New to the group and wondering what is next?

Welcome Fuitloop! I don't have much to add to the good advice already given but just wanted to re-inforce that cpap therapy is no biggie so hang in there and feel better. And nice to have you back, Liam!

Sufferin cpap, the login goblin got me again! That was me above.

Hi Fruitloop,

You clearly have health problems that are making you so tired on an ongoing basis. Very hard to take control of this situation and make the necessary decisions you have to that will start you on the road to being the energetic and happy person you and everyone else wants to be.

After reading your post my first thought was that you need to be careful and try to understand your own condition as best you can. You are going to need to rely on your doctor considerably but just remember doctors are human and not only do they try to steer patients toward the safest solution, they have their own agendas and do make mistakes.

You said you have a nervous system disorder affecting brain functions. You also said you have severe OSA ( if you check the posts on this forum most say they were diagnosed with severe apnea, that's what my MD told me, so nothing new there) but did the titration state anything about central apneas? This determination may impact the type of xPAP unit best suited to treat your condition.

If you have the garden variety OSA, like most, then you should be prepared for numerous adjustments to your xPAP unit while the professionals tweak away at what's best for you pressure wise.

My own titration, done under idyllic conditions, suggested my pressure be at 8 cm and my MD did not want to prescribe an autoPAP. I did end up with an APAP where the supplier set high setting at 8 cm and the low at 6 cm. Was not able to breath at this pressure so adjusted the unit myself to low of 8 cm and high of 12 cm, later adjusted again to high of 16 cm. Have since bought the monitoring software and lo and behold 90% of the time I'm at 12 cm. Doctor played the see you next week game.

I'm sure my life would have been totally inconvenienced with doctor follow ups and feeling downright miserable if I didn't take my own action. Point is, take as much control of your life as you can, educate yourself and don't settle for less than the best treatment you can get.

Please question your doctor about the presence of central apneas.

There are many sincere and knowledgible posters on this forum who are more than willing to give you all the help they can. It also may help to just vent here if things go wrong and you're in the dumps.

No one wants to feel lousy so give it your best shot. Next time make a happy post and make the rest of us feel better!

All the best.

Bob F

Frootloop,

Did we introduce you to our class clown, Liam. He is pretty fun to have around here.

We are all struggling to get better together!

Sleeping with the Enemy a/k/a OSA

You all seem like a truly warm fun loving group of folks, which made me smile which I thank you for.

The hosptial called yesterday morning they have me coming in on Wednesday night to do the CPAP.

As for someones question to me about the Doctor telling us it was severe. I am not sure I understand what you were inquiring about but he told us that my levels during sleep are 76%. Is that what you were asking? I am not sure if that is what you were asking,but I know that I am going to take the time to take a crash course on this and educate myself.

I also went to my Family doctor yesterday for he is the one that sent me to the Neuro Doctor and he highly suggested that I obtain a medical alert bracelet with the following information on there....Obstructive Sleep Apena Severe and Dysautonomia and told me of a local jeweler that would do this for me, well we went last night to the jeweler and he had me a very nice little bracelet made up in 30 minutes.

My Doctor told me the reason for wearing this is because if I were in a accident or something that required surgery that the hospital must know this that when one is put to sleep who has apena like this that they must know so they can adminster the proper techniques or it could cause major problems. Plus with my tendency to faint now the paramedics will know what the problem is and be able help me without trying to guess what the problem is. I am truly hoping once i am all set up with the CPAP that alot of this nonsense will settle down.

So that as simple as it appears to be makes me feel a little safer about leaving my home knowing all they have to do if the need arises is look on the bracelet.

Also I thank you for the information on the upcoming lecture. I am going to try and attend this as well.

Once again thank you for such a warm welcome.

Liam1965 wrote:

And if the size doesn't feel right, speak up. Don't let the DME put you into something because they tell you it's right, we hear story after story of people who ended up in a mask way too big or small for them, because the DME only had one size, but told THEM it was the right size for them. Improperly fitted masks (and uncomfortable/leaky masks) are among the highest reasons for lack of compliance.

Liam, Hiyo Silver, Away!

Thank you for that advice. I was diagnosed with OSA on February 11, 2005. I went in last week to the sleep disorder clinic and slept through the night on a CPAP machine. Well let me tell you it was an awful experience. They tried three masks on me and they were all ill-fitting. The one that HURT the least is the one I finally fell asleep with. (More like lapsed into unconsciousness). I'm an African-American Male, 6'0" and the masks just kept crushing my nose. I felt like someone had duct taped a Bic pen to the bridge of my nose. And the technician kept coming back complaining of air leaks and adjusting the masks until each one of them were so tight they actually brought tears to my eyes. Even after the one I settled with was fitted, I woke up with red marks all over my face. Especially my forehead!

Are there any masks specifically made with different racial or ethnic groups in mind? Or can anybody recommend a mask with a wider top or any other suggestion that might help me. My doctor told me to do some research and request several masks to see which fits the best.

If I had to wear one of those masks I had on from the sleep clinic, I’d rather stay untreated than deal with that level of discomfort. I would never be able to sleep with those monsters on my face.

[/quote]Are there any masks specifically made with different racial or ethnic groups in mind?[/quote]Here's one I ran across the other day while doing my own CPAP research: http://www.advanscpap.com/cpap-masks/ultra-mirage.html Not sure if it is exactly what you need but worth a look. Good luck.

sturgi,

Look at something called a nasal pillow interface. They work with little diaphram type pillows that rest gently in each nostrel.

click on the following to see what they are:

Aura

Breeze

Swift

Hey I wish I had known about this forum 2 years ago when I started on cpap. I had a very hard rime learning to sleep with it. Now that I have been reading your posts, I have found what a lousy deal I got from the DME! I have a Resmed C6, which likley isn't even made anymore. My insurance was supposed to cover 50% of the machine. The DME said my share was $450. So a $900 machine right? Now,2 years too late I find my insurance company made an "adjusted" payment of only $39. Which basically means the insurance company is in cahoots with the DME, maybe even that the DME gets off the books kickbacks from the insurance to tell I'm paying 50% when I am actually getting charged about 95%. Oh and they charge me $60 a pop for a filter every 6 months, which I see I can get on cpap.com for about 10.00.

Don't let anyone tell you that mathematicians are smart. So find out everything you can and don't believe anything you can't verify.

Thanks guys for the support and research. Just this past year (2004) I was diagnosed with having cluster headaches http://familydoctor.org/035.xml and the forums I found from other "clusterheads" was invaluable. I appreaciate you helping me out. Like suffering from clusters having obstructive sleep apnea is something that your friends and family can not relate too. My ex once told me to just rest over the weekends then everything will be "back to normal" on Monday. FAT CHANCE of that happeing! So now that I have been diagnosed I feel like at least I can say to people when they complain about me not having enough energy to meet them after work that I have a real problem!

And I will be back from more questions!

Hi, Fruit Loop-

Another place to go for a bracelet or necklace is http://www.medicalert.org
The will engrave that jewelry item and put their 800 number on it. Then, if you have a medical problem, all your medications and conditions are on file
and can be accessed through a phone call. This is especially good if you were unable to respond. Best of luck-

Dan