Off to law school, and scared as hell...

[Nemutai]

*I originally posted this on the apnea support forum, but it seems like that site is a bit dead, so I was guided by a very kind member over here*

Hello everyone,

I'm new to this community, but it looks to be a wealth of resources and knowledge, and I look forward to growing with all of you.

A bit of background on my situation:

For the better part of ten years I've noticed that I've always been on the drowsy side. Never really been able to fully focus, always a bit irritable, and just generally "fuzzy". After my girlfriend reported seeing me making weird noises in my sleep, I finally decided it was time to get my condition diagnosed. I also found out that waking up a dozen times a night, is NOT normal, and craved to be like all my othe friends, who were able to sleep soundly through the night. My aunt suffers from sleep apnea, and she informed me that it is indeed genetic, and that I should go to a sleep study to get down to the bottom of this.

Now we arrive at my first problem... Sleep studies. I went about 4 or 5 years back and was not able to sleep at all, hence an inconclusive study, and no offer for treatment.

For my next study, I went in fearful that I wouldn't be able to sleep, and of course, just like the first time, I barely slept at all... In fact, I think I slept for a total of two hours. It was brutal. Fortunately, my doctor could tell that I was 100% convinced I had sleep apnea, and he provided me with a prescription for a CPAP, with a prescribed pressure of "4". He then booked me for ANOTHER sleep study to determine how much pressure should be employed for future use.

There was about a 1 week window between when I got the machine and my next sleep study, so I took it home and I immediately felt a different afte only one day of use. I felt more awake, and felt a lot more positive on the whole, but I was still waking up a few times at night. After a week, my therapy hour readings were at about 5 hrs average, and my AHI was reading an average of about 8.5. I figured the pressue would likely have to be adjusted, but I was told I'm not able to do this myself, and have to wait on the results of this next sleep study...

So.... I went to my third sleep study, this time a titration, and wouldn't you know, I lay there with my eyes closed for 6 hours straight. After finding out I had slept for barely an our, I asked the nurse if she could unhook me, because I was furious and just wanted to go home.
I swear to God, I am cursed. I CANNOT SLEEP at these studies and it's obviously hindering any progress I could be making with this machine.

So now, onto my questions.... Any help or advice would be greatly appreciated.

1. My doctor would not raise my cpap pressure based on the inconclusive results on the study, just as I had predicted. I am able to read all the data on my machine, so should I just be making the adjustments myself? I live in Canada right now and will be moving to the US tomorrow for law school, but do doctors in the US accept data recorded on CPAP machines as reasonable in making recommendations for changing air pressure? Is it really dangerous to make changes myself, even if I make the changes very gradually over a long period of time?

2. Ever since I moved back home, where the A/C is constantly blowing, I have not been able to wear my nasal pillow for very long at all, because my mouth would completely dry out. II played with the humidification settings to no avail, and kept pushing on assuming I just couldn't help but mouth breathe because I have a deviated septum as well, which really seems to close my nose up at night. I eventually went back to the CPAP provider, and they switched my Resmed FX with a Philips Amara full face mask, which I've been using for 2 days, and though I dont mind the feel of it, I now have puddles of drool collecting because I sleep half on my stomach and half on my side. The air pressure setting of 4 also seems to be very low with this mask, and I question whether it's even helping. Given my deviated septum and my habit of mouth breathing, should I stick with the full face mask? How do I fix this issue of drooling??

3. Every time I discuss my issues with my CPAP provider or doctor, I feel like they just listen, and then send me off without really taking the time to explore real solutions. The latest proposition from my doctor was suggesting an oral appliance, but unfortunately I no longer have health insurance from my old workplace, and health care in Canada does not cover these appliances, so I simply can't afford one. With that being said, does anyone think that is even a worthwhile option?

That's all for now... sorry for the enourmous first post, but I am kind of bummed out now after all the progress I've made to be experiencing the above mentioned difficulties. I guess I'm just asking someone to make me some recommendations based on their experience, because no one else seems to be doing that...

Thank you in advance for your help.

[Sleepster]

Which PRS1 machine to you have? I'm guessing it's the Remstar Pro, but check to be sure. The model number is 450P, or 460P, or something like that? See if you can swap it out for the model 550P or 560P which is the auto adjusting machine.

Even with the machine you've got you can adjust the pressure. Just raise it to 5.0 and see what happens to your AHI over the next few days.

Is your dry mouth due to mouth-leaking? If so, you'll need a chinstrap. You can check the "percent time in large leak".

[zonk]

Get copies of your sleep studies and find a new sleep physician.

[JudgeMental]

Welcome..Don;t appoligize for the (enormous) post. The more info you extend, the more help you may receive.I think you will find many caring people here who are very interested in helping other apnea sufferers. I think you will get many responses to your query.
You have a bit of a controversial issue with the health care in two different countries. BUT. They are a really NO big issue. Your main issue is your apnea concerns that can be a major health related issue. Esp; to one who must be alert and energetic in order to attend to your law studies..
Your non-sleeping during a sleep study is very normal as you can imagine. Its just too foreign to be at ease with all the apparatus attach to you. Any rate, you now have the ammunition to battle this apnea condition. Adjusting to it may come slow or a piece of cake. Hopefully the later.
Frankly, a pressure of (4) is extremely very weak. Just slightly more then our normal breath. Its a "starter pressure" which I have never heard of anyone staying with for very long. You can see where I'm going here. And that is, if you have the clinitian manual ( its also available on this site) you will be able to raise and/or lower your own pressure on the machine. I'm NOT advocating that you do so, however it is done by most who have a poor relationship with the DME and Doctors. I feel that someone with the intelligence to attend law school is certainly smart enough to tend to his own health with caution. The standard for treated apnea is a pressure of 5 or lower. With that said, and with your present AHI readings avg. 8.5, I would increase the pressure on the machine to (6), let it ride for a week and I think you will feel better and have more alertness. Check the readouts of the AHI and I'll bet they will come down slightly. After that, you may want to increase a little more, but I suggest that you do so in 1/2 or 1 increments . Don;t make pressure changes rapidily, but give at a minumim a week or so between changes and check the readings. Its not necessary to reach an AHI of (0) and probably cannot be attained anyway. Few, if any, do. I think the drooling issue will cease on its own after a while. Any mask that is comfortable and does not leak much at all, is going to be your biggest test. Good Luck with the law school and also with your apnea. Feel welcome and post often and comment about your success.

[PaulaO2]

1. - yes, this happens often. A lot of people cannot sleep much at all during the sleep studies. There are home tests you can try. Or you can get an APAP and set it yourself. The danger to raising your pressure yourself is minimal. There is a chance that higher pressures can cause central events. But for most of us, those settle down once our body and brain get used to it. This is why slowly increasing the pressure, if you have a CPAP vs APAP, is important.

2 - that may not be drool but be condensation from the warm air meeting the cooler room. I get that a lot in the fall and spring. I roll onto my back in my sleep and wake up to water in my nose. I'm not a mouth breather but I would guess the condensation inside a full face mask would be worse.

3 - oral devices are hit and miss. Sometimes they work, many times they don't. And it really is not something to get and test on your own because how do you know if it is working? You could use an oximeter to monitor your blood oxygen levels but that's it.

Like JudgeMental said, 4 is very low. Being so used to CPAP, I would not be able to breathe with that.

It is very possible to treat yourself if you are willing to work through it. It is a long process. If you have a data capable machine, it is possible to gather data and make assumptions based on the data and how you feel.

Get the clinician's manual and read how to set the pressure. A newer one or an APAP would be best. Look at Supplier #2. They have used and open box machines. You can also contact a supplier and see about renting an APAP for a few weeks. You can use it to determine your pressure then set your CPAP.

Read this: How to find your pressure
and this: manuals and setting your own pressure

Do NOT make changes daily. Do it weekly. Or every other week. The data from a single night is not a trend. Each night is different. Which is why having a week or two of data will show you a bigger picture and you can make better, informed decisions. If you have a CPAP (vs APAP) it will take longer. You view the data and decide if it needs to go up. You want an AHI of 5 or less. If you're not there yet, bump the pressure up a half point. Collect data for another week or two. Repeat. It is a slow process but it is a safe process.

Using an APAP is good because it will determine your optimum pressure. You start with it 'wide open', meaning 4 - 20. It then will use whatever pressure your body needs. By looking at the data after a week or two, you can see what you hit the most and what the lowest was. You narrow the pressures down to about those two numbers then gather more data. If that works, then you are set.

Ideally, finding a doctor who treats the patients as informed adults would be nice. Many of us have the sleep study done and take a medication to help sleep through it. It taints the data only slightly. It is better than no data at all, though!

[trish6hundred]

Hi Nemutai, I'd like to say,WELCOME! to the forum.! Hang in there with your CPAP therapy, it can take LOTS OF TIME AND PATIENCE.! Keep us posted on how you do and don't sweat it about how long your post is. Sometimes it takes a very detailed post to get the help you need.
Best of luck to you on going to law school.

[Nemutai]

Wow, thank you for all the support. This is a really great community!

I have all my stuff packed up in my car so I can't even whipped out my CPAP machine to check the model #, but I'll report back with that, along with responses to all the kind comments and suggestions as soon as I settle down.

Sleep well

[JJJ]

Hi Nemutai (Sleepy),

I saw your post earlier today but didn't have time to reply. Now that I do I see that others have given you a wealth of information and advice. I have only a few thoughts to add.

I note that you mentioned not having unlimited funds to treat your sleep issues. Having recently completed an advanced degree I can appreciate that. Post-bac education is hideously expensive. On the other hand, you will not do well if lack of good sleep makes it hard to concentrate. Fortunately, most universities in the U.S. offer student health programs that should cover sleep apnea. At a few universities it is included with the tuition, but in most it is an optional fee per term. However, the fee is usually very reasonable because it is based on the average student, who is typically young and has few health problems. I suggest you check into this with your future school.

I also want to add that Apnea Board is all about empowering the patient. As others have noted, you are clearly intelligent enough to figure out the basics of sleep apnea yourself. There is no law against changing your pressure on your own. When you do so, however, follow the scientific method. That is, change one thing at a time and give it a couple of weeks to see the results.

I would also suggest that you add your machine model in your profile so everyone can see exactly what machine you have.

I also suggest you use the supplier list (at the top of the page) and research all the masks and machines currently available.

And finally, don't be afraid to ask questions. There are a lot of people here who love to help others. I can't remember anyone here ever being chastised for asking a question. And welcome to Apnea Board!

[archangle]

In my opinion, no competent doctor sends a patient to a sleep study without a backup sleeping pill in case they can't sleep.

However, in my opinion, there are a lot of incompetent doctors out there.

[Nemutai]

So orientation is finally over, so I can actually respond to all the thoughtful comments that I received. Been a crazy week and a half...

Which PRS1 machine to you have? I'm guessing it's the Remstar Pro, but check to be sure. The model number is 450P, or 460P, or something like that? See if you can swap it out for the model 550P or 560P which is the auto adjusting machine.

Even with the machine you've got you can adjust the pressure. Just raise it to 5.0 and see what happens to your AHI over the next few days.

Is your dry mouth due to mouth-leaking? If so, you'll need a chinstrap. You can check the "percent time in large leak".

So I checked the machine and it looks to be a Remstar Pro 461CA. Does that make any sense?

I checked the large leak section and it always listed "0".

Get copies of your sleep studies and find a new sleep physician.

honestly, I don't think I'm going to have time to do that for the next 3 years lol

Welcome..Don;t appoligize for the (enormous) post. The more info you extend, the more help you may receive.I think you will find many caring people here who are very interested in helping other apnea sufferers. I think you will get many responses to your query.
You have a bit of a controversial issue with the health care in two different countries. BUT. They are a really NO big issue. Your main issue is your apnea concerns that can be a major health related issue. Esp; to one who must be alert and energetic in order to attend to your law studies..
Your non-sleeping during a sleep study is very normal as you can imagine. Its just too foreign to be at ease with all the apparatus attach to you. Any rate, you now have the ammunition to battle this apnea condition. Adjusting to it may come slow or a piece of cake. Hopefully the later.
Frankly, a pressure of (4) is extremely very weak. Just slightly more then our normal breath. Its a "starter pressure" which I have never heard of anyone staying with for very long. You can see where I'm going here. And that is, if you have the clinitian manual ( its also available on this site) you will be able to raise and/or lower your own pressure on the machine. I'm NOT advocating that you do so, however it is done by most who have a poor relationship with the DME and Doctors. I feel that someone with the intelligence to attend law school is certainly smart enough to tend to his own health with caution. The standard for treated apnea is a pressure of 5 or lower. With that said, and with your present AHI readings avg. 8.5, I would increase the pressure on the machine to (6), let it ride for a week and I think you will feel better and have more alertness. Check the readouts of the AHI and I'll bet they will come down slightly. After that, you may want to increase a little more, but I suggest that you do so in 1/2 or 1 increments . Don;t make pressure changes rapidily, but give at a minumim a week or so between changes and check the readings. Its not necessary to reach an AHI of (0) and probably cannot be attained anyway. Few, if any, do. I think the drooling issue will cease on its own after a while. Any mask that is comfortable and does not leak much at all, is going to be your biggest test. Good Luck with the law school and also with your apnea. Feel welcome and post often and comment about your success.

Thank you very much for the kind words and the advice. I guess the general consensus is that a small increase is not going to do me any harm. Is 6 still relatively on the safe side? is 5 better?

I really appreciate all the help. Hopefully when I become a lawyer I can go out there and stick it to all the worthless doctors who are making you all do their jobs for them -_-

1. - yes, this happens often. A lot of people cannot sleep much at all during the sleep studies. There are home tests you can try. Or you can get an APAP and set it yourself. The danger to raising your pressure yourself is minimal. There is a chance that higher pressures can cause central events. But for most of us, those settle down once our body and brain get used to it. This is why slowly increasing the pressure, if you have a CPAP vs APAP, is important.

2 - that may not be drool but be condensation from the warm air meeting the cooler room. I get that a lot in the fall and spring. I roll onto my back in my sleep and wake up to water in my nose. I'm not a mouth breather but I would guess the condensation inside a full face mask would be worse.

3 - oral devices are hit and miss. Sometimes they work, many times they don't. And it really is not something to get and test on your own because how do you know if it is working? You could use an oximeter to monitor your blood oxygen levels but that's it.

Like JudgeMental said, 4 is very low. Being so used to CPAP, I would not be able to breathe with that.

It is very possible to treat yourself if you are willing to work through it. It is a long process. If you have a data capable machine, it is possible to gather data and make assumptions based on the data and how you feel.

*URLS OMITTED

Do NOT make changes daily. Do it weekly. Or every other week. The data from a single night is not a trend. Each night is different. Which is why having a week or two of data will show you a bigger picture and you can make better, informed decisions. If you have a CPAP (vs APAP) it will take longer. You view the data and decide if it needs to go up. You want an AHI of 5 or less. If you're not there yet, bump the pressure up a half point. Collect data for another week or two. Repeat. It is a slow process but it is a safe process.

Using an APAP is good because it will determine your optimum pressure. You start with it 'wide open', meaning 4 - 20. It then will use whatever pressure your body needs. By looking at the data after a week or two, you can see what you hit the most and what the lowest was. You narrow the pressures down to about those two numbers then gather more data. If that works, then you are set.

Ideally, finding a doctor who treats the patients as informed adults would be nice. Many of us have the sleep study done and take a medication to help sleep through it. It taints the data only slightly. It is better than no data at all, though!

Whoa! Seriously awesome post man. Thank you very much. Let me try to respond to each comment individually:

1. I figured I couldn't be the only one... I guess after I got the machine I just felt I didn't need another sleep test because I could read the AHI on the unit. Also, I see the term "central event" being thrown around a lot, but I'm not sure what it means. Sounds dangerous though...

2. I'm not ruling anything out, so that may very well be the culprit. I will keep the humidity level down and see if that change anything

3. I will set my machine tonight, thanks for those links. I really wish I had known about these APAP units, because the place I bought this one from said it was basically right near the top of the line... I guess that was not the case. I really wanted to buy the best machine possible since I still had insurance from my previous employer.

I shall look into the possibility of getting an APAP and let you know how it goes!

Hi Nemutai, I'd like to say,WELCOME! to the forum.! Hang in there with your CPAP therapy, it can take LOTS OF TIME AND PATIENCE.! Keep us posted on how you do and don't sweat it about how long your post is. Sometimes it takes a very detailed post to get the help you need.
Best of luck to you on going to law school.

Thanks dude I'll definitely keep you all updated. I appreciate the wishes as well. It's going to be a tough few years...

Hi Nemutai (Sleepy),

I saw your post earlier today but didn't have time to reply. Now that I do I see that others have given you a wealth of information and advice. I have only a few thoughts to add.

I note that you mentioned not having unlimited funds to treat your sleep issues. Having recently completed an advanced degree I can appreciate that. Post-bac education is hideously expensive. On the other hand, you will not do well if lack of good sleep makes it hard to concentrate. Fortunately, most universities in the U.S. offer student health programs that should cover sleep apnea. At a few universities it is included with the tuition, but in most it is an optional fee per term. However, the fee is usually very reasonable because it is based on the average student, who is typically young and has few health problems. I suggest you check into this with your future school.

I also want to add that Apnea Board is all about empowering the patient. As others have noted, you are clearly intelligent enough to figure out the basics of sleep apnea yourself. There is no law against changing your pressure on your own. When you do so, however, follow the scientific method. That is, change one thing at a time and give it a couple of weeks to see the results.

I would also suggest that you add your machine model in your profile so everyone can see exactly what machine you have.

I also suggest you use the supplier list (at the top of the page) and research all the masks and machines currently available.

And finally, don't be afraid to ask questions. There are a lot of people here who love to help others. I can't remember anyone here ever being chastised for asking a question. And welcome to Apnea Board!

Hey there! Very nice job on catching the meaning of my name. Do you speak Japanese as well?

You are very right about most people having covered a lot of what you had mentioned, and I hope my responses have addressed their comments adequately. Tuition is insane, but I'm happy to hear that my money is being put to some good use! I will look into what my school covers on Monday! Really appreciate the heads up

I just want to get verification on my model before I update it in my profile. Do you happen to know if 461CA is an actual model? Am I reading the wrong thing here??...

In my opinion, no competent doctor sends a patient to a sleep study without a backup sleeping pill in case they can't sleep.

However, in my opinion, there are a lot of incompetent doctors out there.

Amen to that.... Unfortunately there are an equal amount of incompetent lawyers out there too haha