Just plain tired of this...

josh · Post by **josh** » Wed Aug 02, 2006 10:50 am

Due to the complexities of sleep apnea...

What am I supposed to do?

I am tired...tired of all this...with no pun intended. I don't think CPAP is working out for me...that is, I am almost 100% compliant but I don't think it is actually working. Last night I actually didn't sleep...grrr. Insurance on this regards just plain sucks, and I have to wait upwards of a year to have my MMA done. This is almost life threatening for me...and definately life changing...and I have almost no control. Don't get me wrong, I have the will...oh I have the will, and the drive to be cured, but no one wants to "help" me...

I mean come on, I can't breathe!!! I have a straw for a windpipe!! And now I am feeling quite depressed...and I know there is no pill out there that can treat the "root" cause...and even more so, there is no one in my life that I can talk to, and have them take me SERIOUSLY, on how bad this situation is...including my wife!!! I have almost had it, I have NO IDEA what to do anymore...

But when it all comes down to it, after I have the braces put on prior to my MMA, and if the MMA fails, at least my teeth will be a "little" bit straighter than they are now! HA! That kills me...a life threatening condition and they think I am worried about how "straight" my teeth look? I mean come on people!! Get a clue!!

puffing billy · Post by **puffing billy** » Wed Aug 02, 2006 11:15 am

I am sorry to hear of your condition.
Many people reading this forum will provide help and information but they need clues.
Like how long have you been on CPAP, what is your titrated pressure, what pressure is your machine set to.
I notice you have a full face mask, I tried one and slept really badly as my nose collapses and the pressure didnt help.
You could try one of two things a use breatherite strips to hold your nose open or a nasal mask or nasal pillows.
I have been on XPAP since April and it has been a struggle but really worthwhile.

Regards

Billy

Guest · Post by **Guest** » Wed Aug 02, 2006 12:42 pm

Josh, how about asking your doc to switch you the old Remstar Pro2 or the new Remstar M-Series Pro, or the Remstar Auto? Those 3 machines will give you detailed session data regarding your AHI. You could get the software and card reader and know what's happening with your treatment. Maybe your pressure is wrong. Maybe you're still having a lot of apneas. Maybe you're having major leaks and your treatment is escaping your mask before it can get to your windpipe.

There is a reason this isn't working after 1 1/2 years and you could find out what that reason is and fix it.

tomjax · Post by **tomjax** » Wed Aug 02, 2006 12:51 pm

Yours is a much too common complaint.
Many report doing everything right and seem to have no benefits.
There must be a reason for many.
Keep in mind that many people without OSA feel crappy and have all your symptoms. Just so much we can blame on apnea.

I think one of the most important things anyone can do is to have a positive instead of a defeated attitude.

Next is to KNOW what is going on with your sleep. No way without downloading the data and taking a look.
This is a case for an APAP.

Do not give up. Lots of people here have been there. You can too.

Wulfman · Post by **Wulfman** » Wed Aug 02, 2006 12:52 pm

josh wrote:What am I supposed to do?

I agree with what "guest" suggested. Get a machine that'll help monitor your therapy. Apparently something isn't working and you need to find out what it is.
How much is your health worth?

Best wishes,

Den

Snoozin' Bluezzz · Post by **Snoozin' Bluezzz** » Wed Aug 02, 2006 1:04 pm

Anonymous wrote:There is a reason this isn't working after 1 1/2 years and you could find out what that reason is and fix it.

I agree with "Guest". You need some data to tell you why you are suffering. If you can get data that reports AHI, Leaks and other anomalies and all of that is within an acceptable range then you know you need to get help from MDs to look at other causes. PLMD (Periodic Limb Movement Disorder)? CSDB (Complex Sleep Disordered Breathing)? GERD (Gastroesophageal Reflux Disease)?, yadayadayada.

Without knowing whether or not all factors in your CPAP treatment are working reasonably you are shooting in the dark.

Do you know what your sleep study results were? Will you share that with us?

David

caty · Post by **caty** » Wed Aug 02, 2006 1:19 pm

Sorry you are having a rough time of it. I've been on cpap since June 7th and can't say I've really experienced much improvement. I was given a CPAP machine (ResMed S8 Escape) by the dme. My pressure was 6 cm. So for the past 2 months, I've been sleeping with 6 cm. Early on I wanted to know what my numbers were and see how things were going while asleep, so I purchased the S8 Vantage. I left it on CPAP but I was able to get my data every day. After reading a couple of discussions on this forum concerning sleep tests and the accuracy of the pressure people are titrated at, I decided to experiment and set my machine on APAP. Sunday night was my first night. I set the APAP to 5 cm - 8 cm. When I read my data the next morning, my pressure was 8 cm! If I am interpreting this number correctly, the pressure was on 8 cm 90% of the time. Tuesday night I changed the setting to a high of 10 cm. My pressure reading for Monday night was 8.4%. Last night (Tuesday) it was 8.8%! My leak rate was 0.0 for all three nights and all the AHI's were under 5. So for almost 2 months I was 6 cm and not seeing much improvement. These last few days, I've been sleeping better and feeling better. Don't even need the nap on the train. I'm going to keep it on APAP and monitor the outcomes every morning. I see my sleep doctor in a couple of weeks and will discuss this with him.

I think you need to consider the advice from several people on this forum and become more proactive in your treatment. Get yourself a better machine - the best you can afford. It really helps to know your numbers and monitor what is going on with your treatment and how you feel. Don't give up! Lots of luck!

Guest · Post by **Guest** » Wed Aug 02, 2006 1:25 pm

Josh, do you have a copy of your sleep study? You are entitled to get it. You could learn a lot from it and it may hold clues to the difficulty you're experiencing now.

I read in your previous posts you were diagnosed with severe OSA (53 events/hour), and you've already had surgery for a deviated septum and the UPPP surgery. I feel for you. Especially undergoing UPPP. I've yet to read one story where that was successful.

I know you want to have the MMA/GA surgery, but in the meantime, you really could get to the bottom of the mystery of the ineffective cpap therapy. Start by getting a copy of your sleep study. Then see if you can get a machine that tells you what's going on. It won't remain a mystery and you'll know what needs to be done to make it work.

josh · Post by **josh** » Wed Aug 02, 2006 2:01 pm

I must say that I have been extremely proactive in this whole process ever since I have been diagnosed...I always thought I really didn't have depression, there was something more. I have seen my sleep study before, and I am very open with my doctor and wtih treatment options. I am convinced now I know what is wrong with me...the lower part of my airway is extremely constricted, and an MMA apart from a trach are my only options...

My CPAP is at 11, and I have very good seals. With out CPAP I am running an AHI of 56 or so.

I would love to get a new machine to monitor my data, however I am stuck in a bit of a predicament...I need braces to get my surgery done. I am fortunate my dental insurance will cover some of it, however I still have to fork over another 3300 dollars to have them put in. And on top of that, my health insurance has no DME coverage, up to when I meet the deductible, and then I have to spend 1500 on DME, and then they will cover my DME at 50%!!! I would love to just be able to purchase one, but I can't...I can't afford it. So basically I have to choose between the braces and the CPAP...blah. And I choose the braces, because in the long term it may offer me a cure...but in the short term I am screwed.

Hey, maybe I wouldn't be so aggrevated if I wasn't so tired. I also have 2 kids, one is 2 months old, and I feel terrible because I can't help out at night. Sleep (however crappy it is) is extremely important to me. And if insurance could recognize the fact this is a serious but treatable condition maybe I would feel better.

I am sorry if I seem negative...I am just TIRED...lol. Seriously tired.

Wulfman · Post by **Wulfman** » Wed Aug 02, 2006 2:11 pm

Josh,

In your first post you said "....I can't breathe!!!".

How did you mean that? Does it feel like too much air or not enough?
A pressure of 11 isn't HUGE, but if you have a constricted airway, it could feel like it. Also, I presume you're using C-Flex? If so, which setting?

Den

Grimace · Post by **Grimace** » Wed Aug 02, 2006 2:11 pm

I understand you situation all too well. I also delayed treatment for far too long because I couldn't afford to pay my insurance deductible and my portion of the cost of the study, machine, and other expenses. After doing a lot of research, I decided to just buy a used machine, which was much less expense and trouble. It worked out great for me. If you think you might be willing to travel that path, you should keep an eye on yahoo auctions. I've seen good used automatic cpaps go for as little as $300, humidifier included, and I've seen brand new Remstar autos with heated humidifier sell for $ 400. You could probably sell the machine you have now and recover enough of your investment to pay for the automatic machine. Good luck with whatever course you choose, and keep the faith.

snork1 · Post by **snork1** » Wed Aug 02, 2006 2:11 pm

There are many MANY things that can be done to TRY to make CPAP work before giving up on it.

I assume if you are serious about the MMA, that you have been checked out to determine it will work.

While waiting for the MMA, and to verify it will indeed work, what about getting a dental device such as TAP through a certified sleep dentist?

Or if you want to go the budget route and a bit more temporary, maybe try out the Somnoguard-AP (not sure about the spelling) which can be picked up without a prescription for $169. It very similar in PRINCIPLE to the TAP, which is similar to MMA in function.

I just picked up a TAP-T myself, unable to afford the time off work for an MMA, and I might be one of the lucky ones, since so far its working GREAT for me.

Just a thought.

sidesleeper · Post by **sidesleeper** » Wed Aug 02, 2006 2:20 pm

Josh, what choice do you have ?

josh · Post by **josh** » Wed Aug 02, 2006 3:08 pm

Wulfman,

What I mean by I can't breathe is that how can I breathe with a pin hole for an airway?

My CPAP used to be set at 7 or 9 (I don't remember), and it was upped to 11 because it wasn't working at the lower pressures. When it was changed, I noticed that there was more pressure, but now after being on it for 6 months or so at 11 I don't feel the pressure...its there, but it doesn't feel like its doing anything.

I am going to be honest...I looked at the website http://www.robitics.com/mma for the guy that had the MMA done. My x-rays (preop) look EXACTLY like his. He complained that the CPAP just stopped working, and that is exactly how I feel.

For the equipment I am using what you see at the bottom of my post.

Snork1:

I don't intend on giving up on CPAP...I just feel like it is being ineffective. Last night I couldn't sleep at all with the machine...just happens once in a while, and then I was torn because I know I am not breathing without it. I just don't want to be tired anymore. I don't want my wife to think less of me because I am tired.

As far as being serious about the MMA, yes I have been checked out...from a different sleep doctor to an ENT to a plastic surgeon and orthodontist from Lahey Clinic (I heard it was good), and they all agree that I am a good candidate, and they told me there are not many out there. When I looked at the post-op xrays of the website mentioned before...it just makes sense!! The proof is in the pudding!!

I heard that dental devices are expensive, and don't always work...so I was planning on steering clear of those.

I suppose I shall ask my sleep doc about the somnoguard when I see her this Friday.

Sidesleeper...I have no idea what you are asking about...

You know what would be great...having a machine that told me what my events were...and then being able to control the pressure to dial it in right...just my thought.

Cheers...

snork1 · Post by **snork1** » Wed Aug 02, 2006 3:25 pm

[quote="josh"].
You know what would be great...having a machine that told me what my events were...and then being able to control the pressure to dial it in right...just my thought.

Cheers...

Mask