Newbie and all the anxiety

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mamajess

Newbie and all the anxiety

Post by mamajess » Wed Jun 21, 2017 10:34 am

hey friends! newbie here

I had a sleep study a few weeks ago and just got the full report from my doctor and it's not good. I've read several posts on the forum and I'm hoping someone can help make sense of all of this information.

Some background: I had two home studies (the first stopped recording after two hours so I had to do a second) I'm 36, a little chunky/overweight, and in good health. I've spent the last several years being shuffled from GI to other doctors because my old primary care doc felt I had digestive issues due to the waking up and choking. I've probably had 5 or 6 GI scopes (upper/lowers) and a battery of tests for celiac, food allergies etc. The doctors would think it was xyz issue, try that treatment and no improvement. I’ve found myself slipping into isolating myself from friends & family (turning into a total curmudgeon), severe brain fog, intense headaches and not to mention each night I’d terrify my husband because I’d stop breathing, wake up choking & gasping for air in my sleep. I never felt rested even though I could fall asleep anywhere with no problem, narrowly avoided being in some serious car accidents because I was in such a fog. I couldn’t remember anything, started sliding into a deeper depression, gaining weight, I was angry all the time and felt like I was losing my mind.

I had two home studies (the first stopped recording after two hours so I had to do a second) The second sleep study I ended up sleeping about a total of four hours over the night that was broken up because I was so uncomfortable and kept waking up.

Apnea Index: 42
Supine Apnea Index: 42
Non-supine Index: 45
209 obstructive apneas
154 hypopneas (shallow breathing incidents)
48 minutes of oxygen dipping below 88% saturation (the doctor told me the average is about 5 minutes a night and that I need to be on oxygen at night)

I'm currently waiting on Apria to get insurance approval and the machine set up for me. I follow up with my doctor in late August to review the CPAP data and then at that time I'll get scheduled for a CPAP titration overnight sleep study.

I'm pretty scared of the results and starting on a CPAP and possibly oxygen. If you can provide any insight or advice, I'd certainly appreciate it!

Have a great day!
-Jess

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Okie bipap
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Re: Newbie and all the anxiety

Post by Okie bipap » Wed Jun 21, 2017 10:56 am

Welcome to the forum. We were all apprehensive when first diagnosed with sleep apnea. It usually takes some time to get used to the idea of sleeping with something on your face, and the fact you will in all likelihood need to use it for the rest of your life. Register and stick around the forum. You will find many helpful people here. As with any open forum, you will also see a lot of bickering and nastiness here. If you can overlook these, you can find a lot of helpful information here. Recommend you start reading the links at the top of the page. One thing you want to make sure of is to get a machine with full data capability. Do not accept the "CPAP" model of either the Phillips or ResMed line of machines. In the ResMed machines, never accept any machine that has "Air Start" in the name. These machines are what we refer to as "bricks" and do not have full data capability.

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Re: Newbie and all the anxiety

Post by Julie » Wed Jun 21, 2017 11:01 am

Hi, what a runaround, though typical of some other stories when GPs are uneducated and refuse to do their homework.

One thing I can tell you is that your GI problems were very likely from acid reflux (GERD) which many of us have... and that can wake you often, even when you're not aware of it, overnight. So once you get your machine set up, you may find it's better (the reflux), but even if not, you can then address it properly in various ways. Just one of those things!

Second, don't be frightened by your numbers... you're certainly not alone, but... couple of tips - try to not sleep on your back if at all possible (foam wedge or stuffed backpack in behind to keep from flipping overnight) because it provokes more apneas, though of course you'll be on Cpap, which will help a lot. And second, you WILL be on Cpap (or Apap) and probably be astounded at how fast those numbers fall to single digits. There will likely be an adjust period (diff. for everyone, days, wks, poss. mos) but it'll be about mask choice, etc., not #'s. And I highly doubt you'll need oxygen!

Important to know is that the 'severity' of your diagnosis is NOT related to the pressure settings you'll have on your machine... one person with only 'mild' apnea may need high settings because their anatomy gives them a narrow airway (that Cpap air helps to widen of course), and someone like you with higher #'s on diagnosis may need only relatively low settings if their particular airway is wide enough.

Come back to this thread when you want more info or to share anything so we can keep track of your story in one place if possible. And ask the previous poster said, demand an Apap... they CAN do Cpap if necessary at some point, but plain Cpaps won't do Apap, which is always more desirable for many reasons.

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jnk...
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Re: Newbie and all the anxiety

Post by jnk... » Wed Jun 21, 2017 11:19 am

mamajess wrote: . . . each night I’d terrify my husband because I’d stop breathing, wake up choking & gasping for air in my sleep. . . .
It is good for a husband to be terrified once in a while--it proves he loves his wife--but I'm VERY sorry you've both been going through that.

Just to explain some of the mechanics of what Julie mentioned, in order to connect the dots between one possibility for the GI troubles with the OSA connection . . .

What many of us experienced before successful PAP treatment was that when our diaphragm would lower to pull in air as we slept, an upper airway blockage from OSA would cause the pressure (technically negative pressure) of trying to breathe in to pull the air and accompanying stomach juices out of our stomach and up our esophagus into our airway. When that happens repeatedly or in a sustained way, that pressure of trying to breathe in will actually "pump" those stomach juices all the way high up into our throat, mouth, and sinus cavities. That can result in a very bad panicked choking fit with stinging and sourness that burns the throat and other areas of our airway very badly. If a person's ability to quickly regain consciousness also happens to be a bit compromised from alcohol, diphenhydramine, or other, more sinister, drugs, that stomach fluid can make it all the way into the lungs and do some serious, occasionally life-threatening damage. (This has been the untimely fate of many a rock drummer over the years.) I don't say that to give someone more anxiety on top of the already-existing anxiety, but to say that there are sometimes very good reasons for the anxiety we experience and that we can sometimes channel that into positive action. Like what?

Like maybe asking to fill in for cancellations for upcoming titration studies so that you can get on PAP sooner rather than later. Like maybe not eating three-to-four hours before going to bed, so that there is as little as possible in your stomach to get pumped up into your throat and beyond. Like maybe sleeping with the head of your bed at a slight incline so that gravity can help hold any stomach juices down out of your esophagus. Soon, once you are on PAP therapy and successfully using it, then there will be no blockages to cause the GERD and perhaps less reason to worry about meal timing or bed incline. But until then, those are measures to consider, in my opinion as a fellow patient with no medical training.

You should be proud of yourself for getting something done about all this. Many of us have experienced similar things in our past (the anxiety, the choking, the sleep difficulties) that PAP therapy has now completely solved for us. Let this forum be of assistance to you in making your PAP experience as comfortable and successful as possible.

Glad you found this place.

Welcome.
Last edited by jnk... on Wed Jun 21, 2017 11:31 am, edited 2 times in total.
-Jeff (AS10/P30i)

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Re: Newbie and all the anxiety

Post by Guest » Wed Jun 21, 2017 11:29 am

Your description of your symptoms almost perfectly describes my experience before CPAP. It took me longer than most to adapt to CPAP, but once I did, I experienced a dramatic improvement. After religiously using CPAP for 6 years, I feel like I have my life back. Working the system to get the treatment you need is frustrating and painful, but people on this forum will be there to help and to encourage you on that journey.

Nick Danger

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Julie
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Re: Newbie and all the anxiety

Post by Julie » Wed Jun 21, 2017 11:33 am

Good pts JNK, but I disagree with one thing - not eating for so long before bed... that actually gets your stomach producing more acid, so I suggest not eating a lot at that time (yes), but a little protein snack e.g. half an hour prior to bed can help... gives the acid something to deal with and not be free floating up to your esophagus. Of course what lets it in there is your LS sphincter which often weakens with age or extra weight, and a SLOW loss of even a very little weight can work wonders. I say 'slow' because it's more likely to stick and not rebound.

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jnk...
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Re: Newbie and all the anxiety

Post by jnk... » Wed Jun 21, 2017 11:43 am

Julie wrote:Good pts JNK, but I disagree with one thing - not eating for so long before bed... that actually gets your stomach producing more acid, so I suggest not eating a lot at that time (yes), but a little protein snack e.g. half an hour prior to bed can help... gives the acid something to deal with and not be free floating up to your esophagus. Of course what lets it in there is your LS sphincter which often weakens with age or extra weight, and a SLOW loss of even a very little weight can work wonders. I say 'slow' because it's more likely to stick and not rebound.
Thanks Julie.

We're all different. But my expressions were based mostly on recommendations from the written and spoken experiences of Dr. Park, an ENT doc in NYC who specializes in OSA treatment. His belief, as I understand it, is that the amount of acid present in the stomach is mostly irrelevant for most OSA patients, since whatever the acidity of the stomach juices, damage and danger are basically equal when it is brought up out of the stomach to where it doesn't belong. In fact I believe he usually refuses to consider it classic "acid-reflux" in the context of sleep-breathing difficulties, if I remember correctly with his technical terminology--which, I admit, can be slightly different from mainstream:
Dr. Park wrote:. . . Not eating anything within 3-4 hours of bedtime is the single most important advice I give to all my patients, whether they come in for any ear, nose or throat problems (since I’m an ENT physician, or otolaryngologist). Since I also see mostly patients with obstructive sleep apnea, this advice is even more important, since apneas can literally suction up your normal stomach juices into your throat, . . . -- http://doctorstevenpark.com/what-are-th ... more-10131
Color added by me.

For those who like studies:
some scientific dudes doing a cool study of 147 GERD dudes and 294 controls wrote:. . . shorter dinner-to-bed time was significantly associated with an increased OR [odds ratio] of GERD (p < 0.0001) and the OR for patients whose dinner-to-bed time was less than 3 h was 7.45 (95% CI 3.38-16.4) compared with patients whose dinner-to-bed time was 4 h or more. These observations were consistent in both patients with non-erosive GERD and erosive esophagitis . . . -- https://www.ncbi.nlm.nih.gov/pubmed/16393212
Also, a little more from Dr. Park . . .

http://doctorstevenpark.com/how-reflux- ... leep-apnea

As for the sphincter (LES), I believe personally that it can often heal up quite well and function normally for many once it is allowed to recover from the reflux after the OSA has been sufficiently addressed--depending, of course, on the extent of the damage done over the years.


That said, the variety of experiences on these matters is part of what makes this forum so valuable. So I very much appreciate your perspective and experiences.
-Jeff (AS10/P30i)

Accounts to put on the foe list: Me. I often post misleading, timewasting stuff.

mamajess

Re: Newbie and all the anxiety

Post by mamajess » Wed Jun 21, 2017 3:42 pm

Thank you all so much for the replies and support!

I just got a call from Apria and I'll be able to pick up my CPAP on Friday!! They are setting me up on the AirSense 10 so it looks like I have some research to do before then!

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Re: Newbie and all the anxiety

Post by Julie » Wed Jun 21, 2017 3:52 pm

But is it an Auto? Ask them to write down the FULL model name/# for you as it'll make our life a lot easier to help you going in (but don't tell them that part ).

mamajess

Re: Newbie and all the anxiety

Post by mamajess » Wed Jun 21, 2017 4:14 pm

Julie wrote:But is it an Auto? Ask them to write down the FULL model name/# for you as it'll make our life a lot easier to help you going in (but don't tell them that part ).
I just called to confirm and it is the Airsense 10 Autoset. Looks like it has all the features on their website. Hopefully it works well for me!

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Re: Newbie and all the anxiety

Post by kteague » Wed Jun 21, 2017 5:14 pm

mamajess wrote: ...48 minutes of oxygen dipping below 88% saturation (the doctor told me the average is about 5 minutes a night and that I need to be on oxygen at night)...
Hello and welcome. Do you have any lung issues? If not, and if the apneas are the cause of your low oxygen, it's likely to become a moot point with effective treatment. If effective treatment does not resolve the low oxygen, then you'll want other testing done.

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Re: Newbie and all the anxiety

Post by zoocrewphoto » Wed Jun 21, 2017 6:02 pm

jnk... wrote: What many of us experienced before successful PAP treatment was that when our diaphragm would lower to pull in air as we slept, an upper airway blockage from OSA would cause the pressure (technically negative pressure) of trying to breathe in to pull the air and accompanying stomach juices out of our stomach and up our esophagus into our airway. When that happens repeatedly or in a sustained way, that pressure of trying to breathe in will actually "pump" those stomach juices all the way high up into our throat, mouth, and sinus cavities. That can result in a very bad panicked choking fit with stinging and sourness that burns the throat and other areas of our airway very badly. If a person's ability to quickly regain consciousness also happens to be a bit compromised from alcohol, diphenhydramine, or other, more sinister, drugs, that stomach fluid can make it all the way into the lungs and do some serious, occasionally life-threatening damage. (This has been the untimely fate of many a rock drummer over the years.) I don't say that to give someone more anxiety on top of the already-existing anxiety, but to say that there are sometimes very good reasons for the anxiety we experience and that we can sometimes channel that into positive action. Like what?

Great explanation. I had those choking/gasping fits a LOT before cpap. I had no idea that it was the sleep apnea causing it until after I started cpap and it stopped happening. Once, I inhaled the acid reflux and went to the ER. No long term damage, but burned like hell. I learned to jump out of bed quickly to get upright, and I kept a bottle of water near the bed. I was so glad when cpap fixed that problem.

As for the eating or not eating close to bed time, I like to eat a few almonds before bed. Before cpap, they seemed to help reduce the acid. Since they helped before, I continued eating them as they don't seem to make things worse. On rare occasions, I do wake up with a bit of acid reflux. I can grab a few almonds and go back to sleep.

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Who would have thought it would be this challenging to sleep and breathe at the same time?

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Re: Newbie and all the anxiety

Post by jim22 » Wed Jun 21, 2017 7:55 pm

Count me in on the reflux issue too. I took prilosec every day for years before I was diagnosed. I would travel on business trips and eat large fancy meals in the evening and be just miserable trying to sleep. Once on CPAP, the reflux basically stoped and I was able to wean myself off the acid blockers. For me, that's been the best part of being treated.
Jim

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Re: Newbie and all the anxiety

Post by zoocrewphoto » Wed Jun 21, 2017 8:11 pm

jim22 wrote:Count me in on the reflux issue too. I took prilosec every day for years before I was diagnosed. I would travel on business trips and eat large fancy meals in the evening and be just miserable trying to sleep. Once on CPAP, the reflux basically stoped and I was able to wean myself off the acid blockers. For me, that's been the best part of being treated.
Jim

I still have to use them some as there foods that I like that don't seem to like me. But I can get by with a lot less now. And even when I have a bit of acid reflux, it isn't nearly as bad. Huge improvement with cpap.

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Re: Newbie and all the anxiety

Post by reolhlains » Wed Jun 21, 2017 11:12 pm

mamajess wrote:I just got a call from Apria and I'll be able to pick up my CPAP on Friday!!
Good luck!! May Friday night be the turning point in all of this (albeit it may take some time to get used to it/get the correct set-up etc.).
Looking forward to hearing how you get on and how you feel over the weekend - but sending good-luck karma your way!!

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