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CPAP has stopped helping
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An_206867 posted:
I was diagnosed with mild sleep apnea about 4 years ago after probably having it for several years before that. I began CPAP usage with a pressure setting of 8, and noticed an immediate improvement. All of my sleepiness and other typical symptoms were gone. This worked for approximately 2 years then all of the sleepiness and tiredness began coming back just like before. I had another sleep study done which showed my sleep apnea had increased to moderate to severe. I then had two titration studies done over a period of about two months, because increases in pressure settings were making no noticeable difference in my EDS. I was able to sleep with settings as high as 18 but felt no improvement. I then had a TAP made. After a take home sleep study, my doctor says my sleep apnea has improved to only mild again, but I still experience EDS. I've tried my CPAP with the TAP also and no improvement. I've been to an ENT who would gladly perform a UPPP, but I'm skeptical of its effectiveness.

I am 43 years old, 5' 11" and 180lbs. Not your typical sleep apnea patient. Any information or suggestions would be appreciated.
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Byroney_WebMD_Staff responded:
Dear Anon_13891,

Have you tried getting a second opinion? Perhaps a fresh set of eyes on the problem might help with a solution. Here's a video on a Jaw Adjuster for sleep apnea. Maybe it's worth considering?

Hopefully Dr. Husain will offer a reply.

Yours in health,

Byroney
 
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Byroney_WebMD_Staff responded:
Also, here's an article I just posted on Mouth Devices for Sleep Apnea that may help.
 
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DUKE MEDICINE
Aatif M Husain, MD responded:
Anon_13891,

Your situation is not unusual. Over time CPAP may become less effective. The usual reasons for this are weight gain, lack of CPAP mask to fit appropriately, use of certain medications that may worsen sleep apnea or cause daytime sleepiness, and other medical illnesses.

Once a new pressure has been found to adequately treat all the apneas and the mask is fitting well, the symptoms usually resolve. If they do not, physicians will look for other reasons for daytime sleepiness such as medications and other medical problems. Further testing with a multiple sleep latency test (MSLT) may be needed. Lastly, if sleepiness is persistent and apnea is adequately treated with CPAP, medications may be considered to treat the sleepiness in addition to the CPAP. This is typically a last case resort.

Surgery and dental appliances are options. However, discussing the utility of surgery with your doctor is very important. Not everyone gets better with surgery. Typically both of these options are used if you cannot tolerate/use CPAP, rather than those who can use CPAP but are not getting better.

Hope this helps.

Aatif Husain
 
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anothermarkg replied to Byroney_WebMD_Staff's response:
Thanks for the response Byroney. I have already purchased a TAP, Thornton Adjustable Positioner, oral appliance. My doctor then had me do an at home sleep study with a machine he sent me home with. I forget the exact name of it, but it hooked to two fingers and my throat. He says the results show my OSA is resolved. I assume this means I am now within the normal range. My results showed no snoring, O2 above 92%, RDI 11, AHI 7 and REM AHI 13; however, I do not feel any different physically. I may be technically in the normal range, but I would guess that I'm at the bottom of the normal range. I'm still looking for a solution.
 
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anothermarkg replied to Aatif M Husain, MD's response:
Thanks for the response Astif M. Husain, MD. CPAP was working with no problems for a year or two. No daytime sleepiness at all, and I had to make my self go to bed after 16 hours awake. That was at 8cm. Then the symptoms began coming back. I had no weight gain and was on no meds. I have even loss 20lbs in the past 6mos in order to see if that would help, but it hasn't.

I returned to a sleep specialist. We did a sleep study which showed my condition had worsened from mild to moderate and severe. We did a titration study, and my doctor increased my pressure to 15cm. That didn't help, even after I got the mask to stop leaking. I even went up to 18cm and no different.

My doctor then had me to do another titration study to confirm the first titration study. This was only about 2 months later. After the second titration study, he said my jaw was unstable, but I did not need such high pressure. He reduced me to 12cm and I began using a chin strap. Again, no improvement. I felt like I was gasping for air. Also, the chin strap may have been having the opposite effect and closing off my lower airway.

I then went to a dentist who specializes in sleep medicine in order to get a TAP to stabilize my jaw. That did not change the way I feel either. Not at all.

During this time I have also been to an ENT. She says I have a only a slight deviated septum which she could fix. She would also do a UPPP if I want to, but I'm skeptical of something so painful, irreversible and possibly not helpful.

A couple of weeks ago I had a sinus infection. I began taking guaifenesin 400mg and phenylephrine HCI 10mg. I noticed I began breathing clearer during the daytime and when I wake up in the morning with my CPAP on. I also began having dreams. Previously I had not been having dreams, so I assume this is a sign that I'm getting better sleep.

After the infection went away I continued taking a decongestant, but I switched to Claritin D 12 hour which I take every night in order to sleep better. I assume the decongestant clears my sinus which helps me to breathe better, even with the CPAP, and helps me to sleep better. I'm at 17cm on the CPAP right now. I don't feel perfectly well, but this is the only thing I have done which has made any significant improvement to the way I feel. I don't feel as bad when I'm awake, and it takes less activity to keep me awake now. But, if I am sitting still, I can doze off with no problem. So, the decongestants help, but I still need to use the CPAP.

FYI, wearing the CPAP has never been a problem for me. But at these high pressures it is uncomfortable wearing the mask so tight in order that it does not leak. Also, before i used the decongestant, I always woke up a little congested but not to the point where I could not breathe. My sleep specialist said this was because I was not getting good air flow with my OSA, but with a CPAP gushing down my nose at 15cm, I definitely had airflow while I was sleeping.

From what I know, I don't think any non-severe sinus issues that I may have could be causing all of my OSA, but could it be making my diagnosis and treatment this much worse? Also, do you think the UPPP would help me get more improvement? Since the TAP didn't seem to help any, it seems like my obstructions are in my upper airway. Do you agree?

Also, my sleep doctor isn't a pulmonologist or ENT who treats sleep disorders too. He is a sleep specialist who specializes in sleep medicine, so I assume I am seeing the best doctor possible. But, any fresh outside input would be helpful. Forgive me for going so long, but I'm just trying to accurately describe my condition.
 
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spiritbriankent responded:
At times the CPAP settings could change. But I have found that my food allergies were making me bloated without realizing it and I believe made my airway more restrictive that usual. Have your doctor check you for food allergies. Mine was done quick and easy through a blood test. Adhere to the diet for at least a week and see how your sleep has been affected. I have had sleep apnea almost all my life and know how it can make an effect on a person's overall quality of life. Good luck.
 
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ernestfla responded:
I have been using a CPAP machine for sleep apnea for about 6 years now and it definitely helps me to sleep as comfortably as possible, everything considered. I use the nasal pillow device which works for me. I tried the facial mask but it was just too uncomfortable since I wear a beard, and facial hair just does not accommodate the mask device.

I suffer from arthritis/stenosis pain in my spine and hips, and also from peripheral neuropathy in my lower legs extending down through my feet and toes. Because of this I cannot exercise properly, and therefore I am obese (about 60 lb overweight). I take pain medication (Darvocet, Vicodin) to relieve the pain, and it also helps me sleep better because it masks the pain of both arthritis/stenosis and neuropathy. I take a Vicodin at bedtime around 10:30pm, then another about 2am, then a Darvocet when I awake about 6am, another at about 10am, another at about 2pm, and the last one at dinner about 6pm. I must be very careful taking this pain medication because it will contribute to constipation which is another problem that robs my body of rest.

I also take a heavy daily dose of Lasix to combat edema, and this direutic causes frequent need for urination. I take the Lasix early in the morning so it doesn't affect my sleep at night, but I still must wake after about 3 hours of sleep to relieve my bladder, which is a nuisance and certainly does not contribute to a restful sleep pattern at night. I augment the Lasix with Glyburide and Triamterene in the early morning. These direutics also relieve my chronic congestive heart failure symptoms.

I stopped cigarette usage cold turkey in '65, but continued on pipes and cigars until '97 when I quit all tobacco cold turkey. I have not suffered any real problems from my tobacco usage for which I am very grateful. Also, I quit drinking alcohol about 5 years ago, which turned out to be a good thing, also.

It was hard getting used to the CPAP machine, but now I would be in a world of hurt without it.
 
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Scott92111 responded:
I was diagnosed with severe obstructive sleep apnea. I had the UPPP and tonsillectomy on Dec 3, 2009 by a very qualified ENT. I got two opinions and all concurred. The CT scan/sleep apena protocol and the at home sleep apnea study confirmed the OSA. I was not CPAP compliant.

I am 53 years old...the surgery went great and it just was not bad at all...one overnight stay in the hospital...and could not wait to get home. A soft diet for 10 days and then ease back into solid food. I can honestly confirm that if I had to do it again, I would NOT hesitate one minute. Its a sore throat, its very tolerable and very manageable post op. I live alone and had no problem taking care of my self. And I lost 12 lbs in the process... I was out XMAS shopping 2 days after I got home from the hospital.

I had a sleep study at home 3 months post op. My O2 saturation stayed at 90% and did not drop below 85% and I did not snore anymore...(very expected for my age).

There are several points to having that kind of success:
1. Have a really qualified surgeon. Not every ENT is good at it.
2. Once you have oit done...stay hydrated and keep your throat moist.
3 Manage the discomfort by staying up on the pain meds. Meaning crush the pills and take them with pudding. Its uncomfortable for the first week...but its not the brutal surgery everyone has heard. Everytime I had heard about an adult having their tonsils out, it was a nightmare story. It was not. My doc used a plasma knife which causes less trauma hence decreasing the pain when the tonsils came out. The sore part is the revision of the soft palate. But again, very very tolerable.

Sleep apnea is nothing to mess with. It leads to heart disease and stokes as the heart and brain cannot do without oxygen....

Best...

scott
 
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LIBreeze responded:
I was having problems with my CPAP settings. They were either too high or when adjusted were too low. My Dr. got me a newer machine that automatically adjusts the CPAP settings thoughout the night as needed. My low setting is 4 and the high setting is set at 18. Now I sleep soundly and wake up feeling rested. With the machine able to adjust as I sleep, I am always getting the right amount of air that I need. This new machine was covered by my insurance co. even though I had only had the other machine for 3 years. It also allows me to start off for 20 minutes at a low amount of air until I become accustomed to the inflow. I am usually sound asleep before it kicks into full air.

Good luck and keep looking for the solution.
 
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wonderandwander responded:
If I eat just one small square of dark chocolate and one large cup of decaf coffee daily for a few days in a row, I notice I am more sleepy in the day. If I discontinue this daily habit, I start to feel better. I take sleep medication nightly and use a bipap machine for central nervous system sleep apnea. I was surprised that such a small amount a caffine can has such a cummulative impact but after a few trials, it seems to. Something you might want to consider your diet.
 
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djdscreen replied to LIBreeze's response:
Thanks so much - This may be the solution I need. I feel like my pulmonary people threw me a life bouy and cast me a float. No follow ups or anything. Oh yeah, I'm looking for new...
 
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mikehaze replied to anothermarkg's response:
This sounds an awful lot like my experience so far. Are you still using the CPAP? Any success at all?
 
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justmejust replied to LIBreeze's response:
That auto DPSP machine sounds awesome. I am using one for 2 weeks under dr. supervision and I find it very comfortable. I have been getting a little more fit and the pressure needs to be reduced. I used to be at 11, then 7 so far.


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take meds at some time, don't eat after 7
I meant the longer reply posted a few minutes ago to to go to donnajune2000 More
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