unsuccessful sleep studies

[also sleepless in seattle]

Hi
LONG!
I've had two sleep study's done but they are inconclusive because I'm not able to completely relax (anxiety disorder) despite lack of sleep the previous night and yet, and fall into a deep enough sleep. When I did fall asleep for a few minutes they said I immediately had apnea moments.
My husband, however, can attest to the numbers of times I have apnea moments, rising up in bed, gasping, coughing, flipping over and etc. as well as the amazingly noisy snoring. It happens whether I'm on either side, on my back or even sitting up in a recliner.
I have morning headaches, dry mouth, and I nod off taking anywhere from 3 second to 3 minute naps during the day (and have since I was in my late teens). I'm now 53 and it's getting worse. My MD says he feels strongly it's sleep apnea as does the sleep doctor...but without the evidence...
So...having said all of that...
Has anyone purchased a CPAP or APAP unit online, from used sites such as craigslist and done self titration? (I know, I know, it's not the best/accepted/perhaps even smart way, but I've been sent away from sleep clinics twice now without enough deep enough sleep for them to give an accurate diagnosis.

Any ideas?

[Muse-Inc]

...fall into a deep enough sleep...

That's nuts! I only slept a little over an hr with no deep sleep (Stage 3 or 4) and no REM and lots of hypopneas. With CPAP, I slept a little longer and they titrated to a pressure that eliminated most of the arousals and all the hypopneas. They said I sorta coasted in and out of sleep for most of the first portion of my sleep study...a few secs asleep then aroused again. I was diagnosed as severe. My EEG was a mess! If I were in your shoes I'd ask for the results of both studies and read 'em myself and then ask questions here.

Yes, you can buy equipment online but without a good knowledge of the equipment and most importantly the results of those supposedly 'failed' studies (they had data of some sort, did they not offer you a sleep aid?), it might not be recommended. There are apneas called centrals that need special consideration, so you need to know if they detected any -- they did wire your head right?

[also sleepless in seattle]

I'll ask for the study results. They said things like "We saw only 8 spisodes but they weren't (I forget) enough to make us" bla bla bla. I was so aware of being not asleep that at one point I ended up twiddling my fingers. I was wide awake. I knew it, the sleep study guys knew it. sigh
They wanted me to sleep on my back and kept telling me to try and do so. I never fall asleep on my back although I end up there during the night. So that made me also not want to really fall asleep. It wasn't natural. The experiences made me crazy.
I'm in the Seattle area. Before I try a sleep study again, I want to call around and see what people can offer me. I can only have one study per year.
It just makes me want to buy a used APAP and do it myself with the help of my husband. Grrrr!

[Julie]

The point of sleeping on your back was so they could calibrate a "worst case scenario" baseline for the future, as apnea is known to be worse if you're on your back, and many of us go to great lengths to not sleep that way, but the lab wants to know what would take place if you did sleep that way.

[Rustyolddude]

You could look into having a home study done, it's not as comprehensive but may yield better results, less expensive than the sleep lab. There is also a device you can wear for one night designed to detect sleep apnea, it's called a Sleepstrip http://www.accutest.net/products/sleepstrip.php it's not a substitute for a comprehensive sleep study but it might provide enough evidence for your Doc. to pursue treatment.

[BeanMeScot]

If you doctor is that convinced you have apnea, have him/her write you a prescription for a machine and order it. There are others here who have done it. I would get an APAP so you can self titrate but it can be done.

[Gerald]

If you want to do this on your own.....and you're convinced that there's a problem......you can "self-titrate".....at home....in the comfort of your own bed.

Here are my suggestions of the preliminary steps:

1. Research on this forum "self-titration"
2. Decide if it's worth about $1500.00 out of your own pocket to purchase good equipment
3. Write the text of your own prescription (we'll help you with the wording)
4. Hand the proposed prescription to your doctor......and ask him to give you an "official" prescription written as you have requested
5. Determine which equipment you want to purchase (we can help you with suggestions)
6. Send the prescription to CPAP.com and order your equipment
7. Use logic, reason, testing, and intellectual honesty (the Scientific Method) to determine for yourself what machine settings are best for you

All this isn't "rocket science".......it's much easier than scuba diving.......and there are plenty of nice people on this forum who are happy to help you.

Gerald

[Pugsy]

I purchased my machine from an individual off of craigslist. It had zero hours on it. I also had very, very little sleep during my sleep studies.

You can self titrate with caution. Obviously not the best of solutions but if it is the only solution it will have to be sufficient. You must really educate yourself on what is involved.

You must have an auto adjusting machine (APAP) similar to my Respironics M series Auto unit or the ResMed Auto Set II.
You absolutely must have the software for whichever machine you get.
ResMed software is not available in the US but can be purchased from Australia.
Respironics software easy readily available in the US.
Both software packages require the additional purchase of a card reader to get the data from the card to the computer.

Online mask sources are beginning to require written RX for CPAP so you have to decide what mask you want and maybe find source that doesn't require Rx or buy privately.

If your private physician will write a prescription for CPAP machine and let you self titrate, you can use that Rx to purchase machine and supplies online here at cpap.com. The Rx can come from any physician, doesn't have to be the sleep center doctor.

Send me a private email with your private email address and I can give you ideas on self titration since my sister is going to be using my machine to do just that. I just am waiting to get a back up machine for myself so I don't have to do without. I can help with the Respironics machine questions since that is what I use.

[Gerald]

Thinking over my earlier suggestions.....you might want to take an "extra step".....

Go to turnermedical.com and purchase a SPO-7500 recording pulse-oximeter....and test your night-time O2 saturations...for a couple of weeks or so. This step does not require a prescription.

After 15-20 nights, you'll have a stack of reports that'll clearly show you whether you're suffocating (that's what apnea is....suffocation) or not.

The cost of the SPO-7500 is about $409....including the software. The Turner people are safe to do business with, the product is good, and you'll find the knowledge you accumulate with it to be very valuable.

By checking your O2 levels first, you're not spending a huge amount of money.....you'll get an indication of what your problem with apnea really is.....and you'll have a good tool that you can use for a long time.

My SPO-7500 has helped me....my honey.....and two of my friends. Rather than take a sleep test, my honey and my friends determined in advance that they needed help.......and they all went on to purchase good CPAP equipment.

Finally, the advice Pugsy gave in the previous post is correct......good thinking!

Gerald

[Muse-Inc]

OK, now that I'm not so nuts over how you've been treated...rather failed to be treated...here's a suggestion. If you try for another sleep study, check this site http://www.sleepcenters.org/ to be sure the Sleep Lab is accredited. You stand a better chance of an effective Sleep Study at an accredited Sleep Center (lab). IMHO, you were treated in a non-professional manner; if you weren't able to sleep, you should have been ofered a sleep aid. That "lab" failed you -- and the doctor who relied on them for test results -- not once but twice.

I second Gerald's suggestion about getting a recording oximeter. When I have the funds, I will purchase one because it allows you to determine if you're experiencing oxygen deprivation when you sleep and if so how big the desaturation is. Ideally, ypur blood oxygen saturation is 98-99, when sleeping above 93% but with apnea it drops. All of us diagnosed with apnea should occasionally monitor this, especially if our AHIs rise or we start experiencing apnea effects again.

Your anxiety MAY be the result of chronic untreated apnea with its resultant sleep deprivation. When our brain is starved for oxygen, it changes and not for the good. When you don't get restful deep sleep and REM, the effect on the brain is significant. Mood issues inevitably occur.

Good luck on finding resolution!

[Gerald]

What Muse-Ink is telling you is good information.....but, I respectfully disagree about the "accredited" sleep centers.

Last week, I went to a sleep center that is accredited by the outfit Muse-Ink mentions....and my "sleep" test was a failure. It was more of an "awake" test than a sleep test.

The tech was wonderful....very competent...but the facility was horrible. Their mattress was the worst I've ever tried to sleep on in my life. I've had better sleep on a straw mattress (once in Costa Rica and once in Stockholm) than I had at that sleep center. The air conditioning was awful.....and the wires were so poorly managed that I couldn't turn. Compared to Motel 6, I consider this dump equivalent to a "Motel 2-3/4". These people were great at monitoring their patients all night....but they weren't smart enough to put together a facility that helped their customers actually sleep. The results from their "sleep" tests are negatively affected by their poorly assembled facility.

So, I can have great empathy for you....and I don't think trying another sleep center will do any good. I think you'll have to do this on your own....with the assistance of your GP (or ANY doctor who'll give you the needed script).

Gerald

[carbonman]

Hi
I've had two sleep study's done but they are inconclusive because I'm not able to completely relax (anxiety disorder) despite lack of sleep the previous night and yet, and fall into a deep enough sleep.
Any ideas?

Did anyone suggest giving you an ambien for the sleep study?
I would have never been able to sleep at mine.
1 ambien, out like a light.
Dual study. 5hrs.

.....yooooah, out'a he're!

[also sleepless in seattle]

Wow. I appreciate all your advice!
I have a very cooperative doctor who I believe will write me a prescription. He readily sent me to the sleep disorder clinic and was also disappointed in the results. I didn't really persue it with him. But I will now.
To answer a couple of questions. The sleep clinic is associated with a very large medical system. The staff were friendly and a lot of time was spent with me. The room was nice, clean, even decorated nicely. And the bed was comfortable. It was me. I only repeated the test a year later because I thought that maybe I'd be more relaxed the second time.
To self titrate sounds excellent. I knew there had to be a way.
I'll be back in touch as I get ready to purchase one and as I begin to self titrate.

Thank you all, so much!

[BlackSpinner]

Hi
I had all my sleep studies done at home. I was given complete instructions (better then by the dme ) and told to bring the devices back in the morning. It measured apneas and oxygen levels. This was used to prescribe a cpap and a estimated level for its setting. Then I went back and got another one done with my comfy mask and their special machine and oximeter. From this the titration level will be set. They only do in lab sleep studies here if they feel the home study is not giving enough information.

It is nice, not as many wires, your own bed. For the majority of people is is more then sufficient to diagnose and prescribe - of course sleep centers don't make as much money off it.

[rested gal]

I have a very cooperative doctor who I believe will write me a prescription. He readily sent me to the sleep disorder clinic and was also disappointed in the results. I didn't really persue it with him. But I will now.

You're on your way to success. You're planning to do for yourself what I did for myself:

Jan 25, 2005 subject: not diagnosed yet, many ? brand new here my story and Poisson's reply with good reasons why a PSG sleep study is important.
viewtopic.php?p=5977#5977

If you'll register (it's free) as a member of this message board, people will be able to send you Private Messages. If you'll PM me your email address, I'd like to email you some suggestions.