Sleep-onset insomnia

[PEF]

I decided to revive this post because i believe there have been some changes in the thinking about UARS within the forum and the medical community. Please don't bother to read everything above this post because it will only confuse you. I can summarize the issues here:

1. I initially started CPAP therapy just 3 years ago to help me with my problematic symptoms of LPR that only seemed to be happening when I was in deep (REM) sleep. I never had a sleep test.
2. For the first year and a half, CPAP exacerbated greatly my life-long insomnia.
3. I suspected that OSA was a small part of my problem and that UARS was a big problem, but experts on this forum did not agree.
4. During the first year and a half, I was not at all bothered by nighttime LPR , but my insomnia was really bad to the point where I was not getting much deep sleep at all. I was happy with the relief from the LPR symptoms.
5. Although my Sleepyhead reports indicated a very low AHI, I found it disturbing that the FL's were always too high, the activity about 1/4 to 1/3 up the frame. Without nasal congestion.
6. I continues the whole time, up until now, to be compliant with CPAP because I felt it helped my breathing a little. Now I am so used to it that it is not contributing to my insomnia.
7. However, I continue to alternate between unexplained periods of NO LPR/BAD INSOMNIA OR INSOMNIA IMPROVEMENT/LPR. Recently, I have had periods of terrible episodes of LPR causing terrible sore throats, Asthma and congested nasal passages. But guess what, until this happened a few months ago, I was sleeping better than I ever had in my life. The reason for that was I had taken Robby Sue's advice about going for CBT insomnia therapy. I guess I could not argue that CBT therapy did not work for my insomnia without giving it a shot while I was using CPAP to reduce my irrational fear of sleeping.

Probably because I had had a lot of CBT therapy all my life, I was able to make great progress with it fast. My
therapist, a Psychiatrist, had kept me on a very low dose of Amitriptyline and Ambien (about 12mg and 1mg
respectively) at first. I started this last February, in 2017. I won't go into the details of the therapy, but just to
say I made fantastic progress and was gradually taken off all the meds. I was sleeping great, getting plenty of
deep sleep and I was so happy, but that was not to last long.

8. So about 3 months ago, as my sleep was dramatically improving due to the great progress with CBT therapy, I began to have serious problems again with LPR at night, causing me to again seek treatment for sore throat, asthma and nasal congestion. My husband was also informing me that I had begun to choke in my sleep a LOT and it frightened him. One night, he left the bedroom because of it. e called it a strange combination of choking and snoring. It was really weird, the insomnia goes away and AGAIN I have what appears to be asthma and bad allergies. Right now, I am suffering from an acid burned throat and blaming it on the good sleep I am having. It is always either one or the other. So now, the abject misery from the sore throat is forcing me to make sure I do not sleep much. I am sleeping no more than 3 hours at a time, on huge pillows so that I am practically sitting up. Between this and raising both min and max pressure on my machine, the horrible throat burning during deep sleep has subsided and my throat is getting much better. I WANT MY INSOMNIA BACK!
9. Anyway, I think I now know what is happening here. I have the UARS problem of sucking up stomach acid during deep sleep by increasing esophageal pressure causing a suction event, whereby stomach contents ends up in my breathing apparatus. My limbic brain knows how dangerous it is for me to go into deep sleep and tries to protect me by not letting me sleep much and messing with my sleep cycle.
10. It is really amazing that the CBT even worked this time, it never did in the past. I think the reason is because my brain feels comforted by the presence of the CPAP, feels there is protection there.
11. SO now I am raising pressure again because the more I raise it, the less I experience the LPR symptoms and still get some better sleep. I am doing a little better at tolerating more pressure, but I figure I will probably need pressure of 10 to 11 before I can successfully treat my UARS. I am only at 7.8, running min. at 6.8. By the way thanks to Pugsy for suggesting bumping up min. pressure.
12. During the 5 days I experienced these really awful LPR symptoms, I checked my Sleepyhead data to find massive activity on my FL chart. Before these episodes, I had a large amount of huge spikes almost to the top of the frame. I also continue to see my pressure, capped at 7.8 plastered against the top limit almost all night, usually only 1 or 2 spikes down.
13. I can only raise pressure very slowly because of leaking issues with my mask so this process could take awhile. Until I can raise pressure at least 3 or 4 more points, I can consider my UARS NOT treated successfully.

I am only posting this in the hope someone can benefit from my experience with UARS. I can't say I have it beaten yet, but at least I am confident I know know what is happening.

[Cpapian]

I decided to revive this post because i believe there have been some changes in the thinking about UARS within the forum and the medical community. Please don't bother to read everything above this post because it will only confuse you. I can summarize the issues here:

1. I initially started CPAP therapy just 3 years ago to help me with my problematic symptoms of LPR that only seemed to be happening when I was in deep (REM) sleep. I never had a sleep test.
2. For the first year and a half, CPAP exacerbated greatly my life-long insomnia.
3. I suspected that OSA was a small part of my problem and that UARS was a big problem, but experts on this forum did not agree.
4. During the first year and a half, I was not at all bothered by nighttime LPR , but my insomnia was really bad to the point where I was not getting much deep sleep at all. I was happy with the relief from the LPR symptoms.
5. Although my Sleepyhead reports indicated a very low AHI, I found it disturbing that the FL's were always too high, the activity about 1/4 to 1/3 up the frame. Without nasal congestion.
6. I continues the whole time, up until now, to be compliant with CPAP because I felt it helped my breathing a little. Now I am so used to it that it is not contributing to my insomnia.
7. However, I continue to alternate between unexplained periods of NO LPR/BAD INSOMNIA OR INSOMNIA IMPROVEMENT/LPR. Recently, I have had periods of terrible episodes of LPR causing terrible sore throats, Asthma and congested nasal passages. But guess what, until this happened a few months ago, I was sleeping better than I ever had in my life. The reason for that was I had taken Robby Sue's advice about going for CBT insomnia therapy. I guess I could not argue that CBT therapy did not work for my insomnia without giving it a shot while I was using CPAP to reduce my irrational fear of sleeping.

Probably because I had had a lot of CBT therapy all my life, I was able to make great progress with it fast. My
therapist, a Psychiatrist, had kept me on a very low dose of Amitriptyline and Ambien (about 12mg and 1mg
respectively) at first. I started this last February, in 2017. I won't go into the details of the therapy, but just to
say I made fantastic progress and was gradually taken off all the meds. I was sleeping great, getting plenty of
deep sleep and I was so happy, but that was not to last long.

8. So about 3 months ago, as my sleep was dramatically improving due to the great progress with CBT therapy, I began to have serious problems again with LPR at night, causing me to again seek treatment for sore throat, asthma and nasal congestion. My husband was also informing me that I had begun to choke in my sleep a LOT and it frightened him. One night, he left the bedroom because of it. e called it a strange combination of choking and snoring. It was really weird, the insomnia goes away and AGAIN I have what appears to be asthma and bad allergies. Right now, I am suffering from an acid burned throat and blaming it on the good sleep I am having. It is always either one or the other. So now, the abject misery from the sore throat is forcing me to make sure I do not sleep much. I am sleeping no more than 3 hours at a time, on huge pillows so that I am practically sitting up. Between this and raising both min and max pressure on my machine, the horrible throat burning during deep sleep has subsided and my throat is getting much better. I WANT MY INSOMNIA BACK!
9. Anyway, I think I now know what is happening here. I have the UARS problem of sucking up stomach acid during deep sleep by increasing esophageal pressure causing a suction event, whereby stomach contents ends up in my breathing apparatus. My limbic brain knows how dangerous it is for me to go into deep sleep and tries to protect me by not letting me sleep much and messing with my sleep cycle.
10. It is really amazing that the CBT even worked this time, it never did in the past. I think the reason is because my brain feels comforted by the presence of the CPAP, feels there is protection there.
11. SO now I am raising pressure again because the more I raise it, the less I experience the LPR symptoms and still get some better sleep. I am doing a little better at tolerating more pressure, but I figure I will probably need pressure of 10 to 11 before I can successfully treat my UARS. I am only at 7.8, running min. at 6.8. By the way thanks to Pugsy for suggesting bumping up min. pressure.
12. During the 5 days I experienced these really awful LPR symptoms, I checked my Sleepyhead data to find massive activity on my FL chart. Before these episodes, I had a large amount of huge spikes almost to the top of the frame. I also continue to see my pressure, capped at 7.8 plastered against the top limit almost all night, usually only 1 or 2 spikes down.
13. I can only raise pressure very slowly because of leaking issues with my mask so this process could take awhile. Until I can raise pressure at least 3 or 4 more points, I can consider my UARS NOT treated successfully.

I am only posting this in the hope someone can benefit from my experience with UARS. I can't say I have it beaten yet, but at least I am confident I know know what is happening.

Congrats on getting CBT to work. It is just that ......work. so good for you.

I have GERD and would like to pass on a few things that worked for me. I am virtually symptom free now.

I was just in an urgent care centre and heard a doctor lecturing a patient there. No coffee, tea, smoking, alcohol, oil, fat, citrus fruits, orange juice and I think tomatoes.
My husband rejigged his recipies to eliminate oil and fat. Lots of veggies.
Digestive enzymes.

And the biggest one was when I started walki g on the treadmill daily. I took it slow to build up time and speed. Not only did it make me feel more energetic, help with digestion, but I lost a few pounds. What's not to like.

I hope these ideas can give you a little help to feeling better.

[PEF]

Thank-you, cpapian, for your input. YES, I am really happy that my CBT was finally effective for sleep. It is hard to stick to, but I am doing it.

Unfortunately I have been through this many times with the medical community. First I go to the ENT, the ENT tells me my throat is ok and I need to see the Gastroenterologist. So I go there, but after exams and trying special diets, I am told I don't appear to have any problems with my stomach. By this time, the symptoms are long gone until the next 6 months or a year when I get an episode of the same. Rinse and repeat.

From the recent research I have seen, GERD and LPR appear to be completely different disorders. I just read a big study done in England about LPR (Laryngopharyngeal reflux), also called silent reflux. Among the conclusions was that medications like PPI's used to treat GERD are no more effective against LPR than placebo. I know in my case, almost nothing that doctors say works for GERD actually works for my LPR. Many people will tell you to get the LPR treated before going on CPAP, but what if your sleep apnea is actually the cause of your LPR??

One thing I learned from several books I read is that people often have the idea of reflux flowing up through the relaxed UES or LES. The correct way to picture this is, in the case of GERD, a splashing against the sphincter and, in the case of LPR, a spraying against the sphincter. The sphincter can be working normally, but a minuscule drop of reflux may still get by just because of the force of the motion. Dr Steven Parks says the literature on UARS describes Sleep Disordered Breathing Events causing pressure to build up in the chest and esophagus, sufficient to suction stomach contents into the breathing apparatus. This, if true, sure feels like what happens to me in specific events during deep sleep. I can wake up several times during the night and not have any problems. Toward morning, when I get most of my deep sleep, I can suddenly wake up with a choking spell, sore throat, or stuffed nose. At other times, I can sleep through the night with no problems. I began CPAP 3 years ago because, after keeping detailed sleep logs for a period of a year, I discovered these events happened in clusters while I was in deep sleep, never when awake or in light sleep. Then after reading Dr. Park's book, I thought CPAP could help. And it has, but not quite enough. Raising the pressure always helps more, but when I get to pressures over 8, my tongue starts to fail and I mouth breathe and wake up from the leaks, forcing me to go back to less pressure.

I have been on and off, camping out on Dr. Parks blog. So many people write in reporting terrible problems with clusters of mysterious, often serious respiratory symptoms, along with poor sleep and insomnia, for which they have received massive amounts of medical help and respond to nothing. The medical community knows for sure that LPR and GERD are strongly correlated with sleep apnea, but beyond that, can't figure out why. I suspect they are looking in the wrong places and making incorrect assumptions. Of course, I always suggest CPAP because that is the only thing that has helped me at all, but I doubt anyone pays any attention.

[PEF]

This is what I wrote 2 years ago:

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.

THIS IS WHAT I THINK NOW:

1. XPAP therapy certainly did not help me much by only treating my OSA symptoms and not treating my UARS symptoms. My Sleepyhead reports always looked good, low AHI - but this only applied to OSA which was never very serious for me. The constant awakenings caused by uncontrolled UARS symptoms are just as bad as being constantly awakened by OSA problems such as the need to awaken after cessation of breathing. The sore throat caused by LPR (driven by uncontrolled UARS) episodes caused me to awaken because of the need to swallow to push reflux down. The choking episodes caused by the same thing caused me to awaken because of the need to cough the reflux out. The stuffed nose caused by the same thing caused me to awaken by the urgent need to open my mouth to breathe. Then the open mouth causes massive mask leaking and dry mouth. I have awakened at times in a panic in the middle of the night, out of really deep sleep, with such a dry mouth that I cannot catch my breath. My husband has had to turn me over and shake me because I am choking and cannot come fully awake. These events are terrifying. I sincerely believe that:

1. Sleepyhead was designed only for people with OSA, not for UARS.
2. My uncontrolled UARS symptoms are causing constant wake-ups (at times) that makes me feel like crap, tired all the time, and afraid to fall asleep the following night.
3.My insomnia is caused primarily by my subconscious FEAR of these events. Often, when in bad bouts of insomnia, I can only fall asleep when I become so exhausted that I no longer care.
4. I strongly believe UARS can be successfully treated by XPAP therapy, but often higher pressures are required.
5. I also believe that, if the fear of sleep can be successfully mitigated by psychological training through CBT/Psychotherapy, etc., then the need for more pressure to "fight the brain" may be greatly reduced. But this can only happen if the CPAP therapy is successful in treating the UARS symptoms FIRST, so the individual can feel confident that their machine will protect them from constant awakenings and scary episodes. Since I am having these awakenings because of uncontrolled UARS events, the CPAP therapy must come before psychological training aimed at mitigating the sleep phobia. In other words, in UARS the brain is very active and often over-reacts to things like flow limitation. The brain's over-reaction causes a build up of pressure in the chest and therefore the esophagus. This, in turn, causes events like reflux from the stomach to end up in the breathing apparatus, causing constant awakenings. So the brain needs to calm down, but certainly will not calm down as long as these events continue to happen.
6. I believe my CPAP therapy must successfully treat my UARS before I can be completely successful in curing my insomnia. I was doing so well with my CBT therapy for insomnia until I was confronted by my untreated UARS symptoms reminding me why I have been afraid to sleep all my life.

[PEF]

Oh and if it wasn't clear, all this awful stuff is happening while I am completely CPAP compliant. Imagine having a terrible night, waking up with your chest hurting, headache, uncomfortable respiratory symptoms, exhausted, with your mask on the whole night and Sleepyhead telling you how wonderfully low your AHI was and what a great night you had.