How many stuck with CPAP, or sought alternatives?

Sleepless on LI · Post by **Sleepless on LI** » Thu Sep 15, 2005 6:28 pm

th,
I use the Remstar Auto, too, and now the Aura, which I adore so far. Never had a mask like this before. But I'm 48 and feel so good that it's hard to believe. I am so grateful to have had something that when treated makes me feel so good again. I was seriously thinking it was aging or maybe something the doctors were missing. Well, they were missing the diagnosis of OSA. But now that it's discovered, I am back to my old energetic, never want to sit still self. They used to call me hyper. All of a sudden, I was a lump who couldn't physically get off the couch when I wasn't working. So compliance does pay off in spades.

Chrisp,
Four years? You must feel like a 12-year-old by now. That's fantastic. I hope to be telling people the same thing three and a half years from now. And you're right. Age is just a number. You are as old as you feel, which makes me about 18 right now.

Im2tired · Post by **Im2tired** » Sat Sep 17, 2005 10:49 pm

I have been on CPAP for over 3 months and I have not adjusted well. I would rather use something like the Swift but I'm too congested so have to use a full face mask which tends to leak a lot. I still wake up frequently and the whole night seems like a blur. I have not missed a night and sleep with mask all night except for a few times when I must have gotten up and then when I laid down was too tired and fell asleep before putting mask on.

I have an appt. with an ENT for Monday. I don't know if he can do something to help the sleep apnea but at least if there is something that could help the nasal congestion so I could learn to breath through my nose, I think that would help. My allergy doctor said there wasn't anything else I could take which I translated into "You have too many problems and I don't want to deal with you." If I knew surgery had the possiblity of helping I think I would do it.

Last week I was tired most days and this day I was much less tired but actually more anxious, possibly because I'm awake enough to realize how much stress I'm under!

rock and roll · Post by **rock and roll** » Sat Sep 17, 2005 11:01 pm

He can't give you Flonase?

worse comes to worse you could used nose spray but only at bedtime so you don't get addicted. I hate doctors that give up, they ought to just quit and do something else.

Im2tired · Post by **Im2tired** » Sat Sep 17, 2005 11:32 pm

I use two nasal sprays - Astelin and Nasonex. I think I may have tried Flonase in the past but it would have been a long time ago. I take 2 allergy meds (Singulair and Zyrtec). I have taken Allegra in the past and it was about the same as Zyrtec. The Astelin helps some but not enough that I don't feel like I can breath at night. Also seems to be burning now so I'll see what the ENT thinks because apparently nasal congestion (and snoring) is one of his special interests. On my own I decide to take sudafed with everything else. But these are not the only allegy meds out there. Then he threw in that the allegy prick test didn't show that I was allergic to anything. He had told me in the past that I didn't react to anything but that didn't mean I didn't have alllergies - just that I was a bad reactor. Just because I didn't react when they put a little allergen under my skin doesn't mean that I wouldn't react when I breath an allergen. I didn't react to wheat either but that doens't mean that I won't get sick when I eat it because that's part of one of my other problems - celiac disease. My body treats wheat, rye, or barley was a foreign body and attacks my intestine in the process.

I feel abandoned by the medical profession.

rock and roll · Post by **rock and roll** » Sun Sep 18, 2005 12:02 am

Hey guys, I know how you feel as it seems the more docotrs know the less they do for us but hang in there. There are good caring professionals oout there but sometimes we have to take the initiative and find them.

Patrick A · Post by **Patrick A** » Sun Sep 18, 2005 1:33 am

I am kind of new to this I have had a REMstar Plus since the end of June 2005
All I can say is it's the best thing that my Doctor has done for me, She insisted I have a sleep apnea study done,
I also had a Humidifier but I have yet to use it, when they help me set up the unit (fit the mask) they said to try it with out the humidifier, and then set it up if needed, I guess I'm lucky.

I have not slept this well in all of my adult life. I will not give this thing up. I have had a few problems get used to the mask but now it's second nature to put it on, My wife says that I sleep and do not move any more and I used to toss and turn and kick all night before I got this unit.

rested gal · Post by **rested gal** » Sun Sep 18, 2005 1:41 am

Hi Patrick. It really is a wonderful thing, what cpap can actually do when it works well for someone. Glad you're having such good luck with yours. I do, too.

Im2tired, it has to be frustrating for you. I truly hope you'll be able to find a doctor that can help you more.

Sleepless on LI · Post by **Sleepless on LI** » Sun Sep 18, 2005 8:38 am

I'm2Tired,

Sorry to hear you are having such trouble. I find it odd that your allergy pinprick tests showed nothing, yet you are on all this medication for allergies. Does that mask the allergens from being picked up on the test if you're on the meds? I don't know how long you've been using the sprays, but my dad, who is Mr. Careful by alias, many years ago became addicted to Afrin nose spray to the point where his sinuses would swell up until he used it again. The sinuses actually became dependent on the Afrin to remain in normal state so that he couldn't breath unless he used it. His ENT had to wean him off of it and then he was fine. If you are using it too much, that can happen to you. Nose spray is very tricky and you truly cannot use it more or even sometimes AS OFTEN as the labels tell you that you can without having a physical dependence on them. I'm sure this is something you already know, but thought it worth mentioning just in case. Hope you find perhaps another doctor who can suggest a new approach or find something the last one can't.

Patrick,
WTG!!! When it works, it's a Godsend. Glad you're one of the fortunate ones who have been blessed with successful therapy. It's a beautiful thing to be able to get real sleep. Continued success.

yawn · Post by **yawn** » Sun Sep 18, 2005 9:26 am

I started using my CPAP in July 2005 and in the beginning, I had trouble keeping the mask on all night. After a week or so, things smoothed out for me and I've been totally compliant. Unfortunately, I still don't feel very well (I'm looking into that) but I will continue to use my CPAP until told to do otherwise. I NEVER EVER hear from my DME. She told me to call her if I had any questions. I'm very disappointed that there isn't better follow-up care for such an important problem.

My Mom tried to use a CPAP 1 yr. ago and never could get used to it. I have no idea what type of machine or mask she was using (she doesn't know either). She was never offered any choices for the machine or mask. She doesn't even know what her pressure was set at. It's no surprise that she couldn't do this. Her Doctor and DME failed her!! She lives pretty far away from me so it's hard for me to help her out with this (plus she's pretty elderly and has a variety of health issues). It's such a shame that she got no support with her CPAP experience.

nodding off · Post by **nodding off** » Sun Sep 18, 2005 1:55 pm

I was a quitter. I was diagnosed with severe OSA in 1995 (AHI=94) and went on CPAP, couldn't tolerate it, had UPPP surgery (unsuccessful), retried CPAP, and put it away for several months. I fell asleep behind the wheel momentarily about 3 months after putting it away. I was very lucky I was unhurt, just scared. I resumed CPAP, and have been on it and compliant ever since. As much as I hated it in the beginning, I don't give it a second thought now. It simply becomes part of your life. Believe me, it is certainly worth the effort. I average 7.4 hrs a night on my APAP, with my AHI is less than 5. I would encourage anyone having difficulties to stick with it. It does get easier.

Guest · Post by **Guest** » Sun Sep 18, 2005 2:38 pm

Nodding Off,

Your story should be made a part of a permanent thread for all to read when they feel they can't take it anymore and are about to quit. Thank goodness you survived your ordeal and have learned that it is vital that you be compliant. You have also learned that it does get easier and the rewards of sticking with it far outway the results of not doing so.

I don't think people understand sometimes that there really is no choice if you want to keep yourself healthy and safe from harm. Not only is your present and future health at risk when you give up and don't use your machine, but you put yourself and everyone else around you in danger, as you are living proof of. Fortunately in your case, you nor no one else got injured.

Congratulations on finding your way back and sticking with the therapy this time. You are a success story. Someone was truly watching over you. Don't ever forget that you've been given a second change. You are truly one of the lucky ones.

Sleepless on LI · Post by **Sleepless on LI** » Sun Sep 18, 2005 2:40 pm

The last post written by GUEST was me...cleared my Temp. Internet Files and forgot to log back in...sorry.

cat-a-tonic · Post by **cat-a-tonic** » Sun Sep 18, 2005 9:26 pm

Laurie - As far as allergies go, have you had a blood test to identify possible allergens? The blood test I am referring to is called ELISA, and I believe there is another one called RAST. A friend had her blood tested and found that she could not tolerate black pepper, food coloring and a few other items normally ingested. She also has a latex allergy, which as a nurse caused her a lot of difficulties!!

Just thought you might want to check the test out! Take care and good luck!

Machine

How many stuck with CPAP, or sought alternatives?

cpap alternatives none