What Went Wrong?

pillarpaul · Post by **pillarpaul** » Sun Sep 16, 2007 8:47 pm

I startd cpap about a month ago. I felt so much better the very next day and for three weeks thereafter. I was giddy with my newfound energy.

Then a week ago today I woke up sleepy and with the old brain fog. I figured something didn't go right that night but it hasn't gone away since. I have done absolutely nothing differently than the first three weeks. In fact, I now only wake up from "tactile defensiveness" of the mask 2-4 times a night instead of the 6-8 times a night the first few weeks.

I use a Remstar C-flex with humidifier and Breeze nasal pillows that don't appear to leak at all. I do not have software with it.

Any ideas? I'm somewhat depressed over this . Thank you.

Paul

track · Post by **track** » Sun Sep 16, 2007 8:58 pm

I wish I had a good answer for you but I don't. Maybe it's like getting a new toy...the initial excitement that gave you all that energy has worn off.

I never experienced a big new influx of energy...but then I never got very excited about wearing a mask at night and pumping air in my stomach...it can be downright depressing and then the depression itself can rob a persons energy on top of the sleep issues.

Goofproof · Post by **Goofproof** » Sun Sep 16, 2007 9:32 pm

You need to fill in your profile correctly, A Remstar w/Cflex could be almost any model they make, You are using a nasal mask, if you let the pressure out of your airway when you sleep, the treatment doesn't work, Taping or a FF Mask will correct the problem. Welcome! Jim

ColoradoDreamer · Post by **ColoradoDreamer** » Sun Sep 16, 2007 9:32 pm

Sounds like air might be escaping from your mouth. Is your mouth dry in the morning? If it is, try looking at the posts on taping one's mouth.

birdshell · Post by **birdshell** » Sun Sep 16, 2007 9:54 pm

I cannot recall my first month or so feeling very much better. I also don't recall feeling worse. Maybe I did; maybe that is common. I just do not really know.

I do know this:
In my experience, it took a long, long time to pay back that sleep debt. It has been a year and a half and I still am not there--or at least, I hope not. The very subtle improvement wasn't the kind that I could evaluate after a month, and was only evident when I said to myself, "Gee, I can do that so much better now than I did last year."

Of course, I always recover from the flu thinking, "I'm feeling better!" And, I am. But, when I really recover a day or two more, I think, "Gee, I was REALLY more sick than I had thought during the illness."

Now that I have had my cpap study (a sleep study done with cpap after having used it) my pressure has been raised 4 points, to 13 cm H2O and I was diagnosed with PLMD. The SDB had covered up the PLMD the first time, and using CPAP meant that I had less irritation in my throat and thus needed the higher pressure.

Under the yellow lightbulb, "Our Collected Wisdom," there is more on this subject. Here is the link:

Help for New or Struggling CPAP Users

Please do your best to stay with the treatment, and consider making a call to your sleep doctor. This may be something that would be good to at least have recorded in your file.

Best wishes, and I hope that someone can help a bit more than I have tonight.

Karen

Another Guest · Post by **Another Guest** » Sun Sep 16, 2007 9:57 pm

Hi PillarPaul,

Sounds like you are trouble shooting your fatigue by checking for mask leaks etc. Have you cleaned your filter good or changed it? New meds? Different food?

I have been on CPAP over 3 years and felt like you did in the beginning...felt so good to feel so much better then...I became very fatigued and is still getting worse. I have had several things tested for which most have left me and my Dr's baffled. The SA masked other problems for me which have now been taking care of but the fatigue is still an issue. This may or may not help you but here are some of the things tested and outcomes on some.

Retitrated 3 times...straight CPAP moved up 1 cm each time. Had the MSLT which concluded Primary CNS Hypersomnia...Limited Stage 3 and no Stage 4 sleep. Blood work is all in normal range except my B12 was low yet still within the U.S. standard range. My Dr who trained for awhile in another country said that the B12 US range is really too low and not the same as most of the rest of the world. I started B12 injections 4 days ago...I think I feel about a 25% increase in alertness and energy...I hope this continues...it may be my answer. The other thing that is being shoved down my throat is every Dr saying Depression, Depression and Depression...I really do not think I am depressed....I fight them everytime over it. I can tell you that stress can screw with your B12 and many other things.

I tried Provigil for close to 2 months...it made me worse. Helped with my alertness but made it that I could not sleep if needed...just drove me nuts and hated it so i stopped. Stopping that made me feel better too.

Another thing to look into is seasonal changes/sleep disorders. I have read a little about it and coincidently I just arrived home from dinner with an elderly couple...she is from Italy and he is from Syria...and is a very, very wise old man, I am so amazed at his intelect. He started a conversation out of the blue about seasonal changes and disorders. He said that when he was younger the Pharmacist acted as the Dr, He went to him one day and mentioned feeling tired. The Pharmacist gave him an IV with calcium and B12 explaining that some people need it with the change of every season..then I brought up my B12.....and the fact that I was just reading up on seasonal disorders. Maybe worth looking into...some of the old folklore has a lot of weight.

Sorry for the length of this...I also wanted to add, I think that my SA was so bad and I felt so sick for so long that the CPAP made enough of an immediate impact that the continued fatigue went unnoticed for awhile. Also, it takes often months to pay that sleep debt. I have read elsewhere that some people swear by APAP some say they do better with straight CPAP.

I am curious if you can find an answer as it will also help me.

goose · Post by **goose** » Sun Sep 16, 2007 10:34 pm

Can't say much more than I feel your pain.....
After my titration test I felt so great and thought it would be roses when I finally got my machine.....not so!!!
It may be paying off the sleep debt - I don't know. I do know I feel better. A lot?? Not really, but I know I don't fall asleep during the day very often anymore.
It's a process. I felt like crap for a whole lot of years so I don't expect miracles.

Keep at it. Don't give up -- that's the worst thing you can do!!! Struggle through it, one night at a time. Before you know it a year will go by and you'll probably look back and tell yourself it was worth the effort......

Take care -- keep us up on how you're doing!!!!!
cheers
goose

Slinky · Post by **Slinky** » Mon Sep 17, 2007 7:50 am

Check back w/your sleep doctor about this. Its one way of finding out if he really is any good or not. If he is interested in you as a patient he will help you find the reason, if he's not you'll know enough not to waste another minute on him.

We have no way of knowing if your CPAP is fully data capable or not. It would help to exactly WHICH Respironics RemStar you have. If it is fully data capable a download of the data should provide some answers.

zorrro13 · Post by **zorrro13** » Mon Sep 17, 2007 9:16 am

Its tough and can be extremely depressing and will effect a huge part of your life and that's assuming that if it works 100%
Stick with it and believe me you will know its working if you have a power outage because the next day will seem like you been through 20 rounds with Mike Tyson!! And yes even after 12 months i still feel strange and fatigued but way better than untreated OSA. Good luck

Wulfman... · Post by **Wulfman...** » Mon Sep 17, 2007 9:33 am

ColoradoDreamer wrote:Sounds like air might be escaping from your mouth. Is your mouth dry in the morning? If it is, try looking at the posts on taping one's mouth.

Ditto.
This seems to be the number one reason that causes the users' therapy to backslide.....either early on or eventually.

Den

j.a.taylor · Post by **j.a.taylor** » Mon Sep 17, 2007 11:09 am

Paul,

My experience was much the same as yours.

I responded immediately and positively to the treatment, then woke for awhile feeling about the same.

I've worked closely with my doctor, and in my case, he agreed that I needed to switch from straight CPAP to Auto. This revealed that I needed higher pressures than my initial settings.

However, he also told me that initially I would experience up days and down days.

I've found that to be true. There are days when I can feel the positive effects of this treatment, and multiple days when it's a struggle. However, this forum has been a tremendous encouragement. Those who have been down this road awhile have a common piece of advice--stick with it.

Time and persistence are important parts of this treatment. Make use of both as you gain from the wisdom found on this forum.

amandalee · Post by **amandalee** » Mon Sep 17, 2007 11:57 am

I just have to say:

The other thing that is being shoved down my throat is every Dr saying Depression, Depression and Depression...I really do not think I am depressed....I fight them everytime over it.

I hate how doctors are so quick to blame vague symptoms like tiredness/fatigue on depression. I wasted 5 years taking a bunch of different antidepressants that never helped, before finally convincing a doctor to send me for a sleep study.
I'm sure there are many people who genuinely are depressed and can benefit from antidepressants, but it makes me so angry that many doctors seem eager to just call something "depression" and give you a pill, rather than trying to find out if it's something else.

Anyway, the Vitamin B shots sound like an interesting idea. I was telling a friend how I still feel pretty tired all the time, and she suggested I look into it.

pillarpaul · Post by **pillarpaul** » Mon Sep 17, 2007 3:10 pm

Wow! Thank you all for sharing your time and experiences - that right there buoys the spirits!

Guess I didn't realize about the different machines so I looked on the bottom and it says Respironics REMPlus w/C-Flex Dorn #1009586. Hope that's meaningful.

I do wear a chinstrap. I've caught myself still with dry mouth a couple times but proabably only once the last week.

The pressure level may be a key. My sleep study was actually done 3 years ago (I never did anything about it - long story for another day) and maybe I should have asked to be retested. I got the referral for a machine from my GP at my routine physical last month and I am considering going to a well-known ENT specialist here in the Denver area. My pressure is only 7 which I guess is low - my test showed 16 events per hour. I kept looking for what changed in the last week but it sounds like it's not always cut and dried. And as one of you mentioned, maybe I should go one night without the machine and I'll realize how sleepy I really was!

And, yes, I too have been told to eat Lexapro like candy which other than the sleep thing would be very inappropriate for me.

Anyway, you all definitely inspired me to stick with it so I'll keep reading, schedule the ENT, stay on the machine and see what happens.

Thank you.

Paul

zzzzzz!! · Post by **zzzzzz!!** » Mon Sep 17, 2007 3:34 pm

pillarpaul wrote:I do wear a chinstrap. I've caught myself still with dry mouth a couple times but proabably only once the last week.

You may want to try mouth taping for at least a few nights to see if that makes any difference; it's possible that your chin strap really isn't keeping your mouth closed.

Hang in there, and good luck getting things straightened out!

Slinky · Post by **Slinky** » Mon Sep 17, 2007 4:05 pm

Ugh! Unfortunately, the Respironics Plus w/C-Flex can only provide compliance data, if that. Some of those are stripped down w/o data card capabilities even for the compliance data.

Go back to your family doctor and ask him to script a loaner autoPAP for two months for re-titration. Pressure should probably be set at 6 cms to 20 cms of pressure. It would need to be a Respironics Auto w/C-Flex, NOT the M Series since your humidifier would not fit the M Series. Or a humidifier should be included in the loaner order.

Ooops! Just re-read your last post. Since you've only had this CPAP for one month TAKE IT BACK. Have you family doctor rewrite the script for a fully data capable CPAP or autoPAP. Hopefully the DME supplier will have a RemStar Auto w/C-Flex so that you don't need to return the integrated humidifier too. If they don't, too bad so sad for them. They will have to replace both the Plus and the humidifier.

So the script should read:

Respironics Auto w/C-Flex
Pressure 4 cms to 20 cms (actually 6 cms to 20 cms would be a bit better)
C-Flex at 2 (patient access)
Ramp - patient access (pick the period of time it usually takes you to get to sleep)
Heated humidifier
Mask of patient's choice

Mask

Additional Comments: Strictly a side sleeper