Newbie with a thousand questions!

[Catnap]

Mermer, there is a new study that says the oxygen deprivation we with apnea experience is just like that experienced at certain levels of high altitude. At that altitude, people develop high blood pressure. The drug used to lower the blood pressure might be protective against the oxygen deprivation damage. There's a link to the study posted here I think last Monday (by Rooster maybe?). The study was on Mt Everest and the drug was an angiotensin receptor blocker. EDIT: See my post just before your latest, I'm the one whose peeing stopped my first night on CPAP, I had some fabulous results right from the gitgo (I had great sleep best I'd had in a decade), the rest of the benefits didn't start for another 9 months. I'm still seeing benefits so don't give up!

I'm another one who stopped the nocturia the first night on CPAP. I often think I'd stay on CPAP even if it didn't help anything but that! I used to get up at least 4-5 times, and sometimes 8-10 times. Now, it's very rare to get up once at night -- I think it may have happened twice in six months on CPAP.

FWIW, I take an angiotension receptor blocker (ARB) and it's the first drug that has given me reasonable BP control. My BP was very refractive to therapy. What finally got it down consistently was the combination of the ARB and CPAP. Sadly, many insurance companies have ARBs in the top tier for drug co-pay, and there are no generics, so they are more expensive to buy even with insurance. Some companies won't cover them at all. I pay more than $2 per dose with insurance, and I use what is probably the least expensive ARB.

[roster]

....... NOW, I get up, take off mask, turn off machine, repeat steps, back to bed, mask back on, and try to get back to sleep before I have to get up again in one to two hours! I get more exercise every night than I get all day long! I haven't seen this addressed on the forum. ......

Don't take that mask off to pee! Here is from another post I just made:

My DME showed me the best way to manage disconnecting the hose. She gave me a hose quick connector, https://www.cpap.com/productpage/hose-q ... nnect.html . This goes on the end of the hose that attaches to the machine or humidifier. When I have to make a pinkelpause, I unhook the hose from the machine and wrap the hose around my neck.

Others take their mask off. Then you have to put the mask on again and make sure it is placed properly. All of this is an aggravation and tends to get you wide awake.

On the other hand, I am able to slip out of bed, take a quick pee, and slip back into bed very easily thanks to the hose quick connector. IMO, any DME worth his salt will supply and explain the use of a hose quick connector.

When we start we have so much to learn. But keep reading and posting here daily and in two weeks you will have much of the knowledge you need.

Good luck,

[roster]

..... But what do you guys think I should be using?

If you breathe through your mouth during any part of the night you need to be using a full face mask. Stay away from that crude mouth taping practice if at all possible. I did it for six months when I first started with CPAP. Then I was so happy when I switched to a full face mask - much better therapy.

[denniscb@shaw.ca]

I recently changed to a CPAPRO mask, no straps. very comfortable very little blow back. Best mask I have ever had.

[junie]

welcome to our group, I have high BP.also I still pee at night, When I wear my FFM. I get a real bad headache.

[Guest]

Thanks, DBoone for all the good definitions. But there are two I didn't see there.
What is the difference between C-flex and A-flex??? My C-flex is set at 3...what does that mean?
Everytime I asked the DME rep a question, she says "that's something you really don't need to know"!!

And, Gerald, you've got some great positive advice...you give me real confidence that if I just hang in I'll make it someday! But, your picture really scares me!!

I can't wait to get up tomorrow and see what new things I can learn.

I think this is #11...where can I look at one of those CPAPRO masks?
Also, I tried not taking the mask off to go to the bathroom (my hose unhooks at the mask), but the claustrophobia set in and I couldn't breathe, yanked it off and had to set up for almost two hours before getting sleepy enough to try again. I woke up, too, with a headache every morning but finally got over that...I usually take two Aleve about 3 am anyway with a BP pill I have to take every 6 hours.

[Pugsy]

To Guest:
Google CPAP PRO and you get http://www.nomask.com/. The poster that mentioned this misspelled it.
If you use this forums search function for nomask.com you will find several discussions about it.

AFlex and CFlex are the Repironics machines exhalation relief feature. AFlex is newer. A setting of "3" in either is simply more exhalation relief. Someone else will need to explain the mechanical differences or the Respironics web site offers quite a detailed explanation. I don't have that link handy. These are user comfort features and each person will likely have their own preference.

[roster]

.......Everytime I asked the DME rep a question, she says "that's something you really don't need to know"!!

............

Many DMEs got their training from mushroom farmers: "Cover 'em with manure and keep 'em in the dark".

[Kiralynx]

If you breathe through your mouth during any part of the night you need to be using a full face mask. Stay away from that crude mouth taping practice if at all possible. I did it for six months when I first started with CPAP. Then I was so happy when I switched to a full face mask - much better therapy.

I couldn't stand the taping -- too claustrophobic -- and I also couldn't tolerate a full-face mask. At full pressures, I was suffocating -- the claustrophobia again. So full-face doesn't always work better.

That's why I invented my "brandy keg" which keeps my chin from dropping with either my Headrest or my CL2.

I do use a Zzz-mask, full face, if I have a respiratory infection, or if my allergies kick up. But I need my brandy keg with it, too.

[kteague]

First a comment then a question on the frequent urination at night ... Freqent urination at night can have other causes besides the apnea and BP, as in some bladder diagnoses, poorly controlled blood sugar, and in the flushing of retained fluids (edema) that resolves during sleep. At times when my legs have looked like tree stumps at bedtime then normal in the morning, that fluid had to go somewhere! Effective cpap therapy can only help with the ones related to SA and HBP. Notice emphasis on effective. I wouldn't too soon rule out those trips being reduced if one is still working thru optimizing their treatment.

About Lasix at noon - seems taking it earlier would be too obvious. Maybe there's a reason I'm not privy too. Even so, seems its effect would be over by bedtime. All I know is all things about my fluid retention improve parallel to my sleep quantity and quality. Even though my sleep is still very fractured, getting cpap treatment right has helped trememdously. I went from pottying about a dozen times most nights down to almost never. I think if I knew that my treatment was therapeutic and I was still getting up a lot at night to pee, I'd wonder if something else was going on.

But on the other hand, as I think thru this, if one has an Apnea Index of 4 during an 8 hour night, that's 32 opportunities to still have apnea induced need to urinate, right or wrong? So my question for those more knowledgeable on the subject, are the potty runs more based on overall high blood pressure, or spikes in blood pressure caused by events? Could continued trips even be a sign of needing to further optimize ones treatment? I need to go to bed and stop thinking too much.

Kathy

[roster]

.....
That's why I invented my "brandy keg" which keeps my chin from dropping ..........

K.,

I am glad that works for you and it might work for many. But then there is the rest of us who will leak air through the lips with a completely closed mouth. Even when we put an air tight tape on the lips, the cheeks puff out causing arousals. That's why we just need to get on with a full face mask. Like Carbie says, I still don't know why people flee from FFMs.

[Gerald]

Kathy......

Your thoughts about "urination urgency" at night being caused by overall blood pressure...or spikes in blood pressure...helped me see the problem more clearly.

I think what many of us experience is "urgency" caused by spikes that are caused by apnea events.

Murmer......Sorry if my avatar is scary......his name is "Scred"....and he was a one-season character from Saturday Night Live in the 1970's. He was created by Jim Henderson and his Muppet crew. I loved their "skits" on SNL....and always looked forward to their irreverent humor. Sort of like John Belushi, I miss the Muppet group (of which Scred was a member). There is a classic bit done by Scred and Lilly Tomlin where they sing "I've Got You Babe" together. It can be seen on Youtube at https://www.youtube.com/watch?v=Vb68zu_dTmU

Gerald

[Slinky]

... Everytime I asked the DME rep a question, she says "that's something you really don't need to know"!!

And YOU don't find that OFFENSIVE??? I don't tolerate that type of remark from a doctor w/o speaking up to ensure that it doesn't happen again so I sure as h*ll wouldn't tolerate it from some lackie at the local DME supplier's office, RRT suffix or not!!!

[DBoone]

The Respironics site is always slow and you will often get the page not found screen. You just need to keep refreshing the page until it finally loads.

http://aflex.respironics.com/

http://cflex.respironics.com/

[rested gal]

... Everytime I asked the DME rep a question, she says "that's something you really don't need to know"!!

And YOU don't find that OFFENSIVE??? I don't tolerate that type of remark from a doctor w/o speaking up to ensure that it doesn't happen again so I sure as h*ll wouldn't tolerate it from some lackie at the local DME supplier's office, RRT suffix or not!!!

It struck me that way, too, Slinky! That kind of condescending attitude burns me up.

I know there are good ones out there, but I'm so glad I've never had to deal with any DMEs. I've often said I think my nice normal blood pressure would go skyhigh if I came across some of the ones that people have written about on this message board.