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Permalink Reply by Debbie Perrone on July 31, 2009 at 2:00pm

I took my own pillow and slept in comfortable clothing, not pajamas. I was not able to read during the pre study time because there was no lamp close to the bed, but I was able to watch television which is how I fall asleep at home. Just relax and it will be fine.

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Permalink Reply by Jeanne Berry on July 31, 2009 at 2:08pm

Sounds SO familiar. I was at the same point as you are 18 months ago, after one year of expensive and complete testing, with many smart docs saying "I don't know what is wrong with you". When finally referred (I went skiing high in the mountains and collapsed, and was taken to a clinic where the doc said the magic words "Have you been tested for a sleep disorder?"), only to be told I would have to wait months for a sleep study, and I freaked. The nurse at my doctors office phoned and got me right in to the sleep study. I was more scared that the sleep test would NOT tell me what was wrong, and I would have to find some means of coping with the variety of symptoms. But, I gathered my self up and tried one more time, marched into the sleep study, and found folks that were kind, answered all my questions, and worked with me. I met with the doctor a few days later, and FINALLY someone said I had sleep apnea, and was not crazy. I found my path, and am the most complaint patient, ever! I tried lots of masks (was encouraged to do so) and built up day to day to my sleep routine. It took months to totally come out of the fog, but I kept noting that the world was brighter, and I was part of it. Keep trying, the life you save may be your own.

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Permalink Reply by lynn on July 31, 2009 at 2:19pm

Claire, I'm glad you have come to this website because we all know what you are going through. First when you go take the test be in the most positive place in your mind as possible. This will change your life! You need this documentation to get the help you need. Take your favorite pillow, leave your bedside clock at home, wear very comfortable PJ's that don't constrict and will move freely with you in bed. They need to place electrodes on you to monitor all your vital signs, brain waves etc. but don't be scared they don't hurt. I wore PJ's that that were long in the leg and arms and they helped support the wires so I didnt get so tangled up. I would suggest you dont drink alot for the evening so you arent worrying about getting up to the bathroom all the time. You can always go so dont hesitate to tell your people you need to go. Dont let that keep you up. Lay your head down and start to dream of your favorite things like playing with those grandkids of yours! You cant change anything on those tests, they will get what they need even if it is only three hours at a time. After all isnt that the reason you are doing this is to show that. If they want to try and see if cpap will work for you that night also just go for it. Try on the different masks and they even have nasal pillows that are awesome. My great nephews call it Aunt Lynnie's elephant nose!! I slept 6 hours the first night I wore my cpap in the deepest most refreshing sleep I ever had. Sometimes when my nose gets stuffed up I have to take a decongestant and that really helps. This wont change your underlying illnesses like your diabetes but it will have a better effect on your ability to help manage it thru exercise and diet because you will have the energy from a goods night sleep. Stay positive because your life is about to change if you embrace it!!!

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Permalink Reply by Rock Conner RRT on July 31, 2009 at 2:38pm

Claire, the US sleep disorder diagnosis & treatment system is patchy at best, with some excellent providers & some rotten profiteers. Not having any personal knowledge of Pensacola sleep facilities, I recommend that you try to get into one of the three accredited by the American Academy of Sleep Medicine (from http://www.sleepcenters.org/Centers.aspx?state=FL):
Sleep Diagnostic Center at the Medical Center Clinic
Sleep Disorders Center at West Florida Hospital
Thomas B Williams, MD Sleep Disorders Center Baptist Hospital

Those who posted before me have given you good guidance about preparation for your exam. I would only add that it seems weird to be hooked up to so many wires & then told to go to sleep. Go with that -- it is weird, but it works. Be as patient as you can with the seemingly goofy requests of your polysomnographic technologist (& win points with him or her by knowing that term!). The system can seem slow regarding reporting of results & the beginning of treatment. Remind yourself that your sleep disorder developed over time, as will its resolution.

And keep coming here to ask for help. These folks care. Go figure!

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Permalink Reply by RockRpsgt on July 31, 2009 at 2:44pm

Hi Claire, welcome to sleepguide. On the night of your study get to know your tech a little. Ask him/her questions. they are there just as much to educate as to evaluate. if you have to come back for a second study request the same tech, and try to schedule your appointment on a night that he/she works. As a tech it helps to be familiar with the pts for your sake and theirs.

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Permalink Reply by Dan Lyons on July 31, 2009 at 3:03pm

I can't stress this point enough. GET A COMPLETE COPY OF YOUR SLEEP STUDY AND A NON-DISCRIPT SCRIPT FROM YOUR PHYSICIAN. Do not allow the script to pin you to a certain machine brand and type and mask brand and type. The script should allow you to choose the machine and mask of your liking and comfort. The doctor is required by law to provide copies of these items to you.

You may also want to get a script for the distilled water to which you will need for use with the humidifier. While not a controlled item, the script makes it a medical item and allows you to deduct it from your taxes as a medical expense.

Do not let the system push you around. Push back. Watch the DME with both eyes and ask questions. Remember that the DME only cares about you as long as your money is green and the well flows.

Keep copies of everything.

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Permalink Reply by tushygalore on July 31, 2009 at 3:30pm

Hi Claire,
You sound like you have quite an uphill battle ahead of you but I know you can overcome this and have a vastly improved life by this time next year. You're on the right track by getting the sleep study done and by looking for support from those of us with similar struggles.

I too have a huge problem with my mind sabotaging me at night and not allowing me to fall asleep. I've found relief from this by`loading am MP3 player with podcasts concerning topics I'm intensely interested in, popping in a pair of comfy earbuds and concentrating on that while I fall asleep.

I go thtough a lot of batteries but it's worth it!

I admit though that since being given a CPAP machine I fall asleep in under 5 minutes instead of an hour or more. And I'm sure you will too! Hang in there!

-Elissa-

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Permalink Reply by susan mccord on July 31, 2009 at 5:01pm

Hi Dan--this never occurred to me. I've been erring on the side of not being "too needy" with my DME. That's gonna stop as of this minute because of this note from you. Thanks for reminding me that I'm empowered to care for myself, not for THEM !!!!!!

Susan McCord :-)



Dan Lyons said:

I can't stress this point enough. GET A COMPLETE COPY OF YOUR SLEEP STUDY AND A NON-DISCRIPT SCRIPT FROM YOUR PHYSICIAN. Do not allow the script to pin you to a certain machine brand and type and mask brand and type. The script should allow you to choose the machine and mask of your liking and comfort. The doctor is required by law to provide copies of these items to you.

You may also want to get a script for the distilled water to which you will need for use with the humidifier. While not a controlled item, the script makes it a medical item and allows you to deduct it from your taxes as a medical expense.

Do not let the system push you around. Push back. Watch the DME with both eyes and ask questions. Remember that the DME only cares about you as long as your money is green and the well flows.

Keep copies of everything.

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Permalink Reply by Mike on July 31, 2009 at 6:46pm

from Eric James Bennett:

"The test is a piece of cake... Just do what you normally do.. Next doctors visit have them check your hormone levels.. As we get older they tend to drop off production and this is where bad sleeping habits and that middle age shed we seem to grow around our waist. I know the feelings as I fight them all of the time. The hardest problem I have had is using the machine all night.. It bugs me to death... But, it does help when I make it through the night.. Good Luck my friend and try and relax it will come to you..."

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Permalink Reply by Julia on July 31, 2009 at 7:15pm

Hi Claire! I am far too new to cpap to give you much, if any advise. I have only been using my cpap for a little over a week now. I just really identified with your post.

Although I am sure I have had OSA for a long time, it became unbearable since I had a knee replacement (almost two years ago). The OSA was causing me all kinds of exhaustion issues and then the knee replacement just added to my sleep problems and pain problems. I found I couldn't think clearly and lost all interest in doing anything other than stay at home to "rest." If you have had the knee replacement or one is in your future, it can cause sleep problems in addition to the apnea.

Like you, I also have diabetes. The diabetes and knee problems made it hard to lose weight or to exercise which just became a viscious cycle. I was also so tired...and not depressed...just too weary to want to do anything or see anyone. I also was frustrated with the time it took for everything to get diagnosed and treatment started.

I am hoping that now I am cpap, I will start to gain back some energy and clearer thoughts. I already feel better each morning, although I still feel very, very tired in the afternoons.

I think I could have written your note. Hang in there. Maybe in a few months we will both feel like new women!

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Permalink Reply by Kenneth Dean McKnight on July 31, 2009 at 9:09pm

Hi Claire,

Enjoy the sleep study and see if they will do a split study for you. A split study is typically 4 hours of diagnosis and 4 hours of CPAP titration. Hopefully, you will feel refreshed after the titration part. Getting and using your CPAP will help you a lot. Unless you have something acutely wrong with your knee necessitating immediate replacement, I'd suggest you see about getting a steroid shot in your knee from a orthopedic doctor. The shot hurts but it really works to relieve pain in the knee for about three months at a time. Also, have your primary care doctor check your Vitamin D level and prescribe as needed. Phooey on the depression meds hun, you just need to get some good sleep and stay hungry(but don't eat much) and active. Also, try not to drink much of anything after sundown, so you don't have to pee at night. Remember also, sugar kills.


Hoping the Best for You,
Ken McKnight, R.R.T.

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Permalink Reply by Elaine Banno Horonick on July 31, 2009 at 9:58pm

My name is Elaine and although I don't have sleep apnea, I lost my only sister to it and my father has it She was, as I am, morbidly obese.
I am changing my life, but it was too late for her...back to the subject, I had the same sleep symptoms as you as well as the depression and crying jags. Also extreme anxiety. It turned out that my oxygen levels were at below 70 when they should have been at near 100%. The low O2 level cause among other symptoms depression and anxiety and can and will eventually lead to heart/organ failure...
If I can make a suggestion, it would be to insist you get immediate care. Do not wait for your appointment.
I was protesting all the way to the hospital, but it saved my life...
This may seem radical to you but I would go to an emergency room. Really. If you don't have insurance, they will still have to treat you. If you have insurance, you have the power now, while you are still alive to do something about it now.
Contact me if you like: mrpeachy@ptd.net

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