Help ... still tired!

[Knackered]

A quick bit of background ...

I was diagnosed with severe sleep apnea (59 episodes per hour) in 2007 and went on a CPAP machine with 9cm. I think I always suffered from sleep apnea ... as a kid in school I was always getting in trouble for yawning!

Once I went on the CPAP, my brain fog disappeared and I slowly started to get better. My consultant, who is not the best communinicator in the world has told me that I should feel better within weeks, but without using the machine, I could have a stroke or heart attack in 10 years. I was only 35 at the time and generally healthy. As a result, I am very compiant - I always use my machine! Well, it took me months and months, as in if I was to look back after 6 months, I could see a difference, another 6 months again a difference, then after 18 months there was no further improvement. Since then, I remain tired - maybe not as tired as I originally was, but that's not hard! But I still am tired every single morning when I wake up. I take Pharmathon to help with the tiredness and this really does help, as long as I religously take it every morning. I have recently gone back to the consultant and completed another overnnight sleep study. He has prescribed that I now should go on the an APAP. Again, unfortunately, despite me doing my best to ask questions, he didn;t really want to spend time explaining things in any greater details - his attitude seems to be 'I know best, do as I tell you and stop asking stupid questions!'.

Having been on the new APAP now for a couple of nights, I'm not seeing any improvement. I haven't yet managed to download the data from my machine, as it's a series 60 and I haven't worked out how to put the sleepyhead patch on (though I am quite computer literate, so cant image it'll take too much longer this evening to get it sorted!).

So, given the wealth of sleep apnea experience here, has anyone any advice for me??

Thanks!

[kteague]

It is unfortunate that you are working with someone with a backwards mindset. Do you have a copy of your sleep study report? There may clues in there why the doctor is making his decisions. And getting access to your machine data will be a major step to helping yourself. Untill you have more information you won't know which way to turn. Can you at least get some data from your machine's screen? It may be your therapy is not yet optimized. Let us know what your pressure range is on your APAP. That info with some nightly data should help point you in the right direction.

Once you are certain your treatment is therapeutic, if your symptoms remain your doctor may need to do a workup to look for other possible contributors. Hang in there. You're on the verge of getting a grip on this and turning it around.

Until then, some common reasons for remaining sleepiness can be medication side effect, mouth breathing with a nasal mask, APAP range set too wide - just for starters.

[zoocrewphoto]

It is unfortunate that you are working with someone with a backwards mindset. Do you have a copy of your sleep study report? There may clues in there why the doctor is making his decisions. And getting access to your machine data will be a major step to helping yourself. Untill you have more information you won't know which way to turn. Can you at least get some data from your machine's screen? It may be your therapy is not yet optimized. Let us know what your pressure range is on your APAP. That info with some nightly data should help point you in the right direction.

I agree with this. My mom used a cpap machine on and off for about 20 years before I got mine. She said it helped her, but she would go months without it, and not taking in when traveling anymore. After I got mine, I did feel better. The awesome days are pretty rare, but in general, I feel better. I don't yawn as much, drink energy drinks unless really short on sleep, and my standard answer for "how are you" is not "tired" like it used to be. I also had a new machine with data and a really comfortable full face mask.

As soon as my mom saw my mask, she got one and started using her machine again, for about half of each night. After I had my first followup with my sleep doctor, she asked if she could do a partial trial night with my machine. I am a severe night owl, so she was able to sleep 4 hours with my machine before I went to bed at my normal time. I set it for her current prescription of 10 the first night to see what results she was getting at her prescription. The ahi was good, only 3.4, but the graph showed a cluster with events over 30 seconds, and one of them was over a minute. I gave her my sleep doctor's business card, and she made an appointment. We also did a second night at 10-13 to see what the machine would like to do with her. I went with her to the appointment, and the doctor looked at her last sleep study and the two reports. He asked how she felt with the current cpap treatment, and she admitted that she never felt any better. She had kept quiet so that I would not think it was useless.

She got a new machine with data and a range of 10-15. She is now 100% complian, all night, takes in when traveling, and feels better. Her therapy is now optimized for her. Her last sleep doctor did a sleep study only 2 years ago, so they could have prescribed a machine with data or auto range, but they did not.

Once you are able to see your data, you can find out if you are having clusters of events, longer events, etc.

[Guest]

Thanks guys for the support.

My range for the CPAP is 4-18cm. Seems like quite a wide margin! I'm due to go back to the consultant at the beginning of May to see how I'm getting on. Hopefully I'll be able to get the data problem sorted out tonight, which will give me access to what my number look like with the APAP.

[zoocrewphoto]

Thanks guys for the support.

My range for the CPAP is 4-18cm. Seems like quite a wide margin! I'm due to go back to the consultant at the beginning of May to see how I'm getting on. Hopefully I'll be able to get the data problem sorted out tonight, which will give me access to what my number look like with the APAP.

That range may be part of your problem, for several reasons. If your pressure needs are at the higher end, it will take awhile for the machine to get up there and actually help you. Lower pressures tend to be suffocating for many users, so it may be uncomfortable. And some people are bothered by a lot of pressure changes. If your machine is going up and down a lot, it may be disturbing your sleep. Once you have an idea of where your pressure really needs to be, you can narrow that range down and get better treatment.

[khauser]

That range is PRACTICALLY wide open, and is prescribed (in my humble opinion) by someone that has no idea how APAPs work.

We already know you needed AT LEAST 9CM, so that should be the bottom end.

Please get a hold of SleepyHead software (you'll need the patch as well) and download the data from your machine. We need to see:

• Events
• Flow
• Pressure
• Leak
• Flow limitation and snores.

Pugsy has detailed information on SleepyHead in her signature.

This thread covers patch installation ... again, you'll need to do this for your machine.
-Kevin

[Knackered]

Thanks Kevin,

I'll try to download the patch tonight and get access to my data. Hopefully, I'll be able to post all of the data that you suggest tomorrow. I agree though - 4-18cm seems a really wide band - last night, as the 4cm was simply too low for me, I upped it to 6cm, from the sounds of your post above, you're suggesting that I should narrow it further to 9cm tonight?

[khauser]

Thanks Kevin,

I'll try to download the patch tonight and get access to my data. Hopefully, I'll be able to post all of the data that you suggest tomorrow. I agree though - 4-18cm seems a really wide band - last night, as the 4cm was simply too low for me, I upped it to 6cm, from the sounds of your post above, you're suggesting that I should narrow it further to 9cm tonight?

It would be easier and more accurate to say if we had data to look at, but based on your initial prescription, that's what makes sense to me.

I'll take this moment to point out that like most of the people here, I am an educated patient, NOT a doctor. I give my advice freely but it is YOUR responsibility to understand the ramifications of taking over your treatment.

I don't say that to scare you. I happen to have a great doctor that is willing to work with me on all of my issues. He is aware of the work I am doing on my therapy and backs it 100%. He's also aware that I've taken the time to educate myself. According to him (and I believe this) I know more about it than he does (he's a family practitioner, not a dedicated sleep doctor).

So why the caution? When I started out I had no idea that in (relatively few) patients you can make matters worse by increasing the pressure. Let's say I am not generally bothered by high pressure (which is true) so I decide to set my machine up as CPAP @ 20cm. What could be bad about that? Well, if I am unlucky, that could induce Central Apneas (these are apneas that exist because the brain doesn't think you need to take a breath, not because there's an obstruction). So in fact I could be making things worse. Lesson is, know what you are doing and what to look for in the data and/or involve a doctor that knows what the pros and cons are. You could choose, as many do, to listen to the (admittedly excellent) advice available here. That would never work for me and I will advise against it simply because by making changes without your doctor's knowledge you ARE taking control of your treatment. You wouldn't want average 'Joe' on the street with no specific knowledge to make these decisions for you. If you don't learn about it but take that control, that's essentially what is happening.

I didn't mean to turn that in to a soap box. I really highly respect the people here, and they've helped me enormously, so if ANY of that comes of otherwise, that was never the point.

-Kevin

[cosmo]

Besides a cpap machine with data, lifestyle changes are also key. Same bedtime, less sugar, food choices, room comfort, stress, etc.