Unknown Sleep Disorder

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
GRB
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Unknown Sleep Disorder

Post by GRB » Mon Feb 06, 2023 10:18 am

Hello,

My name is Marshall, I live with my wife Gladys in Oregon. Gladys is 83 years old and has been having very concerning issues with suddenly fainting (sleeping) while active, and doctors here cannot find any explanation for this condition. She has never had sudden fainting (sleeping) until now. These fainting episodes started January 18, 2023.

My wife and I are volunteers in a 3rd grade elementary school, and on Wednesday the 18th I went to get her coat and she told me she wasn't feeling well, I told her to sit in chair and then she fainted. I called 911 and they checked her vital signs and placed her in the gurney. Approximately an hour later she woke up on the gurney on the front porch, crying, and asking for me. She was taken to Providence Hospital in Medford. At the hospital they did lab work, X-rays, MRI, EEG, and a root cause could be found. Gladys had two more episodes while she had the EEG monitor, she was wired up, and the results showed normal brain activity during these events. Gladys also had a fainting episode after the EEG was removed, this episode was different because her whole body began to shake, like she was having a seizure. She was released from the hospital on January 22 with no idea what was causing her fainting. She was prescribed Modafinil 100 mg which seem to help for a couple of days, but then she went back to having a funny feeling prior to fainting at different times of the day again.

The 2nd of February was a really bad day. We were going to try and go to school, and she got into the car and started having that funny feeling again and fainted. I sat with her in the car for over 1 1/2 hours until I was able to give her pill, and by 10am I was able to get her into her bed, she didn't feel any better until later that afternoon. I called her primary doctor, and they gave her an appointment for February 3rd at 10am. While driving to the doctor’s office, and close by she got that funny feeling again. We got through the entrance door at which time she fainted. They called 911 and she went back to Providence ER. Again, they did lab work, X-rays, CT Scans, and still nothing could be found, except a UTI infection which she is taking medicine for. She was released from the hospital 1 1/2 hours later and is back home; she is still feeling sick.

I am at my wits end with no doctor understanding what going on with her, or able to explain why this is happening suddenly. We can't go anywhere with her condition hanging over our head. She’s upset because she wants her life back, and be able to help her kids at school, and be able to go to church on Sunday. Would you have any ideas what could be causing this condition? Can you give us some advice or guidance on what we can possibly do? To me it seems to be Microsleep, but in extreme form. Gladys does have Sleep Apnea, it was left untreated for several years, but has since been using a CPAP nightly. We would greatly appreciate any information you might have on conditions like this, or know of some resource, someone, centers, etc., that might be able to help us. If a phone call is helpful, we are available anytime to discuss in further detail the symptoms she has been experiencing.

Thank you so much,

Marshall
Last edited by GRB on Tue Feb 07, 2023 9:39 am, edited 1 time in total.

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chunkyfrog
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Re: Unknown Sleep Disorder

Post by chunkyfrog » Mon Feb 06, 2023 10:51 am

Get a referral to a cardiologist.
This sounds like a circulatory problem--maybe electrical.

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Julie
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Re: Unknown Sleep Disorder

Post by Julie » Mon Feb 06, 2023 11:09 am

And a neurologist (but not a recent grad doing ER rounds).

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lazarus
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Re: Unknown Sleep Disorder

Post by lazarus » Mon Feb 06, 2023 11:35 am

Doesn't sound to me much like microsleep.
Researchers generally define microsleep as sleep episodes that last for 15 seconds or less.
https://www.sleepfoundation.org/how-sle ... microsleep
Sounds more like fainting or seizure activity.
The differential diagnosis for a syncopal spell should always include a seizure disorder. Symptoms such as a preceding aura, tongue biting, and tonic-clonic movements or incontinence increase the likelihood of seizure activity being a factor.
https://bcmj.org/articles/syncope-older-adults
Last edited by lazarus on Mon Feb 06, 2023 12:12 pm, edited 1 time in total.
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colomom
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Re: Unknown Sleep Disorder

Post by colomom » Mon Feb 06, 2023 12:00 pm

Does she feel anything before the episodes, such as lightheadedness or head spinning? What is she doing before the episodes? Does either positional changes or exertion proceed the episodes. Are there any environmental factors that can trigger seizures such as flickering fluorescent lights prior to the episodes? Have they done any heart testing to rule out possible cardiovascular causes?

Sleeping and fainting are not the same thing, can you determine which it is? You say she had 2 episodes during the EEG, where the episodes during these EEG described by the doctor as sleeping or fainting (syncope)? Did a doctor or nurse observe the shaking episode she had after the EEG was removed and if so did they believe it may have been a seizure? Considering your wife’s age I would keep pushing the doctors to peruse more cardio and neurological testing. Perhaps it’s a sleep issue, but they should rule out other possibilities to be sure.

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Miss Emerita
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Re: Unknown Sleep Disorder

Post by Miss Emerita » Mon Feb 06, 2023 12:17 pm

Marshall, the link Lazarus provided looks excellent. One conclusion I draw from the article is that it will take a small team of doctors with different specializations to consider all the possibilities and potential remedies. Repeat trips to the ER just aren't going to move diagnosis and treatment forward, though they may be needed in the moment, of course.

It can be very hard to advocate for this kind of concerted approach. Ideally your wife's primary care physician would arrange for her to be seen by e.g. a cardiologist and a neurologist and make sure they have complete records for her and organize a meeting so they can all discuss plans for diagnosis and treatment. Can you and your wife visit her PCP and talk about kind of team approach? It might be worth emphasizing that she is now at great risk for a fall if she tries to lead a normal life.

You give an excellent summary of your wife's experiences so far. At the next doctor visit, you or she might prepare a written summary in advance including details about the sudden onset of the condition, the occasions on which she has had recurrences, tests and treatments tried so far, etc.

Wishing you and your wife the very best with this.
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Re: Unknown Sleep Disorder

Post by Janknitz » Mon Feb 06, 2023 4:42 pm

Agree with the excellent advice you have already been given. She needs a thorough workup with a cardiologist and a neurologist, not just ER workups.

If NOTHING else shows up, consider the UTI. A UTI can cause something known as autonomic dysreflexia which results in a sudden change in blood pressure that can cause loss of consciousness-- very unusual in someone without an underlying neurological issue affecting the bladder, but if nothing else comes up (this is known as a "zebra" in medical assessment--as in "when you hear hoofbeats, think horses, not zebras") it's something to consider.
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Miss Emerita
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Re: Unknown Sleep Disorder

Post by Miss Emerita » Mon Feb 06, 2023 10:55 pm

Excellent suggestion from Janknitz about the UTI if nothing else makes sense to the doctors. Do mention it to them. (The only reason I am commenting on this is that autonomic dysreflexia came up in the plot of a junky TV show I was watching. Several newspaper articles were written after that episode aired explaining that while very rare, this is an actual thing.)
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Conrad
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Re: Unknown Sleep Disorder

Post by Conrad » Tue Feb 07, 2023 7:46 am

Marshal,

I can't offer any advice on your wife's issue, other than what's already been said here, but I can offer you another piece of friendly advice.

This is an open forum.

DO NOT POST PERSONAL IDENTIFYING INFORMATION ON ANY OPEN FORUM.

We now know your name, your wife's name, and where you live. We also know about your wife's heath issue. That's not good for you or your wife. Go back to your post and edit out your last name and where you live, remove that information as it's not needed for your purpose here. Although, most of the folks here are great and this is a great forum, anyone in the world can come here and read anything that's posted. You don't want or need that.

Go to your post and click the lil pencil icon in the upper right of your post. Now you can edit your post.
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GRB
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Re: Unknown Sleep Disorder

Post by GRB » Tue Feb 07, 2023 9:40 am

chunkyfrog wrote:
Mon Feb 06, 2023 10:51 am
Get a referral to a cardiologist.
This sounds like a circulatory problem--maybe electrical.
Thank You

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Julie
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Re: Unknown Sleep Disorder

Post by Julie » Tue Feb 07, 2023 10:59 am

Any reason you don't ask for a neuro referral? There are definite features in your descriptions that would likely be of interest to one along with the cardiac stuff.

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chunkyfrog
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Re: Unknown Sleep Disorder

Post by chunkyfrog » Tue Feb 07, 2023 1:46 pm

Julie wrote:
Tue Feb 07, 2023 10:59 am
Any reason you don't ask for a neuro referral? There are definite features in your descriptions that would likely be of interest to one along with the cardiac stuff.
Very observant.
I needed neuro referrals before my surgeries for carpal tunnel and spinal stenosis.
We have nerves everywhere; affecting sensation, movement, and mental health.

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Julie
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Re: Unknown Sleep Disorder

Post by Julie » Wed Feb 08, 2023 5:47 am

And blood flow... people tend to assume neuros are only for certain issues, but they're e.g. very much involved in how well blood 'behaves' on its way to, and in, the brain - circulatory issues which people tend to think of as only being cardiac related, but in fact can be very much neuro situations as well.

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Re: Unknown Sleep Disorder

Post by nightnight » Wed Feb 08, 2023 9:13 am

Marshall,

You say your wife is on CPAP.

Is the therapy working? What are her AHI scores? What pressure is the machine set to?

Maybe she is using the machine, but it is actually keeping her awake? I mean, the pressure just may let her get to deep sleep?

The body may need sleep. Does she sleep during the day? Lots of naps?

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Re: Unknown Sleep Disorder

Post by D.H. » Wed Feb 08, 2023 2:09 pm

Don't overlook that she might be dehydrated and needs to drink more water. Consider also the possibilities of narcolepsy or epilepsy.

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