COMREHENSIVE CARE ANYWHERE?

Dillard · Post by **Dillard** » Tue Jan 04, 2005 8:56 pm

Is there any comprehensive resource guide to help us manage our own treatment of Sleep Apnea once diagnosed?

I was diagnosed with moderately severe mixed Sleep Apnea with 16 episodes per hour, blood oxygen below 90 all night and put on a CPAP. BUT I feel like I just entered a black hole! Does anyone have the benefit of a proactive doctor who is managing their total care? Are we in charge of it all ourselves as patients? I am adjusting well to the CPAP, meeting with my employer to educate him so I can keep my job of 16 years now that I know why I have been a zombie for the past five years, seeing a life coach and going to group therapy for the financial and relational messes resulting from years of "wandering", but would I benefit from Physical Therapy for the aches and pains? Who do I see about the constant blistering sore on my nose from the mask?

Five years of full blown and increasingly intense symptoms from undiagnosed Sleep Apnea sure destroyed much of my life but none of my doctors are managing my care now that I was diagnosed. It isn't like I am short of physicians either---I have actually collected several while battling five years of constant unexplained fatigue, weakness, headaches, joint pain, muscle aches, tinnitus, confusion, irritability, and the resulting depression. Which one shoulc I pick to manage my care? The GP that ran blood tests that came back okay and told me it was all in my head and put me on heavy anti-depressants that stole even more of my personality away? Or maybe I should see the Rheumatologist who also told me nothing was wrong with me but put me on Trazadone sleeping pills because I looked tired. Better yet, maybe I should go see the Osteopath who suggested a few books on PH free diets and wanted to draw my blood and inject it into my buttock to spark my immune system? Oh----I know, how about the Neurologist at the sleep clinic who saw me for less than 10 total minutes over three visits. If they don't step up to help, maybe the office manager of the Home Health Care Place who sat in for the missing Respitory Therapist could manage my care?

Any thoughts?

snamvar · Post by **snamvar** » Tue Jan 04, 2005 9:21 pm

Hi Dillard,
I can hear your frustration. I have read many postings on this forum about how frstrated people have been by lack of being diagnosed promptly and got the right treatment. I also found this forum to be a grea source of information and support.
How and where did you get your sleep study done? I got my study at Stanford sleep clinic about a year ago. I did get follow up appointments for them to check my progress, each time with a different physician
3 months ago, I went for another folow up by a doctor that really got concerned with me not using my CPAP and emphasized about the importance of treating my OSA and what other complications could arise.
Try to find a good doctor in the sleep center you went to and have him/her follow up with you every couple of months.
You can't do much about the past, but you can treat this condition today. Good luck

wading thru the muck! · Post by **wading thru the muck!** » Tue Jan 04, 2005 9:39 pm

Hi Dillard,

Sorry to say but your story is like a broken record (does that analogy make sense to those under 40?). Your best bet is to spend time on forums like cpaptalk, talkaboutsleep and others a learn from others trials an tribulations. I'm there are good Docs out there but it seems not many of them.

chrisp · Post by **chrisp** » Tue Jan 04, 2005 10:27 pm

Are they like giant CDs Wader, We hear you Dillard. Don't give up or they win. Show them you can lick this dispite them . If you need to loose weight , do it. It may be easier on the hose. Those Trazdone, Flush them down the toilet . They only make your apnea worse. All depressants like Trazdone, clonapin, cyclobenzeprine (flexeril) alcohol. They just make it worse not better. Bet you really had a headache whenyou woke up .

Just remember we have been there. Some of us are still there but were not giving up.

This board is always here for you to release your frustrations. We understand.

About the mask. Give the Resmed ultra mirage a try. It places the weight of the mask on your forehead and that is adjustable to give a good fit. I also doesnt need to be as tight as others as it seals differently

Cheers,

Chris

Guest · Post by **Guest** » Wed Jan 05, 2005 9:22 am

If you are on CPAP but still feel like you are in a "black hole" or "fuzzy" when you wake the #1 cause is that the mask you are using isn't sealing properly. When that happens, on top of sleep apnea, you are trying to sleep with a machine blowing air in your face.

What mask are you using now? As previously stated, the ultra mirage is known for sealing the "largest number". However, if you are a side sleeper or read in bed, the Breeze Nasal Pillow System is popular as well.

If you want to read about it:

Ultra Mirage: https://www.cpap.com/productpage/25

Breeze: https://www.cpap.com/productpage/1451

Most importantly, give cpap.com a call, tell them what your using and what problems you are having. Those guys can diagnose blindfolded.