Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

Sick and tired of wait, expense and interference. So taking control
#1
Some Background You may want to skip down to "What I'm doing now" - This could get a bit wordy

I had the feeling that something was changing in my throat over ten years ago. I went in for a physical and told the doc I was having trouble swallowing, choking on my own spit sometimes. Was something happening in my throat? He gave a little condescending laugh and he told me to drink more water with my meals, I was getting older and probably didn't produce as mush saliva. I pushed a little more, being skeptical of that answer. So he says I could go to a specialist and they could do some sort of xray video of my swallowing.. but at quite some cost for something he thought could be treated by drinking more water with my meals.

Silly me. I'm getting old. Guess I'll drop it. Dropped going to that doctor for a long time too. (He was fresh out of school and I cut him a little slack now, but still that is what happened.)

But I'm someone who is well in touch with the happenings in my mouth and throat, I was a professional singer for many years, with a period of physical study of the voice a few decades ago. I never snorted when I laughed before, snoring developed, It was obvious to me something was closing off and partially blocking.  But I let it go.

Several years later I see a rise in Blood Pressure and the same doc responds in the usual way, testing, prescribing meds, following up, more testing, following up, another test, follow ups, increase meds, add meds. All logical, but I make just enough to get by and I was feeling over tested and over medicated when I felt I could just face the facts, lose weight and be healthy again. I dropped about 40 pounds and felt fine again for a couple years.

Later, over a period of a few months I started getting severely tired in the afternoon, if I sat still, driving, started falling asleep at every movie I watched etc. My BP was up again and went back to the doc. He focused on the BP and bad cholesterol levels again, after a few changes and tests I'm still complaining about being tired and he says guess what? "Well, you are getting older." 

Crap!!! I'm getting older again. Why do I keep letting that happen?

This time the meds keep getting increased, the tests all come back good except my BP is not responding to the meds much at all. I mean it came down from around 200 over I forget to around 150 over I forget, but that's not good enough.

Over the past few years I had tripped across sleep apnea articles and was vaguely aware of what cpap did. Complaints about my increased snoring along with my continued feeling my throat had changed I had relearned how to swallow and wasn't choking anymore "Down the wrong tube" but awareness of what happened when I relaxed as if falling asleep and how something closed off... I started to think for sure I had a sleep apnea problem.

I finally took a good look at OSA sypmtoms. Check, check, check, check, check, check... Wow that's me.

Sheesh this Stuff is Expensive

I have $5,000 deductable on my insurance and lets just say that is a sizable chunk of my disposable income. When I see the costs of sleep studies and equipment, more office visits etc. rather than dispose of my income I naturally start doing research to find a cheaper way.

At first I though I would just get a cpap machine, fiddle with the levels and ta da! But I kept reading stuff. Dang... I need a prescription. (yes I realize there is craigslist and the international market- but doing a test and buying an autopap seemed like a reasonable expense, and i felt competent enough to figure it all out using online educational sources. Eventually I find a company that offers home sleep studies and sells machines.

The Home Sleep Study [b]5/8/17 [/b]


Time 435.2

AHI 70.9

ODI 71.2

Mean Sp02 Sat. 90%

Min. Sp02 Desat.  68%

Mean Heart Rate 67.6

Diagnosis:
Severe Obstructive Sleep Apnea (G47.33)
Recommendations:
  • Consider treatment with nasal continuous positive airway pressure (CPAP). If the patient chooses CPAP therapy, a nocturnal PSG with CPAP titration is recommended. As an alternative, an Auto PAP with pressure range 5-20 cm H2O with download is an optio Consider PAP interface (mask) fitted for patient comfort, heated humidification & PAP compliance monitoring (1 month, 3 months & 12 months afterPAP initiation).
Mandibular advancement device for mild to moderate sleep apnea.

 ENT referral to look for site specific obstruction and possible palliative procedures is an alternative. Clinical follow-up as deemed necessary would be appropriate. Patient should be advised on the long term consequences of OSA if left untreated, need for treatment, and close follow up. Retesting or follow up is recommended to ensure the apnea is controlled and the symptoms are relieved on the chosen therapy.
Untreated obstructive sleep apnea is associated with hypertension, heart disease, stroke, daytime sleepiness, cognitive dysfunction, mood disorders and sudden death.


Cool. Send me a machine

So I go back to their site and pick out an AutoPap machine. At this point, for the lowest cost option all they need is a prescription. Or... at a higher price point I could just buy one on the international market. What? I thought this was the prescription. Oh well. I make a doc appointment and take the report in.

Doc is like "Wow, you've got a really serious problem."

"Yeah, I've been tired as hell all the time."

"I can believe it!"

At this point I somehow resisted asking "Are you sure I'm not just getting old?"  But I still need his cooperation. No point in stirring things up. But now the doc is taking it very seriously. My condition is so severe I might need BiPap and we really need to get a full sleep study done. I'm thinking "Crap Crap Crap"
but I go along with it, bite the bullet, arrange some help from the family, figuring initial costs are going to get around $4,000

Hey! I'm dyin here!

I call the local hospital sleep study center every Monday for 6 weeks. They give me various forms of "We are still waiting for insurance approval" I wan to just say I'm going to pay out of pocket anyway, with a high deductible, but now the family is involved and they think it should go through the insurance in case I end up using all the deductible. Back and forth. Blah blah blah. "Why haven't they scheduled it yet? Have you done this have you done that." Meanwhile, though I do want things done logically, I'm growing angry it's anybody elses business how I blow some air into my nose. And my health and mental alertness really has me concerned on another level.

Finally I get an appointment for a mid-August sleep study. I'm thinking dang, that is 3 months after hearing I have something severe that could kill me. But I'm so frustrated with the process at this point i see no point in looking elsewhere and starting over with the filing and waiting.

Look What I Found at a Garage Sale

I had been telling some about my condition and how I hoped to treat it, so a co-worker happened on a machine at no cost and gave it to me. Then began 2 days of reading here and elsewhere to decide how to proceed.

What I'm Doing Now

The machine is a ResMed S8 Autoset II. It has the Hi4 and a f&P Zest Nasal Mask. It is missing it's data card and reader. I decided the greater risk would be to not try it while I wait. I also order a data card and reader on ebay, thinking I can then at least get a basic report... maybe, then upgrade if it turns our my Docs guess at my needing Bipap was incorrect.

The machine looked spotlessly clean, but I wash it up again with just soap and water. (Still need to research proper cleaning methods and supplies)

I downloaded the clinician manual and thumbed through it, and then took a stab at my initial settings with autoset on.
minimum pressure 6, max 18.

Mask Ultra.  Not sure about this one. it was the setting already in memory and there is no "f&p zest" setting. I guessed the previous user might have it on the right mask setting.

Tube length 2 meters

humidifier H3i  huh? the software did not have the left "Change" button enabled. It appears I can't change that setting. I've verified different ways it is an H4i. I haven't really explored it yet, but I don't think it is heating up, water doesn't drop much.

First Night with Cpap

So the first night I get past the initial discomfort. I'm uncertain about the mask seal, especially after I notice large amounts of air escaping around the elbow joint. Later I research this and find that it is a design feature and I learn how to test the seal; excellent seal.

I think I overfilled the humidifier the first night and i was getting some water blown into the hose, or maybe it "rained out" I keep my room pretty cold.

I don't wake up that night. This is highly unusual. I normally make a few bathroom trips and roll over a half dozen times, wake and look at the clock etc. Downside is my body is really stiff and sore from not moving much, especially my neck. May need to focus on my pillow height more now. But I get up with the alarm and I dressed and ready to go out the door in about ten minutes. Wow.. what i am going to do with this extra hour and a half I just gained? I feel energized and more alert, but i decide to keep it calm, could be some psych placebo effect going on. But I stay alert all day and feel a little wired through the day and on into the night.

i should mention at this point I had restarted taking Claritin D 12 hour with my meds and vitamins each morning. My doc recommended I get off the "D" to help with BP. But I hadn't seen any difference in my BP and My lack of energy, drowsiness was off the charts without it. Plus had 2 large cups of coffee per usual. Normally that would just help me maintain consciousness. But that day I was flying like a kite, feeling a tingly mental alertness buzz.

I have a few nights under my belt Now

I am highly optimistic now. Can't wait to see a report, but my gut tells me I am getting sufficient pressure and relief from a standard autopap machine. I keep sleeping through the night now other than turning over once or twice and falling back asleep. I have good energy; this marathon typing session would have been impossible a few days ago. I don't check my BP often enough, but I saw no big drop after the first night. Patience and hoping on that. I've been dieting and compliance there seems easier. I use a calorie counting app and  it's not some monumental effort to make my entries on it now.


I did have one negative episode on my third night. I was congested and I'm guessing pressure increased. Sure would be nice to have data. But i woke to a super dry mouth and throat so dry it took a while to build up saliva and swallow again. Air was bleeding out between my lips, though my mouth was closed. Only that one time. I use a nasal rinse bottle to assist with clear sinuses. (There is something positive my Doc turned me on to.) I think I will normally be able to use the nasal mask and plan to stick with it. Possibly get a face mask for congested nights if it turns out to be a frequent problem.

Now I'm so full of energy, I cut back the coffee and the Claritin D, I need to learn to get myself to bed at a decent hour again. Without extreme weariness sending me off to bed every night I've been staying up a couple hours too late. I'm sure I'll feel even better when i get into some sort of regular sleep pattern.

I know the S8 has poor reporting, but I look forward to pulling some data in a few days when the hardware arrives. The plan I am hoping for now is, if the sparse report from the S8 indicates something positive, to upgrade to a S9 so I can use software and get help here to refine things. If I get my AHI brought down and there are no other complications then there is no freaking way I'm paying for a sleep study. Might even try to get an RX again from my Doc armed with some sleepyhead reports so I can buy machines and supplies without visiting back alleys and such.
Post Reply Post Reply
#2
Hats off for taking the initiative of trying to better your life while the various players are giving you the run around.

I had a similar experience initially, it took forever to get an RX from my doc.  Despite having the report from the Sleep lab that stated I had severe problems, the doc would not send the Rx to the CPAP clinic.  I finally got fed-up and showed up in person at the doc's office.  "No, no, your results were fine, I would have remembered if anything was wrong".  After which I pulled a copy of my report.  There was an "oh cr*p" moment, and 5 minutes later I was off to the CPAP clinic with my Rx.

I still wish the changes were as drastic as what you experienced.  I'm still fighting with short nights and somewhat having a tough time with the machine.

I'd say your idea of trying to get an RX again from your doc would be a good thing now that you're not in "a rush".  Visiting back alleys and such is never a good thing. ;-)
Post Reply Post Reply
#3
you might see some symptoms or conditions other than sleepiness, anxiety, mental alertness, depression reversing or disappearing after a while under APAP treatment.  It looks like you at least have a plan in the interim while you work thru the doc and insurance route.  You might even hatch a plan to dump a doc who will not support the clear interpretation of the sleep study.  Get any doctor to write you a prescription with the home study as the basis.

QAL
Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
Post Reply Post Reply


#4
(07-14-2017, 04:08 PM)HomerJ Wrote: Hats off for taking the initiative of trying to better your life while the various players are giving you the run around.

I had a similar experience initially, it took forever to get an RX from my doc. 

Gets my Libertarian nature riled up, but gotta choose the battles. I wonder if there is some sort of apnea rights political action group focused on allowing individual freedom and responsibilty?
Post Reply Post Reply
#5
In response to:
(07-14-2017, 03:50 PM)Lee the Bee Wrote: What I'm Doing Now
The machine is a ResMed S8 Autoset II. It has the Hi4 and a f&P Zest Nasal Mask.


H4i has a blinking light on it to indicate power being cycled to the humidifier.  Higher setting, the light blinks either longer or more frequently.
The S8 series requires a special data card and a card reader.  I believe you can only interface it with ResScan as it has the driver for the reader.  ( I could be wrong -- never tried Sleepyhead with my S8)
You may need an earlier version of ResScan -- they may have dropped the S8 from recent releases as it is 2 generations old.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#6
(07-14-2017, 04:25 PM)justMongo Wrote: H4i has a blinking light on it to indicate power being cycled to the humidifier.  Higher setting, the light blinks either longer or more frequently.
The S8 series requires a special data card and a card reader.  I believe you can only interface it with ResScan as it has the driver for the reader.  ( I could be wrong -- never tried Sleepyhead with my S8)
You may need an earlier version of ResScan -- they may have dropped the S8 from recent releases as it is 2 generations old.

Hmmm.  Meant for another post?
Post Reply Post Reply


#7
(07-14-2017, 04:30 PM)HomerJ Wrote: Hmmm.  Meant for another post?

Nope
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply
#8
Apologies, I initially failed to see which machine the OP has in his post.
Post Reply Post Reply
#9
Put up the numbers you are getting from the S8, the forum will be able to help you adjust these. The AHI and 95% pressure, median and max, or whatever it's showing will help a lot.
new user http://www.apneaboard.com/wiki/index.php...re_success
mask fit http://www.apneaboard.com/wiki/index.php...ask_Primer
From machine or sleepyhead, set the min CPAP 1cm below median pressure. Or 2cm below 90/95%. max at 20cm for now. Forum will help you fine tune settings
Post Reply Post Reply


#10
FYI, Amazon has been a great resource for the uninsured recently with new Philips Dreamstation Auto CPAPs for abut $360 and Resmed Airsense 10 Autosets at about $100 higher. Both have very good data and differentiate between central and obstructive events. Considering the obscene markup on CPAP equipment by durable medical equipment suppiiers (DME) as well as on supplies, you can probably save money, or at least not spend much more, by not involving Medicare and its deductibles and copay. If you're feeling better since starting on the S8, you are probably getting closer to meeting your needs. The fact you are sleeping through the night is a very good sign.

I recommend you forego using sleep specialists and recruit your primary care doctor for prescriptions and other needs.
Post Reply Post Reply


Possibly Related Threads...
Thread Author Replies Views Last Post
  Cleaning Climate-control tube on ResMed Air Sense 10 GL Bishop 28 17,188 11 hours ago
Last Post: Walla Walla
  1 year and still tired! Scott C. 311 9,062 Yesterday, 02:11 PM
Last Post: Scott C.
  Trying to gt ahi and leak rate under control sirto 14 476 08-20-2017, 08:28 AM
Last Post: Sleeprider
Video [Pressure] Pressure seems too high, out of control gailtilt 8 326 08-14-2017, 09:30 PM
Last Post: bluemom51
  [CPAP] 15 days, tolerate mask okay, but so tired Tess 25 869 07-31-2017, 09:02 PM
Last Post: oldfart59
  Auto or Manual Temp Humidity Control? nanbar 8 401 07-20-2017, 07:34 PM
Last Post: foss
  Sooo tired Phatkid77 5 238 07-12-2017, 07:29 PM
Last Post: Phatkid77

Forum Jump:

New Posts   Today's Posts




About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.

For any more information, please use our contact form.