Realistic Recovery Time Question

[FJB]

Hi All,

I've been through fits with my CPAP.

I've been on more effective therapy with a full-face mask now for about 10 days. My apnea was severe, and I suffered devastating exhaustion.

I am feeling better, but not great.

Does anyone have any direct experience like mine? I felt the best after 5 days, then kind of hit a plateau, and it seems that I am improving again.

The word is that recovery can take weeks to months. I'm not the patient type.

Thanks for any input!

Joe

[littlebaddow]

Hi Joe and welcome.
You pretty much hit the nail on the head - recovery can take weeks or months and seems to vary quite dramatically.
A few people seem to get an instant "eureka" effect and feel great immediately. For the vast majority, it takes longer and the effects are gradual.
It's a good sign that you are feeling better after just a few days and it's not uncommon to hit a plateau.
Please don't get downhearted - you are making good progress and, whether it takes days, weeks or months, your perseverence will pay off.
Good luck and do keep asking questions - there's a lot of experience and support here.

[littlebaddow]

I'm not the patient type.

.. and neither was I, but I've found that to be one of the things that has improved with successful treatment

[FJB]

I appreciate the input. I've had apnea for more than 20 years but never the obstructive part. I didn't think that it impacted me much until now.

Maybe it did, hmm.....

I am getting 4-5 hrs machine time typically twice a day now. It's hard to snooze with that blasted contraption lashed to my snout. (It helps that I have no other alternative.)

I remain hopeful that this therapy will be effective. Otherwise, I'm just shafted.

[needingu]

You have just ask the question I have been afraid to ask..For severe apnea.
Can someone with this stage give us some benchmarks.. I really don't expect the apnea to go away. I'm sure it is different for everyone. The bouts of tightness in the chest and at times harder to breath during the day-is this somewhat correctable..I use he Cpap every night from 9-6. Complete compliance..Have been on machine 4 1/2 months.
Do you have any sage advice.?


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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

[Snoozin' Bluezzz]

I'm not the patient type.

Time to learn, what choice do you have? Quit? That will make things better won't it?

I don't mean to be mean for I can be the impatient or easily frustrated type as well so I was talking to myself as much as you.

Over time, particularly if you find the interface that best suits you, the interface will become less and less intrusive. This will become more profound as you feel better especially if you undersand that the improvement is because of your therapy. I have had some blips in my 5 months but there is definitely improvement and I think I took a big step today with a brand new Remstar Auto with C-Flex.

I am happy to put on my Swift with my mouth sealed and go to bed because, as troubling and frustrating as it can be at times, it is worlds better than pre-xPAP.

Good Luck

David

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CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX, swift, auto

[brasshopper]

At some point, you have to consider the possibility of going back to the sleep doctor and saying, "When I got this, I felt like this and that and the other thing." "Now I feel almost the same way, except for A and B."

I have been x% compliant. My compliance has taken this pattern.

"It has been 1- 2-3-6 months." "Please help me understand."

Do I need telemetry? Oximetry? Another sleep study? An APAP? A recording APAP so that the therapy can be evaluated? A Bipap? A new mask? Different therapy? Nighttime O2? Different therapy?

Is there simply nothing that can be done?

One point I'd like to make is that even though not all of your symptoms may be relieved, there are so many things that are affected by apnea that you really want to stick with the therapy even though it may not be relieving all of your symptoms.

It is reasonable for you to be asking your questions here - the people here are a wealth of knowledge who may have a tip for you that will improve your compliance. I try to add to that myself.

But your doctor has to be part of your therapy. When you don't make your doctor part of your therapy, he learns nothing, and can't help others. Remember those old comments about practice? If he hit a wrong note with you, you should tell him or her what it was.

[WillCunningham]

Howdy,

I had very similar concerns when I first started my CPAP treatment, I wish I had discovered this forum then. I was in extreamely bad shape when I finally received my CPAP, I was passing out at work against my will. I was unable to complete simple tasks, I could not stay awake to watch TV or play video games anymore. I had zero energy and always felt like my body was encased in lead. When I walked upstairs it felt like my feet had cement shoes. I needed sugar and caffiene in a constant stream just to avoid passing out unexpectedly.

I did not have that eureka moment untill 2-3 weeks after I started using my CPAP. I noticed little things first. I was very used to waking up feeling just as tired as when I went to bed. Waking up always involved a mental battle to convince myself to get the day started, if I did not have to go to work I could have easily gone back to sleep. I don't remember exactly when I noticed, but it was soon after I got my CPAP. The first thing I made a mental note of was that I woke up and actually felt refreshed. It was very easy for me to get out of bed and as the week went on I found myself waking up naturally after about 7hrs of sleep. Prior to that I always woke up a splt second before my alarm clock was about to start blairing.

I did not feel a huge difference and I was concerned that the CPAP was not going to solve my problems. I adjusted the mask and tried to find better sleeping positions. I was also having lots of trouble with how sore I was in the morning. I have a 17cm of pressure perscription which is a gale force wind, breathing out against that requires an awful lot of effort. When I first got started my lungs had no real need to be strong at breathing out, the weight of my chest made that part easy. With the pressure I suddenly found the breathing out muscles getting a good workout, leading to the soreness each morning. I think that might have contributed to my nervousness about how the treatment was going. I also had some problems with my mask coming loose and not staying on. I eventually tightned the straps till the mask was uncofortable but did not have any leaks.

I did notice that I was not passing out at work anymore after a few days. I still felt awful and was still tired, but it was an improvement almost from the start. The real "wow" moment for me came after about 2-3 weeks. I had mentioned that "cement shoe", or "encased in lead" feeling I had been living with every day for years....well I went upstairs to go to bed and I noticed two things all at once. The first was that I had just bounded up the stairs and had not even noticed it, none of those bone weary feelings involved. Then I realized that although it was time to go to bed, I did not feel tired at all. I could go to sleep, but I had been so used to fighting to stay awake that it was almost inconcievable to have bed time roll around and not just pass out instantly.

After that I stoped drinking mountain dew. I had to break out the excedrin to avoid the caffiene headaches, but after a few days I was caffiene free. That was what really convinced me. I no longer needed caffiene to stay awake, that was a major thing for me as it played such a HUGE role in my life for years.

Stick with it, the incremental changes day to day may be very hard to notice. I feel energetic and great now and I can't even imagine trying to sleep without my CPAP machine. Brasshopper is right though, the real trick is deciding when to go back to the sleep doctor if you aren't seeing improvements. I don't really know what to suggest there. I had lots of anxiety that my mask was leaking and wasn't a good fit. I had planned to give it a month and if I did not notice an improvment, speak to my doctor. I don't know if that is helpful at all, but I remember how nerve wracking it can be waiting to notice a difference. Good Luck!

[littlebaddow]

Hi Will
Welcome and thanks for sharing your story. Doesn't it feel just great when you first realise this treatment can work
Let's hope it gives other newcomers some hope and reassurance when they are struggling to adapt to the treatment. Please do continue to tell us how you are progressing.
That really is some pressure you're coping with. Have you discussed with your sleep doc the possibility of getting an auto or bi machine, or a straight remstar cpap with c-flex to help with the exhalation?

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CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX, CPAP, auto

[birdshell]

At some point, you have to consider the possibility of going back to the sleep doctor and saying, "When I got this, I felt like this and that and the other thing." "Now I feel almost the same way, except for A and B."

I have been x% compliant. My compliance has taken this pattern.

"It has been 1- 2-3-6 months." "Please help me understand."

Do I need telemetry? Oximetry? Another sleep study? An APAP? A recording APAP so that the therapy can be evaluated? A Bipap? A new mask? Different therapy? Nighttime O2? Different therapy?

Is there simply nothing that can be done?....
(snipped out a part for length)

But your doctor has to be part of your therapy. When you don't make your doctor part of your therapy, he learns nothing, and can't help others. Remember those old comments about practice? If he hit a wrong note with you, you should tell him or her what it was.

Brasshopper, you really seem to be able to cut right to the heart of any issue. Thanks for such well-considered advice.

I cut out a part of the quoted text to keep the length down, and changed the text color for a very important part, IMHO. That is, give your doctor your best effort at a specific report of your symptoms. Then the doc is getting the best observations and can apply his/her knowledge. Your experience will become part of her/his experience, and applied to another patient down the road.

I learned that it was wise to keep a list of my many medications on my computer word processor. When I had to see a different doctor at a clinic every week, it was much easier than trying to remember the meds and dosages--more than 3, and I'm bound to leave something out.

Now, I just keep a medical history, list of current medications (by whom they are prescribed), and any symptoms (divided by specialist) for my doctors. I also have a list of my doctors' addresses, telephone numbers, fax numbers, and anything else. I save them by the date so that I have a record of past versions, and backup the files on a CD, too.

Symptoms of your xPAP therapy are easy to keep if you are coming onto the forum--just add them to your word processor file while signing on or off. In this way, your good record keeping will convince your doctor that you are really telling him/her everything important. Then she/he will truly learn that you are a patient worthy of superior treatment.

If you do not receive that kind of treatment, then you will have a documented history to present to the next doctor. Maybe the next one will learn enough from you to give you some high-quality and very effective treatment.

BTW, I have had more than one doctor gush enthusiasm about my info, saying, "I wish all my patients would do this!" Little do they know, it is my poor aging and pre-CPAP memory that inspired it.

[LamuzNick]

Quite right! I like your idea. I suggest to take out for the general discussion.