Scared a bit when going to bed

[Mark649]

First let me say you folks on here have been awesome and again thanks. I was recently diagnosed with severe sleep apnea. I have a titration appt scheduled for the end of June. Every few weeks now it seems I wake up once during the night and feel like im smothering and have to catch my breath. Now I find when going to bed I am real nervous I wont see the morning sun YIKES. Is this a normal feeling. Can someone advise or does someone have any suggestions between now and the time of my appt in a few weeks
thanks
Mark

[ozij]

It's normal to wake up gasping or breathless when you have severe obstructive sleep apnea.

It's normal to be worried and frightened when you're diagnosed with "severe" anything.

You could call the clinic and ask to be put on a standby list, so they can call you or titration sooner, if they have a cancellation.

You may be nervous becase your brain knows you're going on for another oxygen deprivation session at night. Do you have recliner that you could consider sleeping on? Or another way of having your head and torso high when you sleep?

The majority of OSA patients don't die suddenly of a longer apnea. The majority wake up again and again and again - resuming breathing, but incurring more and more damage nightly.

Have people with OSA died in their sleep? Yes. Will that happen to you? Maybe your doctor - who knows your medical condition can set your heart at rest.

Good luck,
O.

[Sleeprider]

Like yourself, I was diagnosed with severe OSA at a sleep center, and didn't have the titration study done on the night of the polysomnology exam. I don't sleep well in sleep lab and had a very disrupted and delayed onset for sleep.

Once the diagnoses of severe apnea was made, my primary physician had all the information necessary to prescribe an "auto cpap with auto titration and supplies". That was later modified to include a heated humidifier. The decision to issue an APAP saved thousands of dollars in costs of doing a titration study, and got me into my equipment earlier. The doctor's script was provided to the DME (Apria) and I was issued the Remstar Auto with Cflex.

The reason I relate my story is that I was bouncing back and forth between my primary physician who referred me to an ENT specialist, who in turn referred me for the sleep study, who in turn recommended a trial on auto cpap so that a titration could be determined. Once you have gone this far, it is only logical to short-cut the process and just issue the equipment that has all the capability to either deliver variable pressures, or be set at whatever titration is ultimately deemed appropriate. If your case is similar, talk with your primary physician and suggest that since you already have the severe apnea diagnosis, you immediately qualify for the prescription of a CPAP. By prescribing an Auto CPAP with data capability, you can get your therapy sooner, and generate the data to assist your doctor, or the sleep center evaluate the effectiveness of that therapy. As a consequence, you will actually save thousands of dollars of cost of performing a titration study. You shouldn't need to wait and experience further discomfort since you already know all you need to, in order to be issued therapeutic equipment.

Good Luck!

[Shilohcane]

I'm not an expert but I was diagnosed with severe sleep apnea about 5-6 weeks ago. I went through my 2nd night titration and haven't heard a word from any DME. I have called my Sleep Center four times and was told 13 cm was my pressure and someone would call me to look at cpaps. After a week when by and no calls from a DME, back to my normal Doctor that sent me to the sleep center and got him to write me a prescription for an Apap. So far he is the only Doctor I have seen or talked to and he doesn’t even know what an Apap is. All the information and what I have learned has only come from reading this board. By the way my 13 cm I got from the titration test was wrong since my Apap has given me great results when it automatically adjusted me to 10-11 cm depending on how tight I put my mask on.

If I had it over to do again I would take the 1st sleep Apnea report to my doctor and ask him to write the prescription for a Apap ( not cpap) then buy one on-line and get on with my life. Still waiting on that call from my DME.

[gasp]

Until you receive your equipment, you could try sleeping at an incline, or in a recliner that would position you to where your throat remains open.

This may help you breath better.

Best wishes.

[Goofproof]

I'm not an expert but I was diagnosed with severe sleep apnea about 5-6 weeks ago. I went through my 2nd night titration and haven't heard a word from any DME. I have called my Sleep Center four times and was told 13 cm was my pressure and someone would call me to look at cpaps. After a week when by and no calls from a DME, back to my normal Doctor that sent me to the sleep center and got him to write me a prescription for an Apap. So far he is the only Doctor I have seen or talked to and he doesn’t even know what an Apap is. All the information and what I have learned has only come from reading this board. By the way my 13 cm I got from the titration test was wrong since my Apap has given me great results when it automatically adjusted me to 10-11 cm depending on how tight I put my mask on.

If I had it over to do again I would take the 1st sleep Apnea report to my doctor and ask him to write the prescription for a Apap ( not cpap) then buy one on-line and get on with my life. Still waiting on that call from my DME.

You have handled things in the wise way. Mark649 would be wise to do the same, waiting for the system is not healthy. Jim

With a FF mask you avoid mouthbreathing problems.

[pjwalman]

I was the same way, Mark. Once I was actually diagnosed with severe sleep apnea, it somehow made everything real and more urgent, and I was scared to death to go to sleep between receiving the diagnosis and when I got my CPAP machine. I just told myself that obviously I hadn't developed the severe apnea overnight, had been surviving many nights before this without a machine, and there was no reason that suddenly, now that I had the official diagnosis, I was going to croak in my sleep. I'm not saying I wasn't still freaked out, but I figured the odds weren't very high that I'd have that crappy of luck to expire before I finally got the treatment that could hopefully drag me out of the awful nights waking up gasping, heart pounding, feeling like I couldn't get a full breath for a good hour, two hours sometimes before I could calm down enough to go back to sleep. I had a prescription for Ambien but reacted strangely to it, so then I moved to Unisom or Benadryl to relax me enough to get through the panic of the nights. Maybe that's something you could try if you haven't already.

And, as the others have said, it may be that you'll have to stick your nose into things a little more than you're comfortable with to get things going. Honestly, I never anticipated how much I would have to be proactive in this CPAP stuff to get what I needed. And frankly I've made some missteps along the way that have been costly financially. Most of us are used to being obedient sheep with the medical community, but that will get you nowhere in this new land of DMEs and doctors that don't give a hoot about data capability for their patients as they figure they know it all and we should have no need to monitor things on our own.

Take care! I hope you get your CPAP soon! And I hope you will be one of the lucky ones that takes to it like a duck to water and you will sleep well from Night One with it...but, if not, come on back. There's loads of information in the brains of the lovely people on this forum.

Peggy

[alnhwrd]

Get your Primary Doc to write you a prescription for a machine. An auto, even set to a broad range, would give you treatment. Or, I saw a nifty looking Vantage on craigslist if you want to take a chance . If you have severe OSA, you need to be treated ASAP.

I was diagnosed with severe OSA, too. The two weeks it took for the DME to get its rear in gear and deliver my machine were terrible, made worse by the fact I had the first decent sleep in years during the second half of my sleep study, so I knew what it could feel like. I would not go a month without CPAP. The thought of even one night off the machine scares the daylights out of me.

[joey777]

I feel for you Mark. Same here. It's pretty terrifying. I got my APAP but I still get those damn things. Hasn't helped. In fact made it worse. I hope it works for you. The way I look at it now is I was this way for quite some time and haven't kicked the bucket yet. If god wants me than that's the way it is. This whole Apnea saga is hard to handle sometimes but remember your not alone we're all in the same boat.

[skjansen]

I suggest you sleep on your side rather than on your back. If you find this difficult to do, use a rubber band and tennis ball on the back of your night shirt to keep you from rolling over on your back.

I also suggest you be proactive in getting the cpap machine you obviously need. I do not understand why there is such a lag time between being diagnosed and getting treatment. My sleep doctor obviously did not have sleep apnea. or he would have understood the urgency and gotten me treatment sooner!