Woozy, Dizzy, UCK!

CrystalP · Post by **CrystalP** » Tue May 02, 2006 8:11 am

I am new to CPAP and this forum. I have been using my CPAP 2 months now and so far I am not impressed. I really want this to work and my ENT continues to assure me that I am going to feel SO much better. I really hope so but so far I am woozy, almost dizzy and somewhat disoriented most of the day. If I have a particular bad night I really feel like crap the next day. Short of breath and anxious. This is an awful experience. Anyone else out there experience these problems and does it really get any better??

Guest · Post by **Guest** » Tue May 02, 2006 8:36 am

Hi Crystal, here are some questions for you so we can get a better idea of what you're dealing with and how to help:

Is it possible you have an ear or sinus infection?

Do you sleep through the night? If not, can you tell what it is exactly that's waking you up?

What is your pressure set at?

What is the make and model of your machine? If it is a machine that has accompanying software, do you have it? If so, what does the nightly data show for your stats?

What is the make and model of your mask? Is it a full face mask, nasal mask, nasal pillows?

Yes, it gets better! Once you zero in on your specific issues and try some solutions, it can get A LOT, LOT, LOT, BETTER! With all the smart, experienced people on this board, there will be lots of suggestions, I'm sure. Don't give up!

NightHawkeye · Post by **NightHawkeye** » Tue May 02, 2006 8:45 am

Crystal, how were you feeling before being diagnosed with apnea? Did these symptoms start when you started CPAP? Did you have a sleep study and, if so, what did it show?

It's unfortunate your physician isn't helping you with this. There is lots of support from CPAP users here though.

Regards,
Bill

CrystalP · Post by **CrystalP** » Tue May 02, 2006 8:59 am

Admittedly I don't know what type of machine I have, but I will find out and post it. I don't think I have any ear or sinus infections. I have had adnoid surgery recently. My ENT found that my adnoids were very enlarged and causing airway blockage. I think he thought my problems with the CPAP would get better after the surgery but it really hasn't. I think the pressure is too high but I am told that my machine "ramps" automatically and can't be adjusted. I am discovering this is apparently going to be alot of trial and error. And unfortunately I don't feel that my ENT is as attentive as he should be.

Guest · Post by **Guest** » Tue May 02, 2006 9:02 am

CrystalP wrote:I think the pressure is too high but I am told that my machine "ramps" automatically and can't be adjusted.

No matter what kind of machine you have, it can definitely be adjusted. Sounds like you have the typical completely unhelpful doctor. Never fear! Once you have the info, post it here and you will get all kinds of help! (The kind of help you should, theoretically, be getting from your doc.)

CrystalP · Post by **CrystalP** » Tue May 02, 2006 9:48 am

Hi Bill,
Before my sleep study I had been chasing symptoms very much the same as I still experience. Dizziness, fatique, anixiety, lack of focus, vague stuff that seemed to have no pattern or cause. This had been going on for years. I had really begun to believe I was nuts! The majority of doctors I have seen were little to no help. I truly have lost almost all confidence in our medical system. I have literally been sent to almost every kind of "specialists" you can name. Actually it was a cardiologist that finally ordered the sleep study and diagonised severe OSA.

NightHawkeye · Post by **NightHawkeye** » Tue May 02, 2006 10:21 am

CrystalP wrote:The majority of doctors I have seen were little to no help. I truly have lost almost all confidence in our medical system. I have literally been sent to almost every kind of "specialists" you can name.

Yep, been there, done that, came to the same conclusion.

CrystalP wrote:Actually it was a cardiologist that finally ordered the sleep study and diagonised severe OSA.

OK, given that your sleep study diagnosed severe OSA, you should know that there are a number of reasons that therapy might not be working very well for you. I'll list some of the ones discussed frequently here:
- mouth breathing, if using a nasal mask
- TMJ problems causing increased apnea, if using a full face mask
- sleep study titration level too low, i.e., atypical sleep in lab

There are other reasons that have popped up on this forum as well, I believe. Crystal, do you have any idea if any of these might apply in your case? What machine and mask are you using?

Regards,
Bill

Malibu · Post by **Malibu** » Tue May 02, 2006 12:34 pm

Crystal,

I to have (had) the same symptoms as you and that is what finally netted me a sleep study. Dizziness, fatigue etc.. Two complete blood panels etc and nothing wrong. Thryroid fine etc. I still feel that way after 4 months but not as bad now. I think now that I am more awake I realize how bad I really felt. Before bad was just bad and it felt the same all the time. I still have a long way to go before I would consider myself back to normal however I keep looking ahead.

The doctor described it as being a zombie when you get to rock bottom, then as you come back to life you start realizing how bad things really got.

Yes, to low a pressure can cause you a problem however to high a pressure can also net the same results. I just had my third follow up titration since I wasn't feeling all that great still and in the original titration I only slept 108 minutes and the guy kind of ball parked it.

I went from a 9 to a 7. At 9 I was having EEG arousals that were keeping me up and at 7 almost no arousals. I did not have apneas at either number and just a few hypopneas at 7. A good trade off in the end. The original guy was trying to get rid of all the apneas and hypopneas which in most cases may be what they are trying to achieve however for me, 9 was driving me nuts. I tried 10 for a month and that was bad news. I guess more isn't better...maybe in gas mileage, bigger paycheck etc but sometimes not with pressure.

I really questioned the sleep doctor about going lower and he said it should make a difference and low and behold it has made a huge difference. I should also point out this is my NEW sleep doctor as the old ones answer was to put me on klonipin and drug me to sleep. I get kind of excited when I read on the web all the side effects of that drug, one being it creates insomnia and sleeping problems after several weeks of use.

Either way, we are all different and everyone has a different pressure, type of mask they like etc

Later!

Marc

NightHawkeye wrote:
CrystalP wrote:The majority of doctors I have seen were little to no help. I truly have lost almost all confidence in our medical system. I have literally been sent to almost every kind of "specialists" you can name.
Yep, been there, done that, came to the same conclusion.

CrystalP wrote:Actually it was a cardiologist that finally ordered the sleep study and diagonised severe OSA.
OK, given that your sleep study diagnosed severe OSA, you should know that there are a number of reasons that therapy might not be working very well for you. I'll list some of the ones discussed frequently here:
- mouth breathing, if using a nasal mask
- TMJ problems causing increased apnea, if using a full face mask
- sleep study titration level too low, i.e., atypical sleep in lab

There are other reasons that have popped up on this forum as well, I believe. Crystal, do you have any idea if any of these might apply in your case? What machine and mask are you using?

Regards,
Bill

Guest · Post by **Guest** » Tue May 02, 2006 12:49 pm

Have your doctor give you a vitamin B-12 shot.

CrystalP · Post by **CrystalP** » Wed May 03, 2006 7:57 am

Hi All,
Did everyone sleep well last night? I got lots of great feedback yesterday on my first post and I really appreciate the help! I have posted my equipment this morning and according to the literature in my package, my pressure is set at 4/20. I have no idea however what that means! The only adjustment that has been made is the settling time. I complained after the first few days to my therapist/supplier and they told me how to increase it from 10 minutes to 30 minutes.

NightHawkeye · Post by **NightHawkeye** » Wed May 03, 2006 8:19 am

CrystalP wrote: . . . my pressure is set at 4/20. I have no idea however what that means!

For one thing, it means that your machine is not optimized for you. The good news is that you've got one of the best machines available. The bad news is not really very bad, just that most folks find it necessary to make some adjustments to narrow the range from 4 to 20 (say 9 to 12, for example) so that the machine doesn't have to start at 4 cm. The problem with starting at 4 cm is it takes the machine a while to respond to apnea and during that time one may experience enough apneas to cause one grief before the machine gets to a therapeutic pressure.

Crystal, you only listed the card reader in your profile. Does this mean that you don't yet have the Auto-scan 5.7 software to monitor your nightly results? Most folks seem to find it easier to make adjustments if they can see the nightly results with software.

Regards,
Bill

CrystalP · Post by **CrystalP** » Wed May 03, 2006 9:51 am

Hi Bill,
Thanks for your reply. Glad to know I have a good machine! I really do not know what software I have or don't have. I have a call in to my provider (Trinity) now. When I was given my CPAP they really did not give me alot of info and actually told me that I did not need to know what all the buttons were. They are supposed to contact me once a quarter and have me insert a card into the machine that records info and mail it to them. That's really all I was told. I now realize I need much more info if I am to be successful at this. I also want a copy of my sleep study. I will keep you posted re-their response.

Thanks again,
Crystal

Bonnie · Post by **Bonnie** » Wed May 03, 2006 10:17 am

Crystal, do you own your machine or is it a rental?

CrystalP · Post by **CrystalP** » Wed May 03, 2006 10:35 am

Hi Bonnie,
I am leasing it. Apparently I will own it after some period of time. I have asked my provider to clarify that for me.

Guest · Post by **Guest** » Wed May 03, 2006 7:25 pm

When you find out the pressure you were titrated to, you'll probably want to change the settings on your Vantage to narrow the range. Instead of having it at 4-20, you'll probably want to narrow it to a couple cms below and 4 cms above your titrated pressure.
Do you find you wake up with mouth-breathing or leaking air through your mouth at night with your nasal mask?