New here, Not to CPAP

[swede]

Hello All, I have been on the internet on and off this day after Thanksgiving seeking most everything, advise, knowledge. I was a CPAP user for 5 years averaging nearly 6 hours per night it seems I am limited by nasal congestion after about that length of time (Right now I take, Claritin, Sudefed 12hrs old formula, Nasal strips, and extra moisturizing nasal spray before bed every night 365 days per year} .The first sleep study was a revolution, I sleep there that night and I felt great, that really continued steady for 5 years That ended in 2008 with me losing about 60lb, 290 down to 230, now just overweight, not obese . That was great, I would have felt better but now my CPAP set at 13 did seem to be right, I was waking up huffing and puffing. I asked, and received another sleep study. The doctor I was transferred to from my PCP wanted me to have a machine capable of recording me sleeping. I was given one, a little different from my remstar I had at first. It is my current machine, a Pro 2 CFLEX. I used it had the sleep study at the same place as the first. Now when I became a CPAP user I went from a part time back sleeper to a full time back sleeper. We had a waterbed and I loved it. After I lost the weight I found I was having a harder time sleeping on my back. The RN that did the second test had switched me to bipap which woke me up. I asked her why, she told me I was having "centrals". It was a very bad night of sleep, nothing like the first one. I was sent back to the hospital to meet with my PA. I asked her about the "centrals", by definition scare the crap out of me. The PA question the validity of the "central" finding and gave me a prescription for a pressure of 9 CPAP. I am having a hard time in modern terms wrapping my head around that the "central" episode. I went with my prescription to the medical supply who services me. I mentioned I liked this machine with the CFLEX feature or at least I thought I did at the time. So my guy at the medical supply store asked me if I wanted a machine like that, of course I said. He set it to CFLEX because I said I like it (not sure what the prescription said). I began having so many bad nights that I read online how to enter set up mode and switch off the CFLEX wondering it that was the problem. No that did seem to help. I rotated from dayshift to night shift and put some weight back on, like 40 lb, now 270. Now I have a physical where my Doctor asked me if I using my CPAP. I told him no,I have not been. Nothing seems right with it period. I have upped the pressure from 9 to 10.5 now to 11.5. I woke up today feeling so bad, and like I was short of breath, or rather, cannot get a satisfying breath , having anxiety, and feeling miserable. At one point considered going to ER. I now I'm certainly non-compliant. I have had the machine for a year plus and there is only 63 >4 nights on the meter. They say my CPK levels are off and wonder if I have a muscle disease. I really thing If I can straighten the sleep thing out the rest of the things will straighten out as well. Until I figure out how to permanently, regulate my weight at some lower number a Auto Machine sound like it may help. Any comments suggestions or input. My rotating days and night shift is like a factory for a sleep disorder. Even that would be okay if I could get 6 good hours of sleep. Starting today I have became a advocate for my own health. The way I felt this morning, if I don't it will result in my ultimate demise. All assistance comment will be greatly appreciated.......Swede
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[rested gal]

Swede, welcome to the message board. Sorry to hear you're having a hard time getting good cpap therapy and good sleep.

If you can get a copy of your sleep study...the full NPSG report complete with graphs (not just a one page summary)... people here might be able to help you discover if you do have a problem with central apneas.

If the sleep tech was increasing pressure too fast during the sleep study titration process, it's possible the pressure increases themselves were causing temporary centrals to appear... centrals which would have subsided had he/she given you more time at each pressure increase.

On the other hand, you might have complex sleep apnea, in which cpap pressure itself causes a person who doesn't normally central apneas to have them. Getting your sleep study reports might shed some light on what went on during your study and possibly give you a better idea of how to go about treatment. If you have "complex sleep apnea" a more specialized type of machine (ASV machine -- adapt servo ventilator) might do better for you. Don't let the word "ventilator" alarm you. It's not an Intensive Care Unit (ICU) kind of thing! Just a more complex (and more expensive) kind of "CPAP."

But that's really jumping too far ahead. First thing is to find out what kind of sleep disordered breathing you have. Very likely your PCP is right about your needing just CPAP. A CPAP like the Pro 2 you had (still have that machine?) does produce data about how the therapy is going. Leak rate data in particular is something I hope someone took a good, close look at.

What mask have you been using? A full face mask that covers nose and mouth? Or a mask that covers the nose only?

[kteague]

Hopefully you are on track now to soon find some answers. I'd just like to suggest that you refrain from increasing your pressure until you are more informed about your current data and your sleep study results. If you are sensitive to pressures you don't want aggravate that. You may be able to expedite getting those reports by picking them up... just saying, I don't think I'd want to wait around on whatever routine procedures might be unless they can assure you it is efficient. With all the information you should be able to gain some clarity on your next step.

[swede]

rested gal and k teague, thanks for your response. Today was as bad of days as I have ever had. It seemed like it took me half the day to feel right. I have access to my PCP records very easy. I'm certain I can get those records from both of the sleep studies on Monday. Nice to know their is help out here. All I can say is when it was right it was excellent. I on 3rd shift till the 18th of Dec, then I rotate to 1st till July. I still currently going through the evening ritual of attempting to clear my nose. It is a real problem and I certain the PCP would not like all the stuff I am taking to attempt to make it work. His answers have not worked. With all the nasal problems I considered a FFM but it looks like it is discouraged. My current and only mask has been Mirage II nasal only. It seal good till I need a new seal. I will get it and contact you

thanks
Swede a.k.a. Doug

[Julie]

Hi, just a tip or two - sleeping on your back will provoke a lot more events than on your side, and if you can keep from doing it, do so, even if it means using those 'body' pillows behind you, or sewing tennis balls into your PJ backs. The second thing is your nasal congestion - have you tried turning the humidifier down, if not off? That often makes a big difference.

[cflame1]

rested gal and k teague, thanks for your response. Today was as bad of days as I have ever had. It seemed like it took me half the day to feel right. I have access to my PCP records very easy. I'm certain I can get those records from both of the sleep studies on Monday. Nice to know their is help out here. All I can say is when it was right it was excellent. I on 3rd shift till the 18th of Dec, then I rotate to 1st till July. I still currently going through the evening ritual of attempting to clear my nose. It is a real problem and I certain the PCP would not like all the stuff I am taking to attempt to make it work. His answers have not worked. With all the nasal problems I considered a FFM but it looks like it is discouraged. My current and only mask has been Mirage II nasal only. It seal good till I need a new seal. I will get it and contact you

thanks
Swede a.k.a. Doug

Who says that a FFM is discouraged? Where did you get that opinion? There are a few of us that use FFM... and if you're having trouble clearing your nose it appears that you may be a good candidate for one.

[Mary Z]

Doug, If I could I would get back with my doc (tell him what you have told us) and try and get a new sleep study and get retitrated. You had significant changes in your weight. Feeling as bad as you do it sounds as if you need more support from a sleep doc or RT. Good Luck, Keep us posted.
Mary Z.

[swede]

Julie, cflame1 and Mary Z thanks for your response.

I have a heated humidifier and a cold pass. The truth is I use them very little. I do not tolerate humidity very well. If I put the heated unit in the lowest setting I feel like I cannot get a satisfying breath. The most I usually do is put some water in the heated tank with out it on. It takes very little congestion to mess me up. My ENT told me that my nose looks like a train wreck inside. Slight nasal congestion causes turbulent flow, and makes me feel restricted.

I said FFM is discouraged. That may not be the correct term. It seems that they just set you up with a nasal mask when you start. I never knew there was such thing when I first heard of a CPAP. So I take that as not encouraging the use. Now, after finding out living and being successful with your therapy is number one really on yourself, and two ongoing then I say what ever works use it. I plan to get a FFM at least for the days I get a cold or the hay fever season is worst than normal.

I have a great relationship with my PCP. I can honestly say that I have never seen the same RT twice, and never have seen a sleep lab Doc. Our small rural hospital has a doc that comes in. I elected to go to a larger, hospital who lease rooms at a local hotel. There is a little less of a institutional feel. Like I said this is a war, not a battle and I really don't thing I realized that till this week. I can loose weight, but any change in routine and schedule throws me off and back it comes. My PCP wants me to see a neurologist due to my consistently high CPK level 268 this last time, Normal I guess is in the 60s to 190. I think it is from my exercise. I read a marathon runner had a level of 3300 after a 26 mile race. I hope getting back on positive pressure and decent sleep will make several things straighten out.

thanks all for your responses

Doug

[Muse-Inc]

OK, while you're waiting for the detailed records, a few suggestions based on my 30+ yrs experience with chronic nasal allergies, sinusituis, & rhinitis (vasomotor & gustatory [from certains foods]) and 42 months of CPAP therapy...I'm not an MD.

• The Grossan nasal irrigator, sorta like a WaterPik for the nose, cleans the nose and allows saline rinses of the sinus cavities to really get rid of crud and help promote healthy cilia action. While sounding gross, it's actually quite pleasant once you find the right angle of head tilt and right degree of warmth. When I use it, I use two full reservoirs of saline. Gotta do this several hrs before maskup as the cilia might take 20-60 mins to empty the fluid in the sinus cavities depending on how healthy your cilia are..in my case, bending over to set the table released several tablespons of crud & saline...yuck!
• I use Ocean spray when I get congested during the day...helps, doesn't 'cure.'
• I need antihistamines year round.
• Nasal steroids help.
• Azelastin sprays worked well for me for about 4 months and now just congeste me. YRMV.
• New technique I've bene using the past 2wks or so: starting where the nostrils at broadest firmly (not hard enough to make your nose red) rub your index fingers in small circles slowly moving up the sides of the nose to the bridge...repeat a few times; amazingly, this has been eliminating congestion for me, sometime my nose will start running for a few mins, other times, magically clears up.
• Start morning showers with hot, steamy water to help loosen overnight gunk.
• Sip steamy teas from cups so you're inhaling the steam.
• Quercetin and vitamin C (Solgar makes a combo pill) helps cut down on the inflammation that causes congestion. I eat a lot of foods that also reduce inflammation as we hoseheads have a lot of it. If you're obese, you also have more inflammation. Foods like curry, ginger, onions-shallots-scallions-leeks, dark red foods, garlic.
• Dark chocolate, 1-2 ozs, is as effective as codeine for controlling coughin...yet another reason to eat chocolate, the darker the better, at least 70%. I find the best prices on Ghiradelli unsweetened 100% ground cocoa locally is SuperTarget.
• Sleeping propped up really helps overnight congestion. I fon back, put a fat pillo wunder ypur knees to preserve the curve in the back. If on side, might have some back issues that require adding some stretching to your morning routine.
• The RespCare Hybrid Universal mask with the comfort of pillows and the security of not losing precious therapy air via lips/mouth; come with 3 sizes of oral cushion and 3 sizes of pillows that can be set to 2 heights help ensure a good fit. A lot of us here wear it; all with varying pressures, low to high. Comfortable too. Best yet...you can breathe thru your mouth when ypur nose is completely blocked from congestion!
• I sleep waay better with an APAP because it can deliver the pressure I need based on the current state of my airway congestion without waking me up 'cause I can't breathe/get enough air.

[swede]

Muse-inc, thanks for all the info.

The nasal irrigater sounds like something to look into. It seems what ever I do currently it only last about 4 hours, then I wake up from the slow build up of restriction. I am just beginning to investigate APAP and FFM options or a hybrid as you said. I also am on Claritin 365 days per year. It has stop my frequent sinus infections, which is very good. I was getting them multiple time per year pre-cpap, and now it has been several years since I have had one. I am non compliant at this point with my insurer I am sure and I may see my PCP on another issue and discuss the sleep war with him. I would like to get off the sudafed type product due to hbp. I take it because it works for right now. The Wamart nasal spray works but again i here it is not good to use long term. I'm headed to bed right now. I have my pressure at 11.5 last night I slept as good as I have in months . I will leave it there to see how I feel. I do not advocate anybody just playing around with there CPAP. But when you have had a weight swing as I have, and two levels 9-13 then I have done it a bit. 13 was making breathless when I woke up after losing 60 lb. after I thought I would be re tested and between the CPAP therapy and losing weight I would feel great and have good energy. It didn't work out that way. I quite using the CPAP not fully understanding my part of the responsibility of making sure it was right. I like the idea of no CPAP but I feel much better with it when it is working. Enough rambling. I have actually been looking forward to sleeping. That has not been the case. I have been falling a sleep due to exhaustion. Sleep just has not been that great, I now have some hope

Thanks for all
doug

[Julie]

Muse-Inc... I normally agree with what you advise people, and think you have a lot of good points here. However, your advocating of strong spices and chocolate ("the darker the better") could really cause terrible GERD in a lot of us, though it may temporarily help congestion. I would be more inclined to tell him to get re-examined and look to other ways of helping his congestion, if only to not steer newbies the wrong way in case GERD is an issue for them, if not Swede.