Replies to This Discussion

Permalink Reply by Mary Z on February 5, 2010 at 8:10am

I have had something similar, but not exactly as you describe. I wake up quickly with a feeling of falling. I wake up with adrenaline pumping, after all I'm falling, and usually find myself sitting up. I do "gasp" when this happens as it's scary. This is usually, but not always when I'm just falling asleep.
Wikipedia describes what I think is happening to me "A hypnic jerk, hypnagogic jerk, sleep start, or night start is an involuntary myoclonic twitch which occurs during hypnagogia, just as the subject is beginning to fall asleep. Physically, hypnic jerks resemble the "jump" made when a person is startled,[1] often accompanied by a falling sensation.[2] It is commonly caused by irregular sleep schedules.". My sleep cycles are not irregular.
Good luck, Heather, hope you get some good answers.

Mary Z.

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Permalink Reply by 99 on February 5, 2010 at 12:23pm

it may have nothing to do directly with sleep apnea but cpap will help
in may be in the sleep apnea family of diseases

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Permalink Reply by RockRpsgt on February 5, 2010 at 5:47pm

How long have you been on therapy? As jnk states apnea or any other health problem puts our brain on alert even when we may not noticed anything. Sometimes it may take time for our brains to believe that the threat level is gone. Studies have shown that it can take up to 6 months for our brain to BEGIN to let it's guard down.

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Permalink Reply by Heather on February 5, 2010 at 5:52pm

Thank you Mary Z, Ink, and 99 for taking the time to give me your thoughts. I love that I can hear other people's experiences within hours of posting.

The good news is it doesn't happen every night, I am delighted to be a successful CPAP user, averaging 6-7 hours a night, AND my AHI is less than 1. And these "events," the squirting of the "panic juice" (!), have definitely decreased since before I got my CPAP, nearly two years ago. My overnight sleep study was the worst I ever felt with these events and I had been experiencing them for 5 or 6 years. They are, in fact, what convinced me to get the sleep study (along with a recording my husband made of my labored breathing).

What's confusing is that if I feel the panic juice 5 or 6 times over a two hour period before finally falling asleep, wouldn't that show up on my AHI reading on my machine? Or maybe I have no other apneas the rest of the night so the average is still less than one...hmm...

Here's a question: Why do I only feel these when I am falling asleep? Are there more apneas during sleep stage one? I'll have to dig out my sleep study and look. And worse, is my body doing this all night and I just don't feel it because I am in a deeper sleep? But if it was, wouldn't I be getting higher AHI numbers? How accurate is the machine's ability to sense hypopneas which I have more of? I have a RemStar Auto AFlex M series by Respironics. My 90% pressure average is 9.8%

My sleep schedule is regular too, MaryZ.

Thanks again.

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Permalink Reply by RockRpsgt on February 5, 2010 at 6:04pm

Do you have any realistic dreams during these odd events? Have you ever experienced any type of sleep paralysis or something that may feel like an out of body experience?

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Permalink Reply by Heather on February 5, 2010 at 6:37pm

Rock: I have been using the CPAP for almost two years, although the first year was quite difficult because of the mask hurting (nasal pillows), swallowing of air and having to burp every few minutes, learning to sleep on my back without moving, rainout during the winter months, leaking, etc.

Now that I have an Activa mask, an insulated hose, and the auto pap those things are much better, but I still have this "panic juice" problem, resulting in 1-4 nights a week of not being able to fall asleep for two hours.

I just read something about UARS and it got me thinking. Might I have that? I am not overweight, have low blood pressure and Dr. Guilleminault, who was my first doc at Stanford, said I had a deviated septum and a very narrow airway. But he's the expert, so wouldn't he have diagnosed UARS if that is what I have?

Does anyone know how UARS is diagnosed from a sleep study? What observations would yield a UARS diagnosis instead of OSA? Is treatment different?




Rock Hinkle said:

How long have you been on therapy? As jnk states apnea or any other health problem puts our brain on alert even when we may not noticed anything. Sometimes it may take time for our brains to believe that the threat level is gone. Studies have shown that it can take up to 6 months for our brain to BEGIN to let it's guard down.

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Permalink Reply by Heather on February 5, 2010 at 6:40pm

Honestly I can't remember if I dream during these events. I don't think so. I do, however, have vivid dreams the rest of the night, especially between 4 and 7 am. Weird, sometimes scary, usually playing out some theme of frustration in my life. Don't think I have experienced sleep paralysis...not sure what it feels like.


Rock Hinkle said:

Do you have any realistic dreams during these odd events? Have you ever experienced any type of sleep paralysis or something that may feel like an out of body experience?

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Permalink Reply by RockRpsgt on February 5, 2010 at 6:50pm

You would know sleep paralysis if you had experienced it. I also do not think that Dr. Guillieminault would have missed a Dx of UARS. I would definately have to give him the benefit of the doubt on this one.

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Permalink Reply by Heather on February 5, 2010 at 7:25pm

Thanks, I am grateful for the nights that I sleep well. I guess I haven't fully accepted that I have a life-long physical handicap and I keep wishing it would just go away. I feel too young to have to deal with all this. I was hoping to be a fully-contributing member of society as my kids grow up and leave home!



j n k said:

Treatment for UARS is often basically the same as for OSA. In fact, not every doc draws the line between the two conditions in the same place.

But the human body is complicated. All of the things mentioned in this thread can interrelate and play off one another. So the fact that a doc won't say what it is may be just understandable humility and modesty of the doc.

Sleep is mysterious and not well understood on some levels. The hormone system is complicated. Sleep apnea and UARS are still not as well understood as hopefully they will be one day.

So, it could be that in the time when you are transitioning into sleep that you are having some pauses in your breathing, which is natural. But it may be that your body is mistaking that natural transition as something more serious and is reacting hormonally. That hormonal reaction can cause other hormonal reactions related to sex hormones. All of that can cause a bit of a mini-anxiety-attack during sleep. Any drugs at all during the day, even a cup of coffee or a few sips of wine, can interact with all of that. Emotional stresses from the day can play a role too.

If they are happening less frequently, that may be an indication you are headed in the right direction. I know I REALLY hate that vibrating feeling, myself.

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Permalink Reply by Heather on February 5, 2010 at 8:30pm

Not irritating at all! It is so nice of you to take the time to write. And encouragement like you just gave is what got me to try 4-5 masks last year until I found the Activa. You are so right, I just have to keep tweaking! I just get a little down when I've spent SO MUCH time working on this issue and want to move on! But I know if I don't sleep well, the rest of my life is bad, bad.

I know how to increase the pressure range on my CPAP, so maybe I'll try that. If it is 8-12 now, should I increase the base to 9? Again, my average is 9.8. Or I could make a doc appointment and have them do it, although I'd rather try it myself first.



j n k said:

You may need to do some experimenting with pressure (as in more of it) and may need to give it a little more time. If you aren't feeling as you should, and you run out of things to try on your own, you may need to be more vocal with your primary doc and sleep doc to see what else you might need to try in the way of different kinds of machines or other.

Don't resign yourself to anything. Keep trying things. Well-treated OSA is something that only involves a machine at night. Maybe not a fun thing, but no biggie, really, either. So you need to be sure you are being well-treated and try things, like making dinner time earlier and not eating past a certain hour, or rigging something up for staying off your back, or trying a different mask, or, well, anything at all to change your approach. If your sleep hygiene is good in all respects, you may need to speak to a sleep specialist that specializes in changing how you THINK about things. But there are many, many things to try, so try to make a bit of a game out of it to solve the mystery of what you can do to improve your sleep.

If any of the above is irritating to read, feel free to ignore it. I'm just throwing around ideas.

jeff

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Permalink Reply by Heather on February 6, 2010 at 4:22pm

I like your reasoning and agree with the logic. My original prescription was a straight pressure of 10, so maybe that's a good place to go back to and see what happens. I remember we changed to the auto because of the air gulping issue, but maybe my body has adjusted to the pressure and it won't be as much of an issue.

Thanks again for your taknig the time to help. I really appreciate it.


j n k said:

Everyone has to make his or her own call on whether to change his or her own pressures. I generally recommend keeping a sleep doc in the loop, especially if someone is the least bit hesitant or unsure. My sleep doc doesn't mind at all if I change my pressures, but he knows my situation and condition, which may be very different from yours.

If it was me and my doc was OK with me running a range of 8-12 and I was frustrated with my results and my 90% pressure on my ResMed auto was close to ten, I have got to say that my choice for myself would be at least to go ahead and put my base pressure up to ten, just to see if that improved how I felt.

My reasoning is that if my doc doesn't mind the pressure hitting the 12 cm mark, he obviously doesn't mind if I keep it from going below 10. But that is just how my mind works. Others might make a different choice.

I might also say that if I had trouble getting to sleep or had trouble waking up during the night, I might limit my pressure so that no automatic titration, or movement of pressures, was taking place at all, since some light sleepers feel better with straight pressure rather than varying pressure.

To my way of thinking, any doc that doesn't mind it if my machine chooses my pressure shouldn't mind it if I choose my own pressure within the range he trusts the machine with.

All that is to say that if I found myself in your shoes right now, I would likely put my machine in CPAP mode at a straight pressure of 10 cm for a week or so to see how that felt instead of the auto mode 8-12.

Again, though, I'm just a patient, and this is the Internet, so my views have to be filed under "one opinion from one non-medical guy on the Internet"! :-)

jeff

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Permalink Reply by Heather on September 21, 2010 at 11:47am

Jeff and all SleepGuide folks:

It is now September 2010 and I just wanted to thank you again for taking the time to help me think through my issues. I am happy to report the "vibrating" has almost gone away, in large part, I think, due to thinking about all the comments to my post, and starting HRT (hormone replacement therapy) again. I started taking a small amount of Estradiol to see if that would help, and within two weeks the events were nearly gone. So YES, hormones do play a BIG part!

I also went to an ENT (ear nose throat) doc because my throat frequently felt "thick" like it was swollen. He felt I had LPR (larynogopharyngeal reflux, acid reflux that goes all the way up the esophagus into the throat area) and I am trying to make many diet and lifestyle changes (no food three hours before bed, no caffeine, mint, citrus, alcohol, eat small meals, don't lie down after eating, meditate, yoga!) and YES, this has helped as well.

I am also trying hard to eat more vegatables and less meat and carbos, and eat less overall. I have realized we humans need a lot less food than we currently stuff in our mouths!

So...making these changes is hard (I miss my glass of cabernet and I have a terrible timing skipping a bedtime snack), but when I do, I feel better. So it is worth it!

Hope you are doing well,

Heather

j n k said:

You may need to do some experimenting with pressure (as in more of it) and may need to give it a little more time. If you aren't feeling as you should, and you run out of things to try on your own, you may need to be more vocal with your primary doc and sleep doc to see what else you might need to try in the way of different kinds of machines or other.

Don't resign yourself to anything. Keep trying things. Well-treated OSA is something that only involves a machine at night. Maybe not a fun thing, but no biggie, really, either. So you need to be sure you are being well-treated and try things, like making dinner time earlier and not eating past a certain hour, or rigging something up for staying off your back, or trying a different mask, or, well, anything at all to change your approach. If your sleep hygiene is good in all respects, you may need to speak to a sleep specialist that specializes in changing how you THINK about things. But there are many, many things to try, so try to make a bit of a game out of it to solve the mystery of what you can do to improve your sleep.

If any of the above is irritating to read, feel free to ignore it. I'm just throwing around ideas.

jeff

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