Newly diagnosed with severe OSA

PhillyPat · Post by **PhillyPat** » Mon Nov 14, 2005 11:22 am

Hi. A little over two weeks ago, I had my first sleep study and was diagnosed with Severe Obstructive Sleep Apnea with Hypersomnia that is associated with severe O2 desaturations to the low of 60%, Periodic Limb Movement Disorder and moderately abnormal sleep architecture with severely reduced REM onset. I was stunned, because I am not young (nor old, for that matter!) but have a number of chronic health conditions and have been under a (or should I say, quite a few) doctor's care for many years. I have had my complaints of fatigue, inability to concentrate, and brain fog, dismissed or blamed on numerous things--everything from lack of exercise (not!) to menopause to depression to recovering from surgery, illness, etc. This is the first time I have really had someone address the issue of why I am so tired!

On Sunday evening I go for a CPAP titration. I know answers depend on individuals. What I would like to know is what are the questions I should be asking when I finally go for the titration and even more when I finally get to discuss this with a doctor in person? This is all new to me. I'm a little concerned about the whole mask business because I have had panic attacks when I have had the mask put on for anesthesia. Between sinus and allergies, my nose is frequently not functioning as it should, so I tend to be a mouth breather. I don't know whether that will affect things.

I have been reading postings on this and some other websites and trying to get as much information as I can. You all seem to be very caring and helpful to newbies, so I would appreciate whatever advice you can give.

Pat

yardbird · Post by **yardbird** » Mon Nov 14, 2005 11:43 am

I can't address all your questions but I may have some input on a few...

I was diagnosed at 48. My WIFE was losing sleep as she was constantly shaking me to get me breathing again through the night. During my sleep study I think they told me I stopped breathing 78 times. My oxygen level got so low that they were about to give me oxygen. That's just to give you a picture about SOME comparison.

Be sure to express your concerns about the mask. I was sent home with a mask and headgear that was just intollerable. Hose went up between my eyes, LOTS of coverage of my head with headgear, VERY hard to get out of it when I had to get up to pee and even harder to get back into it in the dark. I stopped using my CPAP because of this.

Now there are MUCH better masks (what did *I* know?... they said, "Here's what you need" and I didn't know any better). Masks with minimal headgear. Masks that are MUCH easier to get in and out of. Masks that DON'T make you feel like some large, taloned, claw is gripping your head and trying to smother you at the same time. Yes... I had anxiety attacks too.

Using my CPAP.... I haven't had an anxiety attack in years. Was it the CPAP that made them go away? I don't know.

You may also find that in regard to your nasal concerns, that a proper CPAP setup with controlled humidity and filtration, that you actually get RELIEF at night and sleep better while breathing through your nose. Your mileage may vary, but this does NOT seem to be an uncommon occurence.

If you can't escape being a mouth breather you STILL have lots of options. Make sure you talk to whomever you're dealing with about your concerns. You need a combination of equipment that works for YOU because if it's intollerable... you won't do it. I speak from experience on that one. If you get something and go home and give it an honest try and it's not working then you call them and TELL them it's not working and ask them to change something.

It's YOUR treatment. It's YOUR therapy. They need to tailor it to suit YOU... within reason of course. But don't be afraid to simply speak up. I didn't... because I didn't know ANYTHING about apnea at the time... and as a result I almost had to put an addition on my house so my wife could have her own bedroom!

Sounds to me like you're a candidate for seeing great improvement in your life if you can weather the initial "oddness" of something that's new to you.

Guest-Ramona · Post by **Guest-Ramona** » Mon Nov 14, 2005 12:57 pm

Don't worry about the mask. I am so claustrophobic that I sometimes have to roll down my window while I'm driving. And I wear a full face mask. Air is being pushed into your nose (and mouth if it's open), so you won't suffocate. For stuffiness, mix 1/2 teaspoon and a pinch of baking soda into 1 cup of warm water. Fill a nasal aspirator (or in my dictionary...a blue bulb thingy!), with this solution and just barely insert it into your nose. Point the tip toward your ear and squeeze. Not the most fun thing I do and I sure don't let my husband see (not exactly romantic looking, ya know), but wow, I can sure breathe after a nasal irrigation! As yardbird said, you have many options. There are a lot of different types of masks and nasal pillows out there. Good luck...you'll do fine!

PS: Don't you just love doctors who explain away their laziness and/or lack of knowledge and skill by telling you it's menopause!

Colorado Jan · Post by **Colorado Jan** » Mon Nov 14, 2005 2:05 pm

I can relate to what you are saying.....for years and years and years I've been telling my doctor at my yearly physicals that I was exhausted and had no energy EVER. No one listened to me. Finally I was in the hospital for an unrelated surgery and they noted that my oxygen levels fell to the 50's and 60's when I slept. AND, they just shrugged it off!!!!!!! So I had to demand a sleep study when I recovered from the surgery. Oh, yeah. AHI of 85 and yes, oxygen levels were down to the 60's again.

Sometimes you just have to take your own medical care into your own hands and INSIST that certain tests be run. Just amazing, isn't it?

Wishing you the best of luck!

Jan in Colo.

Bonnie · Post by **Bonnie** » Mon Nov 14, 2005 2:13 pm

When I went for my sleep study I fell asleep fast despite all the wires. The lab techs were very nice. They showed me the mask before I went to sleep, had me try it on and explained that it would be used during the 2nd half of the study. When it came time to actually do it I freaked, anxiety, panic and claustrophobic all in one. When I went to the doctor afterwards he prescribed a cpap with a setting of 7 and suggested I take my time and get use to it and then do another titration study. For the first 2 weeks I slept in my chair with all the lights on and the TV going. I'd wear it for a few minutes and kept up the mantra "this is helping me live" I sometimes would sleep for an hour and wake up with it in my hand!...lol The first time I slept for 4 hours I felt reborn the next day. Now to most people 4 hours is nothing but to me it was heaven. I exchanged the mask to the Swift and found it to be more to my liking especially since I am an avid reader and can put on and take off my glasses easily without having to take off the Swift. I felt my big breakthrough was when i was finally able to sleep in my bed for a whole night getting up only once for the proverbial trip to the bathroom. I guess the main thing I focused on was this machine is the only thing saving my life and I better make it my new best friend. It is and I'll never look back.
Good luck and remember, there are always caring people here to help you through things.

Guest · Post by **Guest** » Mon Nov 14, 2005 3:37 pm

Thanks guys for your quick responses. I've just come from another meeting in which I have struggled to stay awake and alert. I can get away with yawning until tears run down my face at my desk and actually falling asleep, but it doesn't go over well with the VP in meetings. I really hope this will make a difference. I am looking forward to the titration from the standpoint of seeing if it resolves some things, while at the same time dreading the mask. You have been very reassuring about being able to get over the panic. Pat

greyhound · Post by **greyhound** » Mon Nov 14, 2005 4:45 pm

PhillyPat,

I fully understand your problem with nasal congestiion. I've also got allergy related sinus problems, along with recurring nasal polyps. So, I know, too well, what it's like not to be able to breathe through your nose.

I'm going to order my first cpap on-line tomorrow and have decided to order both a Swift nasal pillow and a Resmed Ultra Mirage full face mask. Hopefully, I'll be able to use the nasal pillow most of the time and the full face mask only when my nose is completely blocked.

During my second sleep study, I successfully used a nasal mask (with humidification), even though my nose was partially blocked. So, I'm encouraged that the nasal pillow will be my primary "mask".

Good luck!

Dan01 · Post by **Dan01** » Mon Nov 14, 2005 6:08 pm

You may want to stay up late the night before the study and wake up early. This way you will be tired.

The mask is important. I have bought several masks on CPAP.com. I also bought my machine here. I use the humidity most of the night. I also like the Activa mask best. There are some good full face masks also. Here is a comparison article:

http://bestsyndication.com/2005/Dan-WIL ... -masks.htm

The best machine is the CPAP machine made by Respironics with C-Flex and heated humidifier. I got the card reader and software and check my data from time to time.

Goop luck. The only danger to CPAP in my opinion is not using it. Use it every night all and during naps. It could save your life and allow you to live longer and better. 1 in 5 men have OSA and 1 in 10 women do. You are lucky to know about it.

Dan

PhillyPat · Post by **PhillyPat** » Wed Nov 16, 2005 10:02 am

Boy, this forum moves fast! I had to go for the nuclear stress test and some other heart related things yesterday and spent most of my day at the hospital again. It frustrates me that they won't tell you anything but that the results will be sent to your PCP. Anyway, thanks to those who also replied. I may be able to get in tonight or tomorrow for my CPAP titration. I hope so. I'm to the point where if I don't get something resolved soon I might just quit my job and become a bag lady. All I feel like doing is staying in bed, but I never feel rested no matter how long I sleep. The only thing is I can't give up my medical insurance! We are trapped!!! Pat

yardbird · Post by **yardbird** » Wed Nov 16, 2005 10:52 am

HEY! I did a nuclear stress test a few months ago! hehehe... ended up there were still some questions so went for an angiogram, but... all clear!

HOWEVER I was still getting PVCs (like a pre-beat in one chamber of the heart). TOTALLy non-life-threatening they tell me. HARMLESS... yeah? Well why don't YOU get 'em for a while and see how they FEEL? They feel awful when you string so many together that your pulse feels like it's at half speed.

ANYWAYS....
The GOOD news is... even though I'm not 100% compliant on my CPAP (sometimes I just fall asleep watching the news and forget) ...I'm about 86% compliant... working towards 100...
My PVCs are nearly gone!!! And the ones I still have are nearly undetectible (by me). SO.... is using the CPAP making them go away? I honestly believe it's helping. How could it NOT help to have more even oxygen levels? How could it NOT help to be more rested? Why am I even telling you this?

heheheh... well you mentioned the heart stuff and here's hoping that if you get your CPAP straightened away... you might have a positive affect on other stuff as well.

WHO KNOWS how intertwined our symptoms are when we're multi-symptomatic? It could have a snowball affect to gain control of one aspect and find out it positively affects something nobody knew was related.

My sincere best wishes to you.

Guest · Post by **Guest** » Wed Nov 16, 2005 11:13 am

PhillyPat,
I can so relate to the staying in bed feeling. Before being diagnosed I was so unbelievably tired all the time. I'd wake up in the morning, grog around for a while and maybe do the dishes. I would then have to take a nap! I work 2nd shift and literally took 3-4 naps everyday before going to work. When I started falling asleep at my computer (and probably snoring REAL loud) I knew I had to do something. I was afraid to go to the doctor, I am a cancer survivor and was fearful this had something to do with a re-occurrence. I went and the rest is history. I'm so glad I finally am able to live my life again. Someone who doesn't have apnea can't truly understand what TOTAL EXHAUSTION is.

Bonnie · Post by **Bonnie** » Wed Nov 16, 2005 11:17 am

Oops, I hate when I forget to log in....gotta keep that post count going, I should be at Lori's number by, maybe summer of 2010 So I'm added "1" to my total for the above post!!!

Barnaby · Post by **Barnaby** » Wed Nov 16, 2005 11:32 am

PS: Don't you just love doctors who explain away their laziness and/or lack of knowledge and skill by telling you it's menopause!

_________________

Hey Ramona...i never had a doctor tell me THAT!!!!!

Barnaby

ProfessorSleep · Post by **ProfessorSleep** » Wed Nov 16, 2005 1:24 pm

I've got a similar situation - have a lot of trouble using a regular nasal mask since after about 4 hours I'm so stuffed up I can't breathe any more. I only use one on occasion just for a break. My usual mask is a Swift, sometimes an Aura, and oddly enough, I breathe more easily and clearly with the pillows setup than with no cpap at all! It actually helps with the congestion! Yes, I do use HH, set on 2-3 depending on the weather. In summer, less so, in winter 2.5-3. I also am severel, *severely* claustrophobic and had great concerns about the mask. Much to my surprise, however, it really hasn't been a problem. The air moving makes a big difference in comparison to the usual feelings of being in a confined or enclosed situation. good luck to you!