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Latest Activity

Andy posted a discussion

Resmed S10 AirSense - Anyone have one? Any feedback?

Hi All,I've just ordered a new Resmed S10 AirSense, and I was wondering if anyone here has used one?Any information or input would be appreciated!See More
yesterday
Andy replied to Andy's discussion Resmed S8 AutoSet II - No Longer Collecting Data??
"Hi All, Well, I went to the sleep doc today, and he ordered a new S10 for me! I still don't know why my S8 is not tracking data anymore. Anyone have any ideas?"
yesterday
Oscar Lemus updated their profile
Friday
liz4cps commented on liz4cps's group Prince William Co, VA support group
"Just found they have a Facebook for the REMedy event, 1st Class Sleep REMedy Wellness Health Fair."
Friday
liz4cps commented on liz4cps's group Prince William Co, VA support group
"Reminder: REMedy event is this Saturday, 10 am to 2pm.  Topics include: Nutrition and Weight Management with Sarah Kelly, Registered Nutritionist/Dietitian Oral Appliance Therapy for Sleep Apnea with Drs. Rena Vakay & Lara…"
Friday
Kay Day left a comment for Kay Day
"September 1, 2014 My apologies to Sleep Guide for not participating in a long time. In January 2012 I started classes at the local community college (my husband is an instructor there, and my tuition is refunded when my grades are above a C. My…"
Sep 1
Mary Z posted a discussion

Sleep apnea increases risk of osteoporosis

Sleep apnea/osteoporosis study finds “increased” health riskA recently published study may have found a connection between obstructive sleep apnea (OSA) and osteoporosis, marking yet another health…See More
Aug 23
Mary Z replied to ZolliStar's discussion Non-invasion approach that can relieve mild sleep apnea
"Hi ZolliStar, I've heard before that speech therapy, or singing lessons can help sleep apnea.  The problem at that time was there was no way to determine which exercises help.  Getting research done, rather than anecdotal would be…"
Jul 28
ZolliStar posted a discussion

Non-invasion approach that can relieve mild sleep apnea

Some people report that singing -- singing! -- really helps their sleep apnea. Dr. Stephen Park said that myology (which are exercises to strengthen muscles around the inside of one's mouth area) helps some. I think singing would be better.  If you read all the FAQs on this (click below), I think you'll agree that it makes sense for some. Maybe you.http://www.singingforsnorers.com/index.htmSee More
Jul 28
ZolliStar posted a discussion
Jul 20
liz4cps commented on liz4cps's group Prince William Co, VA support group
"I talked to Kimberlie at the Novant Sleep lab last week (at Prince William Hospital) and she said they would not be holding any meetings this year but are planning to start holding meetings again next year.  I'll let you know when we have…"
Jul 14
richard graham posted a status
"I just have mask called the Wisp. Hope it works. Anybody have experience with it. I have an ultra mirage nasal mask and get leaks at brid"
Jul 9
Andy posted a discussion

Resmed S8 AutoSet II - No Longer Collecting Data??

Hi All,First off, my apologies for not checking in for a long time.I've been using my Resmed S8 AutoSet II for almost 3 years! I feel great, have lost almost 30 lbs, am no longer sleepy during the day, sleep through the night, and have my short-term memory back.Yay!I've told my doctors that I'm the "poster child" for Sleep Apnea and CPAPs! It's been, and continues to be, such an amazing experience that I want everyone to know!Everything has been going well in CPAP-land, but in the last few…See More
Jul 7
hifay replied to richard graham's discussion mouth breathing
"What type of chin straps?"
Jul 6
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"No real improvement in sleep study.  Just not having to use cervical neck color.  What a bummer. Surgeon wants another sleep study in about a month or so (home one) Not sure if will do or not. "
Jun 22
Mary Z replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Ginny, how are you doing after the tongue procedure?"
Jun 22
Mary Z posted a discussion

AHI finally under five.

I have been on CPAP since March 2008 and had a good AHI when I started therapy (under 5).Then my AHI started getting worse- for a while it stayed in the 20's, then we got it to the high teens.  Nothing we did would help.  My doctor said it was due to the meds I take.  For a couple of years I just tolerated the high AHI.  I did another sleep study and changed to an ASV machine.  For two years I still had a AHI around 11-13.  Then all of a sudden - a month ago I noticed my AHI was running five or…See More
Jun 22
ZolliStar replied to richard graham's discussion mouth breathing
"FWIW, I've been alternating between my mouth device and my APAP. I haven't used humidity at all when I use the APAP -- and don't miss it, either. "
Jun 14
richard graham replied to richard graham's discussion mouth breathing
"I still use humidity but less of it. It seems to be working OK.."
Jun 14
ZolliStar replied to richard graham's discussion mouth breathing
"I rarely use the humidifier. I think it's less necessary during the summer when there is humidity.   I also switch between my mouth device and the APAP.  I like each for different reasons. Not sure with which I sleep better, though.…"
May 21

I was diagnosed with OSA  2 and 1/2 years ago. It is considered very severe. I also have Chronic Hepatitis C and have been diagnosed with several serious personality disorders along with Bipolar and major depression. I'm currently using Cpap and have every night since the Sleep study. The problem is its no longer working as well as it did in the beginning and I am right back to where I was before, except now I have a new array of symptoms which I believe are aggravated by my other illnesses. I'm currently seeking mental health services but without insurance and zero income, I cannot afford new cpap supplies either. I have yet to seek medical attention for my liver and will need to in the near future, as it is inflamed. I can't sleep for more than an hour or 2 at a time I've tried many things I've lost some weight, I have quit smoking, I try to regulate my diet and I don't drink caffeine. I have been out of work since the onset of the severest symptoms of the OSA. I can no longer sleep on my right side nor on my stomach because of my liver. My emotional state is near to catastrophic these last few months. Stress, anxiety, depression and many other factors have left me at a crossroads as to what to do about my finances and my health. I have a problem with admitting to people and my doctors how severe things really are and like a lot of people I don't want to apply for disability but at this point I don't see any choice. Every time I get behind the wheel of a car I put others at risk. I'm a carpenter but I no longer feel safe handling power tools or working in fall protection environments and if I were to be injured I risk the chance of infecting others with The HCV virus. My sleeping patterns are still out of control and since I still owe money to my sleep institute they will not furnish me any new supplies. Due to where I live there are no state funded medical resources either. If I were to tell the truth about my illnesses No employer would hire me and at 43 years old that doesn't leave me many options except to lie if I want to even have a chance at a job. I have lied about my health problems in order to find work for over 20 years with nothing lasting more than 9 months. I tell myself I did what I had to do to for my family, but I can no longer hide my symptoms from people and I'm tired of saying " I'm OK" because I'm not. I'm looking for any advice from anyone who may have similar issues but please refrain from any negative comments, I'm in need of some serious help. If anyone wishes me to elaborate more on anything feel free to ask. I'm looking for advice on the Disability process, obtaining inexpensive cpap supplies, how to talk to doctors, building and maintaining personal medical records ect. ect. anything that might help. I'd like to hear what you would do if you were in my position.  -Robert

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Robert, About the disability process- go to see your doctor and have him/her write a letter that you are disabled and including the diagnoses and ICD9 numbers.  Then go to the social security office and apply for disability. 

 If you have a local A.W.A.K.E. chaspter they may help you with CPAP supplies, also check ebay (they can only see mask parts, but ususally you get the whole mask), Craigslist, classsifieds, word of mouth.

I would talk to doctors frankly and to the point . Tell them what you told us.  Make a detailed list of your various illnesses.  Just ask for medical records, sometimes it's more effecient to fill out a release of information form at the doctors office detailing what you want- eg. all medical records, physicians notes and labs for office visit on and give the date.

Have you thought about trying some self titration if you can't see the sleep doc?

I face many of the same problems myself and have been on disability for 5 years and am on medicare, so I least I am able to get medical care.

 

Is their a Community Services Board whre you live?  I know you said they are no state funded resources.

Good luck, Robert.  Hopefully you'll get some good advice.

I'm not sure what self titration is... can u please elaborate? And thank you for your advice:) My first step is to get my mental health doctor on board and if he/she feels that my conditions can be managed ( I cannot take medication because my liver will reject it causing the damage to progress quicker than it already is unless closely monitored. I may not even be able to take the HEP C medication because of the danger of complete liver failure.) I plan to recontact my sleep institute and try and cut a deal something along the lines of a monthly payment when  I have income or put it to them bluntly my condition has worsened  and if they wish to be repaid I'm gonna need their help with my disability claim because I'm not just living with a disabling condition (if I dont get care I'm going to die plain and simple) if they refuse I will continue without their support any way possible my biggest obstacle has been getting the necessarily liver function/biopsy tests required to determine the damage inside my body that cannot be seen. I cannot deal with the sleep institute until my mental health is a bit more manageable ( its quite severe and a misstep on my part could land me back inside an institution against my will. I can not tolerate that again. )I hope to have the doctors concur  (as I believe the apnea can be managed as long as I can obtain my supplies and  get treatment for my mental issues)Its the liver disease that has me worried the most as the one condition that without treatment will surely result in my death although honestly all 3 have that capability and the cost without insurance or medicaid is astronomical current estimate is around $60,000 to $100,000 for the drugs or $500,000 for a new liver even if i was to find a donor match. The filters in my cpap are 2 and half years old!   I was lucky though a good friend brought me a new face mask a few months ago as he had an extra one medicaid recently sent him and since his surgery he hasn't been using cpap. I feel in my current situation I should be considered for temp. disability on the apnea alone and full disability for the mental/liver illnesses that cannot be cured without therapy and will result in my eventual demise.. now if only I can get into the doctors and obtain the records to prove it all.. I may still have a fighting chance.

Ah I read the thread on self titration your talking about managing air pressure correct? I was prescribed the maximum pressure the machine is capable of and I personally feel that I still struggle to breathe even at this level and could possibly use something slightly higher this machine is actually my 4th. I burnt 2 up in the fist few weeks a 3rd I acquired and reset it to my prescription on my current machine but its used in case I need a back up. This last machine appears to be functioning properly. I have no clue if a higher pressure is even possible, or even healthy for me I can't see a lower one doing a better job than it is now but after talking about this perhaps I may need to review this with the sleep people once I can reestablish an agreement with them. I once did a search about machines and there are so many different types and brands its a nightmare to get through it all.

 

Yeah, Robert, a lower pressure may not work you.  Personally I was doing some autotitrating and the machine kept pushing my pressure up and my AHI went up.  When I changed back to CPAP at nine I have had my best results.  Nine is close to my original prescription, but was not controlling my AHI at home.  Turns out my high AHI is due to meds I am on.

 I wanted to add an update, I am now currently under doctors care for my mental health and have their support for my disability case. In regards to my sleep apnea I still use it faithfully but continue to have issues with cpap treatment. My Liver has gotten a little worse, and I am now having problems with my kidneys and blood pressure. I plan to see a doctor about this as soon as I can and hopefully get some much needed help with my other medical conditions. I am still waiting on SSA to make their determination on my case. They have sent me to see 2 of their doctors, 1 for mental health, and 1 for a physical. The doctor who conducted my physical seemed very concerned, I did not expect this and hope his report is favorable to my case. I plan to keep building medical documentation about my illnesses with my own doctors. I still have yet to reestablish good communications with my sleep doctors which is my next step.

Sleepybob, thanks for the update. One of the best things I did when applying for social security disability was to hire a lawyer who specialized in that area.  This was after I had been turned down once.  Your case sounds more serious and it sounds like it may go on through without help, but if you get turned down think about a lawyer.   Sorry to hear your health has worsened.  Hope things work out getting reestablished with the sleep doc.

Good luck with the disability- sounds like you certainly qualify.  By the way they will pay you beginning  from the date of your first applicaton.  That's how I paid the lawyer.

i think with mental health issues you should be allowed a free advocate to state your case for you and make representations for you

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