I am very worried and need advice

[Pugsy]

Gee the post eating goblin has struck again. My post from just a few minutes ago is gone and I know I watch it say it was completed.. Maybe I am more tired than I thought and I think I am really tired.

Oh Well....I was just agreeing completely with Robysue and saying she was spot on with what she went into.

Something is not working well. Could you post a recent daily detailed report showing one single night of data that looks bad?

If you don't know how to post an image of your reports here is how I do it.

Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.

Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

[sleepyjayyy]

I think you may have some depression ontop the sleep apnea. Just remember, depression is a medical condition that can be treated and is not a fault or weakness. If you are in danger of harming yourself, go to an ER.
I've had sleep apnea and depression concurrently since high school. I am 32 now. Has my life been awesome? No. Do I continue fighting? Yes.
I'm going to give you one avenue of getting advice for your financial and insurance situation. It's a community on a website called livejournal. Livejournal was much more popular about a decade ago, and it does skew younger than probably this message board for instance, but anyway:
well I can't post a link because I'm a guest. It's livejournal dot com slash poor_skills or just google "poor_skills"
Those folks know so much about resources and getting help. Make a profile and make a post there and you will get many helpful responses. Good luck.

[Acheron]

> And if you have a primary care doc, it's time to schedule a full physical exam and let the doc's office know that
> you need a lot of time to talk about a lot of problems. A full set of blood tests is called for too.

There is where things start to get unaffordable -- a full set of blood tests is simply beyond what I can afford. Just getting my cholesterol etc checked is $95. Same for a full physical examination.

$160/month of my expenses are medications -- doctor visits came to $140/month last year.... And I do have good visits with her, lasting 45 minutes or so (that's why they're so expensive).

I lost my state health insurance because even though my income is below the limit, my savings are greater than $2000 thanks to a small inheritance I received last year. So I don't qualify and didn't reapply for the health plan.

I don't know if any of my medications are causing problems with sleep apnea. I'm feeling -- and this is what has me worried -- just overwhelmed with health issues, and the lack of insurance just makes everything worse, and now the lack of sleep is really dragging me around. And I'm really starting to lose a sense of wanting to fight it.

[Acheron]

Yes, I do have depression. I know the standard line these days is that it's treatable, but I've never found it so. I've tried many different medications over the years and many different therapists, and some worked for awhile and then didn't, and things are better for awhile but then aren't, and nothing has really changed. I'm 51 and alone and this is only getting worse as I get older, and now with OSA and needing a CPAP machine there's no way I would ever consider having an intimate relationship with someone.

And trying new/different medications and new/different therapists is not an option to someone without health insurance and who doesn't qualify for assistance.

BTW, I don't have access to my sleep data -- I have to send the card to my supplier, who reads it and send the data to my doctor. All I have is data from my last visit a year ago.

I do think my psychological problems have manifested themselves as physical problems. It's hard to explain but I suspect deep down that they have all grown into a big ball that feeds back on itself -- depression leads to loneliness and lack of relationships and lack of activity that leads to obesity and lack of love and support and having no one to care about until by now it's all just gotten overwhelming and unfixable. I don't really want to die but anymore I'm feeling that I don't really care if I do, and realistically its about due anyway, I've never felt that way before.

[Acheron]

> Has your AHI under treatment ever been as low as 5?

I have no idea. All I have is the one readout of my data card from last February. It said my average AHI was 28.4. I'm seeing a doctor this coming Friday and am supposed to have new results.

After the visit last February he raised my pressure to 18 cm H2O (I think), but it was too high and my mask leaked so I went back down to 14 cm. That seemed to be working, more or less alright, until about 6-8 weeks ago when I started feeling worse upon awakening -- my eyes feel like they haven't slept, I'm exhausted, I don't feel like I can even start working until noon or so (I'm self-employed and can get away with that).

I usually take 200 mg/day Modafinil which was helping, but lately even that doesn't help and I still feel exhausted and tired and headachy with 2 x 200 mg/day. (No migraines, as someone asked.)

Someone else asked about vitamin D. I did have that checked several months ago and it was low, and I've been taking 2000 IU/day since.

Thanks.

[Elle]

This strikes me as one of those 'not what you are looking at but what you're looking with'. You will have to see someone about your depression and then some of the other things may seem more solvable. It is hard to tell whether lack of sleep causes this but it doesn't really matter since you seem to have many areas to take care of.

You will have to be motivated to solve them though and I don't think that will happen in the state of mind you are in. It doesn't matter how many solutions people come up with regarding cpap if you don't care what the outcome is.

If you talk to your doctor about all you have said here maybe they will have a new medication you can try. You can also give up. You do have a choice but I hope you won't. 51 is young and you can have a fulfilling life if you just take a step.

It is hard but just do one thing instead of focusing on all that is wrong. All the best to you.

[Acheron]

Yes, I know. The available medications are complicated by a condition I have called spasticity -- muscle rigidness -- from a spinal stenosis I had two years ago. SSRIs make spasticity worse.

And, as I said, finances are a problem so trying different medications, especially new ones, is a problem. If you've never been without insurance or money it's difficult to realize how quickly one's options narrow. In fact it's only recently that I've been able to see a real doctor instead of just a low-cost community clinic, though I don't know how much longer I can continue the more expensive route.

I do think this is a sleep problem now. I was well on top of the depression until recently -- in fact, I even thought I might have outgrown it or had it fade as I was older. I'm just worn down from not sleeping well, and from not knowing what I can do to fix this and losing hope that there is anything I can do, especially without insurance.

I know I've sounded very discouraged here. I'm sorry.

[Elle]

No need to apologize. It is discouraging.

If it is sleep related I hope some of the generous offers of information here have been helpful. There are a lot of people here who are very generous with their knowledge so you came to the right place for that. I hope you see an improvement soon. Take care.

[archangle]

Try to wrangle a PRS1 (Philips Respironics System One) Pro or Auto or a Resmed S9 Elite or AutoSet machine. They record a lot more data, you can read the data yourself, and most importantly, they can sort of halfway detect central apenas. A higher pressure can increase the number of centrals you have.

You might be able to get one of these good data machines from someone on craigslist. You may have to shop for quite a while before you find a good price. Be careful, though. PRS1 Plus and S9 Escape or Escape Auto don't record the good data.

The best thing would probably be another sleep test, but it sounds like the money may not be there. You could buy a new fully data capable machine from our host cpap.com for under $700. You do need a prescription.

Try all the cheap/free things like sleeping on your side, face, sleeping in a recliner, etc.

I thought I read somewhere that there's now a federal Obamacare group plan you can join if you've been without insurance for 6 months or some such.

[Elle]

Move to Canada.

[wmcanally]

Hello. You do have friends on here. Im a CPAP user now going on almost 3 months. alot of good advise on here. But more important i feel you also need to treat your depression. Life is a gift. We should cherish every moment we have and strive everyday to give thanks for our blessings. I will keep you in my prayers and pray that you find the answers to your qustions. Dont give up. Sounds like you just need some adjustments on your pressure and maybe a differnt mask. I have learned so much on here from some wonderful caring people.

May God bless you and keep you. Keep us all posted on your progress.

[Pugsy]

You do have access to your data. With the smart card you have
All you need is a DT 3500 Infineer card reader...I can get you the software.
http://www.directhomemedical.com/101435 ... eader.html
$40

[derek70]

Acheron, have you always used a Full Face Mask (Mirage Quattro in your profile)??
If you have a lower jaw advanced (like mine) check if the bottom mask straps were pulling your chin down toward your
neck, blocking your airway.




The cause of apnea is different for everyone, checking your data e investigating the cause is the best way of fight against apnea disorder.
Don't wait much from your doctor, you can make much more with the right information.





..

[RandyJ]

Acheron,

I want to add my voice to Pugsy's regarding possibly adding a mask liner + anti-leak strap from padacheek.com to your Mirage Quattro mask. I also use this mask as a backup, and those 2 products were the solution to finally getting rid of leaks and making the mask work for me. I also used an apap range of 14-20cm for a while, and with these 2 products my mask did not leak. The strap is $17 and the mask liner is $16, plus $3.50 shipping your total would be $36.50. This is a lot cheaper than buying a new mask (which might give you the same problems) and if you are lucky like I was these 2 items would be worth it to you at twice the price.

You said you recently experienced a 40 lb weight loss; it is possible that one of the meds that was working for you at 40 lbs heavier than you are now is causing an issue, or it is just a sleep/pressure issue, but until you can read your data on a daily basis and be more proactive with your machine settings, you won't know for sure. Getting that $40 card reader might make all the difference in the world for you to take control of things, which will make you feel less helpless and more likely less ambivalent.

Spending less than $100 of that inheritance you mentioned on these items could drastically improve your life. Try to look at it that way. Also, people here are trying to help you, and some of them are the wisest people I know on this forum and have never steered me wrong. Listen to them, try their suggestions, and things will improve.

Good luck!!

[avi123]

[quote="Acheron"]Yes, I do have depression. I know the standard line these days is that it's treatable, but I've never found it so. I've tried many different medications over the years and many different therapists, and some worked for awhile and then didn't, and things are better for awhile but then aren't, and nothing has really changed. I'm 51 and alone and this is only getting worse as I get older, and now with OSA and needing a CPAP machine there's no way I would ever consider having an intimate relationship with someone.

And trying new/different medications and new/different therapists is not an option to someone without health insurance and who doesn't qualify for assistance.

BTW, I don't have access to my sleep data -- I have to send the card to my supplier, who reads it and send the data to my doctor. All I have is data from my last visit a year ago.

I do think my psychological problems have manifested themselves as physical problems. It's hard to explain but I suspect deep down that they have all grown into a big ball that feeds back on itself -- depression leads to loneliness and lack of relationships and lack of activity that leads to obesity and lack of love and support and having no one to care about until by now it's all just gotten overwhelming and unfixable. I don't really want to die but anymore I'm feeling that I don't really care if I do, and realistically its about due anyway, I've never felt that way before.[/quote]


Acheron, the more I read your your posts the more I am convinced that in your case the sleep issue is secondary to mental problems such as a depression. This is the reason for my above post about seeing a psychiatrist who deals with medications. IMO, you should be able to walk into an emergency room in a public hospital and seek mental help.

Dr. Barry Krakow the well known Sleep Doctor from Albuquerque, New Mexico, in his book Sound Sleep Sound Mind devoted most of the writing in the book to such issues as you have. Let my try to post below an excerpt from the book.

I am posting a link below to Googles review of this book. You can read it but you can't copy and print pages:


http: [take this space out]//books.google.com/books?id=F1h1iyln3ksC&pg=PA8&lpg=PA8&dq=Dr+Barry+Krakow+on+Closing+in+on+sleep&source=bl&ots=MwEPKreZ8R&sig=amZ0itXq33KK6npCWg2OfGZyJgg&hl=en&sa=X&ei=878JT5XRAcyltweprM3PBg&sqi=2&ved=0CG4Q6AEwCQ#v=onepage&q&f=false

on page 8 you can read the chapter Closing In On Sleep .

I bet that if you email Dr Krakow in his clinic and attach your posts from this thread he would be willing to see you at no cost and advice you.