Desperate for answers(Upper Airway resistance Syndrome?)

[Sleep_apnea_suffer]

I have been trying to find the cause of my insomnia but no one is willing to help me. I did the home sleep test again the sleep apneas were mild but I woke up at least 2-3 times a night and rarely go back to sleep. I did a home sleep test and found out that I have mild sleep apnea(r5.5 events per hour) and the oxygen level are above 90. Unfortunately, based on my research, these home sleep tests are limited as they do not find upper airway resistance syndrome.

I questioned this to the doctor yesterday because he thinks the poor sleep is down to my depression when I said that's bullcrap. I told him that I have breathing issues but he does not want to believe me. He did not like my response and basically cut the session short. In the short meeting we had, I told him that it might be upper airway resistance syndrome but he shrugged off the idea. I have tried cpap and it works, but I can't tolerate the pressure pushing against the airway. I asked if BIpap would be better, he also said no which is ironic since bipap is used for people who can't tolerate cpap and used for people on central apneas.

[MaxINTJ]

You probably want to do an in lab sleep study to get a better idea of what's going on. There are plenty of things other than breathing that can disturb sleep. The fact that you cannot go back to sleep after waking could mean insomnia of some sort. However, even an in lab study will not show UARS. I should know, as that is probably what I have.

As to a BiPAP vs a CPAP, the BiPAP is not for treating centrals - that would be an ASV, which some people also use to treat UARS.

As for being unable to stand the pressure, odds are an ASV or BiPAP will be the same - unless your being unable to stand the pressure relates to exhaling only - in which case both can have a much lower exhale pressure compared to the inhale pressure.

I am using an ASV machine and it is successfully treating my breathing issues but pressure goes to 25 every night.

[Pugsy]

So what machine did you try and at what settings?
And what makes you say you can't tolerate cpap? What problems where you having?
Do you still have the cpap machine?

The only way to for sure diagnose UARS is an in lab sleep study with a Pes device to measure airway patency.

[49er]

I have been trying to find the cause of my insomnia but no one is willing to help me. I did the home sleep test again the sleep apneas were mild but I woke up at least 2-3 times a night and rarely go back to sleep. I did a home sleep test and found out that I have mild sleep apnea(r5.5 events per hour) and the oxygen level are above 90. Unfortunately, based on my research, these home sleep tests are limited as they do not find upper airway resistance syndrome.

I questioned this to the doctor yesterday because he thinks the poor sleep is down to my depression when I said that's bullcrap. I told him that I have breathing issues but he does not want to believe me. He did not like my response and basically cut the session short. In the short meeting we had, I told him that it might be upper airway resistance syndrome but he shrugged off the idea. I have tried cpap and it works, but I can't tolerate the pressure pushing against the airway. I asked if BIpap would be better, he also said no which is ironic since bipap is used for people who can't tolerate cpap and used for people on central apneas.

The only thing I wanted to add to Pugsy's usual excellent advice is to suggest the possibility of seeing another doctor. It sounds like the current one has closed off the possibility of working with you and investigating your problems further.

49er

[AMESS]

Insomnia and depression go hand in hand. See a specialist in that field to see if you are depressed. Go from there. This may be the answer.


https://sleepfoundation.org/sleep-disor ... -and-sleep

[ajack]

It's very normal to wake up 3 or 4 times a night, normally we aren't aware and roll over and such. the problem is you are becoming fully awake and have trouble going back to sleep.
The apnea can also be waking you too much. depression and apnea fo hand in hand, a quick read of the board indicates that there are mental health issues associated.

[Somebody]

Research sleep maintenance insomnia for info on how to get back to sleep. The quicker you get back to sleep will reduce the bad effects of UARS while you look for a better doctor.

[Sleep_apnea_suffer]

You probably want to do an in lab sleep study to get a better idea of what's going on. There are plenty of things other than breathing that can disturb sleep. The fact that you cannot go back to sleep after waking could mean insomnia of some sort. However, even an in lab study will not show UARS. I should know, as that is probably what I have.

As to a BiPAP vs a CPAP, the BiPAP is not for treating centrals - that would be an ASV, which some people also use to treat UARS.

As for being unable to stand the pressure, odds are an ASV or BiPAP will be the same - unless your being unable to stand the pressure relates to exhaling only - in which case both can have a much lower exhale pressure compared to the inhale pressure.

I am using an ASV machine and it is successfully treating my breathing issues but pressure goes to 25 every night.

I can tell the back of my throat that there is something there that is causing the obstruction. Unfortunately, these foolish doctors don't seem want to view things in a scientific way by putting it under the microscope and deeply examining what is wrong with the patient. These fools just want to take your hard earned money so they can go travel the world and think that they are making a difference but what they are really doing is lining their thick pockets. They want to drug everyone with Anti-depressant pills which is only temporary fix. Like with everything in life, I have to beg, beg to get the answers. You should always question things in life and never take things for face value. I might have to ask if the sleep clinic can pick up any obstruction which this is but it won't show up on the oxygen chart - instead it might show up as 'snoring'.


As for Bilevel/asv, CPAP helps but I have trouble exhaling when using cpap in the night.

[Sleep_apnea_suffer]

So what machine did you try and at what settings?
And what makes you say you can't tolerate cpap? What problems where you having?
Do you still have the cpap machine?

The only way to for sure diagnose UARS is an in lab sleep study with a Pes device to measure airway patency.

I have tried both cpap and APAP but I have trouble exhaling which is why I want to look for alternative methods. I don't want to go down the path of surgery for the back of my throat because I know it's extremely painful.

[Sleep_apnea_suffer]

I have been trying to find the cause of my insomnia but no one is willing to help me. I did the home sleep test again the sleep apneas were mild but I woke up at least 2-3 times a night and rarely go back to sleep. I did a home sleep test and found out that I have mild sleep apnea(r5.5 events per hour) and the oxygen level are above 90. Unfortunately, based on my research, these home sleep tests are limited as they do not find upper airway resistance syndrome.

I questioned this to the doctor yesterday because he thinks the poor sleep is down to my depression when I said that's bullcrap. I told him that I have breathing issues but he does not want to believe me. He did not like my response and basically cut the session short. In the short meeting we had, I told him that it might be upper airway resistance syndrome but he shrugged off the idea. I have tried cpap and it works, but I can't tolerate the pressure pushing against the airway. I asked if BIpap would be better, he also said no which is ironic since bipap is used for people who can't tolerate cpap and used for people on central apneas.

=========

insomnia has many causes

depression will mess up your sleep big time
as will stress and many other things

did your IHT have a number for RDI or RERA ?

you may , or may not, also have breathing issues but
UARs is not something you will sense as a breathing issue

bipap has many uses
but the pressure will still push on your airway
and UARs would require yet a lot more pressure if you try to treat that condition

try another doctor
start with your family doctor and a full physical with complete labs
tell him you have insomnia and depression
and have him send you to a good shrink

I have gone to various GPs and they all want to drug me. There was this one time where they did not find anything but then I had to beg to get a closer examination and eventually they found that I was right and this problem did not show up on the xray.

[Sleep_apnea_suffer]

It's very normal to wake up 3 or 4 times a night, normally we aren't aware and roll over and such. the problem is you are becoming fully awake and have trouble going back to sleep.
The apnea can also be waking you too much. depression and apnea fo hand in hand, a quick read of the board indicates that there are mental health issues associated.

Not when the patient is selfaware that there is an obstruction that isn't an apnea.

[Julie]

Most new machines have a feature to deal with exhalation pressure - a separate setting that addresses it, so I wouldn't be very concerned unless you get an older machine that doesn't have that.

But I also want to caution about something else - you may have a 'real' obstruction due to anatomical problems, but there is also a well known (to doctors) condition called 'hysterical globus" in which people have a sensation of 'something' in their throats, but in fact there is nothing to be found. I'm NOT suggesting either that you have that (don't let the silly archaic name worry you) but it's just one of those things that do exist, as do problems with epiglottal interference in the area, not always present and not always needing surgery. So maybe a good ENT doctor would be a good one to see providing you're careful to not let them talk you into uvulopatalatal or similar surgeries that have been found to rarely help.

[ChicagoGranny]

Sleep_apnea_suffer

You really need to answer Pugsy's questions and let her help you. A lot can be done without doctors. The success of many of us is about 5% dependent on a doctor and 95% dependent on our own initiative and this forum. (Best to ignore xxxyzx.)

I questioned this to the doctor yesterday because he thinks the poor sleep is down to my depression when I said that's bullcrap.

Sleep-disordered breathing is a common cause of "depression".

[coconur]

I have mild apnea, and also went through a nightmare trying to get treatment. Hopefully my story will help in some way, even if it's just knowing you're not alone.

Warning! Long story ensues, feel free to ignore.

About 20 years ago, my normally low blood pressure started to rise inexplicably. I also started getting treatment for depression. For the blood pressure, I tried everything I could think of short of pharmaceuticals, including aerobic exercise, tai chi, meditation -- you name it, nothing helped. For the depression, every time I felt better and tried to get off the meds, I would go right back down and have to go back on the meds. I went part time at work, but still kept getting more and more tired. Finally, almost 17 years ago, my husband had a sleepless night and had sat up to read. That's when he heard me stop breathing, only for 10-15 seconds at a time, but it repeated. My first sleep study showed me waking up 5 times per hour with apnea and twice more per hour with just snoring. The doctor said, "You don't have apnea. Your apnea is waking you 5 times per hour." He went on to explain that insurance would never cover treatment for a mild case, so he refused to write a prescription for a cpap.

Knowing I needed some kind of treatment, my husband went online and found a non-custom dental appliance for about $70, the kind of appliance that pulls the lower jaw forward about an eighth of an inch. Within a month, my blood pressure was back to its normal level, about 105/70, and I was finally able to stay off the anti depressants. Haven't been on them since. It worked so well that my husband got one for his snoring, and discovered that he didn't have to wake up with a sore throat anymore. My brother, who stops breathing for 40 seconds at a time, 60 times per hour, even got one to use when he goes on sailing trips, and says it works well enough for a week or two.

But, the appliance moved my teeth. My husband doesn't have that problem, and is still using his today. After 6-7 years of using the appliance, my bite was off enough that I needed braces, so I went in for a second sleep study with a different doctor. This doctor could see that I needed help even with a mild case. Even so, the numbers indicated that a cpap pressure of 8 should be enough to cover 95% of my apneas. Unfortunately, it wasn't enough to keep my blood pressure in check. Fortunately, this doctor listened to me, and even though it took 4-5 months, we finally got my pressure up to a level that brought my blood pressure back down again. We had to go all the way up to 12!

Bottom line is, don't give up. If your current doctor isn't helping you, find one who will. Even then, you may have to advocate for yourself. I don't know what I would have done if I didn't have the experience with the appliance that proved to me that my blood pressure could be controlled if my apnea treatment was good enough. Trouble is, not enough *good* studies have been done to figure out how to effectively treat the mild cases.

I sure hope you find the help you need.

[coconur]

Oops! I meant "if my apnea was treated *well* enough".