[Diagnosis] Trying to cope with all this...

[Martinfs]

Hello everybody,

My name is Martin, I'm 28 years old, I'm thin (?¿) and I've been diagnosed with Severe UARS (34 per hour) three months ago and since then everything seems to be a nightmare, and I wish it was, because I can't even sleep to get one!

I'll try to be quick.
For the past two years I've been struggling with excessive daytime sleepiness. At first I tried a psychiatrist, because everybody told me "you are under a lot of stress" (and I was!), so I started with clonazepam just to realize that it made me feel even worst and woke me up every two hours. I told that to the doc and he sent me to a neurologist. I did a polysomnography, they told me I had Severe UARS, then went to a otorhinolaryngologist who recommended a tonsillectomy and I had them removed one month ago.


The thing is I sleep worst than when I had the tonsils. I know it might be a little swollen yet, but I don't feel that it did something positive. So I bought a CPAP Dreamstation (APAP) and a mask (Dreamwear) as I can't stop suffering every single day. I'm feeling like I would die at any moment. It's like torture, my eyes are about to explode, I forget things all the time, I'm always in a bad mood, I can't concentrate on even small things and I've stopped doing things I loved. I feel physically disabled.

As I didn't do any titration just yet. I followed what internet showed me to calibrate the pressure and used Sleepyhead to see the results, which of course, as a newcomer, I really don't understand very well. 

My first night was horrible, I spent two hours trying to sleep with that thing in my face, until I was able to. I woke up several times during that night, and felt like I haven't slept at all, I got an AHI of just 1.75.
I gave it another chance in the middle of the night, when I woke up from my UARS, two days ago, with a little more pressure. I slept horrible again, but got an AHI of 0.53 for the more or less 2 and a half hours I used it.

So, I still have to live one month until I do the titration. So maybe you can help me get this thing right? I will attach my sleepyhead results of the two days I used it. I know it's very little time, but I really want to know if I'm going in the right direction and also maybe you can tell me if you see anything particular I should pay attention to.

I'm wondering... Is it normal to have RERA's without any other event at the same time?

I will appreciate any help you can give me!

Here you can see the PDF of my results (I had to take out the www, because it did not allowed me to post it any other way)

dropbox.com/sh/o8yodw0fv5l3yz2/AAB13Wrm2LjrxWrILmwrnRaea?dl=0

[PollCat]

Even though I've been receiving this therapy for a long time, I will let those with more experience using the software handle the analyses.  

I do have a question though: why is your maximum pressure setting so low?  If you're doing this on your own, I'd set the upper limit high enough to allow the machine to make the appropriate adjustments.   In my case the prescribed pressure is 15, but I've set the upper limit on my machine to 18 (a pressure that I rarely hit).

BTW,

[Martinfs]

I'll increase the pressure. I didn't set it too high because I was scared it could hurt me somehow.

Thanks!

[eseedhouse]

I'll increase the pressure. I didn't set it too high because I was scared it could hurt me somehow.

Well, relax.

Unless your lungs are already terribly damaged the pressure from a *PAP machine won't hurt you.  20cm of water, which is the maximum these machines can commonly put out, is only about 2% of normal sea level air pressure. 

It feels like a lot because of the differential between your airway and the ambient air outside.  But it's a lot less pressure than you can generate with your own lungs - if you can blow up a balloon the pressure from a *PAP machine isn't going to hurt you.  If you can suck water up an 8" straw you are generating as much pressure as your machine does at max.  If you can drink a MacDonald's milkshake through a straw your machine can't even come close to that.

It does take getting used to, but your body will easily adapt over the space of a few days.  Unless, as I said before, your lungs are damaged to the point where you can barely breath.

[Russatrice]

Martin, I would increase it gradually to 7 minimum pressure and probably 10 max and see what happens. It won't hurt you. If you have trouble adjusting to more pressure you can use the ramp feature for a while, set to a pressure of 5 at 10 minutes. Your results look good so far. You will need to use CPAP regularly for a couple of weeks to start feeling better during the day. Be patient and rest as much as you can until you learn to sleep well with mask and all. You can do this!

[Martinfs]

I'll increase the pressure. I didn't set it too high because I was scared it could hurt me somehow.

Well, relax.

Unless your lungs are already terribly damaged the pressure from a *PAP machine won't hurt you.  20cm of water, which is the maximum these machines can commonly put out, is only about 2% of normal sea level air pressure. 

It feels like a lot because of the differential between your airway and the ambient air outside.  But it's a lot less pressure than you can generate with your own lungs - if you can blow up a balloon the pressure from a *PAP machine isn't going to hurt you.  If you can suck water up an 8" straw you are generating as much pressure as your machine does at max.  If you can drink a MacDonald's milkshake through a straw your machine can't even come close to that.

It does take getting used to, but your body will easily adapt over the space of a few days.  Unless, as I said before, your lungs are damaged to the point where you can barely breath.

Martin, I would increase it gradually to 7 minimum pressure and probably 10 max and see what happens. It won't hurt you. If you have trouble adjusting to more pressure you can use the ramp feature for a while, set to a pressure of 5 at 10 minutes. Your results look good so far. You will need to use CPAP regularly for a couple of weeks to start feeling better during the day. Be patient and rest as much as you can until you learn to sleep well with mask and all. You can do this!

Great! I'll try increasing little by little

[xxyzx]

those AHI numbers sound good  
but
Increased upper airway resistance in this disorder does not lead to cessation of airflow (apnea) or decrease in airflow (hypopnea), but instead leads to an arousal secondary to increased work of breathing to overcome the resistance. Repeated and multiple arousals (of which the person is usually unaware) result in an abnormal sleep architecture and daytime somnolence (sleepiness). Arousals result in sympathetic activation, and UARS is therefore likely to cause hypertension similar to obstructive sleep apnea syndrome


what was your lowest O2 level 
how many hours are you sleeping 
could you have other problems
many things disturb sleep other than UARS or OSA or CSA

has your doctor considered modafinil 

surgery is usually used for children to fix uars 

have you been checked for hiatal hernia which can aggravate the problem 

Have you adjusted your lifestyle to help sleep better?
Behavioral modification includes getting at least 7–8 hours of sleep, avoiding sleeping in supine position (on the back), sleeping with head end of bed elevated and avoiding sedatives, alcohol and narcotics.



Upper Airway Resistance Syndrome (UARS)

Upper airway resistance syndrome (UARS) is a condition that was first identified and described at Stanford University. It is very similar to obstructive sleep apnea (OSA) in that the soft tissue of the throat relaxes, reduces the size of the airway, and results in disturbed sleep and consequent daytime impairment, including excessive daytime sleepiness.

Although the increase in upper airway resistance is not enough to meet criteria of the sleep disordered breathing that define obstructive sleep apnea, the resulting increase in breathing effort does cause a brief awakening from sleep that is often undetected by the affected individual. When this scenario repeats throughout the night, sleep is impaired, just like in obstructive sleep apnea.

 The same treatments that are successful for OSA can be used to treat UARS. While CPAP remains the most effective treatmen.  
 Alternative treatments such as oral appliances, positional therapy (restricting the individual to sleeping on his/her sides), and weight loss may be effective in improving sleep disordered breathing in individuals with UARS.

[Martinfs]

those AHI numbers sound good  
but
Increased upper airway resistance in this disorder does not lead to cessation of airflow (apnea) or decrease in airflow (hypopnea), but instead leads to an arousal secondary to increased work of breathing to overcome the resistance. Repeated and multiple arousals (of which the person is usually unaware) result in an abnormal sleep architecture and daytime somnolence (sleepiness). Arousals result in sympathetic activation, and UARS is therefore likely to cause hypertension similar to obstructive sleep apnea syndrome


what was your lowest O2 level 
how many hours are you sleeping 
could you have other problems
many things disturb sleep other than UARS or OSA or CSA

has your doctor considered modafinil 

surgery is usually used for children to fix uars 

have you been checked for hiatal hernia which can aggravate the problem 

Have you adjusted your lifestyle to help sleep better?
Behavioral modification includes getting at least 7–8 hours of sleep, avoiding sleeping in supine position (on the back), sleeping with head end of bed elevated and avoiding sedatives, alcohol and narcotics.



Upper Airway Resistance Syndrome (UARS)

Upper airway resistance syndrome (UARS) is a condition that was first identified and described at Stanford University. It is very similar to OSA in that the soft tissue of the throat relaxes, reduces the size of the airway, and results in disturbed sleep and consequent daytime impairment, including excessive daytime sleepiness.

Although the increase in upper airway resistance is not enough to meet criteria of the sleep disordered breathing that define obstructive sleep apnea, the resulting increase in breathing effort does cause a brief awakening from sleep that is often undetected by the affected individual. When this scenario repeats throughout the night, sleep is impaired, just like in obstructive sleep apnea.

 The same treatments that are successful for OSA can be used to treat UARS. While CPAP remains the most effective treatmen.  
 Alternative treatments such as oral appliances, positional therapy (restricting the individual to sleeping on his/her sides), and weight loss may be effective in improving sleep disordered breathing in individuals with UARS.

That's interesting, I do have hiatal hernia and pretty much I started with the sleeping problems at the time I was being treated for esophagitis, which in fact is created because of the hiatal hernia. You have given me a great clue, I'll discuss that with my doctor, thank you!

And yes, she gave me Modafinil and Zolpidem (the one that lasts longer), I started yesterday. My first night with Zolpidem gave me 5 and a half hours of sleep, but didn't felt like I rested, so I suppose that even if I don't wake up, I'm still not sleeping correctly. And Modafinil didn't help me much today, I was still very sleepy, maybe because of the combination of both pills? I mean, one is for sleeping and the other one for staying awake. I find that pretty strange, I really don't know how that might affect my body or even my mind...

I don't do any illegal drugs, neither alcohol, I go every night to bed at the same time and I'm not going through any stressful situation at the moment (other than trying to sleep!)

[trish6hundred]

Hi Martinfs,
WELCOME! to the forum.!
I wish you good luck in finding out what is going on with your sleep, and also with your CPAP therapy, and getting it fine-tuned to meet your needs.

[Martinfs]

Hello again!

After another night, I did what you all told me, and increased the minimum pressure from 5 to 6, then I woke up around 5 am (I don't know why) and as I saw in the graphics many spikes (like I was in need of more pressure), so I increased the minimum to 6.5 and it went very well, but I woke up again at 8 am because air was exiting though my mouth (something that I've read to be pretty common), so I taped my mouth, and managed to sleep for another hour or so.

I guess my next move should be increasing minimum pressure to 7 and max to 10? And then try to manage the leaking problem, I will look for a chin strap.

My daily report is here:

https://www.dropbox.com/sh/blkz9gnnt1onw...0dhLa?dl=0

Cheers!