Still Struggling Months Later

[mmiller5373]

Hello everyone,

I've been reading this forum for a few months now and have found a lot of good information on here. I've been using CPAP therapy since August 2009 and have yet to feel any better from it. I'm 23 years old and a student in college, so my sleep apnea is definitely putting a strain on me. I'm always tired, cranky, and my concentration/memory is gone. I use to be able to study for an hour and be okay. Now I can study for the whole day and still not remember anything I studied. This issue seems to be getting worse and worse for me and it's really stressing me out. I really don't know what to do at this point.

About 4 years ago, I started to notice that I was having extreme tiredness during the day. I always felt like I needed a nap. At that time, I probably weighed about 185 pounds. I talked to my doctor about it and he sent me to a sleep doctor, where they decided to conduct a sleep test on me. I did the one-night study. I had a lot of trouble falling asleep, so the sleep tech came in and gave me an ambien. Within an hour, I fell asleep. In the morning, the sleep doctor checked in on me and told me that I didn't have sleep apnea, and that if I did, it was a mild case of sleep apnea, with an AHI of 7. He told me that my tonsils were enlarged and that they were probably causing the sleep apnea (if I had it). He said to see an ENT to get them removed and then to come see him again, after they are taken out.

Okay, well, I'm a college student. After the sleep study bills came in, I really couldn't afford to get my tonsils taken out. I talked with my uncle (who is a doctor and also has sleep apnea) and he basically told me that most doctors don't take tonsils out anymore, and that since I was older, it would be a lot more painful for me. So I decided against it, and basically moved on with my life (considering the sleep doctor didn't think I had that bad of a case of sleep apnea anyway). 4 years passed by and I found myself struggling with work, school, and life during the day. My sleepiness put a huge strain on my relationship, my activity, and my happiness. I found myself sliding down into a deep depression. I went from 185 to 220 lbs in 2-3 years. Things were bad; really bad.

I decided to visit another sleep doctor. He happened to be a friend of my uncle, so I figured I would get the attention I needed. I had a two-night sleep study. The first night, I went to bed at 9pm, but I couldn't fall asleep. I'm use to going to bed at 12am-1am, because I work into the late hours. It's funny, I always found that I would be tired all day long and that by the time bedtime rolled around, I wouldn't feel like falling asleep anymore. So the sleep tech gave me an ambien and I fell asleep within a few hours. When I woke up, the sleep tech said I had a severe case of sleep apnea. He gave me a little card with my sleep study results. The numbers were:

AHI: 32
AI: 30
Sa02: 87%

The sleep doctor checked out my tonsils and airways. He said my tonsils and airway were pretty enlarged and that they were causing the apneas. He said the low oxygen levels were causing my morning headaches and that I wasn't getting enough deep sleep. The second night of the sleep study they gave me the CPAP therapy. I decided to use a nasal mask. I still had trouble falling asleep that night, so they gave me an ambien. When I awoke, these numbers were given to me:

AHI: 4
AI: 16
Sa02: 92%

So it looked like the CPAP therapy helped out a lot. I was titrated at a pressure of 7. I got my CPAP (M-SERIES PRO C-FLEX), my nasal mask (Mirage Micro Nasal), and started the treatment within the week. The first few nights were difficult, but I did get use to it. After about a week of therapy, I still didn't feel any different. The next night I found myself waking up in the middle of the night because air was blowing straight out of my mouth. This kept happening all night long and continued over the next few nights. I called my DME and she asked if I was a mouth breather. Yes, I am a mouth breather. My nasal airway is always blocked/clogged so I've always had to breathe through my mouth. She sent me a chin-strap to keep my mouth from opening. Well, I used that chin-strap for about a week and decided it didn't help at all, as I could still open my lips and the air would pass right through. After researching a little bit, I found that a full-face mask was probably the best solution for me. After a lot of trouble, I finally convinced my DME to let me buy a Full-Face mask. They gave me the FlexiFit HC 431. This mask completely stopped the mouth leaks. I felt a little better about my therapy now, but after 2 weeks went by, I started to realize that I wasn't feeling much better at all, physically or mentally. I was still waking up with headaches and still feeling exhausted throughout the day. Getting out of bed in the morning was still a struggle for me. My concentration was still gone. My memory, still very short. I went back to the sleep doctor and he raised my CPAP pressure from 7 to 9. I decided to find out how to unlock the data on my CPAP machine to see how my AHI and leak rates were. So, after about a month or so of therapy, the machine said my week average was an 18.1 and that my month average was a 15.9. I checked my leak rates, but they perfectly matched with what the leak rate of the mask was suppose to be. I went back to see my doctor and they decided to change the pressure from a 9 to an 11.

So here I am. Three months after I started CPAP therapy and I still feel like trash. My M-Series Pro with C-Flex is still telling me that my AHI is a little high (after I cleared the data, my last months average with the pressure set at an 11 is about an AHI of 12.) A few days ago, my doctor prescribed Veramyst to help with the nasal and sinus swelling, but it still isn't affecting my sleep. My sleep doctor doesn't want me to raise the pressure anymore, because he thinks that my airway is so enlarged that the next step is to have surgery. I really don't know what to do at this point, but I need to fix this soon. Any help would be greatly appreciated.

[Babette]

Short answer - I think you might need more pressure, and possibly a different mask. Have you tried playing with your machine's settings, changing the pressure? If you don't know how to do that, PM me, and I'll send you the clinician's manual for your machine. I can't attach it here, I have to email you off list.

Good luck!
Barbara

[Pugsy]

The M Series Pro with CFlex is a fully data capable machine. How about considering adding the EncoreViewer software so that you can really see what is going on?

If the tonsils are huge they could very well be blocking the airway making things much worse and also making the need for greater pressures worse.

Are you resetting the 7/30 day averages that you see on the LCD screen to zero each night when you look at the data? If not, then you aren't really seeing one night but instead averages which can easily be skewered a bit. Not getting the best picture of what is going on..

I would suggest getting the software so that you aren't flying blind should you decide to change your pressure or even have the tonsils removed.

[SleepyT]

Mr. Miller,
I understand your hesitancy to have your tonsils removed at your age. I had mine out when i was in college too...around age 20 (a million years ago...ok, just 30 years ago).

It does indeed take a week or more to get over it...and it is somewhat painful....but it may be what's necessary. There are worse things. I think you'd get thru it just fine.

My 2 cents.

T.

[harry33]

I think you need to get your tonsils out and this should have been done long ago

[kasae]

I had my tonsils removed at age 56. Granted I was pretty sick after but I had severely infected tonsils and was very sick anyway from all the infection. After all was said and done I am so glad I did it. No more obscenely swollen tonsils to the point I could hardly swallow and constant very bad and very deep sore throat. I would do it all over again if I had to.

Modistee

[mmiller5373]

Thanks for the replies. I'm going to reset the data every morning and adjust the pressure accordingly. Although, as the pressure goes up, the FlexiFit full-face mask that I have leaks more. Around the nose and eyes. Can be quite bothersome and irritating. I'm going to make another appointment with the sleep doctor next week if adjusting the pressure doesn't work or the mask leaks too much. I'm guess I'm going to have to have the tonsils taken out, but we'll have to see until I actually visit an ENT to get their opinion on that matter.

[desert rider]

How about your sleep habits? You mentioned that you usually go to bed late and also that you had trouble falling asleep at the sleep test. It's possible that there's something about your behavior that might be hurting your success.

Have you read The Promise of Sleep by William Dement? You'll learn a lot about sleep and about putting yourself on a healthy sleep schedule. It couldn't hurt. It's a pretty quick read.

[katherinefulmer]

On that same note of Sleep Habits. The transition to College is a tough one and getting into a normal sleep rhythm often feels impossible.

Do try however to get a routine going. It's a skill for life (literally). Even if you just set a boundary for yourself (no later than 12:30am for example). Also, do take advantage of those FREE resources you have on campus. Namely, counseling. The transition to college is difficult for many, and add on other stresses you may have come to school with and your sleep issues - your mental health is tremendously important and integral to your finishing your education. Please make an appointment and keep it. The sooner you're able to elevate your 'average everyday' mood the sooner you'll realize you should have done it sooner.

Best wishes, keep us updated. Please feel encouraged to PM me, it wasn't long ago that I was at college facing similar challenges.

[DoninOrlando]

A few days ago, my doctor prescribed Veramyst to help with the nasal and sinus swelling, but it still isn't affecting my sleep.

Mr Miller,
Let us know if the Veramyst works for you. I have been on it for almost 2 weeks with absolutely no results. Even plain saline spray works better for me but Afrin works best. Unfortunately that is not a long term solution I am told. My doctor said Veramyst would reduce swelling but for me it is worthless. Luckily he gave me a 2 month supply free.

[mmiller5373]

I usually get in bed by 1am and tend to wakeup at 8:30. So, some nights I get 7 hours of sleep and other nights I may get 9. The whole college thing probably has a lot to do with my sleep problems as well, since my schedule isn't the same everyday. My work schedule fluctuates too. I actually quit caffeine cold turkey about 2 months ago, as I was pretty addicted to coffee and energy drinks (they were the only things getting me through the day). I dunno if it's a coincidence, if it's all just in my head, or if the gallons of caffeine that were in my system were keeping me up, but without the caffeine in my body, I've been falling asleep much easier.

As for the veramyst, I haven't felt much of a difference at all, And I've been using it for over a week.

[mmiller5373]

Alright, so about a week later, here are some updates:

- I haven't noticed a difference since starting the VeraMyst a few weeks ago. I will probably run out of the stuff in a few days and I won't be buying a refill.
- I've been resetting the data on the LCD screen every night before bed, but when I wake up in the morning to read the data, it says I was only running the machine for 3-4 hours/night, when I know I used it for 7-9 hours each night. Anyone else have a problem like that?
- I've raised the pressure to a 15.5 and had it there for about 3-4 days and the AHI reading seems to be at a 5.5, although, last nights reading was a 12. I don't know if each night of sleep has been different or if there is something wrong with the machine since it says I only use the machine for 3-4 hours/night.
- It's hard to describe the way I feel when I wake up and throughout the day. As soon as the alarm goes off in the morning, I seriously do not want to get out of bed because I'm so tired. It usually takes me about 15-30 minutes after the alarm goes off to get up. Once I'm up, I make some breakfast and then I get on the computer to read e-mails and do various things. My concentration feels gone. I feel like my mind is in different places at once, which makes it hard for me to concentrate. I don't feel sleepy, I feel like I want to pass out. It's almost like my body doesn't have enough of something. Maybe air/oxygen? I guess I could compare the way I feel to the way one would feel after a long distance run or even a workout. I just want to sit and do nothing at all because I feel like I can't achieve anything with the way I'm feeling.

[Wulfman]

What is your sleeping position? Back, side, stomach?
I tried skimming this thread but couldn't find where it had been asked previously.


Den

[mmiller5373]

I tend to move a lot in my sleep, but I'm most comfortable on my side.

[Julie]

You might get your MD to prescribe Flonase, or a Neti-Pot, as they're supposedly good as dealing with nasal congestion (if that's a problem) and definitely try other masks such as UltraMirage FF, Quattro or Hybrid FF, as they're very popular. It's also important to get the size right. If you're overtightening the straps BTW, that can cause new leaks, apart from discomfort, so isn't any more effective than the 'right' fit of the right mask.