Newbie with a ton of confusion

[mips]

I am at the early stages of being diagnosed with something, my husband is newly diagnosed with Sleep Apnea, he has a machine and is learning to deal with it.

Please forgive me because I don't know all the right words or any of the jargon that comes with these issues yet, this is all very new as in I was told there was an issue on Wednesday. I also have a horrible tetendency type as my mind thinks of something (ohh loook shiney!) and American English is not my native language.

I recently had an sleep oxygen test run and it was found that my oxygen is lower than 75% for most of the night with 15 min intervals of it being even lower than that. We live at high altitude if that makes any difference. My Dr has started me off with having an oxygen generator delivered and sleeping with that for the next month when another sleep oxygen test will be ran. Im already confused by this as the very nice young man who set the machine up said that the test would be run without oxygen and its possible that I wouldn't have to have the machine after a month, where as I thought that my Dr said if the oxygen test showed better with the machine I would just keep it forever. Since the machine was delivered late Friday I have not been able to clarify this with my Dr yet, but I don't see how a month of oxygen will fix it forever.

My Dr was also concerned I could have Central Sleep Apnea or I could have Asthma, or another lung issue, as far as I am aware I do not have asthma, and my blood work she ran was all pretty normal. I have always had insomnia since a small child though and sleep ok with over the counter sleep aids. Herbal type stuff has not proved effective and I don't like the feelings I get from stronger prescription sleep aids. Even with sleep aids I find myself waking up every time I turn over, usually I can go back to sleep within a minute or two.

Would sleep apnea/oxygen depravation be a possible cause of night terrors?

How do people stop strangling themselves with the thin oxygen wires at night?

How do you travel with a huge heavy oxygen machine the size of a suitcase? Or will I be able to do without when I go away?

Do I have to rent the oxygen genorator forever if i have to have it or is it more cost effective to buy one? I think I have to pay around $28 a month for it right now.

Where do you even start to begin to take all of this in?

Thanks for any help anyone can give.

[BlackSpinner]

For some people the need for the oxygen goes when you start using the machine. The reason is that you keep breathing so your O2 doesn't go down. That is why they will do the sleep test without O2 and with a cpap machine of sorts.

Would sleep apnea/oxygen depravation be a possible cause of night terrors?

Yes! You are choking to death while you are having a dream, it becomes part of the dream.

[qmx]

I agree completely with blackspinner. You need to have a good sleep study to get a diagnosis. It might be that all you need is to be set up with a cpap machine ... and you might find that you will acclimate to it very quickly ... and start to get life-saving sleep, as I have. Best of luck to you.

[kteague]

There's a lot of information out there, but the good thing is only parts of it will be necessary for you to know, and not all of it at once. Getting a specific and accurate diagnosis will enable you to better target your learning efforts. Hopefully a full sleep study will accomplish that. I wouldn't invest too much energy into learning the oxygen equipment stuff - just enough to get by until you know if it is temporary.

[Eureka]

First, you did a fine job of explaining your situation in English.
I have sleep apnea and knowing the severe consequences I had, I tend to think that many of the problems you described can be improved with adequate sleep apnea treatment.
I also feel for you in trying to understand this whole new world of sleep treatment. It is staggering when a person is new. You will not grasp it all at once, but stick with it. Piece by piece it will fall in place and it won't be long until you are amazed at how much you know about the subject. In fact, you will try to explain some of it to others, and they won't know what you are talking about.
As the old saying goes, take it a day at a time. And don't give up.
By the way, this forum was a life saver for me. There is a world of information available. Just keep looking.
Sure wish you the best.

[kaiasgram]

Hi mips, I'm just 'down the hill' in Sacramento. Welcome to the forum. Keep us posted about how things are going and you will get great advice and support here. Same goes for your husband.

[Always tired]

Mips,
Don't know what doctor you are seeing but if he/she does not work out I recommend Pulmonary Medicine Associates in Reno (there are others). PMA has some good doctors and the the staff at the sleep lab is first rate. If you have any reservations or unanswered questions from your current doctor go see a specialist.
http://pmareno.com/lung-health

[Julie]

It's possible they gave you the 02 on a temporary basis until you find out what kind (if any) of apnea you have and then have to wait while you all work out the best machine and mask to use... so I wouldn't worry about the canister size or even wires just yet, but there is a thing like an IV bag stand you can get for things like the wires, hoses, etc., if necessary, or possibly use a small hook in the ceiling to keep them out of your way (if the 02 mask has a swivel on it where it attaches to the hose). Some people hook it to the headboard of their bed. If you do end up needing 02 longterm, you can generally get a tiny two-wheel cart to use when going out, and it's made to carry oxygen and there's a thin, clear tube from it to you. Good luck with finding quick answers.

[herefishy]

I started with oxygen, then when they decided I had apnea, they said the oxygen wasn't doing any good, as it wasn't getting into my lungs on account of the apnea. So that is why you might not need the oxygen.

[Julie]

Herefishy, that doesn't make sense... there's no way oxygen would not get into your lungs 'because of apnea'.

[BlackSpinner]

Herefishy, that doesn't make sense... there's no way oxygen would not get into your lungs 'because of apnea'.

If you don't breathe in, all the O2 in the world won't get into your lungs. Remember "Obstructive" means the throat collapses and blocks any air from coming in. No fresh air = no fresh oxygen.

[jencat824]

Mips,

My nephew (38 yr old) was started on oxygen, by his family dr who IMO didn't know what she was doing. After I talked him in to pressing her for a sleep test, he was referred to my neurologist who said oxygen can be used as a 'bridge' until a sleep test, but if diagnosis is apnea, then oxygen is only temporary and CPAP therapy is needed. He started CPAP last year & is doing wonderfully. He is fully compliant & took to the second mask he tried, without leaks. Since I've gone 'data happy' he is going to bring me his data to look at, to make sure he doesn't have leaks, etc. He is not following up with his dr like he should, but generally for him, I'm just glad he is using CPAP & feeling much better with the therapy.

That being said, I would think the oxygen is probably temporary. I know he taped the oxygen tubes to his face, (using medical grade tape from Walmart) so he could roll in bed as needed. Don't know if that might help you? Hopefully you will get a good sleep test soon, so you can get to the bottom of the problem. Until then, read this forum, you will learn a alot from the folks here. I've been on CPAP 12 yrs, found this forum a few months ago & have learned more from the forum than from any of my drs.

Good luck,
Jen

[Julie]

Blackspinner - you're absoutely right! Didn't think of that!