Is a sleep study really necessary?

[bwell]

I was recently diagnosed with sleep apnea. My new doctor suggested I have a diagnostic test performed by a local pulmonary support company. I wore a device on a finger overnight and the results per my physician were pretty severe. I'm 53, struggling with thyroid deficiency and anemia, low energy, fibromyalgia. I do snore and am up and down all night - haven't slept well for years. Doctor says losing weight would/might eliminate issue so I'm working on that...

I was resistant at first, but consented to oxygen (machine and standard nose cannula) but after a month really felt rather ill. Deep chest cough and overall - well just like a hangover! I stopped using the oxygen about 2 weeks ago (after a month of use) and I have to say I really feel much better. I did try using a humidifier in the room and it helped but not enough.

I had started reading online and was amazed at what I am beginning to learn about my collection of ailments and how they could be related to the apnea. I was very discouraged at what the oxygen cost ($553 mo to my insurance co or $150 cash from me). I went with the cash option as I have a HSA and huge deductible but then was really annoyed to find the same oxygen machine on Amazon for $600!

Economy has had it's way with me like everyone else so I think the pulmonary people in an effort to help me just closed the deal and put me on oxygen. I never did hear how much a sleep study and their "package" would run me,but after reading several reviews - I found a new, basic machine for a great deal online and purchased it with a swift lt for her mask. I got it a week ago and tentatively tried it out after reading a number of posts here online. Machine pressure is set at 10 and has a built in humidifier (I've got it at setting 3).
Not sure if I'm foolish to go it alone without the study/professional advice on the pressure setting (I'll see my doctor again in two weeks and ask her to counsel me here so I'm hopefully not being too adventurous). It's only been about a week - haven't made it through the whole night but I do think it helped! I'm a mouth breather I guess, but the nasal pillows are a little tricky with my not terribly round nostrils but my pointy nose is NOT enjoying the pressure of the mask - its fine except for mushing the tip of my nose (ow!). I'm a side sleeper, have a tempurpedic so I don't move around too much. The cpap is quiet, hose isn't much of a problem.

So finally, a few questions for the resident gurus here:
1. Am I being foolish to wing it? I wasn't too impressed with the limited consult I did receive from the pulmonary company who apparently works hard to sell sleep studies to my doctor...
2. Can my doctor really give me good advice on pressure settings or do I have to find a a sleep professional (I'm ready to be convinced that it's worth an investment - from all the posts I've read it seems to be more of a try and try again adventure for each person).
3. I'm very interested in reading more about the thyroid, fibromyalgia improvements that people have briefly mentioned here. I've been fighting pernicious anemia for YEARS and now that I've read through so many of your posts am beginning to grasp the connections to decent sleep here.... Can anyone point me to more resources on the thyroid connection in particular? It does now make good sense that fibromyalgia would result from OSA....

Oh well, lots to learn. I'm a good researcher and thank you all for making the effort to share so much in these forums. Hoping for some sage advice...

b*

[patdart]

Were I you, I'd have the sleep study done by a pro. I had one more than a year ago and then, after much trouble with a blood condition, I had the titration study done and I'm much better. I was producing too many red blood cells and had a small stroke...or, I had a real stroke, but luckily with minor consequences, thank God. It seems that I have both COPD and apnea and they combined to most likely cause the stroke. The titration study was needed to determine what I needed to treat the apnea and altho' it's only been a couple of months, it is working to correct the blood condition. "Winging it" could be more costly for you in the long run.

This is a process, not a one stop deal it seems and much can be learned from the study. If you aren't happy with the consultant, can you find another from friends or associates...one they recommend? Maybe even the doctor can advise you? Also, there are now home tests that can help you I read, so that would be yet another way to learn just what you need at less cost. In any case, take care of yourself as best you can and get all the help you can now, not later.

Good luck,

patdart

[Julie]

Hi, a sleep study by a certified lab with licensed techs is important for you because you're dealing with too many issues and not sorting them out well. A proper study will pick up on many things apart from just apnea, as other sleep related disorders can be involved as well, and getting the right prescription, not to mention the right mask and oxygen desaturation reading, does matter. Fibromyalgia is not caused by OSA, whatever you've heard, though as with any condition that's out there, can certainly accompany it, and symptoms of both (as well as thyroid problems) will show up in criteria lists for many conditions. You cannot treat yourself based on internet tips, or opinions from MD's not trained in sleep, or thyroid, or fibromyalgia type of disorders and need professionals to sort things out.

[pdean44]

I would think that having a titration done by professionals is the best way to go in order to get accurate data on where you need to be. For those struggling with serious health conditions on top of apnea i would think it warrants getting the most accurate data you can in order to properly treat yourself.

[roster]

I found a new, basic machine for a great deal online and purchased it with a swift lt for her mask. ....

1. Am I being foolish to wing it?

b*

From the way you write, you certainly sound intelligent enough to do it with help from forum members. However, even intelligent people make mistakes and you made one right up front - you did not get advice on what machine to buy.

You jumped at a "good price" on a basic machine. There is no "good price" on a basic machine for the purposes of what you want to do. You need a data-capable machine so you can know what is happening to your breathing at night.

My suggestion is to pick out a different machine and sell the one you purchased or keep it as a backup once you have determined the settings you need.

[DreamStalker]

As others have already mentioned. You cannot wing it without useful data. The machine you have listed only provides "compliance" data which is useless. You need "efficacy" data like pressure, leak, obstructive events, etc.

It would be like trying to wing diabetes treatment without a glucose monitor. Hmmm, let's guess how much insulin I need ... not a good idea.

[alphie37]

Just read your message and I think it is very dangerous what you are doing. Abnea is not something to fiddle around with.
I live in the Netherlands and it is unheard of to buy a cpap and just start using it. You really need specialized help.
Another thing I noticed that lots of people here on this forum set and reset the pressure by themselves. I am not allowed to change anything without the help of my docter.

[bwell]

Thanks for the feedback...

I had anticipated buying a more sophisticated machine in the future if I found my intial experience worthwhile. I hadn't quite convinced myself that this was the right path (getting past having to wear a mask every night - yee gads) and figured that $170 was a cheap investment to find out. That being said, and obviously not having experienced a superior machine, this puppy is REALLY working out. I FEEL GREAT. I am surprised to feel this great, shocked even...what a difference! Even my eyesight is improved...

The machine I am using is QUIET, has ramp up and if it's junior abilities produced this great a result, maybe the variable pressure and tracking will be worth shelling out more of my HSA account.

Following your advice, called the Doctor, who called the sleep expert who called me to discuss my little unauthorized expedition..... he's a nice guy, was a little dismayed that he didn't get to sell me a machine but after a short conversation suggested I continue at the 10 pressure setting. We'll going to try his oximeter overnight again, with me using the cpap machine and then possibly a third time with oxygen hooked to the cpap if the results suggest it (I'm renting an oxygenator from his company although not using it at present).

I haven't researched this yet, but am curious what stats the oximeter will reveal (sleep tech's oximeter goes on my finger overnight and collects data) versus what a more sophisticated cpap would track.... (I can do the homework but would be grateful for anyone's comments here).

Appreciate all the input!
bwell

[DreamOn]

I'm glad that you are discussing this with your medical professionals. With the machine you have, you are "flying blind," since your machine can't give you any feedback regarding your therapy effectiveness. Even though you are feeling better (which is important!), you really don't know if your sleep apnea is being adequately treated at the pressure level you're using. One of the major problems resulting from the apneas is oxygen desaturations, which occur repeatedly throughout the night during the periods when you're not breathing. These oxygen desaturations can do a tremendous amount of damage over time. The purpose of the oximeter is to measure your pulse rate and the oxygen desaturations that occur throughout the night.

Particularly because you have demonstrated a need for supplemental oxygen, I do think you need to be under close care of doctors to manage your sleep apnea and other health conditions. While some people are able to successfully self-titrate using a fully data capable machine, there are other reasons to get a sleep study. It can show other sleep problems, such as periodic limb movements, that could be affecting your sleep quality. It will indicate your various sleep stages and show the level of oxygen desaturations. It can also indicate whether you are having central apneas, which can occur with certain medical conditions or medications. These cannot be treated with a regular CPAP machine, so it's important to know if your apneas are central (the brain isn't sending the signal to breathe), obstructive (blocked airway), or both. If you cannot afford a sleep study, there are organizations that may be able to help.

Continue to read about sleep apnea and ask questions! A good place to start is the "CPAP Wiki" at the top of your screen. It's important to learn as much as you can about sleep apnea and equipment options. I think you'll find many helpful and supportive people here that are happy to help.

I hope you'll let us know how you're doing. I wish you well.

[roster]

bwell, So glad to hear about your excellent results. An oximetry study is a good idea at this point. If you look at the bottom of this linked page, http://www.echostore.com/wrist-pulse-ox ... s-50f.html , you can see the data that is collected and a typical format of the reports from a popular inexpensive model. You may need to zoom in that web page.

After you look at that page, if you have any specific questions post them. A good many members use oximeters and can help you.

I do think it would be a good idea to budget for and take some time to shop for a good data-capable machine with software. Most of us here are aggressive about managing our therapy because we have experienced so much damage to our bodies and mind from apnea. Even a mild level of apneas per night accumulate to high damage over the years. Without data capability patients don't know how well CPAP is treating the condition.

[roster]

Just read your message and I think it is very dangerous what you are doing. Abnea is not something to fiddle around with.
I live in the Netherlands and it is unheard of to buy a cpap and just start using it. You really need specialized help.
Another thing I noticed that lots of people here on this forum set and reset the pressure by themselves. I am not allowed to change anything without the help of my docter.

If I had waited on my doctors, I would not be alive today.

bwell hit a triple on the first pitch and is on third with no outs. Now bwell needs to get home to have a score and the oximetry study is a good next step.

[DoriC]

Just read your message and I think it is very dangerous what you are doing. Abnea is not something to fiddle around with.
I live in the Netherlands and it is unheard of to buy a cpap and just start using it. You really need specialized help.
Another thing I noticed that lots of people here on this forum set and reset the pressure by themselves. I am not allowed to change anything without the help of my docter.

Alphie, just curious, what would happen to you if you adjusted your settings? I do agree that a sleep study should be done to rule out any other underlyings issues that need to be addressed, but with basic OSA most titrations are not always accurate based solely on just one night and with a data-capable machine, education in interpreting the reports and lots of help from the pros here, one can safely make gradual changes until the "sweet spot" is achieved.

[bwell]

Thank you for the feedback!

After reading more of the forum I've decided to purchase my own oximeter (researching away...).

My machine is basic but it is really quiet and so far, so good. (Rooster - I hope I'm on third base!). Besides an excellent oximeter is there any other equipment I could get that could supply the reports I need without replacing the machine?

(Expense is a consideration of course but of course I can see the value in investing in the right equipment - I just hate to mess with my currently winning formula. I suppose another machine could work even better and supply feedback data....) My husband is almost like a data module...all he needs is a chart printer feature...hahahaha!

bwell

[DreamStalker]

Thank you for the feedback!

After reading more of the forum I've decided to purchase my own oximeter (researching away...).

My machine is basic but it is really quiet and so far, so good. (Rooster - I hope I'm on third base!). Besides an excellent oximeter is there any other equipment I could get that could supply the reports I need without replacing the machine?

(Expense is a consideration of course but of course I can see the value in investing in the right equipment - I just hate to mess with my currently winning formula. I suppose another machine could work even better and supply feedback data....) My husband is almost like a data module...all he needs is a chart printer feature...hahahaha!

bwell

Ask any experienced papper around here and they all have backups (some have backups for backups). Save some nickles and when you get a chance, buy a data capable machine off the cpapauction.com site and keep the one you got for your first line backup.

[bwell]

I did look at the auction sites and saw some amazing deals but I saw a few articles online about sanitizing a used cpap machine - would you have any concerns about that? I must admit I'm a little put off about using a used machine - might be silly but some cpap users have some serious issues and it seems a little too, well, personal to me. Thoughts?

bwell