Think CPAP is working, but feel even worse

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Desperate_in_DM
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Think CPAP is working, but feel even worse

Post by Desperate_in_DM » Fri Aug 13, 2010 8:11 am

I've only been using my CPAP for nine days. I don't have all the data from my sleep study performed on 8/2/10 as I haven't met with my doctor yet. But the clinic called the next day stating that my AHI during the study was 27 and my oxygenation level during the study was 85%. They wanted me to start on a CPAP immediately.

First night I used the machine the machine said my AHI was 14.8. Last night the machine said my AHI was 0.3. My AHI has gone down every night I've used the machine. However, I am feeling worse and worse. The last two mornings I wake up with headaches so bad that I have intense nausea (vomited yesterday morning) and muscle aches/joint pain. I am having trouble typing this without falling asleep. I have been prescribed Provigil for excessive daytime tiredness, but it doesn't seem to help anymore.

So...wanted to ask those who have been on a CPAP/BiPAP machine long-term, how long do you think it will take for me to finally be symptom-free and feel rested? It seems I'm improving based on the machine's results, but physically nothing has changed and has gotten worse. I'm starting to feel quite desperate!

davecpap
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Re: Think CPAP is working, but feel even worse

Post by davecpap » Fri Aug 13, 2010 9:18 am

I too had a hard time when I started CPAP therapy about a six weeks ago - I too felt WORSE after beginning treatment - fighting to stay awake, depressed, anxious, etc... but it did get better! Six weeks in and glad I stuck with it - I wouldn't have if not for the encouragement I found on this board. Keep at it - once your body gets used to it, you'll have more energy - it encouraged me to start watching my diet and exercising, which together with the CPAP is really starting to improve my life.

Here are some post to give you an idea how I was feeling just a couple weeks ago:

viewtopic.php?f=1&t=53350
viewtopic.php?f=1&t=53622

And now how I'm feeling more recently:

viewtopic.php?f=1&t=54041&p=503497#p503497

It did take some tweaking too - exchanged my mask, tried a chin strap, went up 1cm of pressure.. but I think the biggest factor was just sticking it out while my body got used to it. I went back to my sleep doctor and he told me some folks don't get over the excessive daytime sleepiness, and that the O2 levels were what was important in terms of heart disease/stroke/all that fun stuff... He offered me Provigil. I'm pill-averse, especially anything remotely stimulating as I worry it'll aggravate my anxiety. So I went and saw a second sleep specialist - he told me the same thing, also said Provigil.

I started looking for Provigil alternatives, and I found this article:

http://www.webmd.com/diet/news/20061103 ... sts-energy

It cited ONE study (I know, not very definitive...) and said "The average effect [of exercise] was greater than the improvement from using stimulant medications, including ones used for attention deficit hyperactivity disorder (ADHD) and narcolepsy". So I started going to the gym to ride an exercise bike just 15 mins. I'll be honest, I was so tired I was nodding off on the way there. However, on the way back - no problems! Just 15 mins makes a big difference for me. I've been doing 15 mins on the bike every day for 2 weeks now and plan on slowly increasing it. One of the threads I linked to above mentions other lifestyle changes I made that helped - dealing with my depression, staying hydrated, dietary changes - everything helped a little bit toward dealing with my sleepiness. But above all, sticking with the CPAP and riding out the period of feeling worse!

Still, I would keep in touch with your primary care physician and sleep clinicians in the event there is something else going on... lots of problems cause fatigue, many of them easily treatable.

sister
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Re: Think CPAP is working, but feel even worse

Post by sister » Fri Aug 13, 2010 10:36 am

Desperate_in_DM wrote:I've only been using my CPAP for nine days. I don't have all the data from my sleep study performed on 8/2/10 as I haven't met with my doctor yet. But the clinic called the next day stating that my AHI during the study was 27 and my oxygenation level during the study was 85%. They wanted me to start on a CPAP immediately.

First night I used the machine the machine said my AHI was 14.8. Last night the machine said my AHI was 0.3. My AHI has gone down every night I've used the machine. However, I am feeling worse and worse. The last two mornings I wake up with headaches so bad that I have intense nausea (vomited yesterday morning) and muscle aches/joint pain. I am having trouble typing this without falling asleep. I have been prescribed Provigil for excessive daytime tiredness, but it doesn't seem to help anymore.

So...wanted to ask those who have been on a CPAP/BiPAP machine long-term, how long do you think it will take for me to finally be symptom-free and feel rested? It seems I'm improving based on the machine's results, but physically nothing has changed and has gotten worse. I'm starting to feel quite desperate!
hi, it will get better,i wanted to give up many times but have finally slept good for the last 2 nights and i feel great1

Janknitz
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Re: Think CPAP is working, but feel even worse

Post by Janknitz » Fri Aug 13, 2010 10:56 am

The last two mornings I wake up with headaches so bad that I have intense nausea (vomited yesterday morning) and muscle aches/joint pain.
Could your humidifier be turned up too high? I get really bad sinus headaches when mine is, and that's pretty much the same for me as others describe for migraine headaches.

I also had a lot of skeletal aches and pains at first because I was trying to sleep in very awkward positions without moving during the night in order to keep the mask from leaking.
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BlackSpinner
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Re: Think CPAP is working, but feel even worse

Post by BlackSpinner » Fri Aug 13, 2010 11:24 am

Desperate_in_DM wrote: First night I used the machine the machine said my AHI was 14.8. Last night the machine said my AHI was 0.3. My AHI has gone down every night I've used the machine. However, I am feeling worse and worse. The last two mornings I wake up with headaches so bad that I have intense nausea (vomited yesterday morning) and muscle aches/joint pain. I am having trouble typing this without falling asleep. I have been prescribed Provigil for excessive daytime tiredness, but it doesn't seem to help anymore.
My joints in my neck and hip ached the first couple of weeks because for the first time in many years I wasn't waking up and moving about while I "slept" - I would wake up in exactly the same position as I fell aspleep in. I got a better pillow and mattress pad and that solved that. The nausea might be due to swallowing air.

Your mind might not be allowing you to sleep deeply right now with that thing on your face, my dr said it can take up to a month for your mind to trust that you won't die with it on your face.

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Desperate_in_DM
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Re: Think CPAP is working, but feel even worse

Post by Desperate_in_DM » Fri Aug 13, 2010 1:08 pm

My humidifier was set by the RT at 2. I was getting 3-4 nosebleeds a day for about 6 days. In the last 3 days I have been setting the humidifier at 3 and no more nosebleeds. I always have headaches in the morning, but the last 2, maybe 3 days the morning headaches have been a lot worse.

For some reason today the Provigil isn't helping one bit. I fell asleep driving my tot home from the pediatrician. I'm just feeling like I won't be able to last long enough for the machine to make me feel better.

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BlackSpinner
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Re: Think CPAP is working, but feel even worse

Post by BlackSpinner » Fri Aug 13, 2010 1:55 pm

You need to tap on everyone who might owe you at this time to put yourself first.
If the kids need to go somewhere get someone else to do it. Get family to take them off your hands.

This is like in the airplane - your masks goes on first, then everyone elses. If you don't get this working they will suffer. You must put your self first right now to get this working.

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Machine: PR System One REMStar 60 Series Auto CPAP Machine
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71. The lame can ride on horseback, the one-handed drive cattle. The deaf, fight and be useful. To be blind is better than to be burnt on the pyre. No one gets good from a corpse. The Havamal

Janknitz
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Re: Think CPAP is working, but feel even worse

Post by Janknitz » Fri Aug 13, 2010 2:00 pm

Deseparate,

You must STOP DRIVING until this gets better!!!!!! You are risking not only your own life and your child's life, but other individuals on the road. You can bet that if you get into an accident and hurt or G-d forbid kill someone your medical records will be used as evidence to sue you and your family for every penny--and they will probably win. Cabs and buses are much less expensive than lawsuits and have no emotional toll.

Call your sleep doctor and tell him or her about the problems you are having. They cannot help you unless you let them know what's going on.
First night I used the machine the machine said my AHI was 14.8. Last night the machine said my AHI was 0.3.
You cannot get enough detailed information from the screen to tell what's really going on. You should purchase the Encore Viewer software, available for around $100 from our hosts, CPAP.com. This will help everyone (you, your doctor, and helpful people here) see what might be happening that can improve your therapy.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

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BlackSpinner
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Re: Think CPAP is working, but feel even worse

Post by BlackSpinner » Fri Aug 13, 2010 2:58 pm

You must STOP DRIVING until this gets better!!!!!!
Yes the only reason at this point to be behind the wheel is if you think the ambulance is not going to get there faster - very unlikely.

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71. The lame can ride on horseback, the one-handed drive cattle. The deaf, fight and be useful. To be blind is better than to be burnt on the pyre. No one gets good from a corpse. The Havamal

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Emilia
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Re: Think CPAP is working, but feel even worse

Post by Emilia » Fri Aug 13, 2010 3:22 pm

I posted this on a thread earlier today: viewtopic/t54545/Fell-Asleep-at-Wheelon ... woman.html
Yes, that blue eyed beauty is my cat! He is a seal point, bi-color Ragdoll. I adopted him in '08 from folks who could no longer care for him. He is a joy and makes me smile each and every day.

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tattooyu
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Re: Think CPAP is working, but feel even worse

Post by tattooyu » Fri Aug 13, 2010 3:36 pm

All of the above. After my first night, I felt an immediate improvement, but then I started to feel worse until I got near the ubiquitous "hump" of the adjustment period (2-3 months for me). The aches and pains go away. You may be having some inner ear/sinus issues from the air being pumped into them by the CPAP machine. You might want to bring that up to your doctor, since it sounds like have sensitive sinuses with the nose bleeds and all.
Sleep well and live better!

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Re: Think CPAP is working, but feel even worse

Post by cflame1 » Fri Aug 13, 2010 3:46 pm

Desparate... I sent you a PM... did you get it?

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Re: Think CPAP is working, but feel even worse

Post by imtired » Sat Aug 14, 2010 4:06 am

Desperate_in_DM wrote:My humidifier was set by the RT at 2. I was getting 3-4 nosebleeds a day for about 6 days. In the last 3 days I have been setting the humidifier at 3 and no more nosebleeds. I always have headaches in the morning, but the last 2, maybe 3 days the morning headaches have been a lot worse.

For some reason today the Provigil isn't helping one bit. I fell asleep driving my tot home from the pediatrician. I'm just feeling like I won't be able to last long enough for the machine to make me feel better.
I was getting those nosebleeds almost daily since i was a kid, before cpap. the first few weeks i had my machine i needed high humidity so i wouldnt get nosebleeds during the day, but after about a month i was able to turn it back down to 2. at the lower humidity most of my headaches went away.

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