Trying to find Support. Please help

My wife went thru a very bad patch when she was working and the kids were young. It took awhile for her to get back on track, so I know how you're feeling. Sleep apnea was not an issue with my wife, it was mostly just stress. That being said, you sound like you have sleep apnea issues (I'm not a doctor BTW) but I think it would be a minor blessing if you can get the correct CPAP therapy and quickly fix your problem with sleep. For basic Obstructive Sleep Apnea the cure is fairly simple if you stick with the machine and let your doctors, plus the forum members walk you thru the therapy. I'm not wishing apnea on you, of course, but you know where to get help if you need it. I wish I'd found CPAP when I was a lot younger, ah, but that's water under the bridge. Good luck and keep us informed.

Sir NoddinOff wrote:My wife went thru a very bad patch when she was working and the kids were young. It took awhile for her to get back on track, so I know how you're feeling. Sleep apnea was not an issue with my wife, it was mostly just stress. That being said, you sound like you have sleep apnea issues (I'm not a doctor BTW) but I think it would be a minor blessing if you can get the correct CPAP therapy and quickly fix your problem with sleep. For basic Obstructive Sleep Apnea the cure is fairly simple if you stick with the machine and let your doctors, plus the forum members walk you thru the therapy. I'm not wishing apnea on you, of course, but you know where to get help if you need it. I wish I'd found CPAP when I was a lot younger, ah, but that's water under the bridge. Good luck and keep us informed.

Thank you. I will definitely keep you all informed

It sucks because my kids will want to do something but I wake up with headaches a lot of times and doing things cause more pain

I will wager most - if not all - of your symptoms are due to sleep deprivation.

I too was waking up 4-5 (or more) times per night, waking with headaches I never had, wife shook me and said I stopped breathing or was snoring really bad, woke to racing heart and gasping, woke from a fight-or-flight dream (i.e. never ending fight with zombies ), daytime fatigue, reflux attacks (usually in middle of the night), and man was I becoming a douche-bag.

I went through all the clinic workups like you are and nothing was positive. I finally got the sleep study done (the delay was me), and here I am today with OSA. Stay on top of your doctor, the sleep lab, and the DME (equipment provider) if and when the time comes. I commend you for seeking our help before the study to educate yourself on your possible condition and your rights as a patient!

Hang in there - a better tomorrow is just around the corner!

caffeinatedcfo wrote:I will wager most - if not all - of your symptoms are due to sleep deprivation.

I too was waking up 4-5 (or more) times per night, waking with headaches I never had, wife shook me and said I stopped breathing or was snoring really bad, woke to racing heart and gasping, woke from a fight-or-flight dream (i.e. never ending fight with zombies ), daytime fatigue, reflux attacks (usually in middle of the night), and man was I becoming a douche-bag.

I went through all the clinic workups like you are and nothing was positive. I finally got the sleep study done (the delay was me), and here I am today with OSA. Stay on top of your doctor, the sleep lab, and the DME (equipment provider) if and when the time comes. I commend you for seeking our help before the study to educate yourself on your possible condition and your rights as a patient!

Hang in there - a better tomorrow is just around the corner!

You sound exactly like me! I actually slept somewhat well last night (only woke up 3 times) but as soon as I sit on the couch? I start dozing and waking up with horrible headaches!

I first found sleep apnea because I figured something must be causing all my issues! And no doctor could give me straight answers! Especially for the PVCs which I still have 10+ times daily when I've not had caffeine for ages

I called the sleep lab yesterday. My referral was written up Wednesday. I called my insurance wednesday and they don't need pre-approval. So yesterday I called the sleep lab and left a message.

I told them I had young children and my husband was off work for a week so to give me a call asap lol

If I could send you a beautiful bouquet of flowers I would!! Hugs, hugs, and more hugs. I actually hope your study shows you have APNEA. That way, there is something you can do right away to begin healing and feeling better!! I would not be surprised if you do.
If you have APNEA, God has led you to the right place!! We are here to support you and give you hope. This place has done for me what my doctor and medical supplier did not! I had a very hard time adjusting to the mask and now sleep faithfully every single night. I have had to learn some tricks that this group shares, and most of all have received the wonderful encouragement I needed.

God bless you and I will be praying for you

Dreaming

Dreamingofsleep wrote:If I could send you a beautiful bouquet of flowers I would!! Hugs, hugs, and more hugs. I actually hope your study shows you have APNEA. That way, there is something you can do right away to begin healing and feeling better!! I would not be surprised if you do.
If you have APNEA, God has led you to the right place!! We are here to support you and give you hope. This place has done for me what my doctor and medical supplier did not! I had a very hard time adjusting to the mask and now sleep faithfully every single night. I have had to learn some tricks that this group shares, and most of all have received the wonderful encouragement I needed.

God bless you and I will be praying for you

Dreaming

Thank you Dreaming. Also thank you to everyone who puts your stories and all your troubles and good news out here. I've been reading up on everything I can.

Welcome, Sleepy.
Since you have already been reading on this forum, I hope you are aware of the importance of a FULL data machine.
If you haven't already, be sure to read this:
http://maskarrayed.wordpress.com/
You want to avoid anything highlighted in red or orange.
Your providers may try to push you into a "brick", either because they don't care or it's more money for them.
Either way, don't sign anything or accept any equipment unless you are sure it is the right stuff.
(NOTE: many here have been lied to by DME's--it should never happen, but that's life)

chunkyfrog wrote:Welcome, Sleepy.
Since you have already been reading on this forum, I hope you are aware of the importance of a FULL data machine.
If you haven't already, be sure to read this:
http://maskarrayed.wordpress.com/
You want to avoid anything highlighted in red or orange.
Your providers may try to push you into a "brick", either because they don't care or it's more money for them.
Either way, don't sign anything or accept any equipment unless you are sure it is the right stuff.
(NOTE: many here have been lied to by DME's--it should never happen, but that's life)

Thank you for this great link!! I did know about 'Bricks' and about full data machines but I hadn't found a list of brands! This is valuable information!

After much thinking about this, I find myself disagreeing with everyone else and coming to the conclusion that you have lost your mind...

You haven't lost all of it, just the part that brings you peace, joy, serenity, a sense of purpose, and a sense of accomplishment.

While our job is to try to help you re-discover your joy, I want to make sure that the starting place is marked so progress can be measured. Keeping in mind that each journey begins with taking a first step it is evident that you have already started your journey back to health.

You may want to read the book "The Magnesium Miracle" by Dr. Carolyn Dean. Mineral imbalance can lead to several of the things you have mentioned. Our diet tends to be heavy in calcium and this throws the magnesium/calcium balance out of whack.

The next thing is to adjust your attitude. I look at it as starting a business. You have some experience with this since you have a family. With health concerns, you are the boss. You hire professionals to aid you. If they don't communicate well with you, fire them and hire some that are more compatible with you.

I am sure you already know this but sometimes restating the obvious helps...

Welcome.

I agree with the general consensus that a diagnosis of apnea (whether OSA or something more complex remains to be seen) would be no surprise at all.

While you're waiting for sleep study results (make sure, by the way, that you request a copy of the study itself--typically there's the two page summary, there's a longer report of varying length but probably nineish-pages, then there's the full data set, which is massive. It's handy to get the middle version) you can do two things, as already mentioned:

(1) try the positional remedies: try to sleep with your head elevated a bit, try to sleep on your side not your back
(2) pay really close attention sleep hygiene. Did I read correctly that you're not doing shift work anymore? Unfortunately some of these things are hard to implement when you have responsibility for small children. Even if you do turn out to have plan vanilla OSA, an xPAP machine only fixes sleep disordered breathing, and not disordered sleep. It took about a year for this to dawn on me and stop some of my long-standing bad habits.

There is outstanding information in the CPAP Basics thread stickied at the very top of the forum. I also recommend the thread on "Dealing with Change." Even though a diagnosis of OSA would be a relief to you, the reality that, with the current state of medical knowledge, you'd be "on the hose" for life can hit us pretty hard.

Hang in there. If you do get a diagnosis come back and you'll get help through the adjustment process.

Drowsy Dancer wrote:Welcome.

I agree with the general consensus that a diagnosis of apnea (whether OSA or something more complex remains to be seen) would be no surprise at all.

While you're waiting for sleep study results (make sure, by the way, that you request a copy of the study itself--typically there's the two page summary, there's a longer report of varying length but probably nineish-pages, then there's the full data set, which is massive. It's handy to get the middle version) you can do two things, as already mentioned:

(1) try the positional remedies: try to sleep with your head elevated a bit, try to sleep on your side not your back
(2) pay really close attention sleep hygiene. Did I read correctly that you're not doing shift work anymore? Unfortunately some of these things are hard to implement when you have responsibility for small children. Even if you do turn out to have plan vanilla OSA, an xPAP machine only fixes sleep disordered breathing, and not disordered sleep. It took about a year for this to dawn on me and stop some of my long-standing bad habits.

There is outstanding information in the CPAP Basics thread stickied at the very top of the forum. I also recommend the thread on "Dealing with Change." Even though a diagnosis of OSA would be a relief to you, the reality that, with the current state of medical knowledge, you'd be "on the hose" for life can hit us pretty hard.

Hang in there. If you do get a diagnosis come back and you'll get help through the adjustment process.

Thank you so much. I no longer work at all. I work from home so I can adjust my schedule accordingly. My kids are thankfully on a good sleep schedule. They go down at 8-8:30 pm and sleep till 7:30 am every morning (well except my DD with sleep issues, but if she gets up she puts herself back down too lol)

Today's been a rough day. I fell asleep rather early for me last night! About 1-2 am and slept off and on until 4 and then asleep at 5 until 9. (off and on I woke up a lot) I woke up without a headache but I sat down to do my daughter's hair and fell asleep right there!! UGH I woke up with a headache and have since been dozing off anytime I sit down today

Kind of frustrated. I got the referral on Wednesday and was told they would call the insurance and make sure they covered the sleep study and I'd get a call by Friday. I never heard back.

However 'I' called the insurance and found out in 5 minutes on Wednesday that they do cover sleep studies. So I called the office today to find out WHY I've not heard back about scheduling and I was told 'Oh well she's waiting to hear back from the insurance!'

So I asked her 'Can I have the insurance company call her?' (They offered to do that on Wednesday and it only took 15 minutes to find out for my daughter's MRI if it was covered) and she goes 'no no you'll get a call this week sometime'

I'm just frustrated because I have a short window I can get this study done and NOT have to worry about a baby sitter for my young children. And it sounds like the lady in their office hasn't even called my insurance because if she had she'd discover they DO cover sleep studies and don't' need pre-authorization

(sigh) Yes, they tend to do this on THEIR schedule.
When my family physician first sent me for the test, it was almost two weeks between the doctor giving the referral and the clinic calling with the appointment. (So MUCH of a delay that I even called my family doctor back to make SURE they had sent the referral.)
After the sleep study, I was told I stopped breathing (on average) 58 times per hour. Seemed to me that number was high and since the study was on a Friday night, I kinda EXPECTED the sleep doctor to call on Monday morning. He did not. Neither did he call on Tuesday or Wednesday. The call finally came on Friday with a schedule for an appointment with the sleep doctor 10 days later!
The morning of the appointment, the sleep doctor spent about 15 to 30 mins with me, then sent me to get my equipment. That night was the best night's sleep I could remember in some time (despite getting a pressure sore on the bridge of my nose).

Hi Sleepy,

Anyway you could call the doctor's office back and say something like, "I know you're very busy but due to having a short window due to having to get a baby sitter, I would greatly appreciate your help in getting this expedited. And see what they offer to do.

If the person still seems to be stalling, maybe ask if you can speak to a supervisor in a calm manner. I just feel you have the right to have this done as quickly as possible, particularly when you offered suggestions in expediting things.

49er

SleepyonMagnoliaSt wrote:Kind of frustrated. I got the referral on Wednesday and was told they would call the insurance and make sure they covered the sleep study and I'd get a call by Friday. I never heard back.

However 'I' called the insurance and found out in 5 minutes on Wednesday that they do cover sleep studies. So I called the office today to find out WHY I've not heard back about scheduling and I was told 'Oh well she's waiting to hear back from the insurance!'

So I asked her 'Can I have the insurance company call her?' (They offered to do that on Wednesday and it only took 15 minutes to find out for my daughter's MRI if it was covered) and she goes 'no no you'll get a call this week sometime'

I'm just frustrated because I have a short window I can get this study done and NOT have to worry about a baby sitter for my young children. And it sounds like the lady in their office hasn't even called my insurance because if she had she'd discover they DO cover sleep studies and don't' need pre-authorization

Light a fire under their butt.
Tell them your situation with the small children.

You never know...they might have a cancellation tonight and you miss the opportunity because of their taking their own sweet time. They are probably booked up and just don't see the need for any rush. It's rare for there to be an open slot within an immediate time frame. Depends on how far out their booking is but there might be a cancellation and you could get on that list.

Is there any other sleep lab facility in your area that works with your insurance...threaten to take your business elsewhere if they don't want to try to be speedy.