the newer technologies I was not aware that they have made so many improvements in the efficacy of treatment with the xpap machines. That gives me some hope that my ongoing treatment may actually move me forward in how well I sleep at night. I am currently using a Respironics SoloLx that I have had for over 5 years. I lost my first machine on a trip to China when I plugged it in to 220 voltage without switching the unit to the higher voltage. While I really enjoyed my sightseeing in China I had the most miserable week of my life since going on cpap. As I prepared to return to the US I called my wife and had her contact the DME and we drove by on the way home from the airport and picked up a new machine. The one I am using now.

Otherwise I have not slept a single night without my cpap. I begin to feel anxious if I even think about spending a night without my cpap. As kantaxel said "Life with sleep is so much better than an existence without."

One other thing I have noticed is that no one has mentioned the Sleep Apnea Questionnaire. I found it just before I started treatment and found that while it said that if you could answer yes to 5 of the questions you may have sleep apnea, I was able to answer yes to 25 of the questions. I have since shown this questionnaire to several co workers and they were surprised to find that they also answered yes to more than 5 questions.

At age 57 (the age at which my father died) I feel I am in better health than he was. I am certain that he had undiagnosed sleep apnea as he had suffered a stroke some years earlier and was always falling asleep on the couch whenever he would lie down to watch TV.

Please do your family a favor, follow through on your treatment. The xpap machines are not a ball and chain. They are something that can give you back your life.

Re: Newbie would like to hear success stories, please.

Posted: Mon Feb 22, 2010 2:58 pm
by CPAPcub
Hi,

Firstly, thanks for a great forum. I've spent a while here reading, learning and being heartened that I am not alone!!

I was recently diagnosed with severe sleep apnea. I have been prescribed a CPAP set at level 14 and a full face mask.

I have used it 4 nights now and already feel much less depressed, am not waking up with a headache, am not going to the bathroom during the night, am not waking with the pillow soaked from night sweats, am not waking up choking, am not falling asleep during the day or evening. I hope my BP will also start to fall in due course, too. I am enjoying feeling tired because it's late and I nbned to go to bed rather than because it's 2 in the afternoon and I need to sleep.......I still wake during the night but so far it's been to adjust the mask. I'm hpoing in time I will be able to go to sleep and not wake again until it's time to get up!!

Re: Newbie would like to hear success stories, please.

Posted: Wed Feb 24, 2010 10:27 am
by sweetdreams58
I'm so happy to have found this website. I was just recently diagnosed with sleep apnea, and have been using a CPAP for a little less than a week. The first night, I only made it for an hour and a half on the machine, but each night has gotten better and I'm up to 6 hours now. My problem is that when I wake up, my nose is "stuffed up" (just a normal pattern for me), so I take the mask off and go back to sleep. Last night, I kept the mask on and re-started the CPAP to ramp up again, and it helped a lot. Even so, I notice a big difference in how much energy I have! I can't wait to get through the whole night with my CPAP.