started my cpap 4 yrs ago I have horiffic dreams every 6 mo

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tommat
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started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by tommat » Mon Feb 08, 2016 8:09 pm

I started using my cpap machine about 4 yrs ago. For the first time in my life (I am 52 now) I have terrifying horrific dreams about every 6 mo. My wife says I will start to shake all over (like a seizure) and then stiffen up. In my mind I remember having the same dream whenever this happens. She says my eye are wide open when these happen but i don't appear to be there. The dreams are terrifying, someone is after me to hurt me. At the beginning of my dreams the same music plays in my mind in my dream.....when I finally come back from incoherence I am scared and my whole body feels like it is recovering from a major cramp. Has anyone else experienced anything like this...I am really concerned there is a problem......

Thanks.
Tom

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Julie
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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by Julie » Mon Feb 08, 2016 8:14 pm

Hi, it sounds to me like you're having some kind of seizures, not necessarily related to Cpap or OSA, but you absolutely must see a neurologist because that is the doctor who could best understand what's going on and know what tests, etc. to do, as well as potential meds. See how quickly you can get a referral.

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by BlackSpinner » Mon Feb 08, 2016 8:21 pm

If you have a machine that tracks efficacy data, then have a look at your data for that time frame.
There is free software available - see the first thread "Pusgy's pointers and tutorials"

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by palerider » Mon Feb 08, 2016 8:33 pm

I second Julie's recommendation, I'd be surprised if there's any connection to cpap.

blackspinner makes a good point that it's always good to know how your treatment is working, by checking the data.

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by chunkyfrog » Mon Feb 08, 2016 8:39 pm

Have you seen a doctor about this?
This sounds like something unrelated to cpap, but still something that may require attention.

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by WearyOne » Mon Feb 08, 2016 8:54 pm

Is your sleep doctor also a neurologist by chance? My sleep doctor is the head of the neurology department at a local large medical center. And I also see a neurologist for something totally unrelated to sleep who is board certified in both neurology and sleep medicine. I think it would be great if you could see a neurologist who is also certified in sleep medicine if you can. From what you describe, I agree that you really should see a physician about this.

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by zoocrewphoto » Tue Feb 09, 2016 5:36 am

I would combine the first two advice., Defnitely see a neurologist. But! If you have a full data machine, print out the reports from any of the times you have had it. While it may not be cpap related, it would show your breathing rates, and may give an indication of how long the event happened. There might be other clues too. Any info you can provide to the doctor may be helpful. You might also keep a phone or camera with video near the bed so that if it happens again, your wife can capture some video which would also show the doctor what is happening.

The dream does sound like my dreams when I have an event, though no music for me. I believe my dreams are my brain's way of explaining the lack of oxygen and distress. But there are other possible causes of distress, and what your wife describes does sound very different from an apnea event.

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by GettingBetter » Tue Feb 09, 2016 5:53 am

tommat wrote:I started using my cpap machine about 4 yrs ago. For the first time in my life (I am 52 now) I have terrifying horrific dreams about every 6 mo. My wife says I will start to shake all over (like a seizure) and then stiffen up. In my mind I remember having the same dream whenever this happens. She says my eye are wide open when these happen but i don't appear to be there. The dreams are terrifying, someone is after me to hurt me. At the beginning of my dreams the same music plays in my mind in my dream.....when I finally come back from incoherence I am scared and my whole body feels like it is recovering from a major cramp. Has anyone else experienced anything like this...I am really concerned there is a problem......

Thanks.
Tom
Hey TomMat,

This seems terrifying as you described it. I think your concerns certainly warrant a trip to your GP and probably a specialist, if only to rule out some ominous causes for these events. You deserve some peace of mind and I can't offer anything other than get to a doctor. You might write down when these events have occurred, any drug or alcohol consumed prior to or on a daily basis as well as any other events of concern.

There is always hope and I am very hopeful that with the right diagnosis, you can rest easy.

Kind regards,
GB

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by kteague » Tue Feb 09, 2016 6:29 pm

Nothing new to add, just want co-sign on a couple points and encourage you to have your data during the time frame examined as a ruling out point. The more information you have to compare the less speculating there will be (and time lost). I'm guessing some of the breathing graphs will be useful in the doctor's analysis. With you having these episodes so far apart it may be hard for it to be captured in testing, but there may be subtle signs even in the absence of a full fledged episode. Sure hope you let us know what you find out. I'm probably not the only one who is curious. Best wishes.

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by GettingBetter » Tue Feb 09, 2016 8:00 pm

kteague wrote:Nothing new to add, just want co-sign on a couple points and encourage you to have your data during the time frame examined as a ruling out point. The more information you have to compare the less speculating there will be (and time lost). I'm guessing some of the breathing graphs will be useful in the doctor's analysis. With you having these episodes so far apart it may be hard for it to be captured in testing, but there may be subtle signs even in the absence of a full fledged episode. Sure hope you let us know what you find out. I'm probably not the only one who is curious. Best wishes.
If you are going to include your data, be sure to have your DME provide that to your doctor or use the data maintenance for your equipment. We are all a little spoiled when it comes to SleepyHead, but heed the disclaimer:
Disclaimer
This software comes with absolutely no warranty, either express of implied. It comes with no guarantee of fitness for any particular purpose. No guarantees are made regarding the accuracy of any data this program displays.

This is NOT medical software, it is merely a research tool that provides a visual interpretation of data recorded by supported devices. This software is NOT suitable for medical diagnostics purposes, neither is it fit for CPAP complaince reporting purposes, or ANY other medical use for that matter.

The author and anyone associated with him accepts NO responsibilty for damages, issues or non-issues resulting from the use or mis-use of this software.

Use this software entirely at your own risk.

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by zoocrewphoto » Tue Feb 09, 2016 9:04 pm

It wouldn't be that hard to use sleepyhead AND ResScan or Encore, depending on what machine the person uses. I would not depend on a DME to send the info. They would likely charge a fee and then fail to send the info, so the doctor has nothing useful at the appointment. Never count on the DME. The only data they consider important anyway is the compliance data. They aren't going to waste their time printing out zoomed in graphs of a particular night.

That, and many of us do not even use a DME. I fired mine back in May of 2012.

When I had my mom use my machine to gather data on two partial nights (one at her pressure of 10, and one at 10-13 to see what it wanted to do), I printed the graphs using ResScan before I used the machine later that night. We went to the sleep doctor with the printed reports from my Resmed S9 autoset, and the doctor used those reports and a 2 year old sleep study to prescribe a new machine and auto range that really helped my mom. It helped that this doctor prescribes auto machines with data so that he can actually look at the data. He was quite happy to use the data from my machine.

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by GettingBetter » Tue Feb 09, 2016 9:40 pm

zoocrewphoto wrote:It wouldn't be that hard to use sleepyhead AND ResScan or Encore, depending on what machine the person uses. I would not depend on a DME to send the info. They would likely charge a fee and then fail to send the info, so the doctor has nothing useful at the appointment. Never count on the DME. The only data they consider important anyway is the compliance data. They aren't going to waste their time printing out zoomed in graphs of a particular night.

That, and many of us do not even use a DME. I fired mine back in May of 2012.

When I had my mom use my machine to gather data on two partial nights (one at her pressure of 10, and one at 10-13 to see what it wanted to do), I printed the graphs using ResScan before I used the machine later that night. We went to the sleep doctor with the printed reports from my Resmed S9 autoset, and the doctor used those reports and a 2 year old sleep study to prescribe a new machine and auto range that really helped my mom. It helped that this doctor prescribes auto machines with data so that he can actually look at the data. He was quite happy to use the data from my machine.
Hi Zoo.

I think it is great how you helped your mom. You did the right thing and it turned out well.

This is about TomMat, he's a 52 year old male with horrific dreams occurring every 6 months. He has frightening seizures that are most likely not related to CPAP. He needs more than a prescription here. This isn't about how much pressure is being used.

For Diagnostic purposes, I copy and pasted the disclaimer from Sleepyhead because it is pretty clear: "This is NOT medical software, it is merely a research tool that provides a visual interpretation of data recorded by supported devices. This software is NOT suitable for medical diagnostics purposes, neither is it fit for CPAP compliance reporting purposes, or ANY other medical use for that matter." Not my opinion or anything against how helpful I think the software has been to me or anyone else - just the disclaimer - ok? I assume you've seen it and made your choices as well.

My DME is very good at sending data, that I upload, to my doctor, at no charge. It simply isn't a problem. I keep a good relationship with him, Hi Larry, and have even mentioned this site. I can't promise that is the case with everyone, because some personalities might clash or just not get along and so the DME might not be so hospitable.

Kind regards and snooze happy,
GB

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Re: started my cpap 4 yrs ago I have horiffic dreams every 6 mo

Post by zoocrewphoto » Tue Feb 09, 2016 9:53 pm

I am aware of the subject. I was responding to the comment that the data from the machine should be sent from the DME to the doctor. There is NO reason for that. That leaves a high chance of the data actually needed never getting to the doctor. And by my example, the doctor had no problem with ME bringing in printed reports of the data.

That is what I was suggesting. The doctor should see the data from the nights with these scary events. The data could be useful, but only if the useful graphs are there with enough detail. Counting on the DME to provide the data is not a good idea. Most of us have dealt with bad DMEs. We have learned not to trust them for anything important. This guy's problem is very serious, and he doesn't need to waste time and money trying to get a DME to provide detailed data when they don't care.

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