Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Fell asleep fine I would say....probably only about 20-35 min went by until I was asleep. I took Ambien so that I wouldn't be tossing, etc. And I usually take Ambien anyways. I took it the night they set my pressure to the right level, etc.
So anyways, my husband looked over at one point and said he saw me asleep, and it looked like I was doing fine with the CPAP.
But then at one point, probably about 3-4 hours into sleep, I just randomly decided (in an Ambien delerium) to take the mask off. And my husband says he remembers that waking him up, so he witnessed this too. I do remember it, but it all felt kind of dream-like.
If I was actually fully conscious, I doubt I would have taken it off, because theoretically I wanted to go the whole night with it.
But anyways....no relief today. In fact, I'd say I'm more tired than normal.
Is that a bad sign? Or too soon to tell? I have heard it helps some people right away.
Also, I am thinking I don't have central apnea, because in the study, they said that once my pressure was at 7, I had no apnea at all. So I'm thinking that means my apnea must be obstructive?
Maybe I just need bipap instead? Or is the first night too soon to expect results?
Any thoughts? Should I give it more time before being discouraged? (of course I'll keep trying it at night, not stopping yet!)
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ambien can cause people to get up and drive while still sort of asleep and actually wake up only when the run over the curb so, the ambien will probably have you making adjustments to the CPAP at odd times.
Until you can sleep mostly straight through with it for several nights - or a couple weeks - you may not see much but then, all of the sudden you should feel some improvement.
It takes a while to get used to even new pajamas or a new pillow. This will take a while to have that feel comfortable on your face. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
(((((((hoose))))))
ah, sleep.
one night doesn't tell you a thang, my dear. at least, not according to the sleep tech i had. she said it can take up to 6 months to feel a big improvement!! . some see a huge change within a single night (oh lucky ones), others can feel an ever so slight increase in energy say at 4 in the afternoon...Nothing about CPAP efficacy is predictable, apparently.
That you are more tired may not mean the CPAP isn't working, though. Is it possible that you actually slept better than you have in a long while, and your body is saying aaaaaaaahhhhhhhhh.. i needed that, give me lots more sleep now that i know its possible?
also, if masks are similiar enough to compare pressure, 7 is high, again, according to my tech. she had to ratchet mine up to 6 at the beginning of my second sleep study, and she wasn't happy about starting that high. the higher the number, the LESS effective the machine works. she thought i was at a six because of air leakage..
are you sure you have a good seal??
i get my CPAP machine next week, will let you know if i hear anything from the machine techies that may apply to you.
until then- sending you lots of hugs.. and zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz's
pickles
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
It took my ex about 3 weeks to quit throwing his mask off in the middle of the night. I know because when one takes off the mask, it goes from a nice quiet humm that might help the spouse sleep, to a big WOOSH that will scare the crap out of someone!!!
So, I think you will not notice any relief until you get used to the mask and quit pulling it off, then you will need a few weeks for your sleep routine to catch up and make you feel any better.
By the 6 month mark, my ex felt better and wouldn't even consider taking a trip without the CPAP machine. Please give it more time!!!
Posts: 893 | From Florida | Registered: Dec 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- They say it takes 21 days to break or adopt a habit. Just getting used to the mask would take 3 weeks, then.
I wonder if self-hypnosis would help. "Be one with your mask" sort of suggestions just as you drift off to sleep.
You are comfortable with it and welcome it in as it allows you to breathe calmly and deeply, as if opening a window, embracing fresh air as you drift in to a deep, restful sleep.
Your husband can help by saying positive things to you when you are very relaxed. Words with negative connotations should never be used as the brain takes things in literal pictures and commands. But positive words and directions can be very helpful as the brain wants to help you get better and if you tell it certain things, it will do its best to help you out when it can.
Instruct, ask for what you want (not for what you don't want). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks for the suggestions!!!!!
Still working it all out, but this encouragement is helping me keep going.
Threw the mask off again tonight, but I think it will get better. The guy at the rental place warned me this might happen, I just didn't really believe him. Hearing other experiences is helping, etc.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
(an aside to Keebler- you rock, girl. your suggestions are always so grounded, well-informed, and useful... ) Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Dilly,
Thanks. When my health first started to take a tumble but doctors said it was all in my head, a nurse worked with me on visualization and hypnosis. I actually became certified in hypnosis then, from the health perspective and to help my speech students not get so freaked out with public speaking.
I learned a great deal about how the brain interprets every word we utter. But I also learned that I could not talk myself out of such a serious circumstance, no matter how relaxed and positive I became. It's very humbling experience.
I was in way over my head and did, in fact, have several tick-borne infections. No doctor every bothered to be a good detective. So, I was all on my own, and it would be years before I would even learn about lyme.
Adding to self-hypnosis, years later when I learned Qi Gong, I could increase the effectiveness of centering, relaxation and visualization techniques. Sure, it all has limits, yet also quite a bit of power when used accordingly, even with every day situations. I can't imagine how I would have managed without these tools. -
[ 08-16-2010, 03:29 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hoosiers,
A friend of mine had trouble with the mask and fixed up a cotton liner that went between her face and the plastic of the mask. A paper towel may work but you just want to be sure no fabric or paper gets caught up in the machine or your mouth or nose. I think she taped it to the outside and then just folded it over inside to be more comfortable to her skin.
She also soaked the mask to get some of the aroma out of it. I don't recall what she soaked it in but she also gave it some fresh air rather than putting it away during the day.
A massage for the mask, so to speak, may help it better mold to your face and feel more flexible.
Just some thoughts. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Didnt read all replies...
But I have had cpap for a long time now.
It takes a loooong time to get used to cpap. I mean months. And for me I go through periods when I get sick of it. I rip it off in the night. I dont mean to. I dont remember it either.
It happens.
Keep working with it. It will help eventually.
What kind of mask do you have? I have a nose mask and its better than a whole face mask.
Keep up the good work!
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hi Merry,
Yes, I have one of the nose masks....the one where the two little things go up into your nostrils. Swift LT, I think.
I read on a CPAP forum to tape the mask on, so you will hopefully wake up while you are trying to remove it. May try that.
So it will help my daytime fatigue, eventually, you think? I just need to hear some success stories for motivation!
Thank you all.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Hi! Yes once you keep the mask on all night you will see the relief. Also if you have sleep apnea you would likely be o\covered for provigil to help with energy. I cant remember if You have tried it.
I have a love hate relatioship with my cpap. I even travel with it. I need it and you will see the difference soon. hang in there.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know a couple people for whom a CPAP changed their lives. I could see that they had better color in their faces, better energy stores and could think and talk better. I think for both of them they would have died without it. Seriously.
I hope this soon becomes more comfortable for you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
((heh heh on the idea that provigil AND a CPAP will be prescribed 'cause you have sleep apnea.
My docs first refused to give me provigil anymore because they said the insurance company needed me to prove I had sleep apnea. I proved I had sleep apnea.
Now they now flat-out refuse to prescribe provigil because I will have at some point get a CPAP machine, which they clearly presume will utterly change my life and health the day I get it)).
Hoose- have faith, sweetie. Of course the CPAP will help you.. give it and yourself a chance. Obstructive apnea is caused by (very loose terms here) your tongue doing the wrong thing; the CPAP machine makes your tongue behave, which allows you to sleep AND breath at night, problem solved.
PS- the full mask seemed more comfortable to me.. and my sleep techs said that for most, it is preferable to the just-nose version. Looking at it, it looks bigger and clumsier and scarier somehow, but I tried both the just-nose and the nose & mouth mask, and the nose & mask version felt much better.
Breathing through the just-nose mask made me want to breath more through my mouth, which caused awful and strong suction and a feeling of suffocating.
The nose-mouth mask I used did NOT feel that way.
Don't know if you tried out a variety of masks or if you had---or still have-- a choice, but telling you for what's it worth.....
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Taking the mask off could be the problem. Also, your mask must fit properly and you should give it several nights in a row of actually sleeping well to se a difference.
I'm no expert but did a lot of research about CPAP in the past and my FIL uses one.
Posts: 1104 | From N.California | Registered: Jan 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks all!!!!
Keebler, did those miraculous results take a little bit of time to happen? (not sure if you know)
It is sounding like I just need to give it more time (and of course complete a whole night with it, haha). So thanks...that is what I was hoping to hear.
Thanks everyone. You guys are the best. Definitely needed some encouragement.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Relax, CaliHoos. It took me 2 months to get through a full night with my CPAP. Now I wear it all night, every night. I feel weird without it!
I also use the full mask. When I started out on CPAP 10 years ago, most of the equipment was for men. Now, there are all sorts of petite options for masks. I think you will get used to whichever one you start with. Just make sure you are not a mouth breather!
While my CPAP is squarely in the life-changing category, obviously it did not get rid of all my symptoms, or I would never have pursued a Lyme diagnosis. If you need it, use it! But you may still have Lyme-related fatigue.
Let's do chat tomorrow night (Wednesday). We're in the same time zone now!
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Hmmm....Wednesday night I won't be able to be in chat until late! Like probably not until 11 PM/midnight or after. Sigh. It's one of the only nights I actually do have something planned. So we'll see if I make it in there. If you aren't willing to be up that late, no worries.
Thanks for the additional input. I am sure I'll have more questions as this whole thing goes on. Have been using www.cpaphelp.com a tiny bit....but they are way too serious over there! (it's intimidating!)
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
OK. Maybe no chat tonight. Thursday is out since Project Runway is back on!! Friday?
Hoosie, I'm not sure whether I mentioned this to you before or not, but one of the things my sleep doc suggested to me was to disconnect my mask from the CPAP machine and just wear the mask alone around the house to help me get used to having something hooked up to my face.
Maybe trying something like that will help you get used to having yourself hooked up to the CPAP?
It took me about a month to get to the point where I was wearing the mask all through the night without yanking it off in my sleep.
Having said that, there were still plenty of times after that where I did yank it off, and it was usually due to extreme frustration with mask leak issues.
I have to use a full face mask. I had to try many different brands before I found one that seemed to suit me the best. I also got some of the extra supplies that other users had recommended to try in hopes that they would better my chances of success.
Some of these things were:
1. Place the CPAP machine at least 6 inches below my mattress level to avoid water runoff and spraying from my machine (it has a built-in humidifer chamber).
2. Get a "hose buddy" -- Respironics makes a really good one. This is a tubular wrap that is very soft and the tubing just slips inside the wrap. It's function is to help keep the tubing insulated and warm and it will help to avoid the spraying and water runoff that can happen with ambient temperature changes and humidifed CPAP machinery.
3. I even got one of those CPAP bed hooks which is designed to rest underneath your top mattress. It has velcro straps which will hold the hose in its place and also elevate the hose a bit above the head. Since I kept getting tangled in my hose from tossing and turning so much, this little hookie thing helped alot, actually.
4. Another thing I had to do was tape the nasal pillow part of my mask to my nose to help keep it in place. I use the Mirage Full Face Liberty mask -- it has nasal pillows and then a mouth cushion.
The issues I have now, as I've already shared with you, are: my inability (due to being too sick and/or weak) to perform thorough cleaning on all of the CPAP equipment -- the full face mask needed to be disassembled in order to thoroughly clean and the tubing is kind of a pain to clean thoroughly; and an annoying allergy or sensitivity to all of the cleaning solutions/soaps I've tried to clean the thing with. Plastics tend to absorb and keep soaps. At this time, I'm not even sure whether I tolerate the plastics in the tubing and masks.
Did you doctor prescribe an automatically adjusting CPAP machine that has data capability?
Fuzz
Posts: 503 | From Maryland | Registered: Oct 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Eek!]](eek.gif)
![[kiss]](graemlins/kissing.gif)
pickles
![[Smile]](smile.gif)
![[bow]](graemlins/bow.gif)
Printer-friendly view of this topic