Sleep Study Shows Sleep Apnea

[tinkerbella]

I HAVE BEEN so tired forever....HAD 3 SLEEP STUDIES ~ Fallen out of bed, walk in my sleep, see

things in REM sleep, act out my dreams, then get hurt. This TIME I was so tired getting there that I fell

asleep before they put the equipment on me. They wouldn't let me sleep sitting up or on 2 pillows. At home I have a wedge. After the test, they let me go home, and said the doc will follow up with you, and said

everything was OK.

The other day, I got a call of my plummy/sleep doc saying I have sleep apnea. I was shocked!!!!! I

told him I've been falling asleep everywhere. I fall asleep eating food in bed, on the bus, in

wating rooms, @ the doc's, you name it....

Someone is going to come out this week and fit me for a "turtle" mask and setup a machine. I really don't

know where it will fit. lol ~ Hummmm ~ Between the computer nurse, BP machine, Phones, oxy/pulse

meter. The lifeline, computer to the outside world.....My "Power Thought Cards" by Louise Hay, My

water bottles, pens, and box of fortune cookies that make me smile : )

Anyone else have one of these lovely machines?

Bellamia ~x's

[HopeSprings]

You had three sleep studies done and only one showed sleep apnea? Do you snore? I had one which showed reduced deep sleep, but no apnea. I feel like sleep is a big part of this for many of us. Wonder if repeat testing would be useful. Well, glad they caught it! - maybe treating this will help you feel better.

[sue1234]

I hope this is part of your answer! Getting restorative sleep helps everything in life!

[tinkerbella]

No, I don't snore....but, just getting to to study is so tiring, it takes me two buses that I'm so exhausted, that I'm so tired that I don't show my normal sleep patterns of waking and falling asleep like I do at home.

I have episodes of sleep paralysis, gasping for air, very, dry, dry, mouth, and dream like episodes where I act out my dreams. Sometimes these are very hard to catch.Thankfully my cardio made me go back a

second time in 6 months.

I can't wait to see the difference and pray the mask won't bother my face. With Mast Cell I have a problem with so many things. Fingers and toes crossed ~

Bellamia ~

[issie]

I have apenea and MCAD too. The only mask I've found that doesn't drive me absolutely crazy (after about 6 others) is an Opus 360 which is a nasal mask. It fits the best, on me and doesn't leak and is the most comfortable without causing too much claustrophobia. Hope it helps you - it sure helps me.

Issie

[tinkerbella]

Thanks Issie for the tip ~ C L A U S T R O P H O P I A ~ Oh no I'm in big trouble!!!!!!!!!!!! Opus 360 does it come in an animal shape? I have to make the kids laugh....

[DoozlyGirl]

Hi Bella,

I was diagnosed with obstructive sleep apnea, significant insomnia (often go 48 hours without sleep), and delayed sleep phase syndrome (messed up sleep timing control) within months of my failed TTT and diagnosis of autonomic neuopathy. I have used a sleep APAP machine for over 18 months with few issues, and generally felt better with it, until recently.

Over the past several months, I have been so reactive to everything, and have been pursing MCAS. Two docs confirmed my suspcions and being referred to a MCAS expert out of state. In the past few months, I can't tolerate using the APAP unit. I have figured out that I am reacting to the plastic tubing, as well as sensitivity to the smells coming from the unit. I have disinfected the unit regularly and figured out that now that I am so reactive, I am reacting to the "outgassing" from the plastics from the new mask, tubing and insert tub that I used 6 weeks ago. Others with MCAS/masto have also reported this and have had to unpack their tubing and mask and keep out for weeks before they could tolerate the tubing and mask.

Interesting for me, once I began taking H1 and H2 on a regular basis, I don't need Ambien as often and find I can fall asleep without them about a third of the time. A step in the right direction.

Good Luck sorting this all out. My autonomic neurologist told me I would not get better until I could regain restorative sleep. he was right, I did have a significant increase in activity after starting my sleep regimen. I was previously bedridden for months.

Lyn

[tinkerbella]

Thanks for all the info, you are all so helpful. Issie, they called today and are going to bring the mask you told me about. Lyn, I always hate the smell of new rubber/ plastic type things. Thanks for your suggestions about what worked for you, as you sound like me ~ I KNOW I'll get through all of this, especially with all of you ~ Thank you, thank you, thank you ~

love,

bellamia

[issie]

Bellimia,

If it doesn't work, they will keep trying until they find something that does. Just know at first you are going to be really BOTHERED by it. It takes some getting used to. I like to have the hose in front of me, not over my head and I get an extra long connection hose - 10' so I can wrap it over my body and turn to either side. It makes a huge difference for me - to feel like I can move around. Don't make it too tight. Just tight enough to stay on and not come off and to keep the seal tight. There is also some aloe type gel you can use in your nose - if it bugs you. And, I find that using the humidifier really helps.

The doctor at Mayo had me start out by wearing it sitting in bed and reading. He said to get used to it before you try to go to sleep or else - it will be really hard to handle. You have to get your mind in gear to say "Okay - I can do this and it's going to help me." Then, get your nerves to calm down and accept it. Realize it will take some adjusting of the straps and things before you can handle it. I also got a long thin scarf - mines polyster and wrapped it around the part of the straps that touch my face and it keeps it from putting marks on your face.

Hope some of this helps.

Issie

[tinkerbella]

I'm a mess everyone. I have to eat 8 small meals and I'm so tired I eat in bed.... I'm falling asleep with food all over me. I've kicked my beloved pet out of the bed due to all the equipment in bed with me. I could never wear a scuba mask, so I'm not looking forward to this, but I have to change my thinking fast and pretend I'm a mermaid @ disney world. I used to pretend was a mermaid

as a kid and love mermaids now. So, that's what I'll do ~ : )

Mermaid Bellamia ~lol

[tinkerbella]

Issie~

Helppppppppp~ The nasal pillows....you can't open your mouth or they don't work ; (

Then, it looks like no water was used, ugg~ i'm very sic tonight after being out all day at the hospital.

DO I have to clean it every night? it is too hard for a tired potsie. I have a full nose and mouth mask ~

I LOOKED LIKE A MESS WHEN I TOOK IT OFF ~ GRRR ~

RESMEDH5i machine

i made a batch of gastrocrean for my face and pray to stay wrinkle free.

DARTH~BELLAMIA~

[issie]

Bella,

No you can't open your mouth or the air doesn't go down your throat and open your airways. You can use a chin strap and it reminds you to keep your mouth closed. I don't know if you're going to be able to tolerate a full mask - but, that will remain to be seen.

No you don't have to clean it every day - at least I don't have to clean mine - but, it is the nasal pillows. What did they tell you? Do you have a humidifier with it - that will keep it from being so hot and should help to mosturize your nose. There is some aloe gel stuff you can put in your nose if it dries out. With a full face mask - it has to fit tight and not leak or the benefits won't be there. That's why I like the nasal pillows better - there's less that has to really touch your face. I wrap a scarf around the straps and I never have marks on my face. The full face or nasal face mask will leave marks.

It's not an easy transition. It is hard to get used to. But, like I told you earlier - I couldn't use those type - but, that doesn't mean that you won't be able to. If you're a mouth breather it makes it more challenging because you don't have a whole lot of options. For some the chin strap won't work either. My dad is a mouth breather and tries to use the nasal pillow head gear, but even with the chin strap he won't keep his mouth closed. So, it doesn't do him a whole lot of good to be wearing it.

What is your pressure. I'm at 7. It's not too strong - so, it doesn't bother me that much. The lowest setting is a 3. I also have a ResMed the one that will auto regulate for altitude. I love it. I clean the humidifier and tubing once a week.

You will need to put it on before you ever try to go to sleep and just sit there or lie there with the lights on until you get used to it. Because initially it will give you severe panic. With time, you will get used to it. You may have to start out wearing it while awake and gradually start wearing it sleeping. To start with they told me if I could get 4 hours - I would be considered being sucessful with it. Now, I can pretty much wear it the whole night. Sometimes, in the early morning I take it off though. And if I'm having an extremely bad tacky day - I can't wear it at all.

Hang In There! It takes time and determination.

Issie

[tinkerbella]

THANK YOU Issie,

I'm a mouth breather for sure ~I thought it was a joke, don't open your mouth~ lol

I'll try a scarf good idea. Don't remember a chin strap ~

So the water is still ok in there then? Looks like I used it 6 1/2 hours last night ~

Fell asleep to a visual meditation on the computer. I SEE on youtube the show

you can buy a water holder that comes apart and cleans in your dish washer.

THEY should come that way.

You are a sweet heart ~

love you

Bellamia ~

[issie]

The water in the chamber is okay - just keep it filled. Use distilled water. Clean it when you clean your hoses and headgear.

Issie

[tinkerbella]

TY so very much..... I'm sooooooooooooooooooooooooooooooooooooooo tired I'm going to gear up, my allergies are so flared (sorry I sound like a baby) Talk to you tommorrow~ Have a wonderful night ~

bellamia ~ big yawn ~