One Year Later And Still Tired

[killa0039]

So a little bit about me, 34 year old male weighing in around 310. I've known about sleep apnea only for a few years, but given the symptoms I've suspected that I've had it for a long time. My parents would note and joke about my snoring as a pre-teen and I've always had excessive daytime sleepiness throughout my school years up until the present. I've just always felt tired for a good portion of my life, but up until recently I never realized that I might not have gotten quality sleep and that might have caused some issues with development and impairment. In October of 2014 I decided to pursue an official diagnosis with hopes that a CPAP could slow and ultimately reverse any damage that might have been caused, not to mention improve my sleep. The home test (my insurance refused a sleep study) recorded an AHI of 17, which I know isn't severe but enough cause for concern. In December I was given my System One with humidifier and Quatro full face mask. For the last 9 months, my prescribed pressure has been 12-16 (I average 14 a night). Average usage is 7 1/2 hours and I've only gone without it for 2 days, days < 4 are at 27. It's very comfortable and I have little to no leakage, and my wife jokes that she can no longer tell if I'm sleeping or not because the snoring is gone.

I had a checkup last July where I said that I didn't feel any different, so my doctor put me on 200mg of Provigil to take as needed. My last checkup was last month, where again I complained that I felt no improvement. The doctor cleared me for 400mg of Provigil. Both appointments my AHI was at 5. Since the meds were upped there hasn't been any noticeable change.

So my question is, what am I doing wrong? Does any of this sound normal? I read all the time how most CPAP users feel a difference after the first few nights, I mean have there been cases where CPAP hasn't been effective even with full compliance?

[beautifuldreamer]

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[kteague]

You may not be doing anything wrong. Maybe your treatment is doing what it is supposed to do and other factors are contributing to your symptoms. But without checking detailed machine data it's hard to be sure. Hopefully you have a machine that you can use software to view the nightly data. There may be clues in there. That's where I would start. It would be helpful if you added your equipment to your profile. It could be that some minor tweaks could make your treatment more effective. If after exploration it appears things are already optimal, the search outside OSA would be necessary.

[49er]

You may not be doing anything wrong. Maybe your treatment is doing what it is supposed to do and other factors are contributing to your symptoms. But without checking detailed machine data it's hard to be sure. Hopefully you have a machine that you can use software to view the nightly data. There may be clues in there. That's where I would start. It would be helpful if you added your equipment to your profile. It could be that some minor tweaks could make your treatment more effective. If after exploration it appears things are already optimal, the search outside OSA would be necessary.

I agree, particularly since you mentioned your AHI is 5. It sounds like your therapy needs to be optimized to get your AHI alot lower which hopefully would result in your feeling better. Once you add your equipment to your profile, assuming you can use sleepyhead software, please use the links in my signature profile to download the program and post screen shots so folks who are knowledgeable can take a look at your data.

Thanks!

[Mudrock63]

After being at this for three months and tweaking the settings with help from this board, I have my AHI down to an average of 5.0-6.0. It is better than it was, but not ideal. Last night it was below 4.0 and I feel great this morning. So as the others said, hopefully you have a data-capable machine that works with Sleepyhead software. With that, the pros on here can get a look at what is happening during your night and possibly suggest some changes that might help you.

[killa0039]

Thanks everyone...I'll gather some information tonight and come back hopefully with screenshots. Needless to say this whole ordeal has been pretty upsetting, I was looking forward to using the CPAP to help me sleep better but here it is a year later and nothing has changed.

I'll note too that my doctor thinks the next step is switching to Nuvigil if the Provigil doesn't prove effective. I'm pretty wary of doing this since I don't believe the root cause is being treated and I really don't want to pay for a name-brand drug if all it will do is barely mask the symptoms. Surgery was also discussed as more of a "last-ditch" resort, however she did note the several risks associated with it so I'm hoping to stay clear of this route.

[AMK]

Killa, this is what I was told by my sleep clinic. I asked them why I don't feel a noticeable uptick in energy and they told me that only 10% of people put on cpap get the dramatic happy energy response to treatment. I'm like you, a year later and still so tired. As I understand it, our machines just address the apnea portion of our sleep troubles...if there's anything else going on, we may stay tired, but it's important to keep up with cpap. I too was given Provigil and couldn't tolerate it. I think if I could get into regular exercise it would probably help me. How about you, do you exercise?

I do feel like I have had some cognitive benefits from cpap. Prior to treatment I was having increasing trouble with memory and saying the wrong word while being unaware of it. I think that my brain is back online. I just wish I weren't so tired.

[ChicagoGranny]

Both appointments my AHI was at 5.

Over 7.5 hours of sleep, this is 35 or so wakeups. Being awakened 35 times per night can destroy your daytime energy level.

I'll note too that my doctor thinks the next step is switching to Nuvigil if the Provigil doesn't prove effective. I'm pretty wary of doing this since I don't believe the root cause is being treated and I really don't want to pay for a name-brand drug if all it will do is barely mask the symptoms.

You should discuss with your doctor discontinuing the drug until you can get your CPAP therapy optimized.

weighing in around 310

Once your CPAP therapy is working well, you may find it easier to lose weight.

[Mudrock63]

+1

About three years ago I was pushing 50, exhausted all the time, and had no real clue I had severe obstructive sleep apnea. So I got off the couch and started walking. The first day I did 1.7 miles. Kept doing it. Started keeping a journal of what days I walked and how far. After a month or so, I set a goal of 60 miles/month. Within 4 months I had lost over 20 pounds.
Now I use the NikeRun app to track my miles. I put some of the weight back on, but it's muscle, not fat. They try to make getting in shape so complicated. Because they want to make money off of you. All you need are some good socks and shoes. And some willpower. So if you are capable, try it. It takes time, sure, but it is a priceless investment in your health. My blood pressure has also dropped by 15 points, and my doctor said he could not tell I smoked for 30 years (he sounded disappointed). Give it a shot. Get to where you can walk a mile under 15 minutes and go from there.

[Mudrock63]

+1

About three years ago I was pushing 50, exhausted all the time, and had no real clue I had severe obstructive sleep apnea. So I got off the couch and started walking. The first day I did 1.7 miles. Kept doing it. Started keeping a journal of what days I walked and how far. After a month or so, I set a goal of 60 miles/month. Within 4 months I had lost over 20 pounds.
Now I use the NikeRun app to track my miles. I put some of the weight back on, but it's muscle, not fat. They try to make getting in shape so complicated. Because they want to make money off of you. All you need are some good socks and shoes. And some willpower. So if you are capable, try it. It takes time, sure, but it is a priceless investment in your health. My blood pressure has also dropped by 15 points, and my doctor said he could not tell I smoked for 30 years (he sounded disappointed). Give it a shot. Get to where you can walk a mile under 15 minutes and go from there. I also don't have nearly the back problems I used to. Walking builds up the muscles that support the back.

[Guest]

I think trying the Nuvigil in place of the Provigil is an ...uuhh, what the heck kind of prescription. Nuvigil is the new version of Provigil. It is minutely different, but the docs I've talked to about it feel that the difference was made primarily to get a new patent (more years to make $$$ before generic can be made), not for any therapeutic reasons. That said, you never know. I've been on both and have not personally experienced a difference. They both prevent me from falling asleep at stop lights (which is extremely IMPORTANT) but that's about it. Only helpful hint I have for Provigil is be sure to take it on an empty stomach (I take it as soon as I get up in the morning).

[Noctuary]

21 months in and I still feel exhausted everyday, so don't feel bad.

[killa0039]

Killa, this is what I was told by my sleep clinic. I asked them why I don't feel a noticeable uptick in energy and they told me that only 10% of people put on cpap get the dramatic happy energy response to treatment. I'm like you, a year later and still so tired. As I understand it, our machines just address the apnea portion of our sleep troubles...if there's anything else going on, we may stay tired, but it's important to keep up with cpap. I too was given Provigil and couldn't tolerate it. I think if I could get into regular exercise it would probably help me. How about you, do you exercise?

I do feel like I have had some cognitive benefits from cpap. Prior to treatment I was having increasing trouble with memory and saying the wrong word while being unaware of it. I think that my brain is back online. I just wish I weren't so tired.

That was one of the reasons I wanted to get on CPAP...to improve my cognitive functions. Sadly it hasn't helped, if anything I think things are worse than they were a year ago. As far as exercise, I know I should exercise more but that's another issue right there.

[killa0039]

Please let me know if there's anything else that should be looked at...thanks!

[OkyDoky]

It shows that you have been using your machine. You can see you are having quite a few hypopneas before your machine raises the pressure. If it was me I would increase the minimum to 13. The minimum is most important in controlling your events. And the graph shows it bumps the top at 16 and wants to go higher, I would put the maximum to 20 it won't go higher than you need. It doesn't look like the pressures disturb your sleep but If they do after a few nights of data you may be able to narrow that maximum down.
Keep the settings for a week and see if they are lowering your AHI and you get better sleep.