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Need help with test results
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musicfreak Offline

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Post: #1
Need help with test results
Hi guys,

I've been sick for 31 years and finally I've been diagnosed with UARS. Can anyone tell me in my results if there's anything that shows increased breathing? I don't know how to interpret the results.

What does Flow lim. Br. without Sn (FL) mean?

When you look at my pulse print out can you see anywhere where my heart rate went up? The peak at 7am is because I woke up for a bit and went to the washroom. I would say at 3, 6, 8, 9am it looks a bit high which maybe shows increased breathing?

I used an Apnealink Plus Sleep Apnea level 3 test. Where I am in Vancouver BC they don't test for UARS at the sleep lab.

I 'm sending away my application tomorrow for coverage which I know is extremely hard to get. I don't have time to see my doctor first to get feedback from him about the results as I have a deadline so I was wondering if you could tell me anything. I will be making an appt. to see him

sleeptestresults.wordpress.com/

Thanks for any insight you can offer.

P.S. I'm not sure if the link is allowed or not since it's not a clickable link and not a commercial one? I just quickly uploaded my results to a wordpress blog that has nothing else on it. When I tried to upload images here from the blog they were HUGE and when I tried to upload from the New Attachment section it says I met my quota so I wasn't sure what to do. If it's unacceptable just delete my post. Thanks.
10-09-2015 02:44 AM
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kaiasgram Offline

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Post: #2
RE: Need help with test results
Hi and welcome. I saw your report on the other forum.

You asked
Quote:What does Flow lim. Br. without Sn (FL) mean?

Flow limited breathing without snores - flow limited breathing means there's partial airway restriction. It can occur with and without snores. My guess is the periodic increases in your heart rate were either struggling with that flow limited breathing, or perhaps some 'lively' dreaming going on.

All that flow limited breathing suggests the possibility of UARS but for a definitive diagnosis I thought you'd also need documentation of RERAs (respiratory effort related arousals) and your report does not have any RERA information (likely wasn't part of your test). Who diagnosed you with UARS? Will you be able to get a machine based on this test?
(This post was last modified: 10-09-2015 03:44 AM by kaiasgram.)
10-09-2015 03:42 AM
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trish6hundred Offline

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Post: #3
RE: Need help with test results
Hi musicfreak,
WELCOME! to the forum.!
Hang in there for more responses to your post and hopefully you can get your problems straightened out.

trish6hundred
10-09-2015 08:53 AM
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musicfreak Offline

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Post: #4
RE: Need help with test results
(10-09-2015 03:42 AM)kaiasgram Wrote:  Hi and welcome. I saw your report on the other forum.

You asked
Quote:What does Flow lim. Br. without Sn (FL) mean?

Flow limited breathing without snores - flow limited breathing means there's partial airway restriction. It can occur with and without snores. My guess is the periodic increases in your heart rate were either struggling with that flow limited breathing, or perhaps some 'lively' dreaming going on.

All that flow limited breathing suggests the possibility of UARS but for a definitive diagnosis I thought you'd also need documentation of RERAs (respiratory effort related arousals) and your report does not have any RERA information (likely wasn't part of your test). Who diagnosed you with UARS? Will you be able to get a machine based on this test?

Thank you so much for your response. I feel this is showing I have UARS. I really think it's showing the flow limited breathing. It's not caused by 'livelyl dreaming because I almost never dream! I think that's because I'm not able to get into a deep sleep because of UARS.

My respiratory therapist diagnosed me. I asked him to refer me to the sleep lab but he said they don't test for UARS (RERA's).

I'm on disability and can't afford a machine so I have to go through Social Services. I first have to get approved for a trial and then later hopefully they will buy the machine but I know it will be an uphill battle. I got approved for a trial in 2010. I got turned down the first time because my AHI was low but then they gave it to me after I appealed it by explaining more about UARS. But then when it came to buying the machine they turned me down again because of my low AHI. I never felt better on the machine so I thought it wasn't helping. I continued to try and fix my problems but this year after still not getting better I decided to look into it again because I read how people have a hard time adjusting to the mask which is what happened to me last time. When I made an appt to see my respiratory therapist again he said my last test with CPAP was worse than room air which meant I was struggling with the mask/machine. So now he's given me a different prescription (Auto pap with C-flex and a chinstrap). I also think that if I adjust better to the machine/mask I'm not going to feel better in a week or two like people who have sleep apnea. I've had 31 years of damage to my body and I think I'll need to be on CPAP at least a few months or maybe up to a year before I will feel better. It will take time for my body to recover. I'm just going by what it's done to my muscles alone. There's no way they would be normal again in a week or two. I have lots of knots in my neck but the sides of my arms and areas of my thighs are so hard and tender because the muscles have tightened up so much.

I'm hoping I will get approved for a trial again and this time I hope I will be given a Respironics machine as I've seen they tell you how many RERA's you have? I hope this will help in my case.

I have so many health issues related to UARS and it's been EXHAUSTING trying to explain what the syndrome is and how it's different from Sleep Apnea.

I have also replied to that other post I made.

(10-09-2015 08:53 AM)trish6hundred Wrote:  Hi musicfreak,
WELCOME! to the forum.!
Hang in there for more responses to your post and hopefully you can get your problems straightened out.

Thank you so much Trish. Kaiasgram helped me out a lot.

It is nice to talk to others that understand UARS!
(This post was last modified: 10-09-2015 01:23 PM by musicfreak.)
10-09-2015 01:20 PM
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kaiasgram Offline

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Post: #5
RE: Need help with test results
The ResMed Airsense 10 Autoset For Her does have RERA reporting.

I've also read that bilevel machines (BiPAP in the Respironics line and VPAP in the ResMed line) are often a good choice for treating UARS because they allow for higher pressures often needed with UARS but afford greater exhale relief than CPAP and APAP machines. You're probably already familiar with the work of Barrow Krakow M.D. but if not, check out some of articles on the subject (google his name and UARS).

I hope you can make more headway this time, sounds like you've been going through a lot. You're certainly doing a good job of advocating for yourself. Keep us posted.
(This post was last modified: 10-09-2015 02:10 PM by kaiasgram.)
10-09-2015 02:09 PM
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zonk Offline

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Post: #6
RE: Need help with test results
My A10 Autset does not report RERAs but been informed by other members that their A10 autoset report RERAs. Resmed seem change it in later models, my machine missed out as being one of the earlier models and bought from overseas privately

RDI (Respiratory Disturbance Index) = AHI (Apnea Hypopnea Index) + RERAs

According to the Centers for Medicare & Medicaid Services criteria for the positive diagnosis and treatment of obstructive sleep apnea,[32] a positive test for OSA is established if either of the following criteria using the AHI or the RDI is met:

AHI or RDI greater than or equal to 15 events per hour, or
AHI or RDI greater than or equal to 5 and less than or equal to 14 events per hour with documented symptoms of excessive daytime sleepiness (EDS); impaired cognition; mood disorders; insomnia; or documented hypertension, ischemic heart disease, or history of stroke

Read more http://emedicine.medscape.com/article/295807-differential

Flow Limitation/UARS and BiPAP - Barry Krakow MD
http://www.apneaboard.com/forums/Thread-...-and-BiPAP
10-09-2015 02:45 PM
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musicfreak Offline

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Post: #7
RE: Need help with test results
(10-09-2015 02:09 PM)kaiasgram Wrote:  The ResMed Airsense 10 Autoset For Her does have RERA reporting.

I've also read that bilevel machines (BiPAP in the Respironics line and VPAP in the ResMed line) are often a good choice for treating UARS because they allow for higher pressures often needed with UARS but afford greater exhale relief than CPAP and APAP machines. You're probably already familiar with the work of Barrow Krakow M.D. but if not, check out some of articles on the subject (google his name and UARS).

I hope you can make more headway this time, sounds like you've been going through a lot. You're certainly doing a good job of advocating for yourself. Keep us posted.

I have read that Krakow says the bilevel machines are better for UARS. I tried to understand the difference in the machines but I found it confusing especially when there's a flex, c flex etc. I wanted to do a trial with a bilevel machine but then my doctor prescribed autopap so I thought it would adjust to the different pressure I may need breathing in and out? If not and I wasn't doing well on autopap I was going to request a bilevel machine. (I didn't know Bipap and Vpap would the same techology but different manufacturers. Gets confusing! I believe C flex is only by Respironics?) I need to review a site I was looking at before that explains the differences between machines. I also need to read more about Krakow and UARS.

Anyways, when I did a trial before I did regular CPAP and it was awful. I felt like I was choking. Then I was switched to Resmed EPR which made it easier when I breathed out. My pressure wasn't anymore than 7 so I maybe needed to go higher.

I hope I make more headway this time also. I have given them tons of info on UARS and how it's affected my heart and the differences between it and Sleep Apnea. I have to be a good advocate for myself because if I don't I will stay sick! My quality of life is really poor!

If I get turned down well at least I've educated them and they are aware of the syndrome and maybe it will make it easier down the road for someone else needing a trial.

Thanks for your help.
10-09-2015 09:55 PM
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musicfreak Offline

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Post: #8
RE: Need help with test results
@Zonk Thanks for the heads up regarding the RERA reporting on machines. Good to know.

I have read the criteria for OSA for 15 and above but not the second one you list. Of course I don't fit the criteria. There is a great misunderstanding and lack of education on UARS. It has done a lot of damage to my body and I'm extremely fatigued and in lots of pain. I also have systemic infections because my immune system is suppressed. I have hypothyroidism, adrenal exhaustion and I'm also experiencing cardiovascular issues. I've found papers/studies that show the increased breathing causes hypertension. My heart feels strained, achy, inflamed (can feel the heat) and I can feel the odd small sharp pain. EKG is normal. I think my heart is stressed by UARS.

It is much easier to buy a machine myself than fight the system but being on disability I can't afford it. If I get turned down which is highly probably I will have to some how make some extra money from home and save for one. I really need one because my quality of life is very poor!

I have read the link on flow limitation and bipap before by Dr. Krakow. I will read it again.

Thanks for your help.

Have a good weekend everyone. I'll check Tues. to see if there are any more replies.

Cheryl
10-09-2015 10:15 PM
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