Sleep-onset insomnia

[PEF]

I have been reading some research that Dr. Krakow has been doing on xPAP and sleep onset insomnia. I have a strong feeling that what he describes is the REAL reason for my severe sleep onset insomnia. This is because, although with my new sleep routine, it has improved, but that has happened many times before. Sooner or later my sleep onset insomnia will return, it always does. I have been aware for the last 10 years or so that I am really afraid to fall asleep. But I was never able to figure out why. I have used many protocols to overcome this fear involving sleeping pills, meditations, relaxation techniques. But they always fail eventually. The severe anxiety always comes back. I believe this is because my brain knows it is in fact dangerous for me to fall asleep. It also knows that my machine is not protecting me.

http://shop.classicsleepcare.com/blogs/ ... c-insomnia

I have come to the following conclusions about my therapy:

1. Although I feel slightly better, it has been a failure.
2. I need much higher pressure but cannot tolerate it.
3. I believe that, if my xPAP therapy was successfully addressed, it may actually cure my sleep-onset insomnia.
4. My sleep-onset insomnia is directly CAUSED by my OSA/UARS.
5. My machine is not addressing my UARS. These machines are not designed for that.

During the times when my sleep-onset insomnia is improved, all that happens is that I develop the fragmented sleep type that wakes me up often during the night. That is what I have now.

[avi123]

PEF, are you saying that all those posts by robysue about treating Insomnia such as these
are probably for the birds?

viewtopic/t114454/Depression-medicine-Mirtazapine-.html

[sewsleepy]

"The severe anxiety always comes back. I believe this is because my brain knows it is in fact dangerous for me to fall asleep."

I totally relate to this feeling, it is what I've been saying about myself for years. I was diagnosed with airway insufficiency, is that what the article is referring to?

Some people seem to fall asleep and sleep through regardless of the number of times their apnea kicks them into a lighter sleep. Even though their sleep quality is terrible, they do sleep. Like my husband, I had to push him into getting a sleep study because he was not even aware he was snoring and choking for breath all night. I, on the other hand, have awareness of it. I have a deep apprehension of falling asleep developed over years of fighting for breath during sleep. There were times I'd be so tired, I'd finally fall into a deep sleep, then awaken to realize I was straining for breath against a closed airway to the point my whole neck and upper back were sore from it. And the headache! I would often have nightmares of suffocating. It makes sleep a time of danger instead of restful. I mean, think about it, not being able to breathe is a terrifying feeling.

I am fortunate that apap therapy has changed things for me. The apprehension is still there but I do fall asleep and stay asleep most of the night now. But I hear you that it is not really designed to fit this problem exactly.

[BlackSpinner]

. But they always fail eventually.

Yes. They do.
I was probably in my 20's and sharing a bed for the first time when I realized other people fall asleep in less then an hour and stay asleep. When else would one design code, design pictures, design patterns for costumes, stories?

Only when I first got my cpap machine, for the first 3- 4 months I fell asleep quickly but it soon got back to the old pattern. I can do visualization, meditation, relaxation, self hypnosis - it doesn't help falling asleep. I don't fuss about it. If my mind gets into an anxiety attitude I use those techniques to get off the track and design something, tell a nice story to myself, plan next years garden.

[PEF]

PEF, are you saying that all those posts by robysue about treating Insomnia such as these
are probably for the birds?

viewtopic/t114454/Depression-medicine-Mirtazapine-.html

Absolutely NOT! This approach does work for a lot of people with insomnia and it obviously worked for Robysue. However, in many patients who have had insomnia for a very long time and who have tried many, many psychological approaches, there could be a physiological cause for the insomnia. In other words, the person does not realize that it is actually the fear of SDB that causes the insomnia. Robysue's approach assumes that the sleep-onset insomnia and the apnea are separate issues, that the insomnia, which is presumed to be a psychological issue, must be addressed in order for the xPAP therapy to work. But what if the insomnia is actually caused by untreated UARS? I am also saying that I think my xPAP therapy is not preventing breathing events that are happening to me in certain levels of deep sleep from happening. I believe this because of the weird awakenings that have been happening since my sleep onset insomnia has stopped.

Basically, as I think more about it, I think xPAP protects my breathing fine in lighter stages of sleep and sometimes in deep sleep. However, at times as recently when I sleep really deeply, I am having some crazy events that are waking me up. Since I have not had the sleep onset insomnia, I am waking up several times per night with anxiety which was not happening before.

Did you read the article by Dr. Krakow?

[PEF]

I have also had a recurrence of my nocturia and LPRD symptoms in the last 2 weeks since my sleep onset insomnia disappeared, which I have not experienced since before starting xPAP.

[avi123]

del

[avi123]

Did you read the article by Dr. Krakow?

yes, Dr Krakow suggests advanced PAP therapy. Dr Steven Parks writes this about it:

http://doctorstevenpark.com/sleep-apnea ... e-syndrome

So how does one diagnose UARS? The first step is to undergo a complete ear, nose and throat evaluation. In most cases, the exam is normal. Sometimes what we’ll see is a deviated septum or nasal congestion due to allergies but more commonly what you’ll see is when we look in the mouth, the back of the throat is very narrow and you’ll have a very large tongue that sits very high up, covering up the uvula, the little thing that hangs down in the middle of your throat.

The next step is to undergo an endoscopic evaluation, meaning that a small, tiny camera is placed through your nose and your airway is visualized. Normally, when you look at the airway, you can see the vocal cords behind your voice box but in people with UARS, the tongue fits further back, so most of the voice box is covered up. Especially if the person lies down, the tongue falls back even more, leaving a 1-2mm slit. When you are awake, you can breathe through this slit. But as you fall asleep, the muscles relax as you get deeper into sleep. Then, when you reach deeper levels of sleep, or REM sleep (when you’re dreaming), the muscles have to relax completely and that’s when you start to obstruct. Then, once you obstruct, you stop breathing and you get aroused, going to light sleep and the cycle happens over and over again.

One of the ways that this is treated is using a dental device that pulls the lower jaw forward, which is similar to what you use for snorers and mild sleep apnea patients. So I have the patients thrust their jaw forward and by putting the jaw forward, it also pulls the tongue forward and you can see a vast improvement in the caliber of the airway.

Based on an extensive series of questionnaires, your physical examination, your past family history and the endoscopic evaluation, you can determine whether or not you need a sleep study. So if you undergo a sleep study and you are found to have sleep apnea, then it is treated like normal sleep apnea. That is a topic for another podcast in itself. But if you don’t officially meet the criteria for sleep apnea—meaning that your apnea/hypopnea index is less than 5 but you do have evidence of multiple arousals, then we can say that you may have UARS.

You may be wondering, I just gave you a good explanation for UARS, but what can you DO about it? In general, UARS is treated like sleep apnea. In general, the options are nasal breathing optimization, dental appliances, CPAP, or surgery, as a last resort. Nasal optimization means if you have any degree of nasal congestion or obstruction, that’s dealt with, whether medically or surgically. So, for most people, allergies are a very common reason that can be treated properly with medications or avoidance measures or even allergy shots. If you have a deviated septum, then that can be dealt with surgically if the medical options don’t work. Dental appliances are also useful in people with sleep apnea and snoring in the same way it can be used for UARS patients, as well. The mechanism is essentially the same: as the tongue starts to fall back—if it only falls back partially, then you create a vacuum effect upstream and the palate starts to collapse and then you get snoring. But in UARS patients, the tongue falls back completely, causing obstruction and more arousals. Some of the problems with a dental device include jaw pain, ear pain, and bite problems due to the nature of this device.

CPAP, or Continuous Positive Airway Pressure, is actually the gold standard treatment for sleep apnea. In the original article that described UARS, CPAP was used successfully in many of these patients. The way CPAP works is that a small mask is placed tightly over your nose and a small amount of positive air pressure is gently blown in through your nose, stenting your airway open while you are sleeping at night. If you have tried and failed these conservative options, then there are surgical options as well.

Before we finish this evening’s discussion, let me just bring up an interesting case example which will illustrate my point. I had a patient, a young woman in her 30s, who came to see me with recurrent throat infections and was also found to be extremely tired and had depression, on anti-depressants. She also had severe cold hands and feet, low blood pressure with frequent lightheadedness and dizziness, recurrent sinus infections, migraines and chronic diarrhea. She was severely distraught because her overall health had deteriorated to the point where she couldn’t function normally at her job. A sleep study showed that she had mild sleep apnea, at 14 events every hour. She tried CPAP but couldn’t tolerate the mask. Then, she also refused a dental device because she had TMJ. Finally, after a long discussion we decided to perform sleep apnea surgery with her palate and tongue.

We did a conservative procedure on her palate, called a uvulopalatal flap, as well as a tongue-based procedure. Six months later on a follow-up sleep study; her apnea/hypopnea index had dropped to .2, which is basically cured. But, more surprisingly, she noted that her cold hands and feet were gone, her diarrhea was much better and even her sinus headaches and migraines were better. On her last doctor’s exam, she noted also that her blood pressure had normalized and she wasn’t lightheaded or dizzy anymore. She was completely off her anti-depressants and reported a “life-changing experience.”

This woman had classic UARS but because she also met the criteria for sleep apnea, was able to undergo definitive treatment. My guess is that, untreated for many years, she would have gained more weight eventually. Many of her UARS symptoms would have disappeared as the onset of sleep apnea signs and symptoms began to appear.

One interesting study many years ago looked at UARS and its possible association with the somatic syndromes and these include a wide-ranging list of medical conditions like chronic fatigue syndrome, fibromyalgia, hypothyroidism, irritable bowel syndrome and more. Obviously, not all patients with the above conditions have UARS but based on this paradigm, I think it’s safe to say that a significant number of people with these conditions actually have UARS instead. People with these somatic syndromes all have in common some form of chronic fatigue, as well as an inability to sleep well. Obviously, more study is needed in this area.

As you can see, UARS can potentially explain many symptoms. Typically, these patients see multiple doctors for various complaints without ever finding complete relief. In the end, some even lose faith in Western or allopathic medicine and look elsewhere in alternative or complimentary forms of treatment. UARS is a treatable condition. The first step is a thorough evaluation by someone who knows what to look for.

If you want more information about UARS, as well as a more complete picture of why we have so much of these problems and what we can do about it, go to sleepinterrupted.com to take a look at my newly released book, which describes everything in much more detail.

That’s it for tonight’s podcast. For more information, please visit doctorstevenpark.com. You can sign up for my email updates and newsletters as well at this address.

[BlackSpinner]

Ignore Avi - he is total asshole. He must be off his meds again.

[jtravel]

PEF,

Do you use a SPO2 meter to check your Oxygen blood Level?
The Reason I ask is MY AHI on average is about 1.5 using my APAP machine.
MY SPO2 level however does drop to 80% at some points during the Night.
I have several incidences where I feel I can't breath even with the Apap Machine on.
I'm afraid to go to sleep and have panic attacks over it some nights.
Even during the day my nose shuts down and plugs and I can't breath properly and see my SPO2 levels running at 94%
Normal is 100 to 95%
I use Nasal masks like the Dreamware and Wisp.
I tried a Nasal pillow mask the Pilairo but it caused sores in my nostril after a couple days of use.
The Dreamware causes my nose to become painful inside for some unknown reason so I then switch to the wisp.
I keep cycling thru these masks as the pain moves around.
I have tried three different Full face masks but just can't seem to tolerate them for a whole night.
MY SPO2 however remains in the Upper 90 range when i use a full face mask so I believe that is what i need.
My other option is to look into getting Oxygen added to my treatment.

[emmagoldman44]

JTravel wrote ".... MY AHI on average is about 1.5 using my APAP machine.
MY SPO2 level however does drop to 80% at some points during the Night."

Hi jtravel - I'm pretty new around here myself, but I am curious about that. Have you looked at the detail of your sleepyhead data for those periods where your o2 levels drop, and are there any noticeable changes in your respiration patterns? and what the pressure is at those times?

[PEF]

PEF,

Do you use a SPO2 meter to check your Oxygen blood Level?
The Reason I ask is MY AHI on average is about 1.5 using my APAP machine.
MY SPO2 level however does drop to 80% at some points during the Night.
I have several incidences where I feel I can't breath even with the Apap Machine on.
I'm afraid to go to sleep and have panic attacks over it some nights.
Even during the day my nose shuts down and plugs and I can't breath properly and see my SPO2 levels running at 94%
Normal is 100 to 95%
I use Nasal masks like the Dreamware and Wisp.
I tried a Nasal pillow mask the Pilairo but it caused sores in my nostril after a couple days of use.
The Dreamware causes my nose to become painful inside for some unknown reason so I then switch to the wisp.
I keep cycling thru these masks as the pain moves around.
I have tried three different Full face masks but just can't seem to tolerate them for a whole night.
MY SPO2 however remains in the Upper 90 range when i use a full face mask so I believe that is what i need.
My other option is to look into getting Oxygen added to my treatment.

Really good idea. I had wondered before about doing something like that. I think I will buy one from Amazon and actually see what my blood oxygen levels are doing.

Can you or anyone recommend some of the better ones?

However. Dr.Parks says that people with UARS usually don't have much oxygen desaturation during events.

But very low level oxygen desaturation is also associated with worsening of chronic pain. My back pain has also been worse since I have been having these mysterious occurrences.

I also noticed that Dr. Krakow also has a wealth of info on his blog. I already read his book, Sound Sleep, Sound Mind. When I have time, I am going to read more of his latest articles.

[jtravel]

[/quote]

Really good idea. I had wondered before about doing something like that. I think I will buy one from Amazon and actually see what my blood oxygen levels are doing.

Can you or anyone recommend some of the better ones?

However. Dr.Parks says that people with UARS usually don't have much oxygen desaturation during events.

But very low level oxygen desaturation is also associated with worsening of chronic pain. My back pain has also been worse since I have been having these mysterious occurrences.

I also noticed that Dr. Krakow also has a wealth of info on his blog. I already read his book, Sound Sleep, Sound Mind. When I have time, I am going to read more of his latest articles.[/quote]

I'm using the very inexpensive finger battery operated Contec CMS50D+ that has it's own software but also works with sleepyhead software that I purchased from Amazon for $36 shipped. https://www.amazon.com/CMS-Finger-Pulse ... B00B8L8ZXE
I'm not any kind of expert and just a fellow Suffer like you who wanted to better understand what was happening to me. I felt that knowing my SPO2 levels would help. I can present that data to my doctor to help him make a better diagnosis of whats going on with me.
I just read what you said you felt and what was happening to you and I found it somewhat the same as I have experienced.

[PEF]

Really good idea. I had wondered before about doing something like that. I think I will buy one from Amazon and actually see what my blood oxygen levels are doing.

Can you or anyone recommend some of the better ones?

However. Dr.Parks says that people with UARS usually don't have much oxygen desaturation during events.

But very low level oxygen desaturation is also associated with worsening of chronic pain. My back pain has also been worse since I have been having these mysterious occurrences.

I also noticed that Dr. Krakow also has a wealth of info on his blog. I already read his book, Sound Sleep, Sound Mind. When I have time, I am going to read more of his latest articles.[/quote]

I'm using the very inexpensive finger battery operated Contec CMS50D+ that has it's own software but also works with sleepyhead software that I purchased from Amazon for $36 shipped. https://www.amazon.com/CMS-Finger-Pulse ... B00B8L8ZXE
I'm not any kind of expert and just a fellow Suffer like you who wanted to better understand what was happening to me. I felt that knowing my SPO2 levels would help. I can present that data to my doctor to help him make a better diagnosis of whats going on with me.
I just read what you said you felt and what was happening to you and I found it somewhat the same as I have experienced.[/quote]

Thanks so much for the link!

[PEF]

OK, I have been very busy. I have been reading a lot more about what Dr. Krakow is doing. Below is another article from him which I believe pertains to my case of UARS. Then below that, I have posted an excerpt from the article that pertains to what type of patient I believe I would be. I also read a long thread from 2009 on this site about UARS, on which Dr. Krakow was a participant.

http://shop.classicsleepcare.com/blogs/ ... -vs-comisa

Here is the excerpt:


"There are a few notable exceptions. For example, we may encounter someone with very severe insomnia with all the facets of a strong psychological component including psychiatric disorders, excessive time monitoring behavior, very poor sleep hygiene and obvious psychophysiological conditioning, but this same individual has done their homework, read up on the role of OSA/UARS, and presents to the center with a narrowed vision to attack the sleep-disordered breathing exclusively. In these cases, the patient has been suffering a long time with inadequate treatments; the individual recalls no consistent or large improvements in insomnia while attempting psychotherapy, sleep hygiene instructions or even cognitive-behavioral therapy. From his or her perspective, it is time for something new, and the patient is eager to try PAP. Even though such individuals often benefit from the aforementioned psychological therapies and educational approaches, we have found it more reassuring to follow their lead and initiate PAP therapy as soon as feasible."



I have given up on the psychological approach I began about 3 weeks ago because: 1. Seemed to work for the first week, but had many more arousals and awakenings than when I had the sleep-onset insomnia. I just traded one type of insomnia for another type. All these attempts to fool my brain never work beyond the first week and I know that. Constantly trying and failing produces a lot of anger. 2. Based on my extensive experiences with the "psychological"approaches to insomnia, including medications, CBT, and psychotherapy, I simply do not believe that my almost life-long struggles with insomnia are psychologically-based. I don't believe that my insomnia is interfering with my xPAP therapy at all.

If I am psychologically distressed at bedtime, I KNOW that I am and I know how to calm myself down. However, this is most often not the case. There is another basic reason for my insomnia which I believe is SDB related. My brain does not like to allow me deep sleep and under no circumstances will my brain allow me to fall asleep on my back without a xPAP mask. It has only been about a year since starting xPAP that I have ever been successful at falling asleep on my back. So this may be telling me that the real reason for my insomnia is SDB related, anxiety related to bad breathing events. No amount of spiritual oriented imagery can save me from that.

I have had a strong intuition that what I need is more pressure, a lot more, but every time I raised the max pressure even a little, I had massive "events" once in deep sleep that caused me to wake up or feel as if I had arousals during the night. We never really know for sure why we wake up. Correlation is not necessarily causation. I often would be aware of large leaks (while wearing a mask that really does not leak at all), sometimes confirmed on Sleepyhead reports. I began to suspect that it was not the leaks that woke me up, but some event that caused me to struggle unexpectedly with my mask. Now I think I may know what is going on because I am doing much better after making some changes to my machine. But before I post the results, I want to make sure I am right about this.

More later!