A note to the new user

Sleepless on LI wrote:

Grabraham wrote:

I would love to see that at the top of the page somewhere so when people click onto these message boards, this is what they see. Absolutely adorable!!! Boy, that therapy is really working for you, Grab. You keep coming up with great ideas.

It is all Linda's fault

Grabraham wrote:It is all Linda's fault

What did she do now???

Jimmy-- I realize you are probably already at your sleep titration study as I type this......

By why in the heck do you have to wait until October 13 to begin treatment? Did I read that correctly? That's two weeks away!

Maybe you could call your physician, tell him about your problems at work and get something started BEFORE then! Maybe you can get this process bumped up and going! It is definitely worth a try! Let the doc and the RT's, etc., know that you are in crisis mode!

Jan in Colo.

Jan, you were correct I was getting wired up as you typed. The reason for the two weeks is to allow time to get the results interpreted, written up and to the doctor. They won't do anything less than two weeks. I tried. The medical industry can be frustrating at times. Its like calling and saying I'm sick and they say come in in two weeks. Hell I can be dead or cured by then so who needs you! Very frustrating.

The good news is the titration went well. The tech was very helpful. I had no trouble going to sleep, less than 5 minutes, and only woke once to roll onto my side. Can't recall anything else so I must have slept. Feel better than usual today, so far I haven't needed the Provigil but do feel a little drowsy so won't try to be a hero. They used the Mirage Activa Mask with Headgear and a humidifier as I have a history of stuffy nose. At times the sensation was uncomfortable but I wore the mask for about a half hour before getting into bed so was somewhat adjusted to it. Felt weird not breathing through the mouth. He said I was at a setting of 10.

Well that's about it. I got to keep the mask and hose but until the doctor writes, and the DME comes, I'm stuck in "stand in line and wait" land. Its like being in the Navy again, well sort of. The good news is the study went well, the problem has been addressed and thanks to all of you I'm feeling pretty damn good about things! Y'all have a good day!

Jim in unsunny Maine

Jim,

So the study is over (phew) and it went surprisingly well. Good for you!!! That was half the battle and now the battle on home turf will begin. Good for that sleep study clinic that had the brains to give you an Activa mask to wear. One of the best for CPAPers starting out. Sounds like you took to it like a duck in water. And if you could notice an improvement in how you felt after the first night, you are going to do just great. I, too, am on 10 and it's not too strong to have problems breathing with, I don't think. You should do well.

Let us know when you find out what equipment they're going to give you and what mask you get. Remember, you do have a choice in this. If they are going to give you something you don't particularly want, you can let them know that. They wanted me to have a full face mask and I refused and got what I wanted. So it's not etched in stone. Good idea to try to find out beforehand so there won't be any surprises when you go to pick up your equipment that could lead to a delay in your getting what you want and starting therapy, especially since it will be a couple of weeks before you get your equipment.

You know, thinking back, they told me that, too. I called the sleep clinic and apologized first to the lovely woman there, but explained that I can't take another two weeks; that I was desperate for help now. I told her I was aware that everyone who comes through their doors probably feels the same way, but with three kids, a husband and a full time career, it was now interfering with my life and ability to work (had to take off a few days toward the end because of sheer inability to function or move). She did what she could and I had the equipment in about a week. It was worth the call. She stayed on top of the RT who was going to write up the report to fax to my doctor. Then I took it from there. Once the doctor got it, they immediately faxed it to the DME and I had my equipment the next day. You are your own best advocate.

Good luck. You must be glad the study part is over.

Sleepless on LI wrote:

Grabraham wrote:It is all Linda's fault

What did she do now???

Haha!

She (me) was just a fan of all Grabraham's smilie creations and I've gotten him to do more. Now if I can only figure out how to create one like that newbie smilie thingy, I'd be in heaven!

And thanks to that cute little smilie maker Grabraham sent me, I'm having lots of fun:



More, I want more cool things!


Linda

LDuyer wrote:

AWWWWWWWWW

Amen, Grab! And thanks.

I have a straight CPAP machine with no software or "smart card," and I like it very much (although I'll admit my incurable curiosity has me wondering at times...).

I recently started a month's self-titration trial using an APAP machine, but had to give up after 4 nights, 3 of them just god-awful with precious little sleep and lots of problems (runaway pressures, pressures so low I felt as if I were suffocvating, . Admittedly, my APAP machine might have been defective or improperly set up, but my sleep doc (who ordered the trial) says sometimes the machines are just too smart for their own or the patient's good.

garys wrote: Admittedly, my APAP machine might have been defective or improperly set up, but my sleep doc (who ordered the trial) says sometimes the machines are just too smart for their own or the patient's good.

What is your titrated pressure? Change the range on your auto from the "wide open" 4-20cms to something that is 3-4cms below your titrated pressure and up to 3-4cms above your titrated pressure.

Sometimes the sleep docs are just not smart enough about auto machines for their own or their patient's good.

Anonymous wrote:

garys wrote: Admittedly, my APAP machine might have been defective or improperly set up, but my sleep doc (who ordered the trial) says sometimes the machines are just too smart for their own or the patient's good.

What is your titrated pressure? Change the range on your auto from the "wide open" 4-20cms to something that is 3-4cms below your titrated pressure and up to 3-4cms above your titrated pressure.

Sometimes the sleep docs are just not smart enough about auto machines for their own or their patient's good.

I agree with the last comment, and so does my sleep doc. The machine had been set up by a respiratory therapist. The settings went from 1 cm below my titrated pressure to 10 cm above (4 to 15). However, sometimes the machine would start at 1.5cm or less, leaving me deep-breathing to get enough air, keeping me awake and worrying. The experience left me thinking too much about the machine and the trial, according to my sleep doc, who said that pretty much ruled out the trial's getting useful data from me. He said the less you think about PAP, the better it works. (So, I guess he's not a fan of sites such as this.)

Isn't it interesting that this is one (maybe the only one) place in medicine where they don't care about the numbers but care about how you feel? Gee, in just about anything else it's "You can't be having flank pain. Your kidneys are fine according to this report." Perhaps that is good for a change!

garys wrote: The machine had been set up by a respiratory therapist. The settings went from 1 cm below my titrated pressure to 10 cm above (4 to 15). However, sometimes the machine would start at 1.5cm or less, leaving me deep-breathing to get enough air, keeping me awake and worrying.

I don't understand this. They set your APAP for a range of 4 to 15. You were titrated at 5. Why is your machine starting at 1.5cms? It should be starting at 4, the bottom number it was set to, and should never go below 4. In fact, I was under the impression that the auto could not go below 4cms period. You should not be seeing 1.5cms. Something is wrong.

Do you feel starved for air at 4? If not, have them reset it for 4-8. If even 4 leaves you feeling starved for air, have them reset it for 5-9. Don't give up on it yet; it sounds like it was set incorrectly, and certainly the high end at 15 is overkill if you were titrated at 5 IMHO.

guest,

Thanks for the good advice, but I've already bagged the trial and returned the APAP. I'm already used to my hardly-any-bells-and-whistles CPAP machine, and happy to stick with it.

lots of new users in the last week... bumping