Diagnosed today - not sure what to think

[bgoomba]

Had a sleep study and found out the results today. The doctor said that I stopped breathing 29 times which she classified as borderline severe. Said that my blood oxygen levels had started to decline durning the night.

Thats about all I was told. She asked if I wanted to try CPAP and I said sure.

Now I am very concerned. I have had some rather crappy times of late (as many here have as well I assume). The reason I went to have a sleep study is because I frequently felt tired and I wanted to make sure I had all my bases covered. My first doctor thought I was depressed. I have been un-reasonable irritable, especially with my children. Yelling at them and getting on them for stuff that was no big deal. After appointments with doctors and mental health people, I have been told that I have ADD and am on Adderall and Welbutrin. All of this has helped my concentration at work but I am still very irritable. The more I read about different things, the more I realized that many of my symptoms were the same as those with apnea. I am not a huge believer of the ADD thing so I really wanted to cover all my bases. I don't want to be on stimulants the rest of my life. I finally went to my doc and said, I want a sleep study.

Had the sleep study and now what. 29 times I stopped breathing per whatever interval it is. I am not sure what that really means. I have read that many have not had instant improvement with CPAP.

How hard is it to stay with it till it does some good?

How hard is it to find the right mask? I usually sleep on my side. Its finding a mask going to be a trial and error process that is going to cost me a hundred+ dollars each time I get a mask that doesn't work out. Buy mask, doesn't work, buy another, doesn't work etc.

There is one question that the people calling me ADD have never answered and it really bothers me. On days when I get up early and go to work, I am actually a lot less easy to anger. I am usually tired but I am used to that for the most part. The problem I am stugling with is on the weekends. On weekends, I sleep in to 9 or 10 and always feel more rested at first. By the end of the day I am way more irritable and almost have to go be by myself at times. Its really difficult.

Is that an apnea thing? Sleeping in and thinking I am getting more rest and will be less irritable but the opposite happens? I don't understand why weekends are so hard for me. My poor kids don't know how to act around me. They are as confused as I am. I am wondering if there is an apnea answer to this.

Thanks for any advice

[Sir Snores A Lot]

I was also diagnosed today...My friends tell me the M Series Remstar Plus is the best CPAP for the $ and the CPAP Pro (NOMASK.COM) is the best mask...I will start with those recommendations and let you know

[Elle]

Hi and welcome. One mistake I made in the beginning (since getting information has only come from this site and it was too late by time I found it) was to not ask to try several masks before buying one. i was just given a mask and finally took it back to say it didn't work (for several reasons). So, I think the mask is the main thing to get right so be firm in your demands to get the proper fitting one. Also try it lying in the position you will likely sleep in. I really don't have as much information as the majority of the people on this forum have but I happen to be up with nothing to do and understood your confusion. Read the yellow light up top and read as much as you can here and keep asking questions. People here were very patient with my lack of knowledge. good luck.

[Elle]

Also, if you are on here right now you can click on "chatting live". I see there are several people there and they would be happy to help.

[jennmary]

I feel your pain! I have a 2 year old daughter and I cringe when I think of how irritable and horrible I have been at times. When I was told I had sleep apnea recently I burst out in tears right in the office. Happy tears. The dx meant that I wasnt crazy, and that my daughter wouldnt be living with a psycho mom for the rest of her life. lol
The # you are using sounds like your AHI....that is hourly. Anything over 30 is classified as severe. I am at 42 per hour.
Some people do get immediate relief....and for others it takes a while. Wish I could give you more hope than that but I dont want to lie. Here are some of the things I have learned. The next step will be to deal with the DME....they will supply your machine and mask and all of that fun stuff.
Do NOT let them give you a machine that is not FULLY data capable. Without that there is no way for you or your doctor to check your progress. You will be entirely in the dark. Compliance only data will only tell you how many hours you have used the machine...which is almost useless.
Make sure you try on as many masks as you can at the DME. Find what is most comfortable for YOU. You have to wear it, dont let them push into one that they want....they dont have to wear it.
Get a copy of your sleep study and your prescription. You dont realize it now, but you might just end up needing it in the future.
You are not alone. If you need help or advice there are forums like this one with amazing people who will give you tons of good advice and do whatever they can to help you through. We have all been where you are, some are still there.

[tangents]

Welcome bgoomba,

With regards to your question about being more irritable on weekends, I would wait until you start sleeping with CPAP before you worry too much about that. While it's natural to try to catch up on sleep on the weekends, you could be robbing your body of that much more oxygen. Every time you sleep, your body enters a battle between the need to rest and the need to breathe. You've gotten some great advice so far, and the more you read, the better start you'll get with your therapy. Post any questions you have - the people here are amazing!

Take care,
Cathy

[Slinky]

I was also diagnosed today...My friends tell me the M Series Remstar Plus is the best CPAP for the $ and the CPAP Pro (NOMASK.COM) is the best mask...I will start with those recommendations and let you know

The RemStar M Series Pro is a fully data capable machine which the M Series Plus is NOT. Double check this to be sure as I have Resmeds myself.

Masks are a VERY INDIVIDUAL thing and just 'cause the CPAP Pro may be the best mask for some, it can be an absolutel disaster for others.

IF you did well w/the mask used during your titration study. If it was comfortable and you had no or little leaks w/it then that is the mask you are better off going with than someone else's recommendation of what mask worked best for them.

When you go in for your mask fitting they SHOULD provide a bed or cot for you to lay on, with pillow, whilst fitting the masks. They should also provide an xPAP machine at your pressure whilst fitting the masks. You should be able to try each mask that feels like it will work while sitting up while you are laying down in each of your sleep positions, whatever they may be. The mask should never be fitted tightly. They should not be uncomfortable.

[new2]

Welcome to the club ! More people, more fun and information to gleen.

You can look forward to feeling better and having more energy. You may loose weight that would never come off before. You'll feel good and want to take walks again when you found it hard to go to the mailbox only months before.

You can look forward to having a good place tp come when you have a question and it's good to know that you don't have to blaze any new trails because we have all been there!

[tillymarigold]

After appointments with doctors and mental health people, I have been told that I have ADD and am on Adderall and Welbutrin. All of this has helped my concentration at work but I am still very irritable. The more I read about different things, the more I realized that many of my symptoms were the same as those with apnea. I am not a huge believer of the ADD thing so I really wanted to cover all my bases. I don't want to be on stimulants the rest of my life. I finally went to my doc and said, I want a sleep study.

I was on Wellbutrin for awhile also. Didn't help. Now suspect it's because I never really had dysthymia.

Had the sleep study and now what. 29 times I stopped breathing per whatever interval it is. I am not sure what that really means. I have read that many have not had instant improvement with CPAP.

How hard is it to stay with it till it does some good?

Many have not. Many have. I suspect people who see instant improvement are less likely to need to come here. For me, it was somewhere in between. I felt somewhat better than I had right away (enough to get through most days without a nap, at least), but not 100% better.

As for how hard, I really think it's like anything else--your attitude will help a lot with adapting. You'll have some frustrations and it may take a while to get the right machine/pressure/mask combo, but keeping a positive attitude about it will help you cope with those and keep things in perspective (you want to feel better, right? and if going through whatever you have to go through means you eventually feel better, it's worth it, right?).

How hard is it to find the right mask? I usually sleep on my side. Its finding a mask going to be a trial and error process that is going to cost me a hundred+ dollars each time I get a mask that doesn't work out. Buy mask, doesn't work, buy another, doesn't work etc.

Make sure they let you try on several masks and lie down with each of them with the machine on. Make sure you know the exchange policy in advance. Side sleeping is harder but most masks will work with it unless they're extremely wide (I feel sorry for stomach sleepers though). Other than that, it depends on your facial structure, I think. I'm lucky, all the masks I've tried seem to fit reasonably well. Others have a much harder time.

On days when I get up early and go to work, I am actually a lot less easy to anger. I am usually tired but I am used to that for the most part. The problem I am stugling with is on the weekends. On weekends, I sleep in to 9 or 10 and always feel more rested at first. By the end of the day I am way more irritable and almost have to go be by myself at times. Its really difficult.

Is that an apnea thing? Sleeping in and thinking I am getting more rest and will be less irritable but the opposite happens? I don't understand why weekends are so hard for me. My poor kids don't know how to act around me. They are as confused as I am. I am wondering if there is an apnea answer to this.

I don't know *why*, but I do know I was the same way. And I would get really angry by the end of the day on weekends because I hadn't gotten anything done because I'd been so exhausted. I never got much done at home during the week either, but at least I'd put in my time at work. And it was always easier for me to stay awake if I were actively doing something, which I mostly am at work. Like I could go out grocery shopping on the weekend, but when I got home, I'd crash.

In comparison, this past Saturday I got up at 7:00, downloaded my data, had breakfast, cleaned the bathroom (we just bought a new house that hadn't been taken care of, so there was some serious scrubbing-of-hard-water-stains involved), worked on training our puppy, had lunch, worked with the dog some more, went clothing and food shopping, went home, had dinner, fed the dog, walked the dog, and then went out to a 9:30 movie, came home, took the dog outside, and got ready for bed. I stayed up until midnight and didn't even take a nap or even feel like I needed one!

[DeltaSeeker]

Had a sleep study and found out the results today. The doctor said that I stopped breathing 29 times which she classified as borderline severe. Said that my blood oxygen levels had started to decline durning the night.

Thats about all I was told. She asked if I wanted to try CPAP and I said sure.

bgoomba, you didn't say if you had been titrated (had a CPAP pressure set) during your study. If you haven't, you will either need to go back to have one set, or your doctor might give you an "auto" machine which will determine what pressure is optimal for you. What they do during a titration study is start you off at a low pressure (5) and work their way up until they see events (apneas, low oxygen levels) stopping. They many times will go higher than this number to see if the numbers get better and then come back down to what they consider the optimal number for you. It's pretty similar to what an auto machine will do, except that there is more data feedback for the doctors to see and determine what's working best for you.

Now I am very concerned. I have had some rather crappy times of late (as many here have as well I assume). The reason I went to have a sleep study is because I frequently felt tired and I wanted to make sure I had all my bases covered. My first doctor thought I was depressed. I have been un-reasonable irritable, especially with my children. Yelling at them and getting on them for stuff that was no big deal. After appointments with doctors and mental health people, I have been told that I have ADD and am on Adderall and Welbutrin. All of this has helped my concentration at work but I am still very irritable. The more I read about different things, the more I realized that many of my symptoms were the same as those with apnea. I am not a huge believer of the ADD thing so I really wanted to cover all my bases. I don't want to be on stimulants the rest of my life. I finally went to my doc and said, I want a sleep study.

Good for you insisting on the sleep study! The Adderall can also be affecting you and making you irritable. It's one of the nasty side effects. That combined with sleep deprivation/lack of oxygen can make for one unreasonably irritable mom. My son was on Adderall XL and I had to take him off. He was irritable, combative, etc. Not my happy-go-lucky, cheery boy. He's doing much better on short acting Ritalin and I can adjust the dose if I see symptoms of irritability coming back. Talk it over with your doctor, but it might be a good suggestion once you start CPAP to try getting off the Adderall and see what happens. I was prescribed Lexapro when I was excessively irritable with my children - snapping for no reason, yelling all the time, etc. I would also sleep all day if I could. Many days I didn't have the energy to get off the couch. All signs of Apnea, but also depression. So rather than sending me for a sleep study, let's just hand over some pills and see if that makes it better..... In fact, the psych was just going to put me on Provigil (used to help you stay awake if you have excessive daytime sleepiness) without even giving me a sleep study when I half-jokingly said I thought I had Narcolepsy! It took me pulling in the reins and saying "whoa" to make him think again and order a sleep study.

Thank goodness he did. My apnea was 50+ events per hour. Explains a lot of things that have been going on since my mid to early 20's.

Had the sleep study and now what. 29 times I stopped breathing per whatever interval it is. I am not sure what that really means. I have read that many have not had instant improvement with CPAP.

It's true that some find instant relief and for others it takes a while. I've been on CPAP now for 2 months and 1 day and I'm finally starting to feel better. I expected it to be instant. Wish I had known that it wouldn't be. But I stuck with it because I'm determined to do all in my power to be a better mom and live a longer life so I can be around for my kids. In the end, it's worth it!!!!!

How hard is it to stay with it till it does some good? How hard is it to find the right mask? I usually sleep on my side. Its finding a mask going to be a trial and error process that is going to cost me a hundred+ dollars each time I get a mask that doesn't work out. Buy mask, doesn't work, buy another, doesn't work etc.

The mask is the most important part. It's the reason most people "flunk out" (at least in my opinion). Fit and comfort are important and since every face is unique, it can be difficult to find one that works well. For instance, I have deep grooves (smile lines) by my mouth and masks tend to leak through those grooves for me. I have to have a full face mask since I have severe allergies and even after sinus surgery to correct a deviated septum and remove polyps I'm still severely congested 99% of the time. So I'm afraid of choking with a nasal mask. If you do breath out of your mouth at night, you can either go the full face mask route, or try some of the other things others have here to seal your mouth at night. Chin straps, polident strips to keep the lips shut, taping their mouths shut, etc. The thing is, if you breath through your mouth with a nasal mask, your treatment is useless - all the air/pressure goes out your mouth instead of down your throat to keep you airway open! As Slinky said, try on many masks. It's important that you also try them on laying down with a pillow in your normal sleep position to make sure they don't leak and are comfortable. Make sure you also choose a supplier that has a wide range of masks. Don't let the try to push you towards one brand or another.

Do you have insurance to cover the equipment? Even if you do, many require that you meet the deductible prior to paying for it. They also mostly rent the machine itself for a period of time before paying outright for it. If you do have insurance, you can always try the "billmyinsurance" button at the top of the screen. Or you might be stuck with a supplier that your insurance demands. Sometimes it's worth it to buy the machine on your own if your deductible is high. I have a $500 deductible which was already met for this year, but in August it will come up again. Since I'll have to meet that deductible again before they'll continue paying for the CPAP machine, I'm thinking of just getting my own from CPAP.com - it'll be less than the deductible...

There is one question that the people calling me ADD have never answered and it really bothers me. On days when I get up early and go to work, I am actually a lot less easy to anger. I am usually tired but I am used to that for the most part. The problem I am stugling with is on the weekends. On weekends, I sleep in to 9 or 10 and always feel more rested at first. By the end of the day I am way more irritable and almost have to go be by myself at times. Its really difficult.

It makes sense to me that the more "sleep" you're getting, the more oxygen deprived and adrenaline pumped you are. Unfortunately it's a Catch-22 with apnea. I too felt sorry for my kids. Either mom was sleeping or yelling

It gets greater later! Stick with it and you will see results.

Praying you get to be one of those lucky ones who feel better the first day!

Linda

[ianc764]

Saw one big thing in your post about having difficult weekends... IF you are depressed and tired during the week--speaking for myself I have been depressed since childhood, since before ADD even "existed" and when Friday rolls along I go DOWN... UNLESS I have an active plan to do something--anything at all--to occupy the time. I am always happier when I have to work Sat and Sun because its an activity--I'm too busy to get depressed... But when there's no weekend work I MUST find some way to get out og the house and do something! Good Luck!
ianc764

[bgoomba]

Wow, Lots of great responses. Thanks to everyone.

bgoomba, you didn't say if you had been titrated (had a CPAP pressure set

The titration process is next for me. Unfortunately I have to wait 2 months till they have an opening in the local sleep study clinic. Busy place without a lot of capacity. I live in Boise ID so there does not seem to be a lot of options.

As of right now, I am cautiously optimistic. I don't dread the idea of CPAP. I am more curious than anything. I am wondering how it will all work out. I tend to roll from one side to another a lot when sleeping. I am not worried to much about finding a mask. After reading all your suggestions I am definitely going to be fairly assertive during this whole process. I desperately want this to work.

During the sleep study, whenever I rolled, all the wires woke me up. I am guessing that I will run into a similar sensation hooked up to a CPAP. If I fell asleep with the wires then I can do it with hoses. During the sleep study, I kept getting all tangled up in the oxygen sensor wire. Pulled it out of its connector several times. As long as I don't wake up cocooned in a mas of hoses with a CPAP lodged in my armpit I think I can adjust.

They did have me try a CPAP at my original sleep study. Wanted me to try and get used to it in case they wanted to split the study and try half the time with a CPAP. It really wasn't all that bad when sitting in a chair. I did it for about a 1/2 hour. The only thing I didn't like was when I opened my mouth and air came rushing out. Very odd sensation.

BTW, I am a 30-something dad with a 3 year old and 6 year old daughters.

Do you have insurance to cover the equipment?

I do have insurance and have been pleased with them so far. The sleep study took care of the deductable right away.

I do plan to give this a chance. I have been dinking with drugs for over a year now. Been on Strattera, Effexor( a disaster btw) Wellbutrin and Adderall. Tuning doses and the like. Dealing with the side affects of these has been very trying. I not only want to stick with this, I need to. If there is a chance permanently become the dad that I have on occasion been, I will do almost anything.

I do hope this makes a change for me. I was initially excited when they told me I had ADD. Perhaps I am not just lazy. This is something that can get better. After a year the optimism has faded and I am a little pessimistic I guess. A little nervous. I don't want to get my hopes up until I can one day wake up and say, I feel good. Then go the whole day without being irritated. Perhaps the guy who eats ice in the cube next to me wont bug me. [/quote]

[snoregirl]

Sir Snores A Lot looks a lot like spam to me. Anyone touting the machine and mask he is who is listed as a guest makes me wonder.

I have mixed feelings about waiting 2 months for a titration study. I might see if there is a wait list for cancellations, or ask my regular doc to prescribe an APAP for you to use at home in the mean time.

Do read while you wait expecially the stuff for newbies.

You have been happy with insurance so far. Lets hope that continues. Research the different machines and options so you are ready when someone tries to shove one across the table at you saying "this is the best machine" or "this is what you need", or "this is what your doc ordered"...

I think you are already thinking about that by your questions.

I was lucky, and the machine really helped me a lot in a hurry. Maybe you will be too.

[jennmary]

I called the sleep center everyday to ask if they had any cancellations. I was supposed to wai almost 2 months.....but I got in 2 days later. People will often cancell ahead of times on sleep studies otherwise they could end up paying a large no show fee for not cancelling in advance. The center wants the beds full....otherwise they lose out on money. I would call regularly and ask if there are any cancellations.

[tangents]

Snoregirl said:

I have mixed feelings about waiting 2 months for a titration study. I might see if there is a wait list for cancellations, or ask my regular doc to prescribe an APAP for you to use at home in the mean time.

Snoregirl has a great idea to investigate, and jennmary's idea of asking for cancellations is great, too. I know both my sleep studies had calcellations the nights I went.

Good luck,
Cathy