Honeymoon is OVER...need input please

[DarkSideOfTheMoon]

1. Lincare. I was prescribed a F&P 406 petite mask. Lincare won't provide because they don't make enough $ on it. Instead I got a too large mask. I bought 2 other masks one being the 406 petite mask. It fits much better and is tolerable. I can't keep doing this because of $ restraints.
About a month ago Lincare called to say they were shipping out the new cushion for my mask. I told them not to bother since I don't use that mask. I am due for another mask on 9/20. I went to Lincare and while trying to work with their masks found Mirage Swift LT. Until I actually sleep with it on, I won't know if it works or not. They do NOT offer a 30 day guarantee. They are also stingy about letting me try on masks since they throw them out once they try it on you.
So, now my 406 mask is sliding/leaking because the silicon is worn thin. I CAN'T SLEEP! I told Lincare I want 30 day mask guarantee and to get ANY mask/chin strap I want (current chinstrap is causing horrible acne). He said "get a new DME provider". Called Aetna and they said that the DME is supposed to give me what the doctor prescribes if I want that. DME said that is incorrect. Any ideas on this????
2. Apria - only other provider on my network for cpap. Not really calling me back. Promised me the world until I told them that I already had my machine thr Lincare. I would need to return machine to Lincare and rerent thru Apria. I'm leery because the devil I know is better than the one I don't.
3. Intellipap - I don't trust the data. I know I am coughing all night (other issue that I need suggestions for) and yet it is only showing 1 Exhale Puff Index her hour??? Lincare will also not provide me with the desktop software. Should I try to get a different machine?
I broke down and bought the insert for my current mask and a papcap that will arrive tomorrow. How do I stop coughing, get a DME that will work with me on masks, assert my rights? They are all slime balls aren't they???
Thanks all.

Cathy

[twokatmew]

I'm sorry you're having this struggle, and I know how difficult it is to find a petite mask, as I use the FlexiFit 406 too. I broke down and ordered a replacement cushion and seal out of pocket, as my DME thinks it's billed the same as a mask and thus wouldn't provide me with one when I needed it! I've also gotten a new FlexiFit 406 from cpapauction. They usually go for about $30, but I lucked out and got one for less than $10 not too long ago. I too thought the DME had to provide what the doc prescribed, but I could be wrong. Fortunately my DME has provided what the doc prescribed, but then he didn't prescribe anything they don't carry.

A DME will rarely if ever provide a patient with software. Even if the doc gives you an Rx, you'll likely have to pay for it out of pocket. A lot of people like the Intellipap Autoadjust, and if you switch to Apria, from what I hear, you'll have a battle on your hands to get a data-capable machine let alone an auto. Get the doc to prescribe a particular machine?

I too considered switching DMEs, and when I visited the potential new DME, I had such an experience that I had no doubt I would stick with the devil I know!

Do you have any other respiratory problems which might cause you to cough at night? Or might you be having events that result in coughing? With severe asthma, coughing at night was a big problem ... until I started CPAP. I'm not familiar enough with Intellipap's exhale puff index, except I know it's supposed to reflect mouth breathing. Perhaps the coughs are registering as apneas or hypopneas?

Sorry I can't be more helpful. Good luck and please do keep us posted!

[DarkSideOfTheMoon]

Thanks for sharing your experience! Since I haven't been sleeping well, it's definitely making me remember how crappy I felt pre-CPAP. I can't believe I lived, worked, survived with that day after day. I have learned so much on this forum and how and when to fight for my rights. I am not giving up. Just need a good nights sleep to give it a go round. They will be very tired from my squeaky wheel.

When my mask leaks it's letting out a high pitched scream which my husband jolts awake yeling "What's wrong, what's going on???" He thinks it's me screaming. Kind of funny actually. I will keep you guys posted.

Cheers,
Cathy

[ozij]

I wouldn't consider coughs and exhale puffs similar, which is why I wouldn't worry at not having coughs appear as exhale puffs.

Try to wash everthing (humidifier hose, mask, whatever is washable in filters) thouroughly. And see a doctor about the coughs.

Some coughs may be side effects of medication -- have you started any new medication recently?

O.

[DarkSideOfTheMoon]

Yes, I am on Lisinopril which I know causes cough. I take it in the morning and after a few minutes I will cough a few times during a 20 minute period but then stop for the rest of the day. I went a few days without it to see if it would help. It didn't. About 5 minutes after I put my mask on, I can feel my throat drying out and the tickle starts me coughing. Do you think upping my humidifier would help with that? I am on setting 3 now which is just low enough to prevent rain out.

Thanks!

Cathy

[ozij]

Someone once reported his runny nose was a response to the CPAP air being too dry. I think I may have read it elsewhere too.

And I think it was ResMed who suggested cleaning equipment if you get a runny nose. After you've cleaned your humidifier, mask, hose and filters, try playing around with the humidifier. Rainout can be avoided with hose covers and a heated hose (I need both).

O.

[brians34]

The cough could be caused by allergies.

[pagebypage]

1. Lincare. I was prescribed a F&P 406 petite mask. Lincare won't provide because they don't make enough $ on it. Instead I got a too large mask. I bought 2 other masks one being the 406 petite mask. It fits much better and is tolerable. I can't keep doing this because of $ restraints.
About a month ago Lincare called to say they were shipping out the new cushion for my mask. I told them not to bother since I don't use that mask. I am due for another mask on 9/20. I went to Lincare and while trying to work with their masks found Mirage Swift LT. Until I actually sleep with it on, I won't know if it works or not. They do NOT offer a 30 day guarantee. They are also stingy about letting me try on masks since they throw them out once they try it on you.
So, now my 406 mask is sliding/leaking because the silicon is worn thin. I CAN'T SLEEP! I told Lincare I want 30 day mask guarantee and to get ANY mask/chin strap I want (current chinstrap is causing horrible acne). He said "get a new DME provider". Called Aetna and they said that the DME is supposed to give me what the doctor prescribes if I want that. DME said that is incorrect. Any ideas on this????
2. Apria - only other provider on my network for cpap. Not really calling me back. Promised me the world until I told them that I already had my machine thr Lincare. I would need to return machine to Lincare and rerent thru Apria. I'm leery because the devil I know is better than the one I don't.
3. Intellipap - I don't trust the data. I know I am coughing all night (other issue that I need suggestions for) and yet it is only showing 1 Exhale Puff Index her hour??? Lincare will also not provide me with the desktop software. Should I try to get a different machine?
I broke down and bought the insert for my current mask and a papcap that will arrive tomorrow. How do I stop coughing, get a DME that will work with me on masks, assert my rights? They are all slime balls aren't they???
Thanks all.

Cathy

If you are having issues with the humidifier, going to the Swift LT, may not be that good of an idea. Switching to nasal pillows may require an even higher setting on you humidifier, from my experience anyway. The Swift LT has been a good option for me, but with the Liberty hybrid, I have nasal pillows without needing a humidifier at all. Of course, we all are different and you may still need the humidifier. As mentioned, insufficient humidity tends to cause stuffiness, and in response to the stuffiness lots of drainage ensues. With a full face or hybrid, you will probably use a lower setting on the humidifier or not need it at all.

I would address the coughing as a separate issue with your doc. Unless it is caused by dryness, which doesn't make sense if you are having rain out, it is probably something else.

[Wulfman]

Yes, I am on Lisinopril which I know causes cough. I take it in the morning and after a few minutes I will cough a few times during a 20 minute period but then stop for the rest of the day. I went a few days without it to see if it would help. It didn't. About 5 minutes after I put my mask on, I can feel my throat drying out and the tickle starts me coughing. Do you think upping my humidifier would help with that? I am on setting 3 now which is just low enough to prevent rain out.

Thanks!

Cathy

Four and a half years ago I was put on Lisinopril and had horrible coughing spells. I was able to verify it by going off of it (a few days might not have been enough time). Starting on this therapy made it even worse. My doctor switched me to Diovan upon my complaints about the adverse effects.....and that was better.
After being on CPAP therapy for nearly a year, I stopped taking that, too.....my blood pressure was in reasonable limits.

I don't think any amount of humidity will fix the problem......it's the medication and its effects. I used to stick a cough drop in my cheek or take a sip of Nyquil cough syrup before masking up and that did help a bit.


Den