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prtex
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Hi, everyone. This is my first post. I have severe sleep apnea, and insomnia. Also, in the last few weeks, my circadian rhythm is shot. Needless to say, I'm usually tired and sleepy. Except when I'm real tired and sleepy.

I'm seeing a psychiatrist on Wednesday, for the first time, who specializes in sleep disorders. I hope to God he prescribes a light box for me. I think that, between the insomnia and my rhythm problem, it's better for me to solve the rhythm problem first.
If anyone has a different view about that, I would be interested in hearing about it. I would also be
grateful to hear from anyone who has used a light box, about their experience with it. Also, has anyone used a light box with blue light? Or with compact fluorescent bulbs? I am curious about those models as well.

I must say, I'm a bit surprised to see bright light therapy listed here as an alternative treatment. It's listed on the American Academy of Sleep Medicine's website as a mainstream treatment. I don't know how you get more establishment than that.

One other problem I have is, I often don't do the right thing for myself, even though I know I should. Like, when I sleep during the day, I don't use my CPAP machine. And I don't always go to sleep during the day when I should. And I don't know why I do these things. If any of you have experienced this, I would be glad to hear what you do, that's effective, to change your behavior.

Well, I am glad to be here, and I look forward to participating in the community.

7 replies

Amir

Hi Prtex,

Welcome to the community. My name is Amir and I have moderate apnea. I recently started sleeping with a CPAP machine . Feeling slightly better but some days are better than others. Still getting used to sleeping with that contraption on my head. Oh well.

Do you sleep through the night with your CPAP? What kind do you have if you don't mind me asking? I have a nasal pillow one - http://www.cpap.com/viewImage.php?PNum=2485&Image=resmed-mirage-swift-ii-cp ap-nasal-pillow-mask-front.jpg
Works for me so far.

I completely know where you are coming from in trying to comply with what you are suppose to do. I find it hard as well but have to remind myself that it is for my benefit. How long have you had apnea?

Looking forward to communicating with you.

Amir

cronicX4

I suffered for years, I even had several times I fell asleep and nobody could wake me up for various times from several minutes to 30 minutes. While they were trying I could hear them, but I couldn't move. I finally confided in the right doctor and he smiled and started ordering test! I have sleep apnea. So he ordered the CPAP. I use it faithfully. Next, he ordered a sleep study followed by a MLST and it showed Hypersomnia (sp) but with the documented hospital stays, it proved I had Narcolepsy with Cataplexy. Cataplexy can react in everyone different. I first got it as a child, I only lost movement of my right arm or leg. It didn't start on my entire body until the last few years and I'm 52. It has always had the diagnosis of nerves! Now I am on Provigil to stay awake during the day and Zyrem to sleep. They both help and with the CPAP I finally know what Rem 3 and 4 sleep is. I know this was long but I thought maybe it might help you. The sleep study and MLST is the key. Do a search for Narcolepsy with Cataplexy and see if either fit your symptoms, it is worth it. God bless you and happy Doctor hunting.

nursefriendly

prtex,
Welcome to the forum. I am going to say something about my observations of people living with chronic conditions in general and to people living with sleep disorders specifically. I hope that it will not be seen as rude or harsh, but as the advice that one may not like to hear but needs to. As a person with narcolepsy and obstructive sleep apnea/hypopnea syndrome and a health care provider, I will say that you are in charge of your own health. If you choose to not follow the advice of your doctors you will be a chronic sufferer with a decreased quality of life. You end up wasting your money and the providers time trying to help you because you don't take your condition seriously enough to follow the plan of care. When I was blessed to get properly diagnosed, I jumped full speed ahead because I have a life to lead well. I feel great. Life is good and no one knows of my condition unless I tell them. Sometimes one can get in a rut of just feeling sorry for themselves and complaining that they feel bad when in actuality that person has not put his/her best foot forward to heal thyself. Do you really want to feel better? Follow the plan of care. That way when you meet at follow-up, the plan can be adjusted and optimized to get feeling "normal" again. HTH. Again welcome to board.

prtex

What did I say that sounded like, "Tell me how to live my life"?

Who died and made you God?

prtex

That was for the third person who replied to me.

deeards

I am new here and new to sarcoidosis. When I was in ARDS (acute respiratory distress syndrome) crisis, I was on a ventilator. Eight years later and I have sleep apnea. I first tried a CPAP but I didn't have enough energy to exhale upstream. I then tried a BIPAP but no good at that. The CPAP and BIPAP made me "flashback" to being on a ventilator. I was actually much more tired trying to succeed with the CPAP and the BIPAP. A dentist/sleep specialist at the University of Michigan has just fit me for an oral appliance for sleep apnea. I get it 9/4/08.

I didn't know sleep problems were a part of sarcoidosis. Geeze. Now I feel so much better knowing that sleep is a problem. At least, I'm not making all this up in my head!!!

cronicX4

Prtex, I hope you have found out something by now. I understand what nursefriendly was trying to say, but I also know what you are saying too. Getting used to the CPAP or anything else takes time for some people. I know I tried to use it during nap times too, but know several people who don't. Finding the right doctor that will run the right test is sometimes hard but when you get the right medication (or combinations) it can turn your view of life around.
I feel better today than I have in years.
God bless you.

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