Am I normal?

lindarkk · Post by **lindarkk** » Mon May 07, 2007 2:32 pm

Well, actually that's kind of a loaded question...I've never been normal! But I've been trying to compare apnea experiences and, as usual, I seem a bit different from what I hear other talk about. I keep hearing people talk about how they were always tired, always cranky, etc., but my symptoms are not an "always". For about the last 1-1/2 years (coincidentally, the exact amount of time I have been struggling with heart failure) I have had ups and downs. I'll feel great for a few weeks and then like Superman-meets-Kryponite for a few weeks. The fatigue is just overwhelming. I figured it was due to my heart failure, but they recently found I have sleep apnea. I've been using the cpap for about 3 weeks and so far it's hard to tell what if anything it's doing for me since I'm still in the "four a.m. throw the mask on the floor cursing" phase, but I continue to experience variations in how I feel. After the second night, I woke up feeling crappy as ever, then about 3:00 in the afternoon I suddenly got a bit of energy, got up off my butt, and patched the holes in the kitchen wall. Go figure!

On bad days my brains are like runny oatmeal and I can barely put one foot in front of the other to walk to the bathroom and sometimes I also get "weepy" spells where I'll just cry at the drop of a hat. On good days I feel like it's all behind me and I'm getting better. My thinking clears and my mood is good and I feel like a normal human being. Then the cycle starts again. Is there anybody else out there who's fatigue experience was not constant? [/i]

Wulfman · Post by **Wulfman** » Mon May 07, 2007 2:38 pm

Were there any other diagnoses?

It takes awhile to become accustomed to this therapy and it's different for most of us. Try to hang in there.

Den

dsm · Post by **dsm** » Mon May 07, 2007 2:43 pm

[quote="lindarkk"]Well, actually that's kind of a loaded question...I've never been normal! But I've been trying to compare apnea experiences and, as usual, I seem a bit different from what I hear other talk about. I keep hearing people talk about how they were always tired, always cranky, etc., but my symptoms are not an "always". For about the last 1-1/2 years (coincidentally, the exact amount of time I have been struggling with heart failure) I have had ups and downs. I'll feel great for a few weeks and then like Superman-meets-Kryponite for a few weeks. The fatigue is just overwhelming. I figured it was due to my heart failure, but they recently found I have sleep apnea. I've been using the cpap for about 3 weeks and so far it's hard to tell what if anything it's doing for me since I'm still in the "four a.m. throw the mask on the floor cursing" phase, but I continue to experience variations in how I feel. After the second night, I woke up feeling crappy as ever, then about 3:00 in the afternoon I suddenly got a bit of energy, got up off my butt, and patched the holes in the kitchen wall. Go figure!

On bad days my brains are like runny oatmeal and I can barely put one foot in front of the other to walk to the bathroom and sometimes I also get "weepy" spells where I'll just cry at the drop of a hat. On good days I feel like it's all behind me and I'm getting better. My thinking clears and my mood is good and I feel like a normal human being. Then the cycle starts again. Is there anybody else out there who's fatigue experience was not constant? [/i]

Janine · Post by **Janine** » Mon May 07, 2007 2:45 pm

Me. I have felt fatigue on and off for a long time, but over the last year it really swung down, do the lows were debilitating, like you described.I would have great days and think, woohoo, whatever it was is over, then have several days not being able to do anything. The good days had become fewer and I went in and asked to be tested. Over that last 4 months, I have had serious brain mush.

I started cpap about 5 weeks ago, I guess, and after changing to cflex, and then an apap with cflex, I am actually not taking the mask over around 4am. That took a long while. I have had a total of 6 full nights, and have started to think better and not need to sleep in the day. I also experienced the couple of hours of energy gradually. They seem to be turning into half days, and this weekend I had company and was great for 3 days of socializing and making jewelry. I am tired today, but a normal tired, not a brain fog, immovable tired.

So you sound normal to me, or at least I sound like you!

lindarkk · Post by **lindarkk** » Mon May 07, 2007 2:47 pm

Wow, that was fast! Yes, I had a sleep study. They said between my apneas and hypopneas I was waking up an average of 26 times/hr. I use a plain old cpap at 10cm. I was diagnosed with CHF last March after 6 months of runaround from multiple doctors, and I'm on a nice pharmaceutical cocktail for that. I always figured my ups and downs were heart related until I got the apnea diagnosis. I was just wondering if there were non-heart sleep apnea people who had any similar experiences. I'm still trying to figure out where the foundation of the fluctuations lies.

CollegeGirl · Post by **CollegeGirl** » Mon May 07, 2007 3:00 pm

Linda,
We all have nights where we wake up feeling great, and others not so great. The vast differences between those peaks and valleys, however, should dissipate after you've been on treatment a while. It's impossible to tell you anything about why you're feeling the way you're feeling, though, until you're keeping your mask on all night. It's especially important, as someone with heart issues, that you learn to do that. Many folks have found that the reason for their mask removal is something external - the mask isn't comfortable, the pressure isn't high enough so they feel suffocated, or they're suffering from aerophagia (bloating, gas, etc). If any of these could apply to you, you might want to see what can be done about it. There are so many kinds of masks out there - you just have to find the right one, if that's your issue. Good luck, and welcome to the club.

Wulfman · Post by **Wulfman** » Mon May 07, 2007 3:03 pm

lindarkk wrote:Wow, that was fast! Yes, I had a sleep study. They said between my apneas and hypopneas I was waking up an average of 26 times/hr. I use a plain old cpap at 10cm. I was diagnosed with CHF last March after 6 months of runaround from multiple doctors, and I'm on a nice pharmaceutical cocktail for that. I always figured my ups and downs were heart related until I got the apnea diagnosis. I was just wondering if there were non-heart sleep apnea people who had any similar experiences. I'm still trying to figure out where the foundation of the fluctuations lies.

Probably a little TOO fast..... Sorry.
I kept re-reading your post and was finding some of the answers I was going to ask, so I had to keep editing my post..... Some days, MY brain is like runny oatmeal....

Again, you've been on this therapy for such a short time and for some of us it can take months (and months) to feel some sort of normalcy.

Try to be patient.

Den

Janine · Post by **Janine** » Mon May 07, 2007 3:05 pm

LOL, you are surrounded, and we are going to help you, darn it!!!

dsm · Post by **dsm** » Mon May 07, 2007 5:03 pm

Linda,

Just to help explain how this ups & downs business can affect us.

I had been exercising regularly some weeks back but a month ago we had a spell of wet weather & I stopped. All seemed ok but just started to get a bit foggy lately. So I started exercising again & was surprised at how difficult it seemed to get back into it. Even just a portion of what I had been doing.

Yesterday I had decided that I may need to adjust my pressures. I thought I had them set to my preferred optimal 10/13 (I have a Bilevel) & decided I would go to 10/14, a setting I have used for quite a while.

To my surprise I discovered I had the machine set to 9/12 - that to me explained why the decline was occurring. Then I recalled that 2 weeks I was going to try a nasal prongs mask & had set my pressure settings down 1 CMS as with the prongs, the normal pressure seems too high. I tried the mask for an hour & gave up but forgot to restore my normal settings & thus over the past week & a half have felt a slow slide down.

Last night I set the machine to 10/14 & had a great nights sleep & am certainly feeling more energetic.

There really does seem to be a need to fine tune the therapy until we hit our own 'sweet spot' then that seems to hold good for quite a while but can be affected by things like exercise etc:. Once I am back to a solid program of exercise again I will probably revert to 10/13 again.

The ideal I guess, is to get a mask you are happy with, then fine tune the pressure that seems to produce the most consistent results & work to that.

Good luck

DSM

littlemo · Post by **littlemo** » Mon May 07, 2007 6:25 pm

Hi Linda, Just as a tip. Instead of removing the mask. Turn the machine of and then start it again pressing the ramp button, this should help you get over this period.

mo

Am I normal?

Am I normal?

Re: Am I normal?

hey Wulfman!

Re: hey Wulfman!