Spontaneous arousal

[1041]

I have "spontaneous arousal syndrome" or, something messing up my sleep that is not simple OSA.

People have suggested the following causes and solutions:

-UARS: BiPAP
-GERD: raise bed, change diet
-nasal congestion: medication, surgery
-chronic pain: medication
-side effects of medications: stop taking them
-RLS/PLMD: medication

But I've only found one thread where someone actually comes back and says, Yes, this was the cause and treating it enabled me to sleep deeply again. (loonlvr)

Does anyone know of other success stories?

[Julie]

Have you asked a doctor about it? Why are you guessing at everything?

[1041]

CPAP fixes my sleep apnea but (as my titration report shows) I still have ~55 spontaneous arousals a night as well as no Stage 3 sleep. On CPAP, I still wake up 4-6 times during the night and cannot function during the day I'm so fatigued.

[1041]

Have you asked a doctor about it? Why are you guessing at everything?

My sleep doctor couldn't explain the residual arousals or the lack of Stage 3 sleep.

[brucifer]

Have you asked a doctor about it? Why are you guessing at everything?

Julie, in case you've forgotten, the main purpose of this forum is to ask questions. Furthermore, doctors don't always have all the answers. It would be nice if they did, but they don't. Shared experiences from experienced OSA patients are excellent resources for new OSA patients. Exchanging patient information is one of the ways that we learn. I've learned a lot more from members on this forum about OSA and OSA treatment than from my pulmonologist who is also a specialist in Sleep Medicine. My doctor has plenty of knowledge, but she doesn't have the EXPERIENCE of OSA patients who live with the condition. That experience is very valuable for new OSA patients. In this day and age of big pharma and cover-your-butt medicine (at least here in the U.S.), doctors are not always forthcoming with honest and informative answers.

Also, I'm sure you guess all the time when making decisions. For example, if you have a stuffy nose, you may wonder if it's caused from an allergy, a cold, a sinus infection, or perhaps something else. You don't necessarily first run to the doctor to treat that. You first try to figure out (guess) what is the cause WITHOUT the help of your doctor. That is all that 1041 is trying to do here. Please cut him/her some slack. Thanks.

[Pugsy]

I am one of those people that pain caused the arousals after cpap adequately treated the OSA part of my sleep problems. Even with OSA well controlled I was having 20 to 30 awakenings each night due to pain...turn over in bed it hurts...lay in one position too long it hurts. So we worked on doing what we could to reduce the pain (better bed) and added pain meds at night to help me "sleep through" the pain more so that at least I didn't wake up a gazillion times a night. It isn't perfect but it is a whole lot better than it was. Last night I only remember one awakening. For me that is pretty good.

Meds also messed with my sleep architecture...my daytime pain meds do a great job but despite the "may cause drowsiness" sticker...I happen to be one of the minority that it actually causes insomnia. That's why we had to go a different route for pain meds for bedtime.

No real history with any of the other possible culprits for awakenings. I do use a bilevel machine now but I stumbled onto it and it also added a level of better sleep that we really don't know why it works. All I know is I feel more rested with using it and it makes no logical sense but I don't care.

[kteaguenotloggedin]

...People have suggested the following causes and solutions:
-UARS: BiPAP
-GERD: raise bed, change diet
-nasal congestion: medication, surgery
-chronic pain: medication
-side effects of medications: stop taking them
-RLS/PLMD: medication
But I've only found one thread where someone actually comes back and says, Yes, this was the cause and treating it enabled me to sleep deeply again. (loonlvr)
Does anyone know of other success stories?

Which, if any, of the above have you already ruled out as being your cause? I would think most of the suggestions were made because someone had dealt with that and had at least a degree of success. No matter how much success others may have though, you won't unless their issue is your issue. As for RLS/PLMD, I have achieved a significant degree of success by using a TENS Unit, but for the person without limb movement issues, it would be a waste of time, money, and effort. My degree of success on meds was limited and temporary, but was at least a start in the right direction. The meds for limb movements are no casual matter, and not something one should try "just in case". If it were me, I'd want to pin down the most likely causes and target my efforts. Knowing yourself as only you can, which of the above seems something you feel most likely (or at least possibly) needs your attention?

[ems]

Have you asked a doctor about it? Why are you guessing at everything?

Julie, in case you've forgotten, the main purpose of this forum is to ask questions. Please cut him/her some slack. Thanks.

I agree, Brucifer... nicely said!

OP... I think you have to get to the bottom of this one way or the other. There is a reason you are waking so often and if working this out with your current doctor isn't happening, you may have to seek out the opinion of another. I say this because I wake with head and neck pain almost everyday. If my current sleep specialist doesn't have any input I feel is valuable, I already have the name of another doctor I will be going to.

Asking here may or may not help. It depends on if someone has/had a similar problem. I hope someone chimes in who can answer your questions.

Best of luck in getting this situation worked out so that sleeping comes easier.

[Pugsy]

But I've only found one thread where someone actually comes back and says, Yes, this was the cause and treating it enabled me to sleep deeply again. (loonlvr)

Does anyone know of other success stories?

As per above I got the impression that the OP was really wanting to hear success stories from people who have had one or more of the various issues he listed above...not so much that we were advocating that he try such and such...more like "well, we did have this and I did that and it helped"

[kaiasgram]

CPAP fixes my sleep apnea but (as my titration report shows) I still have ~55 spontaneous arousals a night as well as no Stage 3 sleep. On CPAP, I still wake up 4-6 times during the night and cannot function during the day I'm so fatigued.

1041, I don't have a success story for you -- wish I did -- but your titration report really jumps out at me. 55 spontaneous arousals is a lot, and no Stage 3 sleep? And your sleep doc considered you titrated at that point? Granted arousals could be caused by any of the things you listed in your original post, many of them not directly sleep-related. But were you evaluated/titrated for RERAs? According to a sleep tech I spoke with, not all sleep labs titrate for RERAs, they stop titrating once apneas and hypopneas are under control. Apparently you have to keep titrating to cover the RERAs (which I assume means going to higher pressures?). Even if your arousals are caused by something not directly sleep related, it's hard to believe your sleep doc would send you off with 55 arousals and no stage 3 sleep. I hope you'll keep us posted, and as Brucifer said, the purpose of this forum is for people to ask questions, brainstorm, and generally help each other out with cpap therapy. Keep asking and if you have to, keep guessing. We'll ask and guess along with you.

[Jay Aitchsee]

Everything you wanted to know about sleep arousals:
http://www.sciencesleep.org/ziliao/The% ... 0sleep.pdf

1041, I understand your question, but I think you are unlikely to find the answer here. My guess is once most people solve their sleep problems, they move on and are unlikely visitors to the forum.
I think you now have a great bit of detective work to do to discover why your are not obtaining restorative sleep. And it may be more than simple arousals. You mentioned waking 4 or 5 times a night - that may not be abnormal and may not be the cause of your fatigue.
For example, something like depression could cause fatigue and lead a person to think it was from fragmented sleep. All of the things you mentioned in your opening post are possible. You have to rule them out one at a time.
Solving the OSA part of the puzzle is the easy part, but once that has been accomplished it becomes increasingly difficult to discover the remaining obstacles to restorative sleep.
In my case, I found a Zeo bedside unit helpful to be able to measure the effects of therapy (medications). In searching for the cause of my own fragmented and lack of deep sleep, I found I was Vitamin D3 and B12 deficient and bringing those into normal range Has increased by deep sleep from less than 10 minutes to around 30 (as measured by the Zeo). Now, this has not eliminated my daytime fatigue, but it has improved and my search continues.
I have tried most of the meds for PLMD (diagnosed) with no luck. I am beginning to think that years of untreated apnea coupled with alcohol abuse has caused me to unlearn restorative sleep. I have found a little support for this in the literature, but no treatment.
My advice would be to find a good Sleep Doctor. Probably not a pulmonologist maybe a neurologist. Practice good sleep hygiene, have a complete mental and physical workup, fix anything you find wrong and continue the search.
Good luck to you.
Jay

[brucifer]

Jay, I agree that most patients leave forums such as this once when they get settled into xPAP therapy and have their respective questions answered to their satisfaction. However, there are many patients who stick around long afterward to help newbies along. Pugsy and Robysue are both excellent examples of such members. They patienty (sometimes patiently ) field the same questions from newbies that they have handled again and again and again, but they also field deeper questions that have been addressed long ago. They are repositories of xPAP-related information. Also, there are newbies here who have dealt with complex fatigue- or sleep-related issues. They can also add to discussions with their annecdotal experiences. Maybe 1041 won't find his/her answers here, but maybe so. Regardless, the discussion is helpful for others to read who may be having similar medical issues.

[Jay Aitchsee]

I agree, Brucifer, and didn't mean he shouldn't ask. 1041 might not find "the answer", but maybe some good clues.
Jay

[deltadave]

I still have ~55 spontaneous arousals a night...

WNL.

http://www.journalsleep.org/articles/210404.pdf

[kerriberri]

I have "spontaneous arousal syndrome" or, something messing up my sleep that is not simple OSA.

People have suggested the following causes and solutions:

-UARS: BiPAP
-GERD: raise bed, change diet
-nasal congestion: medication, surgery
-chronic pain: medication
-side effects of medications: stop taking them
-RLS/PLMD: medication

But I've only found one thread where someone actually comes back and says, Yes, this was the cause and treating it enabled me to sleep deeply again. (loonlvr)

Does anyone know of other success stories?

Sorry you're having a hard time. I don't know if this will help you or not, but several years ago (before hubby was officially diagnosed with sleep apnea), my husband was having a terrible time with daytime fatigue/exhaustion, restless sleep, leg cramps, and just a general lack of energy.

I did some research & found this book, The Magnesium Factor (here's a link to it at Amazon): http://www.amazon.com/The-Magnesium-Fac ... ium+factor

You can actually learn much of what's in the book, simply by reading through the reviews at Amazon.

My husband started taking magnesium & it helped him TREMENDOUSLY. That particular book explains in great detail how to gauge the proper dosage & why many Americans need to supplement with this mineral.

I started it, too, and I (not an apneac) sleep like a baby. The right dose for me is about 750 mg of chelated magnesium, taken at bedtime.

I've also heard of people who have something like restless leg syndrome using a combination of magnesium and Vitamin B6. Google can teach you a LOT (once you have an idea of what terms to search on).

Good luck; hope this helps! [one more thought: it's vitally important to educate yourself about any supplement before taking it. Check for any possible interactions with current medications first.] I can say that magnesium worked wonders for husband's leg cramps & sleep.