I'll try to keep my story short. Began having at minimal SA problem since I was 19 and suffered from a horrible upper respiratory infection. 8 years ago started having sleep debt problems that were misdiagnosed as untreatable Hypo tension, then by another doc as a possible brain tumor.

I'll be blunt here and state that I have physically unable to work for 4 years. My lady knew this when we got together 3 years ago. november 2006 my problems got so bad I could no longer go fishing, getting the mail was difficult, I started sleep walking in a trance state while awake, and started having "Sleep Debt" so bad that it appeared to be Narcolepsy.

Well after a year and  half now of 2 different free clinic docs diagnosing it as OSA, and run around on Medi-Cal and SSI (1st doctor said I'd need it for life as screwed up as my body is), I finally got insurance through my county and got my sleep study done. Definately OSA proven for the sake of my SSI claim. 54 incidents an hour.
I have a long history of OSA in the family as well as heart problems and stroke.
I'm also like 45 lbs over weight, and still have sleep debt even with the cpap.

The county got me a nice cpap and all, but my actual doctors follow up for my study now isnt until June 30th.
The entire time my lady and i have been together shes been footing the bill and towing the line for our household. things have been really tough.
Doc #1 said not to work, or drive and that CPAP would only make me comfortable so get the SSI claim going.
Doc # 2 Agreed and suspected Narcolepsy on top of the OSA.
Doc 3 evaluated me, said not to work as it could be hazardous, and got me the sleep study.
Now my problem has been this..
NO ONE has documented it on my medical records saying I'm not supposed to be working and that I'm at risk for heart attack or stroke.
On top of that I'm now due for my administrative law hearing with SSI.

The CPAP seems to make my day easier, but I don't feel all that rested. I mentioned it to the Tech at Sleepmed, and he was saying depending on how many years I've had sleep problems depends on how soon it really does its job.

I guess what I'm frustrated about is my lady is saying NO SSI, get a job.

I know were not doctors on here and whose who are can't offer a prognosis, but has anyone been this bad and actually been able to get a real job after cpap and how long did it take to be able to do so?

This is hard to answer...everyone is different.  Many have never stopped working...and we are all at risk for heart attack and stroke.  Shoot some have had a stroke or MI.  Alot will depend on other conditions you may have and how the SA affects you and those conditions.  I do believe that for many, such as myself, that there is a risidual affect of untreated apnea...going so many years not treated and burning brain cells.

You mentioned Narcoplepsy...did the sleep test include an MSLT (aka nap test) done the following day?  If so, that is of more concern in regards to working and driving then the treated SA is.

Do you have an existing heart condition or blocked arteries?


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No Existing heart condition that I know of. Got an ECg on my first diagnosis day. I do have a very fatty liver and High cholesterol.

No they didnt do a nap test. Basically after my one night of sleep study ( split in 2 parts, without and with the cpap) i have seen no one but the Tech from Sleepmed. I'm still awaiting the June 30th follow up.

And I don't know if anyone else has had this happen but since i started the cpap there are time throughout the day when I feel like I'm getting a head rush, and my pulse races, but I dont get dizzy, just very shaky feeling without shaking.

I think I also forgot to mention that I am now 41 years old.

Hi,
I am not a CPAP user myself. But I have come across lots of cases of users having difficulty in compliance.
Where I come from (asia), sometimes is not the treatment that is putting people off. The cost of having and maintaining for lifetime is the first hurdle. There are currently no insurance or medical benefits that will cover the cost of having CPAP equipment.
Most users would see the true benefit, then they will commit into purchasing which is a good thing. That means the treatment have been successful. But the take on rate is slow. Sleep apnea not only poses a social problem for the spouse, but long period will lead into health complication. There's no cure for sleep apnea, CPAP or surgery are just to manage and preventing. If early detection and treatment for apneaschild, will he avoid the current situation?

Apneaschild,

How long have you been using your CPAP?  It has taken years for your health to degenerate to where it is.  It will take quite awhile to get it back.  I was in really bad shape to and I think it took me a month or two to start seeing some improvement.  Look for the small, subtle changes, being able to get the mail, etc.

You get the SSI documentation you need from your doctor.  All you have to do is tell them you need it and the specifics of what you need.  Why not have your sign. other go with you to an appt. and have the doc. talk to her?  And as Mrs. RVW says, if they suspect Narcolepsy, then insist that you have a MSLT test done.  But I had the same symtoms as you, I fell asleep at inappropriate times.  It felt like a magnet pulling me down and I couldn't do anything to stop it.  Here is my story:
Personal Experiences
And yes, I work full-time, play the flute in multiple ensembles, do triathlons, am a single mom, etc.

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

My biggest problem right now Doctor wise is this.

I am going through my county's version of ability to pay. They are seeing me at the local hospitals pulmonary clinic and the person seeing me is a FNP. Basically I'm getting kind of the medical bums rush.
I called to try and talk to someone about the weird rushes I'm having that feel like my heart is racing and I feel like I'm head rushing  but not dizzy and it feels like how do i put this, that my BP is so high my veins are throbbing.. the closest I could describe to someone is a major Caffeine rush, say drinking 10 shots of espresso.

What response do I get? Sorry your scheduled appointment is June 30th at 9am you can talk to the doctor then about your concerns. Also that I'm lucky as people calling in now aren't being seen until august.
So I tell the person who co-ordinates the pulmonary unti whats going on ans she tells me to go see either the free clinic doc who sent me there( because they cannot deal with this their a free clinic) or my county appointed Doc (through the program I'm on) who's secretary keeps telling me he cannot see me in any regard about my sleep disorder until the NPR in pulmonary sends him a referrel as to my treatment plan. But If I have the flu or something I can go see him for normal stuff like that.

The only medical help i can get is from either of those 2 people as they are who the county will pay for.

It sucks having no income.  But it sucks even more that the NPR is the same person who did my initial evaluation and who would not listen to me about my side effects of the apnea or any of my health concerns.
Oh and before someone suggests it..  No they will not let me see anyone else as she is the only one at county who does Sleep disorders so I'm stuck with her. I seriously doubt she'll help with my SSI claim.

So far the 2 free clinic docs told me not to work( not advised me not to but ordered me not to) Not to drive, and to go get SSI. When I began the SSI process neither one would sign anything stating i cannot work, and one blew me off completely and even denies ever seeing me though I have a ton of charts from seeing him that he signed..

Why? and this came from Doc 2's mouth " I'm not an expert and if I sign something like that I'm medically liable to the federal govt if my diagnosis is wrong." I then said but you told me not to work. She says well you can't but I'm not signing anything too much liability.

As for Doc 1 who has blown me off altogether.
1: He is an expert in his field as a researcher and teaches Pulmonary and sleep disorders at Stanford.

2: He runs 3 sleep centers in the SF Bay area.

3: The guy tells me i cannot work, go get SSI as I'm permanently disabled as bad as i am health wise from this, that cpap will only let me live more comfortably and not fix anything. He also says to me if I don't get a sleep study and a CPAP within 6 months I'm most likely dead before the end of the year. but he never logs any of that on my charts that he said this.

4: he wanted me to come to his sleep center on Medi-cal so he could "Save My Life" but since Medi-cal refused me I couldn't.

 He never once told me about or referred me to the county's sleep studies or ability to pay program. Thats "Saving My Life"?
It took me a year to even find out they did sleep studys, and doc 2 immediately referred me there.
 So I suspect the whole ignoring me and my attorney to document his saying I cannot work, comes from pure greed and the liability thing.

ooops venting big time here. just frustrated.

Oh and to answer the question how long have i been on CPAP 7 days.