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Introduction- and Journey
#1
Introduction- and Journey
Hello to all the members of this very informational site that I have just begun to explore.  I am so glad I found y'all.

I just got diagnosed with OSA this week, but the surprise was clinically significant PLMD with it.  But that is not the start of my sleep disorder journey, it is long and has been interesting.

Without revealing my exact age, I will say I played a lot of the original Oregon Trail in elementary school.  Since I was very young, about 5 or 6 I had a history of sleepwalking.  My Mother (who also has OSA) and my Father (probably has it but is stubborn and won't go get a test Dont-know ) were witnesses to my many sleepwalks, outside on the swings, on the railing of the deck thinking it was a balance beam etc.  I also have sleep talked (sometimes singing) pretty much my entire life.  The sleepwalking has gotten better, but I have also punched and hurt bed partners in my adult life. 

After I had just graduated college, I punched my partner at the time in my sleep (I remember nothing about it) and my partner requiring some stitches from a busted lip caused me to seek help from a sleep specialist for the first time.  Sleep logs, yada yada, and a sleep test that said "Yup you snore" but nothing real significant about it, and wasn't diagnosed because "your O2 sats never dropped below 90%". I was young, and I let it go.  Around the same time, my tonsils finally decided it was time to be infected more than not so they got taken care of quickly, and according to my families and partners my snoring lessened.

A few years later, I had a brush with a bad staph infection from a cut on my leg (hospitalized), and the docs think it or the antibiotics used to treat it damaged the electrical system in my heart.  Luckily a pacemaker/med combo corrects that and life with sparky is generally good.  Since I was hospitalized a few days before my pacemaker surgery, the staff did what they called "poor man's" sleep study (basically monitor ECG and O2 sats) because they noticed my snoring and like usual they thought I was good because "Your O2 levels never drop below 90%".

Fast forward to 2019. My sister who I live with says that my snoring has gotten terribly loud.  She says that I am comparable to my Dad in snoring volume and I seem to be having lots of talking/shouting episodes.  I'm feeling generally exhausted all the time.  I decide enough is enough and I talk to my PCP in November 2019 about it.  I told him my last true sleep study was right after I graduated from my bachelors.  He orders a home sleep test (which I did and showed Mild OSA), and has no problem referring me back to a sleep specialist, one not in his medical group because their wait is currently 6+ months.  

I was able to get an appointment in early December 2019, I hit the cancellation jackpot with having my Diagnostic Study just before NYE (I met my deductible last year).  Had the followup earlier this week, where doc diagnosed Mild OSA (8.3 AHI) which are all hypos- none truly obstructive (if I'm reading my report correctly), but the PLM index was 27.9, and my overall arousal index was 18.6/hr.  They also caught 3 episodes of sleep talking- apparently I was talking about sirens that night.  

I then hit the cancellation jackpot again and had my titration study this past Thursday night (the day after my follow up appointment).  It was liberating.  Aside from a freakout about 2am where I think I just didn't know where I was, I woke up energized for the first time in probably 10+ years.  I had so much energy on Friday I didn't know what to do with myself. 

Now, I am in the hurry up and wait again, while they prepare the report and the prescription, which they say I should have late next week.  I am traveling to Orlando in the middle of February, and I would like to be on treatment by then since I am sharing a room with a co-worker, I don't want to keep them up all night with my really noisy snoring.  I also don't want it to be my first week of treatment if I can help it. So far my insurance hasn't given me any beef, and with the second study I'm pretty sure I have met at least the part of my deductible where I have to pay everything. I'm probably in the portion where I have to pay 10% of the next $5000 of charges before I hit my out of pocket max for the year.   I checked my policy this morning and it looks like to me that applies to DME as well.  

Anyway, I am looking forward to this journey, I have always been my own best advocate for my medical conditions and I am very tech/data oriented so I will be looking to get the best therapy possible.
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#2
RE: Introduction- and Journey
Welcome to the forum.
There are lots of people here who know quite a bit about PLM mixed with Obstructive apnea so you are in the right place.
These are some of the most knowledgeable and helpful people I've ever bumped into.
Being tech and data oriented will make this fascinating for you as you start to analyze your own data in OSCAR.
Good luck with the journey. :-)
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#3
RE: Introduction- and Journey
So I forgot to ask some questions... Mostly because I thought it got too long.  

I have also attached my Initial report so hopefully I am interpreting it correctly.

I have tried digging through the forums, but that can be a massive task. But here are some of the questions I have at the moment.

1.  I was okay with the ResMed P10 (medium) I wore all night for the titration, but my nostrils were pretty sore.  My Mom says that's normal, but I'm curious how often do you try new masks? Or do you just not mess with what works?

2.  How durable are the machines when traveling?  I am heading to Orlando in February as I mentioned above, and I have a Europe trip planned this summer.  I also frequently spend 1-2 nights all over the state or at my parents house.  I am not a homebody.  

3.  Which machine is probably going to be the best for me? I see you guys recommend the ResMed Auto AirSense 10.  I am VERY good at getting what I ultimately need and want, I just want to get it right the first time. 

Thats all I can think for now.  Hopefully my report attaches correctly so y'all can read it, and give me some advice going forward.    
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#4
RE: Introduction- and Journey
Welcome to the forum. You will find plenty of help here. If you’re like many of us you will find more help here than from your medical professionals and equipment supplier. Be sure to get complete copies of your sleep study reports (not just summaries) and your prescription. Don’t let the supplier give you anything less than a data capable auto adjusting pressure machine. The Resmed Airsense 10 Autoset is the most commonly recommended machine here. The dreamstation is a close second but most seem to get better results with the Resmed. Be sure to get an SD card for your machine and download free OSCAR software from here  https://www.sleepfiles.com/OSCAR/    It’s difficult to advise on therapy without data and OSCAR is the best way to provide it in the forum. We look forward to seeing more from you and wish you the best as you start this journey. Be prepared for frustrations. That’s where we can help because we have gone the same road.
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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.

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#5
RE: Introduction- and Journey
Welcome to the forum.

Your next step is to get a machine. This is important.

I suggest a ResMed AirSense 10 AutoSet or an AutoSet for Her, the keyword is Autoset. Of the two both are more than acceptable, and the for Her variant is slightly better.
I suggest calling the DME and ask them when you can get your AutoSet. If it isn't an AutoSet, either one, walk. The exception is if a higher level machine.

Why? ResMed AutoSet Treats Hypopnea, flow limitations, RERAs, Snores, and UARS better than the competition because of its implementation of EPR. Only a BiLevel will match and exceed the AutoSet.
Gideon - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter

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#6
RE: Introduction- and Journey
Thanks for the welcome! I do have my entire report from the initial study in December, I just attached the front snapshot, but I have four more pages if useful/needed.

I have already requested I get a hard copy prescription, I want it for my records if nothing else.

I’m just trying to figure out the new alphabet soup, and I have already downloaded Oscar, in preparation to customize my therapy.
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#7
RE: Introduction- and Journey
Hi melodyknit0375,

Welcome to the Apnea Board. Bonjour is one of the best on pressure settings. When you get the script and sleep study detailed copies, you can post redacted versions here. You're going to want to hold onto those as they'll be valuable to keep as part of your medical records. You'll want OSCAR for viewing data and you'll post it as well. Try for the ResMed AutoSet. Best to your success.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: Introduction- and Journey
Hi melody,
Welcome to Apnea Board!
You received a lot of good advice so far, so I'll just comment on the Nasal Pillow Mask.

Many of us that use nasal pillows have found that using one size larger pillow than what the DME sizes you for will work best.  The pillow should not be inserted into the nostrils, but just sort of float outside of the nostril, with just the tips inserted.  This makes for a much better fit and you will experience less irritation.

Be sure the DME gives you a mask with all three pillows so you can experiment yourself as to the best fit.

Also, some use a Nasal Gel or a Lanolin Cream, which keeps dryness and irritation away.

Good Luck!
OpalRose
Apnea Board Administrator
www.ApneaBoard.com

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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.
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#9
RE: Introduction- and Journey
Welcome! You’ve already gotten good answers to most of your questions. About traveling: you should plan on taking you gear with you on an airplane, rather than checking it. You’ll get a travel bag with your machine, and everything will fit into it. The airlines will not charge you for an extra carry-on bag because the machine counts as medical equipment.

(Now that I travel with my Res Med bag, I see them all over the place. Lots of little nods, smiles, and winks as people recognize fellow apniacs.)

You might want to take an extension cord with you, just in case there isn’t an outlet where you want one. Don’t worry about using tap water in your humidifier; just dump the water out in the a.m. and wipe the inside of the humidifier dry.

You can get a mini travel machine, but from what i hear they tend to be noisy. Other people may be able to provide first-hand experience.

I hope you get your machine soon. Keep us posted, would you?
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#10
RE: Introduction- and Journey
I will keep everyone posted. I’m hoping that with a prescription in hand late next week I can call up a couple of DME’s and see who is willing to wheel and deal. I am willing to go to an online provider if I have to, but we do have a couple that are in network for my insurance that have mostly positive yelp/google/bbb profiles.

Would it be in my best interest to contact a few of them this week to just get a feel for them?
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