CPAP - 6 months in - Frustrated.

[Swim_Bike_Run]

Few facts first. Sleep study on 12/4/09 - RDI of 28...mild to moderate sleep apnea. PLM index of 11 (mild). Titration on 12/10/09 and determined 10 was optimal pressure. Weight at sleep study was 242 lbs, I am 6'1.

I am currently 31 lbs lighter and in much better shape. I use Auto mode with zero EPR and settling of 15 minutes most nights. My settings are 5.6 - 13. My 95% that I check in the mornings used to be up near 10, now is down near 8.0. I am also 30 lbs lighter now due to increased exercise and better diet. Resting HR is 38-44. I have had heart checked via treadmill stress test, heart ultrasound and EKG and everything was normal. Low HR is due to fitness. All bloodwork is normal and in range. Fitness and weight are great - I competed in a Half-Ironman Triathlon this past weekend, but still awoke very tired all weekend. I used my CPAP every single night for first 5 months and this past month I used it off and on. I have seen NO relief or improvement in my daily fatigue levels...at all, none. Some days I think it is actually worse than when it started. I do not drink or smoke and my diet is very good. I drink a little caffeine in the mornings but that is about it. Usually water the rest of the day. A diet coke every now and again. Avg AHI each night is about 2.5-2.9 with AI usually .1 or 0. Very low leak rate of .1 or lower. Went to see new sleep clinic and doc and he sent me home with pulse ox to wear overnight with CPAP and it came back normal (95% all night). He then said possibly that my restless legs my be interrupting my sleep so he wanted me to try klonopin, which is a heavy duty muscle relaxer and is very, very addictive. He said if it did not work, then he did not want me taking it. I used for about 3 weeks and saw no improvement so I stopped taking it. He is not sure what to tell me. Some nights I take ambien, lunesta or melatonin. They seem to help me fall asleep faster but I still wake sometimes during the night.

Will my insurance (United HC) allow another set of sleep studies within 6-8 of the first set? I want to find out if I still need CPAP and also if so, I want to do a study with me using it.....then if they tell me my sleep me good - then I will know something else is going on and causing my fatigue. Would switching to a hybrid or FFM possibly help?? I am very close to putting my CPAP away completely as it is just not doing any good. I have scheduled an appt with a NEW (my 3rd) sleep clinic next week and will see what they say. I am really frustrated at this point. Feeling this way is starting to make me a little depressed, to be honest. I am really tired of complaining to my wife.

Any suggestions?

[KatieW]

You've made great gains in your health and fitness, congratulations! I'd be frustrated too...it sounds like you've been doing everything right, and yet the outcome is not as you hoped. The only thought I have, and this is just a wild guess, but I have a friend who trained very hard for marathons, and she was very tired. She found out she was not eating enough protein and carbs, and she was over-training, with insufficient rest days.

On the nights that you don't use your cpap, have you used a pulse ox? How many hours a night do you sleep?

I hope your new sleep doc can help.

Edited to add: Just had another thought. I found that on the S8, apap disturbed my sleep. On cpap I slept much better. Might be worth a try?

[brazospearl]

Swim_Bike_Run,
Sorry to hear you're not yet feeling better. It sounds as though your CPAP therapy is going well, though, based on the numbers you provided. I think it would be imprudent to stop your therapy. Whatever is still keeping you from getting restorative sleep, it is clearly NOT apnea at this point. If you stop the therapy, then apnea is back in play as a contributing factor. It just seems smarter to keep using your machine until you know what else is happening. It's so frustrating when doctors, the people we think ought to know medical stuff, can't figure out what's happening. For what it's worth, I've known several people who have OSA and restless legs, and once the OSA is under control the leg problem seems to be worse and keeps them from resting well. I don't know of any data about that, it's just an impression I've gotten based on experiences of a few folks. Anyway, good luck, and let us know how things go.

[DoriC]

Hi Swim, I had the same thought as Katie did, that perhaps the wide auto range was disturbing you. Would you consider trying a narrower range maybe 8-12cms or cpap at 9 cms? Perhaps you are mouth breathing and may need to correct that or get a FF mask. Also at your fitness level your diet really has to be pretty perfectly balanced. Have you considered a good nutritionist? Keep us posted and I think you'll find help here. You're almost there so no "off and on".

[SleepingUgly]

Is your waking in the night a big issue or are you waking once or twice and returning to sleep? Are you getting enough hours of sleep? How many mgs of Ambien are you prescribed, and is it the short-acting or the CR version? Why were you prescribed Ambien exactly? I am not as familiar with Lunesta as I am with Ambien. Melatonin would not be expected to keep you asleep.

Do you have symptoms of RLS (i.e., sensations that bother you) or just some Periodic Limb Movements (PLMS) on the original sleep study? To my knowledge, I don't think Klonopin is first-line treatment for either RLS or PLMS.

Call your insurance and find out if you're covered for another sleep study. I think my insurance covers 2 a year. It would be good for you to see what is going on while using CPAP.

[kteague]

Sorry to hear of your struggles. Please stay mindful that decisions made out of frustration and fatigue are not likely to be the same decisions you would make if well rested. Seems to me your need for cpap treatment has been well documented and I haven't seen anything you've written that indicates otherwise. Is your leak rate consistently good on your data? Top of my priority list would be assuring there are no mouth leaks. Whether you do that by mask, chin strap, tape - that's a basic that you just can't skip and expect it to just be ok. Would be a shame for you to stop a treatment that you need because it was not given the chance to be successful. About those leg movements... how did they look on your titration report? I tried to find your titration results in your old posts but didn't see them. Sorry if I'm asking things you've already posted. What was the total limb movement count, index, and number of arousals? This info could shed some light on the nature and significance of your movements on cpap. As far as the Klonopin not helping in the 3 weeks you tried it, all that really says is that either #1 this med is not effective for your limb movements, #2 that dosage of the med is not effective, or #3 your problem is not limb movements. As was already mentioned, Klonopin is not the usual first line of treatment. Personally, if I were you I'd back off the new doctors and new studies until you've addressed the leaks and confirmed you still feel bad. Was it suggested to you by a doc to get iron studies and a ferritin level done? If your limb movements were substantial on the titration, seems that would be a natural progression in solution seeking. I don't want to go into too much detail if it's not an issue, but if you were to happen to have PLMD, it would be no surprise for it to worsen with effective cpap treatment. A study using your effective cpap treatment would show the extent of the problem. Another diagnostic study wouldn't be the answer for one with PLMD. Also, don't be surprised if treatment of the movements reveals your OSA is more severe than realized. Keep using your cpap, methodically address the other things, and expect results. You have had a full medical workup for other possible health issues, right?

[Wulfman]

I think we went over this before........and, my current suggestion is still the same as it was then.

viewtopic/t52875/viewtopic.php?f=1&t=49 ... 94#p451694


Den

[Mtnviewer]

I encourage everyone to video record themselves sleeping, with sound, and to analyze as many nights as they can to SEE what they do during sleep and when. I suggest that this could be ESPECIALLY important and helpful for those new to OSA and PAP therapy, as well as those that are suddenly not getting the results that they should be after some time.

If you don't see and hear what you are doing when asleep, then you are only guessing at how to solve the problem. Blind guessing along with trial and error will waste so much time and restful sleep, for you, your partner and your family. The data software helps a lot but seeing and hearing what you are doing along with the data will really help solve problems and much quicker than blind guessing.

Also don't discount your sleeping position as incredibly important to OSA. Learn or force yourself to stay off your back if that is a position that worsens your OSA. If you can do that, then mask and air pressures can be far more comfortable and your apneas could be reduced more effectively than with PAP pressure alone. Without video proof of your sleeping position, you may think that you are on your side, but maybe as with me, your head turns to it's back and causes events. I went for months frustrated by feeling tired, variable data and not knowing how to solve the problem other than fiddling with pressures, mask tension, mask types, pillows, and on and on. Finally after SEEING myself sleep (if I could call it sleep), I learned that my sleeping position was THE problem. Once I fiddled with that and various things to keep my head AND body in a side sleeping postion, my results and energy were improved by a HUGE amount. I need to FORCE myself to stay in a side sleeping position as no matter how I try to learn to stay there, my head or back slowly turn into the supine position at some point, as apneas occur.

Video record yourself, study the video and the software data and stop blind guessing. Also try a foced side sleeping position of the body AND the head. They need to be treated seperately, at least in my case.

Also as suggested, narrow your pressure range as much as you can. Your machine hunting to adjust pressure will also keep you awake as it is most often too late anyway. APAPs are just guessing, they're not foolproof.

[cpapernewbie]

your 95% pressure is and yet your setup is still 5-13.
Why not change it first to a flat 8?

try for one week then let us know

[Rustyolddude]

You say your blood work is normal, has your doctor checked your testosterone level? Low T as it's referred to can cause sleep disturbances, depression, chronic fatigue just to name a few symptoms. Also, check out the symptoms of Addison's disease aka adrenal fatigue http://www.mayoclinic.com/health/addiso ... se/ds00361