2 months in and really need advice

I am 22 yo make with extreme daytime fatigue, I cannot stay awake in classes, fall asleep easily in the car, have to try very hard to stay alert when driving, and no matter how much sleep I get I am exhausted when I wake up.

1st sleep study: Diagnosed with UARS and not given a CPAP

2nd sleep study
minutes slept 183
went through all stages of sleep
arousal index 35.4 per hour, 29% breathing related, 8% movement related
mean O2 saturation 97%
no apneas/hypopneas
EEG abnormalities ALPHA INTRUSION

sleep study titration
minutes slept 213
arousal index 30 per hour
o2 saturation 97%
3 central apneas
0 obstructive, 0 hypopnea
EEG abnormalities: Alpha intrusion

Summary as quoted by my physician: pressure at 6 cm, obstructive events and snoring eliminated. REM sleep percentage increased, central apneas developed but resolved by end of study, arousals much lower by end of study. EEG continued to show alpha intrusion

Here is the data from my machine (resmed Elite II)
pressure set at 6, I use swift LT nasal pillows
leak-median 3.6
Apnea index- 1.4
hypopnea index 6.5
AHI- 7.9 (on my Rx the doctor said my AHI was 10, so maybe this did decrease?)
% time in apnea 0.5
Usage: Days not used- 0 days. used days more than 4 hours-48 days. used days less than 4 hours-6 days. median daily usage 6 hours 40 minutes


So after using CPAP for 2 months, I feel better originally when I wake up, but my problem is not a whole lot better, and no where near solved. Still exhausted, still sleepy, no motivation to work out, I am in a doctorate program and am falling asleep in classes. Not good.

I take zyrtec for chronic allergies and stopped taking it 2 days ago to see if it was making me tired.
Doctor said I could take iron pills, but that it probably wouldn't solve my problem as my blood ferritin level was 37.
Doctor said that the alpha intrusion could be a big problem (some people that have it have no problems).
Doctor wants me to go back and do an MSLT study.

I use the Resmed Elite II with a humidifier, a swift LT mask with nasal pillows, pressure set at 6, and I tape my mouth vertically with 1 strip of tape each night, effectively solving any leak problems.

My questions:
Is MSLT a waste of my time and $....I know I don't have narcolepsy....is this necessary to do?
My doctor said that sometimes just taking a sleeping pill such as ambien can sometimes solve the alpha intrusion problems
Is it too early to tell that this is not working? Does anyone think that 2 months of use is not enough to know if CPAP is going to fix my sleepiness?
Also I hate taking meds and dont want to be on sleeping pills for the rest of my life, but should I try to see if I can get an RX for ambien before doing the MSLT to see if it fixes the problem? I have used a lot of my parents hard earned money on this issue, and I do not know what to do as far as going back in for the MSLT or waiting another 2 months to see if the CPAP will help me more than it has. Any advice is appreciated

Hi, so sorry you're not feeling much better, but you did a good thing finding this forum where so many people can help you (or die trying . You didn't say which mask you're using, and that can have a major difference in your therapy. One problem a lot of us have is that once we fall asleep, our mouths fall open and all the 'good' air goes straight out (if we're using a nasal mask), but if we instead use a 'full face' mask (just an extended version of the nasal one so it covers your mouth too), we do much better. This may well be your problem, but we can also help you better if you complete your "profile" on your member page, telling us what mask you use, which machine (exactly, not just the brand name), etc. etc. Good luck!

I edited my post to add my setup: resmed Elite II with humidifier, swift LT mask with nasal pillows, pressure set at 6, and I tape my mouth at night and have almost no leaking

Jay...

Your pressure may be a little too low. If it was me, I'd bump the pressure up 1-cm....then, I'd watch to see if the hypopmeas go down.

Hypopneas are "apnea-wannabees" disordered breathing, but not disordered enough (of long enough duration) to be considered an apnea.

Gerald

jayjp04 wrote:...as my blood ferritin level was 37...

Does the doc say that this is OK? You Might ask him to comment on this article: Verdon, F, et al. Iron supplementation for unexplained fatigue in non-anaemic women: double blind randomised placebo controlled trial. BMJ 2003;326:1124 (24 May), doi:10.1136/bmj.326.7399.1124. It’s available free online at http://www.pubmedcentral.nih.gov/articl ... d=12763985.

I had an MSLT 10 years ago and again last year. Generally it is recommended that one's sleep disruptors be effectively treated before doing an MSLT. I am not a medical professional, but it seems to me an MSLT wouldn't be necessary right now unless there is a strong suspicion of narcolepsy.

About your study results - more details on the limb movements would be helpful, as in how many were recorded and how many caused arousal in both the diagnostic and titration studies. Sounds like since the doctor ordered a ferritin level, the movements may have been a concern. Were you diagnosed with Periodic Limb Movement Disorder? While your ferritin result was within the normal range, higher in the normal range is usually recommended when limb movements are an issue. My doctor wanted mine to go still higher even after it neared mid range. Doesn't help everyone, but some have reported it has helped them.

There's been lots of prior discussion on the subject. If you feel it is applicable to you and are so inclined, you can search PLMD and do some reading.

I have no experience with Ambien or knowedge about alpha intrusions, but surely some others will. Let us know how things develop.

Kathy

P.S. Just saw the new post with a link - thanks for that howkim.

For me the MSLT was the biggest waste of time and money. Had one done before I went on cpap. Back then the only way I could safely drive in the morning was to drive coffee. So in order to get to the MSLT had to drive. The large amount of coffee I drank to of course made the MSLT useless. The doctor brushed me off when I told him my pre-MSLT concerns and I blindly took the test.

I have mostly UARS/and bad snoring that probally presents in stage 3-4 so even if I could have nodded off it would not have a long enough nap to bring out the symptoms in the short nap time allowed in the MSLT. Even if I got the ambiem I wanted it would not have taken affect until toward the allowed timing of the "nap". Felt like I was stepping on a medical merry go round to nowhere until I found this site. After starting cpap I am more assertive on my health care and have questioned medical tests before jumping into them plus have dumped useless providers. The only help the sleep doctor was that he told me that most cases of UARS are treated with a pressure of 8-10 (found out my 7.5 self obtained one was too low) and for a prescription for good DME mask fitting for one that didnt leak.

With a leak of 3.6, you have NOT effectively solved any leak issues. My median leak with an LT, at pressures of 8.5-10, is zero. You are just barely under the point where the Resmed can no longer report AHI properly. If that number is your usual number, then you may need to work a bit more on leak issues. That would be a first step in making sure your CPAP is doing the best it can. When you are leaking, you are losing pressure.

Even with tape, you may still be leaking from your mouth. Or, the leak could be at the nasal pillows. They may not fit correctly, or you may need to adjust the headgear. If you do a search, there is lots of info on working with the LT, or any nasal pillows.

Also, if you have EPR turned on, you may not be getting the pressure of 6. Once you have handled your leak issues, you may need to see if 6, with or without EPR, is enough pressure for you.

While I do not have any experience with PLMD, or the levels of ferritin required in that condition, I would be very cautious, as a male, in taking iron. Hemochromatosis, an iron storage disorder, is common, but rarely diagnosed until it is causing organ damage. Women are less likely to have this disorder cause symptoms, due to monthly blood loss in the menstrual cycle. Men don't have that leeway. My son, at age 26, was already showing signs of liver damage when he was diagnosed while checking on something else. Hemochromatosis is another of those often misdiagnosed problems. Just be careful taking iron, and if you do, make sure your levels do not go too high.

thanks for the advice so far. I just got my iron Rx filled, and will be careful with it.

I called my very knowledgable DME, who is also a fellow CPAPer, and he said with the swift LT pillows a leak of 3.6L/min is very acceptable. when I use the mask fit button on my elite II it always says excellent fit. Also, I do have the EPR turned off, I did not feel it was necessary at such a low pressure.

If your machine is giving leak data in leak per minute, then yes, 3.6 is low enough. I am used to seeing it in leak per second, so the numbers are always much lower. Sorry if I made that mistake.

With the info from your sleep studies showing no apneas/hypopneas, but your current data showing an AHI of 7.9, plus a diagnosis of UARS, I'm not sure what the best suggestion for you would be. Usually with an AHI over 5, more pressure might be needed to suppress the apneas and/or hypopneas. However, since you didn't show any until your titration, I am not sure whether they might be centrally caused, in which case you wouldn't necessarily want more pressure.

I'm hoping bumping this back up will get some of the experts to take a look. I know how miserable that fatigue can be. I also had a high disturbance index, with low AHI in my first sleep study. I was lucky to have a supportive primary care doctor, and just enough AHI to qualify for treatment. After starting APAP, I found I need a higher pressure than the 7 that I was titrated for. With my auto pap, I have found I need closer to 9 to keep my AHI low. For me, I need the AI <= 0.5, and the HI <=3 to feel rested. It has taken time to adjust the pressure slowly to this point, watching my data and adjusting after a week or so. It is possible that you will need a higher pressure as well.