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Permalink Reply by RockRpsgt on April 10, 2009 at 8:22am

You can call me rock

j n k said:

The pros may be hesitant to comment on someone else's "artwork," to borrow an analogy of Mr. Hinkle's from another thread. :-) But as a non-pro, I see nothing wrong with that titration, myself. Upping the pressure to 11 seemed to help O2 and fix the non-REM events you were having in the diagnostic.

The main thing is that you were screened for other problems, it was proved that you respond well to CPAP, and you were given a good starting point. As far as I'm concerned, that's all I want as a patient out of my PSG studies.

Of course, I'm a tweaker, myself. So I would want to see how that 11 cm worked out after a few months as far as my machine-estimated AHI in my own bedroom so I could judge things for myself then. But that's just me.

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Permalink Reply by RockRpsgt on April 10, 2009 at 8:52am

I hope that one of my pts eventually follows my advice and comes to this site with their report. I do not claim to be a super- pro with titrations. I have definately had my share of tough ones. I personally would not comment on the report for ethical reasons, but I would welcome the criticism as a learning experience. I try to take my time when titrating, but I am sure that someone might find my technique agressive, or not aggressive enough. I welcome the challenge though. I truly want to be a great sleep tech

j n k said:

The pros may be hesitant to comment on someone else's "artwork," to borrow an analogy of Mr. Hinkle's from another thread. :-) But as a non-pro, I see nothing wrong with that titration, myself. Upping the pressure to 11 seemed to help O2 and fix the non-REM events you were having in the diagnostic.

The main thing is that you were screened for other problems, it was proved that you respond well to CPAP, and you were given a good starting point. As far as I'm concerned, that's all I want as a patient out of my PSG studies.

Of course, I'm a tweaker, myself. So I would want to see how that 11 cm worked out after a few months as far as my machine-estimated AHI in my own bedroom so I could judge things for myself then. But that's just me.

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Permalink Reply by Mike on April 11, 2009 at 4:15pm

Hi Barbara, a lot of us do use the Neti Pot irrigation system -- just like you say your grandma used to use. I'm 35 and have just discovered this piece of technology, but love it.

About the not breathing wide awake, i know that folks have different degrees of shallow breathing when awake. Out here in CA, I've heard of people actually going to special classes (yoga classes and other) just to learn to breathe properly! So you're not alone!

Barbara said:

Ruth Rayceen, Thank you for your very kind post. Sorry about your relative with Graves. It can, at times, be a frustrating disease to fool with. I hope they have a good endocrinologist. I’m fortunate in that mine is currently in remission with fairly normal thyroid levels. I will be tested again in about 2 months to make sure I haven’t gone into hypo-thyroidism. You have a good eye to spot Graves and think extreme fatigue connection. Thanks for that reminder. My doctor watches those numbers like a hawk - and should he ever forget you should see how quick I pitch a fit in the lab if they don’t draw for those levels LOL. The lab techs think I’m a nut because I keep them laughing. I let them know they have to do everything I want otherwise I could go into Roid Rage (rage resulting from thyroid abnormalities). It’s actually a real thing but I joke about it rather than worry about it. Tell your relative it’s one avenue of getting your needs met lol. When you write nasal irrigation do you mean the same thing as the old Netty Pot system? The type everyone’s grandmother used? How to describe this.... hummm. It’s a cute little pot you put hot salt water in. Shove the spout of the pot up one side of your nose, tilt head over sink, pour water into one side of nose & water will come out other side of nose. This is the delicate lady like system I do LOL. Is this the same thing you are referring to? If not, PLEASE fill me in on your system - I’d love to try anything new - at least once :). Thank you again for your reply.

jnk, I’ll probably end up being a Jr. tweaker if I don’t see some dramatic changes in health. I can be a little OCD at times. They say the best natural face lift is to sleep on your back. I thought I never slept on my back and was actually trying to start (for the free face lift). I will take your advice and drop the superficiality and shoot for quality sleep. With your AHI at 114 were you a walking cranky mess? Did you ever get any sleep at all? Has your before and after treatment been dramatic? Good info you shared about hormones on overdrive to wake me up allnight - really hadn’t thought of it in that way. That might explain my abnormal adrenal hormone levels. Thank you for your reply.

Rock Hinkle, Your comment about it being an in-dept report with aggressive titration is VERY COMFORTING to me. I did a little reading about lack of deep sleep and one thing that jumped out was lack of stage 4 resulting in burns not healing. During this odd illness of mine I burned each arm once on the oven. Both were burns that should have healed easily but instead both got infected and resulted in a spread of cellulitis which warranted systemic antibiotics. In other words - a perfect fit of problem resulting from apnea. I am determined to relax and give this the time it needs since you and others seem to agree I’m on the right track with CPAP. Thanks again!

Mike, I am going to take a deep breath and let go of some of this anxiety. Thank you for your multi replies and thank you for suggesting I post the entire study. As I wrote above to Rock Hinkle I think yall are on to something focusing on deep sleep depravation. It fits several of my problems. If I read the study correctly there were actually times when I stopped breathing while awake (I think study said ‘independent of sleep state’ - or something like that). I told my doctor that I would be online or watching tv and all of a sudden gasp for air because I had apparently been sitting here wide awake and not breathing. It makes no sense to me at all. Do you know if this would be considered a central apnea - to not breathe even though wide awake? It’s almost embarrassing to admit. How low on the evolutionary scale does one have to be to forget to breathe while awake - makes me feel like a rock. Thank you for sharing your wealth of info!

White Beard, Congratulations on getting your night sweats and night time urination fixed. My doc said same as yours - 90 days seems to be the magic number. One of my doctors said he had patients who felt 15 years younger a week after treatment started........ now wouldn’t that be fun. Thank you for your well wishes.

Sleepycarol, The pollen is terrible here. I hope your allergies are not getting bad. The severity of my headaches has decreased. I am going to turn humidifier up another ½ notch tonight. I do a Netty Pot with hot saline water - it can be helpful sometimes. Other times the only thing that seems to relieve any pain is hot sauce up the nose (or garlic juice). Funny how pain brings out the creative nature in some of us. Thank you for your reply.

Monica, You were right about the head gear. I got a new one yesterday at the medical supply company. Much better fit for my big head. As for sinuses, I am using Netty Pot Saline and I have gotten the humidifier up to 1.5 . When I took it to 2 water was dripping inside my nose. But I am going to try 2 again. I’m impressed you have your up to 4. And YES.... when I turn machine on my ears pop like crazy and the air pressure feels like it might make my eyeballs plop outt. I do the open mouth depressurizing thing a few times to fix it. I agree with you, I feel very lucky to have found this web site. I’m grateful for all that I have learned so far. Thank you for your reply.

Glen England, Yep part of the problem was head gear. I picked up a new style yesterday and it is no longer falling off my head. The old one was too small. When tightened it would fall off (slip off over my hair). I woke up several times finding myself holding the nose piece on my nose with all head gear off my head. New one is better. As far as the in and out pressure issue I have gotten much better with blowing out. My lungs must be getting stronger. Thanks for your reply.

Judy, You were right about the info overload. Combine feeling like cr*p and I thought I’d never get to a place where I wasn’t overwhelmed. But I am getting better day by day. Thank you for all the info you shared. I really appreciate it.

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Permalink Reply by Joannie J. Hassenpheffer on April 12, 2009 at 10:15pm

Hello,
I, too, have had trouble with headaches and I found that I had the heat set too high on my humidifier. For some reason this gave me a sinus headache similar to those I get when a storm is coming. If I lower the heat a bit it usually stops the problem. p.s. I had a reading of 125 per hour. Now I know why I was so exhausted all of the time. Phew! I am glad I got the help I needed. GOOD LUCK you will feel better just hang in there and experiment with things until they work for you.

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Permalink Reply by susan mccord on July 31, 2009 at 1:12pm

Is anybody still on this site? Looks like last entry was in April. Today's July 31, 2009.

I just started CPAP 2-3 weeks ago. Have been mostly off of it till a few days ago due to, I finally found out, the pump needing adjustment. Now I can tolerate the mask but I have a bad cold, am taking Nyquil after reading some message boards where people said "Do whatever it takes to stay on CPAP with a cold". I've been sleeping well x 3 nights now, with Nyquil, but I'm excessively sleepy when I wake up and have been taking off the mask after 7 hours and then sleeping for several more hours.

Is it possible that my body's so sleep-deprived that it's trying to catch up? I don't think it's the Nyquil as I've used it before (before CPAP) without this oversleeping issue.

I don't understand why there's so little info given re: the REALITY of dealing with CPAP. I've had a # of issues come up that would have been avoided if I'd had more education up front. It's a lot harder than I was led to believe. I'm NOT a non-compliant patient by history. I live alone and when these problems come up, it's always the middle of the night, at bedtime, and it's unnerving 'cause I'm afraid I'll do something wrong.

I just want to feel some semblance of normal again. My tech guy is great but he's very hard to get hold of. He always calls me back, but sometimes it's the next day. Today, they said he won't be in for 3 days. I haven't even seen a doctor yet--not scheduled for 3 more weeks. That makes no sense either. I feel like I'm out here twisting in the wind with no clear idea how to get answers. Anybody have any ideas re: the ovesleeping issue?

-Susan

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Permalink Reply by White Beard on July 31, 2009 at 3:07pm

Hi Susan
I have not posted at this sight for a very long time, I got an E-mail telling me about your post. Anyway I have been on XPAP since January of 07, and I have went from CPAP to CPAP with Oxygen to BIPAP with Oxygen to finally the VPAP Adapt SV with Oxygen. I have Complex sleep apnea. First off if you treatment is right, it can ( according to my Doctor) up to 90 days or longer before you will even start to feel a difference in your fatigue and extreme tiredness. You didn't get Sleep apnea over night and the symptoms of it will not go away over night either. So you do need to give it some time, From my personal experience, this is one of the most difficult things I have ever had to master! It is no fun donning a mask every night and hooking it up to the machine that blows a seemingly thousand mile an hour wind up your nose and down your throat! But believe me the results when they finally come are well worth the trouble! Yes you can expect to still be tired, but with that said if you don't get any relief after a few months then you should definitely go back to your sleep doctor and talk to him about it, you may need another sleep study or have your settings changed. For further information and help may I suggest that you try going to: http://www.apneasupport.org/index.php this is also a good forum and they also have allot of good information. Good Luck to you White Beard

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Permalink Reply by susan mccord on July 31, 2009 at 3:17pm

Thank you so much. You're my first responder and I very much appreciate your taking the time to answer. I'm particularly comforted by your saying how long it may take to get past the fatigue. Everyone around me, not apnea patients!, seems to think I should be up and at 'em by now. I don't seem able to make them understand that I'm trying but just not there yet. You helped me great deal today, so thanks again.
-Susan :-)

White Beard said:

Hi Susan
I have not posted at this sight for a very long time, I got an E-mail telling me about your post. Anyway I have been on XPAP since January of 07, and I have went from CPAP to CPAP with Oxygen to BIPAP with Oxygen to finally the VPAP Adapt SV with Oxygen. I have Complex sleep apnea. First off if you treatment is right, it can ( according to my Doctor) up to 90 days or longer before you will even start to feel a difference in your fatigue and extreme tiredness. You didn't get Sleep apnea over night and the symptoms of it will not go away over night either. So you do need to give it some time, From my personal experience, this is one of the most difficult things I have ever had to master! It is no fun donning a mask every night and hooking it up to the machine that blows a seemingly thousand mile an hour wind up your nose and down your throat! But believe me the results when they finally come are well worth the trouble! Yes you can expect to still be tired, but with that said if you don't get any relief after a few months then you should definitely go back to your sleep doctor and talk to him about it, you may need another sleep study or have your settings changed. For further information and help may I suggest that you try going to: http://www.apneasupport.org/index.php this is also a good forum and they also have allot of good information. Good Luck to you White Beard

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Permalink Reply by White Beard on July 31, 2009 at 3:33pm

Susan
It is easy to get discouraged with the CPAP treatment, ( boy do I know that!) so please be patient with yourself and your treatment. It can take some time and a whole lot of determination, you just have to continure to use your machine an mask every night all night long. There is (unfortunately) no magic fix for sleep apnea. ( no matter how I wish it were so!) Anyway I do support you in your effort, and if there is anything I can do to help you or make this any easier for you just let me know! I wish you success with this! and Good Luck to You! White Beard

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Permalink Reply by Marie Davis on July 31, 2009 at 4:14pm

I used to wake up with a migraine just about every morning....after 6 months of CPAP they are gone!! Have you had a CAT scan just to make sure you don't have a nose isssue that might be causing the migraines (i.e. polyp or deviated septum?) I suffered with migraines for years till I had sinus surgery.

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Permalink Reply by Mary on October 3, 2009 at 11:26pm

Judy said:

How are your sinuses? Stuffy? Irritated? Its not unusual for those NEEDING CPAP to have headaces but I've not heard of CPAP therapy CAUSING headaches.

There are what are called RDIs (respiratory disturbance index) which counts apneas, hypopneas and breathing episodes that don't quite develop fully into apneas or hypopneas so that there could be an RDI and an AHI w/different numbers. There is a "syndrome" (for lack of a better term) referred to as UARS (upper airway resistance syndrome - I "think" I have that right) that is only recently being recognized.

Your first in-lab night would have been the sleep evaluation study. Had they woken you up to put the CPAP on, it would have been what we call a split-night study. Actually, a full night of evaluation is the better for detecting the various sleep disorders as well as OSA. The second night in-lab was what we call the titration study wherein you do wear the mask and have the CPAP.

The 5 times stopping breathing as normal is actually 5 times PER HOUR (the AHI). A higher RDI is required to qualify as OSA. An AHI of 5 usually requires other symptoms of sleep deprivation such as a daytime sleepiness, exhaustion, etc., etc. I'm taking a guess the question you have regarding 30 vs 50 may have to do w/the AHI or the RDI numbers and their requirements.

One desaturation to 88% as your lowest desat was nothing to worry about. BUT, you can still have desaturations that don't drop below 90% and those desats can disturb your sleep.

Keep in mind, I'm just a patient myself, I am NOT a medical or sleep professional. I'm sure the doctor's dictated results (1-2 pages each) and the full scored data summary report w/condensed graphs (5+ pagaes each) will help to clarify things for you. There is so much new to absorb during the short consultations we usually or at least often encounter "information overload" and its hard to remember everything in correct context.

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Permalink Reply by Mary on October 3, 2009 at 11:40pm

I woke up on Thanksgiving morning after a Wednesday night sleep study and with the CPAP. I ended up feeling tired with a monsterous migraine like I had never felt before. I told the medical technician, but he just ignored my pleas for some help. The doctor and others had left to go home for the holiday. There was no place open to even buy some aspirin. My head hurt so bad, and I still felt really tired. I passed out and feel asleep at the wheel, and totalled my car on the way home by running into an SUV. Each time since, when I have tried using the CPAP, I have gotten a blinding migraine. Now the medical community is re-evaluating my sleep apnea. I was told that I have an RDI of 83, which means that I stop breathing 83 times an hour, but I still wake up feeling fine. The only time I feel tired is if I get less than 7 hours of sleep. I wake up to go to the bathroom about 3 times per night. I have a beverage addiction during the day. I am always thirsty, but not diabetic. When I put the whole mask on, my sinuses feel closed off and I get clostraphobic. When they put it on me during the sleep study, they had given me Ambien to help me sleep, and I don't even remember being fitted for the mask. Spent hundreds of dollars on a machine that gives me migraines. According to my new doctors, they said the pressure may be set to high on the machine. Since the technology has changed in the last few years, I may be a candidate for a different type of machine. It was a relief to know that I am not the only person who has suffered horrible headaches from using a CPAP machine.

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Permalink Reply by susan mccord on October 3, 2009 at 11:50pm

Hi Barbara--first off I want to say is this is EXACTLY where you should be when you're sleep-deprived and feeling whacky. That's precisely the way I was after being diagnosed severe OSA the end of June 2009. Ask anyone who stuck with me on SleepGuide, and there were a # of them!, I was a mess. If it weren't for SG, I don't think I'd have made it into treatment, nor would I have stayed in treatment. I'm doing MUCH better now. So bring it here--you won't be sorry!!

Re: level of acuity--my sleep study folks diagnosed me as "just over the line between moderate and severe" at 51. When I saw my sleep doc, a couple of months later, he told me that they measure acuity differently than the sleep lab does, different counts or something, and that he would diagnose me as moderate with the same lab results. So who knows?? Bottom line is, apnea makes us sick as hell, and it doesn't always have much to do with what level you're on. You'll know what I mean as you listen and learn about people's various stories on SG.

My CPAP was initially set on 9--sleep doc increased it to 10 with no range. I don't think that's an extremely low #. Anyway, it doesn't matter WHAT the # is if it's effective and alleviates your symptoms. From what I understand here, TOO high isn't better. And frankly, my sense of it is if I can manage on a lower #, I may not be in as much trouble as someone may be who needs a very high pressure. It's also related to neck thickness/weight/etc.

Re: headaches--I had them too, along with a lot of stuffiness vs sneezing when I started on CPAP. What helped me was to increase the humidification on my machine. That's made all the difference in the world. I still occasionally wake up with a headache but not nearly like I did before. Drinking a lot of water helps me too.

You don't have a split personality!!!!!!!!!!! And yes, you do have sleep apnea, or you wouldn't have a CPAP ordered.

Also wanta say, GOOD FOR YOU that you've already picked up on the need to have ALL your lab results in hand. Someone would have been telling you to do that in about 20 minutes if you hadn't!!

You're going to appreciate this site in ways you can't imagine. Great people, both patients and sleep professionals. Happy to have you with us!!

Susan McCord :-

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