15 months and still tired

always_tired · Post by **always_tired** » Tue Feb 17, 2009 8:07 pm

Oops! Posted under wrong username initially.

I was diagnosed with OSA in Sept. 2007 and I still don't get a good night's sleep. I have had 4 sleep lab overnights (and two different doctors) and each time the doctor ups the pressure setting on my CPAP (RemStar Pro M Series). During last summer, I basically could not go to work due to excessive daytime sleepiness. I could sleep through phone calls and doorbells; several times co-workers came over to check on me. My supervisor asked me to stay away until the problem was solved. However, my sleep doctor would not support a paid medical leave because "sleep apnea is not a disability." So I was out for months on unpaid leave. I am afraid that I am about to find myself in the same position again. After my pressure was upped to 13, I was able to go to work some, but as the weeks went by I started missing more and more work. I haven't been in for a couple of weeks now. My last sleep lab (last week) resulted in a pressure of 17, so I don't have much experience at this level. The doctor has been wanting to keep me during the day for a multiple sleep latency test to see if I have a form of narcolepsy, but I have to sleep soundly through the night at the current prescribed pressure before he can do that. He did tell me that sometimes when a person has suffered from excessive daytime sleepiness for years, it doesn't go away even with CPAP treatment! I started having sleep problems in 2002 so it's been quite a number of years that I have had alertness problems. So where does that leave me medically, disability-wise? I don't want to be "disabled" but I don't know how much longer my employer will allow this situation to go on. From the other posts, it seems that making an ADA case out of this is virtually impossible.

Any suggestions or thoughts from other CPAPers? I am compliant with using the CPAP every night (except when I have a runny nose from a cold or allergy). I have noticed that the more the pressure is increased, the more disturbed sleep I have from leaks, whistles, etc. I have to use a full-face mask because I'm a mouth-breather.

Thanks

Goofproof · Post by **Goofproof** » Tue Feb 17, 2009 11:40 pm

One, fill in your profile completely in text form not Iconny. in comments add your pressure. Then people will have a basis to suggest help.

Off hand I bet you use a Nasal mask and end up mouthbreathing, with your treatment escaping from your mouth. That's common for that to be the case. Also having a machine that collects full data and the software to use it, helps you find problems in your treatment. You have a lot invested in making this treatment work, your job and health, it pays to get it correct. Jim

rested gal · Post by **rested gal** » Wed Feb 18, 2009 2:13 am

Welcome to the message board, always_tired! Hope that nickname becomes "used_to_be_tired" eventually. With the support and help you'll get here, there's a good chance of that happening.

Goofproof wrote:One, fill in your profile completely in text form not Iconny. in comments add your pressure. Then people will have a basis to suggest help.

To make your machine and mask info show up automatically each time you post:

Click the words User Control Panel (upper left of this page, just below the "Search" box.)

Click the Profile tab.

Click Edit Equipment (select at least the machine and the mask.)

If you're not sure of the name of your machine, look on the machine. Full name of machine is usually written on top. Name of mask is usually written on back of headgear or on the mask itself.

Allow other users to view your CPAP equipment: Yes

How would you like your equipment displayed: choose Text (not "Image")

Click Submit.

boston · Post by **boston** » Wed Feb 18, 2009 5:28 am

always_tired wrote: However, my sleep doctor would not support a paid medical leave because "sleep apnea is not a disability."

you might do some research on this, i read somewhere that sleep apnea is 50% disability.
if you cant sleep effectively, you cant function effectively.

heres where i read that
viewtopic.php?f=1&t=37650&p=328423&hili ... ty#p328423

and you might go to the top and search for disablity and read more

always_tired · Post by **always_tired** » Wed Feb 18, 2009 1:17 pm

Added equipment as suggested. I have tried just about every full face mask on cpap.com at one time or another. This new pressure of 17 is really making me miserable with leaks. Someone should invent a caulk-like cream to use for stopping leaks.

I think the sleep lab disabled the Encore card.

newname · Post by **newname** » Wed Feb 18, 2009 4:54 pm

When they wanted to raise my pressure from 13 to 18 I asked for an autopap. I found out that I actually spend most of the night at 8 or 9. Very rarely do I get up to 13 or 14. I'm still tired all the time too. I might try taping even though my sleep doctor advised against it. I've tried 2 different full face masks but there was too much plastic on my face.

boston · Post by **boston** » Wed Feb 18, 2009 6:25 pm

newname wrote:When they wanted to raise my pressure from 13 to 18 I asked for an autopap. I found out that I actually spend most of the night at 8 or 9. Very rarely do I get up to 13 or 14. I'm still tired all the time too. I might try taping even though my sleep doctor advised against it. I've tried 2 different full face masks but there was too much plastic on my face.

whats your range set at now ???

always_tired · Post by **always_tired** » Wed Feb 18, 2009 8:15 pm

Sleep apnea is not considered a disability because it is entirely up to the patient to treat it or not (at least that's what another doctor told me). Also, it's hard to know for sure if the patient is being compliant or not.

LoQ · Post by **LoQ** » Wed Feb 18, 2009 11:08 pm

I felt minimal relief from sleepiness on CPAP therapy until I tried taping. That changed everything for. I still don't have a lot of energy, but I'm no longer so sleepy.

That Sleep Tech · Post by **That Sleep Tech** » Wed Feb 18, 2009 11:54 pm

How goes it? I was just reading your post and though you might want to consider a MSLT. I've never done one, and I'm not a doctor but you might want to look into it. I don't know what you do for a job. However truckers, airplane pilots and other professions that require long periods wake with little stimulation have to get tested at times.

Here's a link

http://www.sleepeducation.com/Topic.aspx?id=38

Goofproof · Post by **Goofproof** » Thu Feb 19, 2009 1:02 am

The machine you list does collect full data, But just having the card is the tip of the iceberg, you must have the software and reader to operate the card. The card can not be turn off by a DME, however they are very good at ignoring it's use. that's why it's important to get the rest of your needed setup, so you can take control after a year it's clear they aren't doing the job.

With the software and reader you can post the Dailies from it and everyone can offer better options. Jim

always_tired · Post by **always_tired** » Thu Feb 19, 2009 10:48 pm

That Sleep Tech wrote:How goes it? I was just reading your post and though you might want to consider a MSLT. I've never done one, and I'm not a doctor but you might want to look into it. I don't know what you do for a job. However truckers, airplane pilots and other professions that require long periods wake with little stimulation have to get tested at times.

Here's a link

http://www.sleepeducation.com/Topic.aspx?id=38

I have to get a good night's sleep at the sleep lab without a pressure change before a MSLT can be done. My doctor is trying to get one, but every sleep lab I have had has resulted in increased CPAP pressure.

always_tired · Post by **always_tired** » Thu Feb 19, 2009 10:56 pm

PS.

I seem to have had a circadian rhythm change also. I find it nearly impossible to go to sleep before midnight. My first sleep doctor had all kinds of theories but my current doctor said some of those theories have not proved out.

always_tired · Post by **always_tired** » Tue Mar 03, 2009 9:26 pm

LoQ wrote:I felt minimal relief from sleepiness on CPAP therapy until I tried taping. That changed everything for. I still don't have a lot of energy, but I'm no longer so sleepy.

So you use the nasal mask and tape your mouth shut? Does the air flow into your nostrils bother you? I tried the Liberty hybrid and liked it when my pressure was 13. But now that it is 17, the air flow through the nasal pillows really hurts.

On a separate subject, my supervisor (who I have known for 25 yrs) told me last week that he was really concerned for me because I haven't been able to work very much.The bean counters are not in our organization so they don't know my history, and later in the summer our group is getting moved into another division.

jules · Post by **jules** » Tue Mar 03, 2009 9:36 pm

always_tired wrote:Added equipment as suggested. I have tried just about every full face mask on cpap.com at one time or another. This new pressure of 17 is really making me miserable with leaks. Someone should invent a caulk-like cream to use for stopping leaks.

I think the sleep lab disabled the Encore card.

which machine? plus? a smart card module with a plus is totally worthless for data -

15 months and still tired

15 months and still tired

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