I don't know what's wrong with me and neither do the doctors

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Doublev
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Re: I don't know what's wrong with me and neither do the doctors

Post by Doublev » Wed Jul 19, 2017 7:42 pm

You have the machine now.. so use it and see what happens.

It is hard for doctors to solve this type of a problem. You are seeing a doctor that specializes in one thing or quite frankly cannot spend the hours, days, months, years troubleshooting for you..

I was just there where you are recently. "What is wrong with me"

I went to a cardiologist. I told him I am tired as a dog all day and if I walk up stairs my heart is racing. They do a stress echo.. At the end he says "your heart is fine, man, go get some exercise.. your heart is just out of shape". But I couldnt exercise.. too tired. No help.

I had GERD. I go to a gastroenterologist. They put a scope to see if i have ulcers or what is going on. "nope, just keep taking these pills. you look OK in there. We can do surgery but the long term side effect is unknown and you are too young". But I have had this for YEARS? This cannot be good. "Come back in ten years and we will look again". I stopped taking the pills but that made it worse... So i switched brands multiple times to see if they were causing me sleep loss.

I changed my diet.. i tried everything.

Finally I woke up multiple nights in a row gasping for air and it hit me. I didnt care about waking up or the racing heart (I knew I had sleep apnea for years) but this must be causing my GERD and making me tired all day. And yes it was.. the thing is a lot of people knew I had sleep apnea (the wife certainly did) but people didnt put two and two together. The CPAP solved all of my problems.

I hope it solves your, but if not, keep looking and thinking, you will be the best person to solve this and when you do you will look back and think how obvious it was and why you and the doctors couldnt figure it out.

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Pugsy
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Re: I don't know what's wrong with me and neither do the doctors

Post by Pugsy » Wed Jul 19, 2017 8:29 pm

xxyzx wrote:i do not see how apnea causes gerd. gerd could cause arousals.
http://www.sleepeducation.org/news/2016 ... cid-reflux

http://www.badgut.org/information-centr ... ease-gerd/

http://curemysleepapnea.com/acid-reflux ... eep-apnea/

There's more if you look around. Some people have noticed that their GERD symptoms improved a lot with cpap therapy for sleep apnea.
Others not so much. I happen to be in the not so much group but then I also have a hiatal hernia which can make GERD issues worse even without sleep apnea.

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Gerald?
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Re: I don't know what's wrong with me and neither do the doctors

Post by Gerald? » Wed Jul 19, 2017 8:43 pm

I'm in the APAP cured my GERD group.

Not had one issue with GERD since APAP treatment. Pre-APAP I woke up with a mouth full of stomach acid every morning.

I love my machine

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zoocrewphoto
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Re: I don't know what's wrong with me and neither do the doctors

Post by zoocrewphoto » Wed Jul 19, 2017 8:53 pm

xxyzx wrote:i do not see how apnea causes gerd. gerd could cause arousals.

I used to wake up with choking fits. I would choke and gasp, then vomit. I blamed it on acid reflux. I also managed to inhale the acid a few times. Went to the ER the first time. Once I started cpap, those events stopped completely. I learned later than as my airway closes, it causes a vacuum and basically sucks the acid up my airway from my stomach. So, sleep apnea was the real cause of the acid events.

I do have occasional acid issues during the day, especially if I eat certain things. But no more issues at night, which is when it used to be the worst.

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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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Pugsy
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Re: I don't know what's wrong with me and neither do the doctors

Post by Pugsy » Thu Jul 20, 2017 7:29 am

xxyzx wrote:i had a hiatal hernia and gerd long before any apnea

it got fixed with a lot of prevacid
Prevacid offers me no relief. Dexilant (RX and really expensive) worked well but had some nasty side effects that made it impossible to want to justify the cost anyway.

Right now Nexium seems to work the best for me in my situation. It works well as long as a remember to take it but I don't always remember like I should.

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zoocrewphoto
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Re: I don't know what's wrong with me and neither do the doctors

Post by zoocrewphoto » Thu Jul 20, 2017 7:44 am

Pugsy wrote:
xxyzx wrote:i had a hiatal hernia and gerd long before any apnea

it got fixed with a lot of prevacid
Prevacid offers me no relief. Dexilant (RX and really expensive) worked well but had some nasty side effects that made it impossible to want to justify the cost anyway.

Right now Nexium seems to work the best for me in my situation. It works well as long as a remember to take it but I don't always remember like I should.

I take prilosec. My insurance has 4 medications it will provide for free, and this is one.

Works great if I remember it. I, too, tend to forget it. But since starting cpap, I really don't have many problems unless I eat something like bacon, pepperoni, or cinnamon. Before cpap, I needed 2 a day. Now, I take 1 a day, and often forget. I haven't had one in 2 or 3 days, but no issues.

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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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Beour
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Re: I don't know what's wrong with me and neither do the doctors

Post by Beour » Thu Jul 20, 2017 8:51 am

xxyzx wrote:have you ruled out external causes of arousals
they will leave you very tired

do you have any stressors or major problems
death in famiy, being audited to pay more taxes, about to be fired from job or had been fired, personal problems with your mate, ...
they can all leave you drained and tired
Like I said in my original post, I have suffered childhood and adult trauma and my partner thinks that I might be suffering from some kind of emotional burn out. I laid this all out to a sleep psychologist and she said the "maybe" it's the reason I have spontaneous arousals. I'm not lying awake at not because of anxiety and honestly, I wish I was and that that was the reason because it's a lot easier to address and fix.
kteague wrote:Do you have a copy of your sleep study where you showed an AHI of 5? What I would want to know is how much sleep you had, what positions, and what stages .
This is a copy of my sleep study: http://imgur.com/a/NIuX0 (I can provide a translation of Dr's notes if needed)
kteague wrote:Often tests are not fully reflective of a person's usual sleep and the data that could be gathered is reported as a diagnosis when it was really inadequate to be conclusive. They can only report a diagnosis for that night's data, not for the person's overall status. My sleep doctor terms these tests "technically suboptimal" meaning it may not show the whole story. Until these issues are known, there is the possibility that your OSA is more severe than you are aware.
I complained about this to my doctors because as you said, it's only a report of that night's data and not an overall status. There was nothing natural about how I slept that night. I doubt my insurer would cover a 2nd study and paying out of my own pocket would set me back 1400 euro
kteague wrote:Were your legs wired for the study and did your study make any mention of limb movements? They can be a cause of fractured sleep. Does your partner report your legs moving much at night?
My legs and arms were wired but the doctor made no comment on them.
kteague wrote:Have you already assessed any meds for potential to disrupt sleep?
I'm on no medication.
kteague wrote:I put a lot of stock in what the data gurus are able to see that has often missed the eye of medical providers. I do suggest you working with them to look for answers. Good luck going forward.
Thanks so much
zoocrewphoto wrote:I would definitely give the cpap a try.
I'm waiting to get a smaller attachment for my current mask. The only supplier I can find emailed me later that my order will take longer because the item was out of stock
robysue wrote:
Beour wrote:
robysue wrote:What do your sleep habits and patterns look like?
I go to bed the same time every night and try to get up at the same time. I say try because I often feel too exhausted to get up. It's a work in progress.
What time is bedtime? It's not enough to just say "same time every night."
What time is wake up time? It's not enough to just say "try to get up as the same time".

We need to understand: Are you in bed for 5 hours or are you in bed for 7.5 hours or are you in bed for 10 hours on a typical night? And how much actual sleep do you get while you are in bed every night?

Also, how long does it take you to fall asleep when you first go to bed?

How many wakes do you remember on a typical night? And how long does it take to fall back asleep?

And when you are too exhausted to get up, do you lie in bed trying unsuccessfully to get a bit more sleep? Or do you fall back asleep hard and sleep for another 1-2 hours?

All of those things are relevant in trying to figure out why you are still exhausted.
Every evening I aim to be in bed by 11pm. 10pm I turn off my computer etc and take out my dog. I use programs like f.lux on my computer and phone just in case the blue light disrupts anything in my brain. I might read in bed for a bit before trying to sleep which typically takes me 15-20 mins. On a good day I'm up at 9am, maybe 10am. I'm conscious of waking up during the night 5-10 times per night and I fall back to sleep within seconds. When I'm too exhausted to get up, I fall back to sleep hard and sleep for another 1-2 hours so on a bad day I'm up at noon and still knackered. Sorry for being vague :/
robysue wrote:
Beour wrote:
xxyzx wrote:see a shrink to address any issues you have that you wont admit to yet
I already have one to support me with being chronically sick and I've already discussed with him the psychological side of not sleeping well. It's not that I won't admit to hav/ing problems, quite to opposite actually. I'm well aware of it, but it's more that I'm like "now what?" and "what do I do with this?". Maybe this is something I should discuss with my therapist, thanks.
Would your psychiatrist/psychologist be willing to work with you on a cognitive behavior therapy for insomnia (CBT-I) program? A good CBT-I program does not typically focus on trying to figure out why the sleep is bad, but rather it focuses on what kinds of behaviors you can control that can encourage your sleep to become more sound and more consolidated. An important part of a good CBT-I program is setting reasonable, attainable short term goals in regards to your sleep as well as suggestions for changes in behavior patterns to achieve those goals. As you achieve the short term goals, you start working on reasonable, attainable longer term goals for making further improvements in your sleep quality.
Probably. Otherwise I can just find a therapist who will. I've done CBT in the past to get a better grip on my depression so I can do this too
Doublev wrote:I hope it solves your, but if not, keep looking and thinking, you will be the best person to solve this and when you do you will look back and think how obvious it was and why you and the doctors couldnt figure it out.
Cheers, I'm trying to become an expert on anything and everything me

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robysue
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Re: I don't know what's wrong with me and neither do the doctors

Post by robysue » Thu Jul 20, 2017 11:32 am

xxyzx wrote: i would think that if the airway closes there can be no vacuum
but i cant say there isnt one

i would like to find an explanation for the vacuum
it could be happening i just cant say how which leaves me just a tiny bit on the questioning side but open to more evidence for sure
The epiglottis is the flap of tissue at the top of the larynx. The position of the epiglottis controls which way stuff coming into the throat goes---i.e. in one position, stuff goes down the trachea and into the lungs. In the other position stuff goes down the esophagus and into the stomach.

In an obstructive apnea the upper airway has typically collapsed above the level of the epiglottis, but the diaphragm and respiratory muscles continue to work in an effort to bring air into the lungs---in other words, in an obstructive apnea you are trying to breathe but no air can get through the blockage in the upper airway. Because the diaphragm continues to work, the lungs continue to try to expand. Since no air can come into the trachea from the upper airway, that reduces the pressure in the trachea (i.e. creates the "vacuum"). If the pressure in the trachea is sufficiently low, it can cause the epiglottis to partially open, which allows contents from the stomach and esophagus to come up because of low pressure in the trachea.

In other words, because the diaphragm continues to work during an obstructive apnea, the esophagus and trachea can work rather like a straw: When you suck on the top of the straw (i.e. the lungs continue to expand because of the diagphram continues to work), the liquid at the bottom (i.e the stomach contents) goes up the straw.

Note that this phenomenon does NOT happen in a central apnea because in a central apnea, the airway is NOT blocked and the diaphragm is NOT working to expand the lungs. In a central apnea, the brain forgets to tell the diaphragm and other respiratory muscles to "inhale NOW".

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TASmart
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Re: I don't know what's wrong with me and neither do the doctors

Post by TASmart » Thu Jul 20, 2017 12:20 pm

In GERD the valve at the top of the stomach is weakened so stomach contents can backflow upwards.
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