Using cpap but still tired

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Using cpap but still tired

Postby TerriG1221 » Thu Dec 18, 2008 7:19 pm

I was diagnosed with sleep apnea and am using the cpap machine.
My problem is that I still have profound fatigue, even though the tests
show the cpap is preventing the apneas.

My strange story is that the only time I get refreshing sleep and wake
up feeling good is when I get my weight down to 135. Right now I'm
at 165 and wake up exhausted with no energy at all. I keep struggling
to get my weight back down, but it's hard because I have no energy
to exercise. I've gotten my weight down to 135 twice, and felt good
but both times gained the weight back.

I don't know why I don't wake up refreshed now that I'm using the cpap
every night. It's so hard to lose weight because I have no energy to do anything.

Anybody have any suggestions? Thanks.



Therapeutic polysomnography on 9/24/08.
Sleep architecture was divided into 64% wakefulness, 3.3% stage one,
70.4% stage two, 12.3% stage 3 and 14.1% REM.

Original sleep study showed 129 hypopneas, 7 apneas in 5 hours sleep.
average of 27 events per hour.

With the full face mask and heated humidifier on at 11, there were
zero apnea events.

There were 290 limb movements for a movement index of 50 events
per hour - 33 were associated with arousal for an arousal index of 6 events per
hour.

Resmed REMstar plus machine
Mirage Quattro full face mask

(I do have a deviated septum, large tonsils and a narrow arch.
I also have lots of soft tissue, but I do not want to have any surgery
at this time)
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With you

Postby sleepy23 » Thu Dec 18, 2008 11:58 pm

You are not alone!!! I have been using my CPAP for 3 years and I feel like you do. I keep gaining weight because I do not have the energy to excercise. I have a hard time driving and working. It is a struggle but I am going back FINALLY to the doctor tomorrow to see if there is something they missed. Good luck to you, and know there are others out there with the same problems. I wish I could help you because I know how you feel!!!!
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Postby lynn543 » Fri Dec 19, 2008 12:07 am

to terri G
welcome :-)
you may need a higher pressure setting for the extra weight as we get fatter on the inside also

a common cause of no benefits is mouth breathing thru a nose only mask, this causes a very dry mouth and tongue, regardless of any humidifier, it stops all CPAP benefits
you might also have depression which can cause fatigue
resmed S6 lightweight, respironics comfort gell mask using CPAP since 1995, no humidifier
during my many years of undiagnosed severe fatigue, no doctor ever asked me if I snored
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Postby TerriG1221 » Fri Dec 19, 2008 8:07 pm

I have decided to try a Silent Nite oral appliance
in January, in hopes that it opens my airway up more.
I will use it in addition to the cpap machine.

Maybe it will help, even if it's just a little bit.
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Postby Mrs Rip Van Winkle » Fri Dec 19, 2008 9:08 pm

Terri...are your leg movements being treated...did any show up during the titration study? Often leg movements are caused by our efforts to try and breath during an event..the Dr assume xPAP therapy will decrease them..other times the PLMD is a neurological condition which needs to be treated on its' own with meds.

This could be causing arousals therefore affecting your sleep stages...making you still fatigued. PLMD is often treated with Mirapex or Requip..which are Parkinson's meds.
I'm only a sufferer, not a medical pro. What I post are my thoughts as a sufferer, not that of the ASAA. As a moderator on these forums I oversee the posting rules. This is the internet, always discuss what you read with your medical team.
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Postby ArthurAnxious » Sun Dec 21, 2008 12:13 pm

I am still tired often, still don;t know what it is like to wake up feeling really refreshed. Sometimes I thiunk that I am better first thing in the mornings than before diagnosis, other times wonder if it is all in my head. Not sure what is real and what is perception. But don;t give up, it could be that CPAP is helping us be healthier and avoid damaging the heart and blood pressure control, even if we don't feel any better. So I think we should just get on with the treatment. I don;t even believe sleep doctors and clinics should tell people they will feel an improvement since that sets us up for disappointment.
Arthur
Sleeping with a curvaceous blonde autoPAP (Resmed autoset). Hope springs eternal.....
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new user of cpap but still sleepy.....

Postby ssharris » Thu Dec 25, 2008 2:31 pm

Hi, I have only begun using cpap four weeks ago. While I feel better awakening in the morning than before therapy, I do not feel refreshed. And, I still awaken many times at night and have that drowsey feeling during the day. Is this common when first beginning the therapy? Does it take time to get your body acclimated to cpap? sleepy steve--
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Postby TerriG1221 » Thu Dec 25, 2008 10:27 pm

Some people feel better with the cpap right away, and others feel
better after months. I have noticed with mine, that things have improved
a little bit after one month.

While the doctors seem to be able to tell us if we stop our apneas, they
don't seem to be able to tell us if we're getting the proper type of sleep
and enough of the stages 3&4 and good REM sleep. I've had several
doctors tell me different things. Steve, can you find out from a sleep study
what type of sleep you're getting and also you need to find out if there are
any leaks/problems with your cpap use.

Good luck.
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Postby Vicki » Fri Dec 26, 2008 1:11 am

Terri,

Referring back to what Mrs. RVW said, what did your sleep study say about limb movements? My CPAP was working fine, but I had started becoming fatigued and a sleep study showed I had developed PLMD which disrupts your sleep as much as OSA.

Vicki
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Postby TerriG1221 » Fri Dec 26, 2008 2:33 am

Vicki,
This is what my sleep study said about limb movements:
There were 290 limb movements for a movement index of 50 events
per hour - 33 were associated with arousal for an arousal index of 6 events per
hour.

I don't like taking medications because for me they always seem to have
so many side effects I don't want. My doctor didn't seem to think the PLMD
was a problem.
What do you do for PLMD?

I can't find a single doctor to explain to me, why, when my weight goes
down, I finally get the good, restorative sleep but when I gain the weight
back, I'm fatigued again. The cpap is supposed to be stopping the apneas,
and I had it tested and my apnea count is almost zero, but with the cpap
I still have profound fatigue.

I had braces earlier in my life, and my upper teeth were brought forward,
which totally changed my bite, so maybe that has some effect. That, in
addition to the fact that I have large tonsils, my tongue rolls back, and I seem
to have excessive soft tissue.

Since the weight loss of the excessive soft throat tissue helped me so immensely,
and I felt like my old energetic self again, my plan is to try to lose weight, but also
to try the oral appliances to open up my throat.

The dentist who specializes in oral appliances charges $1950 which is too high,
so my dentist said he could make me a Silent Nite for $500.00. I plan to use
it with the cpap.

Terri
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Postby Caprock » Sat Dec 27, 2008 2:49 pm

Terri, maybe this is a good time to think about having your tonsils removed. A friend of mine(on cpap) is having her's removed to open her airway. It worth asking about. Good luck
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On cpap 10 years and counting
can't sleep without Cpap!
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Postby TerriG1221 » Sat Dec 27, 2008 5:02 pm

That is a great idea to have my tonsils out. I went to an ENT who
wasn't very encouraging that it would make much difference, and
also he wanted to perform the whole UP3 surgery but I told him no
on that. I think I'll go to a different ENT to discuss just getting the
tonsils out. Thanks.
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using cpap and still tired

Postby nellie45 » Sun Dec 28, 2008 1:14 am

First time writing guys . Was still tired and been on cpap for 2 years. They redid a sleep study and upped my pressure. But I was still tired. Drs decide to run more tests. Since last Dec. I put on weight and was very tired. Come to find out cause of the higher weight I have diabetes.Which makes you very tired.
So TerriG1221 when you weigh more you might have diabetes. Please get tested, when you weigh more.. Also they have found my liver tests up higher and have found my liver is fatty with swelling. I don't know yet if there is scarring. But that also makes you very tired.
Right now with the upped pressure and treating the diabetes I have had some improvement on being tired. At least I am sleeping 7 hours straight . Feels so good to sleep and wake up some what usefull. =D>
Good luck
Nellie
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Postby Vicki » Sun Dec 28, 2008 3:47 am

Terri,

If you have changed weight, either going up or down, then your pressure has to be retitrated. A 20 pound weight loss made my pressure go from 14 to 9. How your needs change with weight changes is individual, sometimes people need a higher pressure with weight loss. But the bottom line is that a weight change as great as you have had is going to change your pressure requirments.

If you doc. said your PLMD isn't a problem, then don't worry about it. Anemia exacerbates PLMD and RLS so make sure you are not anemic. I take Requip for my PLMD/RLS, Mirapex is another common drug used. They are both very low dose anti-Parkinson's meds.

Vicki
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.
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Postby sypark » Sun Dec 28, 2008 9:57 am

TerriG1221,

I can't find a single doctor to explain to me, why, when my weight goes
down, I finally get the good, restorative sleep but when I gain the weight
back, I'm fatigued again. The cpap is supposed to be stopping the apneas,
and I had it tested and my apnea count is almost zero, but with the cpap
I still have profound fatigue.

I had braces earlier in my life, and my upper teeth were brought forward,
which totally changed my bite, so maybe that has some effect. That, in
addition to the fact that I have large tonsils, my tongue rolls back, and I seem
to have excessive soft tissue.


Your sleep breathing problem started off with an anatomic problem—your jaws didn't grow enough. That's why you had dental crowding and braces. The braces may have straightened your teeth, but didn't enlarge the jaw. If the total volume in your mouth is smaller than normal, then your tongue takes up too much space, and is more susceptible to falling back when on your back and especially in deep sleep. The reason for your large tonsils is because of inflammation due to your apneas, which cause a constant vacuuming of your stomach juices into your throat, causing any lymphoid tissue (tonsils) to stay swollen. This is why you can't normally sleep on your back. Any soft tissue enlargement due to swelling (tonsils) or weight gain (fat) will narrow the airway even more, aggravating the vicious cycle. This process probably contributed to your jaws not enlarging properly when you were a young child. This is also why it's important to keep the weight down. Also, I agree with Vicki that any degree of significant weight fluctuations will change the therapeutic CPAP pressure.

This is why a tonsillectomy or UPPP+tonsillectomy alone will not cure you of your apnea. It may help you to lower your CPAP pressure, however. If you wanted definitive surgical treatment, you either have to enlarge your jaws significantly, or make your tongue smaller (in addition to the UPPP/tonsil—that's a long discussion in itself with many pros and cons). Using a mandibular advancement device in addition to CPAP is a good idea. Dr. Lawler, a dentist who posts here often, recommends this form of therapy for many patients.

One possible explanation for your continued fatigue despite having "normal" apnea scores is that a sleep study only measures breathing stoppages greater than 10 seconds. If you stop breathing 20 times every hour but wake up after 1-5 seconds, then that doesn't get counted at all. Along with the fact that your CPAP pressure may be inappropriate due to your weight changes, the CPAP itself may be waking you up. People with mild obstructive sleep apnea and upper airway resistance syndrome (what you also have) have very sensitive nervous systems and have trouble tolerating CPAP. It can be a double-edged sword.

Your best bet is to try the dental device, and keep the weight down. Also if you have any degree of nasal congestion, you should take care of that as well. Hope this helps.
Steven Y. Park, M.D.
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