First F/U with dr after cpap start was today

[Pugsy]

Well the long awaited visit to the sleep doctor (or rather his PA) came and went this morning. This was the first visit since the initial consult before the first sleep study.

I took with me a handful of my reports to go over and see if they had any problems with what I had managed to figured out myself and with the help of other members of this forum. I had to admit right up front that I had altered their original prescribed setting since the reports obviously showed it.

Short version. No problem at all. Cautioned me to not fixate on numbers alone but to use them when viewing the big picture of how I felt, which was what I have been doing. She confirmed that APAP is what she would have turned to if I had presented myself earlier with no improvement despite decent enough numbers initially.

For those of you that don't know my story I will share just a part of it. Initial sleep study showed only 11 events during normal sleep stages which is really rather mild but in REM sleep I jumped up to 53 events per hour with significant O2 level drops (73%) along with some 40 second events.

So for most of the night when I am not in REM sleep, I don't seem to need the higher pressures (heck I don't have many events). With a minimum of 10 cm I often see complete absence of any events for 2 hours stretches, then REM happens and my pressure needs go up. Sometimes I need 12, sometimes 14 and I have seen 18 cm reached. Most of the time 12-14 is where the bulk of the higher numbers will be. The machine won't be able to go from 10 to 18 quick enough to stop those really bad buggers but they are rare. I would rather have an occasional event sneak by (they are going to anyway) and keep my minimum down to where it gets the majority of events. Her recommendation 10 or 11 cm minimum and max of 20 cm as long as the pressure changes don't bug me too much. Pretty much what I had been doing on my own except for a few side experiments.

Then we discussed my other problem. Despite the adjusting to CPAP well and very decent numbers and some improvements (no bathroom breaks) I still was somewhat fatigued and no increase in energy levels. I already knew that I was still waking often due to back pain. If a person wakes, even briefly, it throws off the whole sleep cycle thing that allows for restorative sleep. So despite 7 - 8 hours of sleep, it still is not optimal sleep because of the frequent awakenings due to pain issues. We discussed pain med options. Tramadol (Ultram) which I take for pain has the unfortunate side effect of wiring me up, so I can't take it at bedtime. Muscle relaxants are completely a no no as they make sleep apnea much worse. Hydrocodone (Lortab) isn't so bad so that is an option. The other option is a sleep aid to help me sleep just deep enough that the pain doesn't wake me so much. Ambien.. I had a trial of it last month. It helped greatly on the nights that I used it. She said she had no problem prescribing Ambien (even long term) because it didn't affect the apnea and wasn't like some of the other sleep aids as far as addicting qualities.

So Ambien it will be until I can figure out something else to ease the back pain like a memory foam topper or something. I won't give up trying but in the meantime I am caught between a rock and a hard place. I still am not getting nearly as much restorative sleep as my body needs due to the awakenings from pain. So before anyone tries to blast me for resorting to drugs, be aware that I do know the risks. I have tried many other "natural" remedies and I will continue my search but I need help now. I simply have other things going on besides OSA that the machine can't fix. So my quest will continue.

Follow up visit in 6 months.

[harry33]

I think muscle relaxers would be OK as the CPAP compensates for the increased apnea
try daytime naps using CPAP

[Hoze-Zay]

I know you will do well with the new suggestions. Your posts are all great. You inspire me and you impress me. I think maybe you were put here as an inspiration and a guiding light for the rest of us sleepy Apnea travelers.

[robertmarilyn]

Pugsy,

I'm glad you were able to discuss your CPAP treatment and other issues with your doctor/PA (my gastro doctor's PA is wonderful and getting to discuss things with her is a huge benefit of using this particular doctor).

I rarely/almost never ever cuss but when I read the title of your post, did I immediately understand that F/U mean "follow up"? No...I thought it meant "flub up" (except spelled differently) I am glad things went so well because we know you have done your homework and for you to have a doctor who will actually discuss things with you makes the whole sleep apnea experience that much better.

mar

[SleepyT]

pugsy,
what kind of bed are you sleeping in?

t.

[mcejsul]

I already knew that I was still waking often due to back pain. .[/quote]

I find the back pain thing to be interesting. Is this a pain that you had before? I only ask because I have now been on the CPAP a little over a month and find my results somewhat similar to yours (ie: still a little fatiqued..I think improving...leaks are another altogether).
I will say though that there are a number of days that I am waking with a very stiff back, not a normal occurance but not totally unusual.
I wonder if I am sleeping funny with the contraption on my face.

Thnaks and good luck,
Mike

[alnhwrd]

FWIW, I have had great luck with the Sleep Number bed. It costs a bunch and you do get motion transfer when your bed partner shifts position, but I have zero back pain now where I had mild to moderate lower back pain every morning for years. YMMV.

[twokatmew]

Pugsy, this sounds like a great first report! Frankly I never would have known you are so new to xPAP. You are so knowledgeable! I'm hoping to swap my Elite II with a friend's AutoSet II for a week so I can (hopefully) obtain more data to show my doc when I see him for my first "sleep check" on the 27th. I hope it goes as well as your appointment did.

Mar, I too did not read the "F/U" as "follow up" on first reading!

[Pugsy]

Oh my, lots of questions. Let me try to answer some. Talking is what I do best..

I think muscle relaxers would be OK as the CPAP compensates for the increased apnea
try daytime naps using CPAP

Actually she said muscle relaxers are the absolute worse thing to try to take at night just for sleep. They also relax the muscles in the airway which are already wanting to collapse. I pretty much already knew that fact. Plus in the past when I have taken them the next day grogginess is awful. They would rather someone take Lortab (hydrocodon) than muscle relaxers. BTW I do occasionally get a nap (with cpap) but I try to limit them to emergency use because they can throw off my semi established improved sleep time cycle.

To Hoze Zay: Thank you for the kind words. I do appreciate them.

I rarely/almost never ever cuss but when I read the title of your post, did I immediately understand that F/U mean "follow up"? No...I though it meant "flub up" (except spelled differently)

F/U oops, my medical back ground made me do it because no room for follow up in the subject title. Though to be honest. I have been known to use some very colorful language and I do indeed understand the "other choice". In public I try to refrain and be a good girl... Hard for me sometimes.

what kind of bed are you sleeping in?

Hmm, regular king size pillow top that is "firm". It has about 5 years on it but I don't weigh much. Toying with getting a new mattress but trying other options first. I see someone praises the sleep number bed. If I win the lottery.... It is simply priced outside my pocketbook. I have drooled over it for quite some time.

I find the back pain thing to be interesting. Is this a pain that you had before? I only ask because I have now been on the CPAP a little over a month and find my results somewhat similar to yours (ie: still a little fatiqued..I think improving...leaks are another altogether).
I will say though that there are a number of days that I am waking with a very stiff back, not a normal occurance but not totally unusual.
I wonder if I am sleeping funny with the contraption on my face.

Mike, my back pain is long standing, nearly 20 years now. I am 57 now but in 1990 I was in a very bad auto accident. Essentially my pelvis was nearly crushed and my lower back was broken when the pelvis dislocated and slid into the lower back. Multiple fractures everywhere. Also ribs, lung, kidney and bladder got messed with. When I say back pain, I mean it in very general terms. Mostly it is pelvic pain. I have pretty severe arthritis in the pelvis, SI joints, lower lumbar area, scoliosis in the lumbar area, and cervical spine eat up with arthritis to the point that I have a metal plate in it to help keep it stable. I am a mess.. I didn't start having the OSA symptoms until about 3-4 years ago which was about 3 years after the neck surgery.

So I had pain issues long before I probably ever had OSA. One of the reasons I pooh poohed my husband's insistence than I had sleep apnea was because I thought all those awakenings were pain related. I thought the headaches were neck related. I see now that the headaches are "different". I see now that the awakenings are also different.
So I have learned some new stuff. It wasn't just the arthritis getting worse. It was something new.

I will say that using the CPAP and trying to stay only on my side is next to impossible. I simply must move around to flex things. If I don't, I can barely walk for a little while in the mornings.

Our bodies are really complex machines and sometimes it takes more than fixing one broken part to get them to run optimally. I have a good handle on the CPAP part. I wish the rest were so easy. And after all those things do get fixed, I still have to have patience.........Never has been one of my strong points and pay off a ton of sleep debt not just from the OSA
Brenda

[Pugsy]

Pugsy, this sounds like a great first report! Frankly I never would have known you are so new to xPAP. You are so knowledgeable! I'm hoping to swap my Elite II with a friend's AutoSet II for a week so I can (hopefully) obtain more data to show my doc when I see him for my first "sleep check" on the 27th. I hope it goes as well as your appointment did.

I hope your visit also goes well. I will admit I had a few misgivings because I knew I was going to be busted for self treating and I already had heard from the doctor's nurse that he frowns upon that.

Yes, I am new to xPAP but I have an extensive medical background. Jack of all trades and master of a few in the medical field. I lurked on this forum for probably a month before I decided to step up and join. I lurked on a few other forums as well but I saw that the members here were more my type of people. Fun loving but straight shooters. Plus I really resented the other forums rules and regulations about sharing the top secret info about how to get into our machines. I literally spent days and day reading the old posts here as well as the information in Our Wisdom section. I reread stuff until I felt I understood it.

I read and read and read tons of information about sleep apnea on the web. Treatment options, possible hurdles, possible tricks to over come the hurdles. While I have great respect for the medical profession I have seen it up close and personal. It is far from perfect. There is no way that I could have settled to be anything other than a very active participant in my own therapy.

[Mr Capers]

Hi Pugsy,

Another bad back here - herniated disc between L3/L4. Started about 45 years ago. I've had a surprising amount of relief from the book "Treat Your Own Back" by Robin McKenzie. I used to anticipate severe pain and long periods lying on the floor. Not any more. Granted, my damage is nothing compared to yours, so your mileage will vary. But, the book is inexpensive enough, not painful to lift , and is recommended by medical pros, if that makes a difference. Using it, I have had only one episode of serious back pain in the last 6-7 years. Where I live, I tell people we have only two seasons - wood splitting and weed whacking, so I get some exercise.

Another thing you might try is acupuncture. A good acupuncturist in your life can really make a difference in all sorts of ache/pain things. My local Kaiser medical center has two acupuncturists practicing in their chronic pain clinic. If you go this route, look for "L.Ac." which means Licensed Acupuncturist. You might also look for a graduate of ACTCM, (the American College of Traditional Chinese Medicine), the oldest, accredited, college of its type in the country. I used to consult with the College and know the curriculum to be rigorous, the Master's degree program is excellent, and the College has recently started an accredited Doctoral program. I'm not trying to write a commercial, sorry if I got away from myself there.

Here's a link to the book:

http://www.amazon.com/Treat-Your-Back-R ... 0959774661

If we're going to have SDB, let's have bad backs too, don't do things half way!

Happy naps,
Mr Capers

[Pugsy]

Thank you Mr Capers,
I have bookmarked that link. I will check the local library tomorrow. Small po dunk town and I won't hold a lot of hope but you never know. Otherwise I think I still have some funds available on an Amazon card someone gave me.

Years ago I thought about acupuncture but no one in this area did much with it. I will check into it again.
I have this thing about needles though. I can't make any promises... So funny, I can draw blood, give shots, sew up people, cut people open and it doesn't bother me one bit but getting stuck myself, that opens a whole different can of worms. I know they say you don't feel the needles but .... Anyway, thank you, I will at least investigate that option.

BTW good luck on your journey. I have read your story. You need one of those fancy machines for special people. Let's hope your adjustment goes smoothly with minimal hurdles. Most likely you will be like the rest of us. The MASK....thing..

[SleepyT]

pugsy,
if the air bed is out of budget, you might consider a water bed. very 70's, i know...but i love mine. would probably help with that bad back and arthritis. it's heated in the winter too...so cozy to get into. one of the bloggers here complained about having to burp the air out of the bed...which is true, but i don't have to do it often.

t.

[Mr Capers]

Hi Pugsy,

Apprehension about acupuncture abounds. You very seldom feel the needles - but you do feel the energy - which is actually a good feeling once you get used to it. Your Acupuncturist will tone down the sensation if you find it painful. Strange to get a needle two feet away and feel what seems like electricity in another part of the body. But, you do get some pain relief, and that's what counts.

Many thanks for the kind words. I've been on this journey for only 2 1/2 weeks - all that time with incorrect machines! I only got the BiPAP auto SV yesterday afternoon. Last night was first time with a humidifier. First time with the correct machine. God willing the Doc prescribed my settings correctly! First time with a new F&P Flexifit mask and I hurt all over: nose bridge, around nose, upper lip, did I miss anything?

You seem to have come up to speed on the knowledge ramp very, very fast. How did you do that? Are you just that smart with sleep apnea? If so world domination is yours once you get some good sleep. I feel like I am getting information overload, and don't know much at all. Some of this may be a result of sleep/oxygen deprivation. Also, too many new acronyms to learn!

Happy Naps,
Mr Capers

[Pugsy]

if the air bed is out of budget, you might consider a water bed. very 70's, i know...but i love mine. would probably help with that bad back and arthritis. it's heated in the winter too...so cozy to get into. one of the bloggers here complained about having to burp the air out of the bed...which is true, but i don't have to do it often.

You know I actually had a water bed for many years. Started with the single bladder type, then got one with baffles in it. Then upgraded to a softside water bed with tube and baffles because the bladder one was just too difficult to climb out of after the accident. I had it for probably nearly 10 years and got tired of waking up in water when the damn thing would leak in one of the tubes. So switched to this current mattress which was really quite comfortable for a long time. It may be getting a little tired. While I am not much weight on it, my husband is a big man so maybe it is getting tired because of him..

My sister got one of those memory foam toppers and she says it really helped her back. I got a small one for my husband to use in the truck sleeper (over the road truck driver) and he says it really helps him. I am thinking it is worth a try. I already tried the feather bed topper and that wasn't such a good idea. Found memory foam topper at Amazon.com that seems to get good reviews and price isn't such that I have to go rob a bank.
My little pug dog has some potential neurological problems and I don't want to spend any money right at this moment just in case he needs surgery. His hind legs aren't working so good and neither is his anal sphincter. God love him, nearly blind from cataracts, old, can't walk very good and can't control his bowels. I can wait a few weeks to see if he needs something special done before I spend any money on myself right now. I have gone this long like this, I can manage a while longer. It's not like I need morphine or anything like that for pain anyway. Don't want any pity. I am not in excruciating pain or anything like that. Don't want to make it sound like I am.