Concerned wife, husband has CPAPs, Chiari, Narcolepsy

Hi All, I’ll try to keep this as short as possible. 4 years ago my husband was dx sleep apnea, he doesn’t stop breathing, just oxygen was dropping very low. He got cpap and uses it faithfully. It has never really helped him feel rested. Last April he was dx with Narcolepsy and pulled from work as he was a CDL truck driver. He is not overweight and is generally active. He continued to use cpap and it was on auto setting, he didn’t snore with cpap on. By July he had horrible head pain and after 4 MRIs they discovered a Chiari Malformation. He had brain decompress surgery Dec 1st. His brain had been dislocated and flattened his brainstem and cerebellum and was restricting CSF flow. He now has moderate impaired short term memory and cognitive function. End of Dec we went to cpap place and had them look at machine as it was not working right so we have a loaner now. He is great about cleaning mask and putting distilled water in machine. In the last couple of months I noticed he’s snoring a lot and stopping breathing and when he finally takes a breath he’s sucking the air from mask so hard it bogs the motor. I have called the neurologist and the tech who we work with for the cpap. They made adjustments last week. This weekend I got little rest because he kept not breathing and then gasping for air. It scares the crap out of me. So Monday we called neurologist and he made another adjustment, the machine is set at the max and he’s still snoring like a freight train and stopped breathing for such a long time at 1:33 am that I had to shake him. First thing this morning we get a call from tech at cpap place and she said she ran a diagnostic on his usage and that he’s stopping breathing at an unusually high rate and was contacting the neurologist today. We are waiting in limbo.
My concern is that because of the brain injury that this is central sleep apnea and NOT obstructive sleep apnea. That requires a different machine doesn’t it? Has anyone else had similar happen to them? I’m really worried he’s going to stop breathing and I won’t hear him. What other things can be done to help? Any responses would be greatly appreciated. Sometimes I feel I’m smarter than those that are caring for my husband.

Hi MissV and welcome to the forum. It wouldn't surprise me one bit if you are way smarter than those caring for your husband. He's fortunate to have you in his corner. Now, this is just my opinion and what I would do. I would want my husband to have a full out sleep study in a laboratory... preferably in a hospital setting. (Even if it's the second sleep study.). It may be central SA and again, IMO, that's the best way to find out. I'm sure when you speak to the Neurologist he will be able to set this up or at least guide you in the right direction. Best of luck to you both.

e: What machine and mask is he currently using? Do you know his current settings?

If he has a Sleep Doc who is other than a Neurologist, he needs to find one who is!

Thank you for responding so quickly! I truly appreciate it.
We started out with a sleep doctor but after the first two years and my husband not getting better, I asked to get a referral to a neurologist. Dr Kaminow is a Neurologist whose specialty is sleep disorders. My husband has had 3 sleep studies at two different facilities and he’s had the MSLT daytime test too. He went into REM in 3 minutes. He’s also had 4 MRIs of his brain and entire spine.
His cpap settings are on auto now. I know the new mask fits great and doesn’t affect where they removed part of his skull.
I cannot remember what machine he has, but will find out.
We go back to the neurologist on the 19th. I have already discussed with him that I am concerned that it’s central sleep apnea. He did mention we may need to do another sleep study. Although his staff isn’t the best, Dr K is. He’s listened to all of my concerns and really is working hard with us and the Neurosurgeon, to get my husband to a better functionality,
I do know that Narcolepsy and SA often present together. I have also researched enough to believe there is also a link with Narcolepsy and Chiari. And there’s a strong chance when you have Chiari that you have CSA. Dr Kaminow has said my husbands case is pretty unusual and is working on publishing his case into a medical journal.
This is not the man I married 31 years ago. He held the same job for 30 years until the issues he is experiencing started manifesting. The last 6 months we have seen significant decline in him. Almost dementia like. He can’t stay awake even with stimulants yet he can’t stay asleep either.

The CPap is a Respironics. It’s loud and hisses. It went back for diagnostics and repair. I think he is eligible to get a new one as this is over 3years old.
Do you know what the difference is between a cpap and a bipap?

MissV wrote: ↑

Wed Mar 07, 2018 9:41 pm

Do you know what the difference is between a cpap and a bipap?

CPAP/APAP is usually a single pressure but can sometimes be 2 pressures (one for inhale and one for exhale) if exhale relief is used.

BiPap is usually dual pressures...one for inhale and one for exhale and there are several different types of bilevel devices that do or treat various different thing.

Exactly which machine is he using now that is the loaner machine? Brand and model number???

Pugsy
It’s a Respironics system one REMstar

Have your hubby's sleep tests been after the surgery for Chiari? I commend you for advocating for your husband, and encourage you to be as assertive as you need to be to light a fire under their behinds and get them to find out what he needs without delay. If they are watching his data, they should KNOW if his needs are being met. If his machine doesn't have the kind of data they need, shame on them. Sorry to sound so hard-nosed but your husband's case is quite complicated and frankly, I am sitting here with my jaw hanging down at your story. I'm sure some of the astute data folks will give you some good pointers. Good luck with things.

Model number please...its important.
250/260/450/460/550/560/650/660 or maybe higher numbers.

I want to advise some software for you to use to see what is going on with his breathing but if you don't have a model that collects the data there is no sense in installing the software because there's nothing to see.

The loaner is same as what he has. I’m wondering if there’s a better unit for him. We have never had the company who we have for the supplies and where we got machine call before to tell us that he is stopping breathing too many times. Originally that’s not what was happening. He was just having his o2 drop too low, he never stopped breathing before.
He sleeps with his upper body elevated also.
Remstar auto DOM
560p

His mask is a Resmed airfit it goes over his nose and mouth and is the best fitting one he’s had yet.
I went through settings and it’s on auto, ramp is on .20. The mask alarm is on.
Hope this is what you were look8ng for

Download Sleepyhead and let's see what's going on with the therapy.
It works great with the 560 P machine.
https://sleep.tnet.com/equipment

Then get us an image of a recent detailed report.
See this thread.
viewtopic/t158560/How-to-post-images-for-review.html

He has not had a sleep test since surgery on 11/30/17. I asked about doing another one since I have seen some scary changes. We had a big snowstorm today so couldn’t reach the Dr. Or the tech who has been helping us with the machine. I’ll try again tomorrow.
His last mri was in July. It took until first of November to get into the neurosurgeon 4 hours away. He was very thorough and told us this was a urgent matter so surgery was scheduled.

I’m doing my best to advocate for him. This has changed his life in ways that neither of us like the direction it’s going. I have yet to find a doctor educated on all three issues. So trying to get these three docs to communicate with each other has been difficult. I’m about ready to lose my sh!t.

Ok I’ll look at the sleepyhead and get the info you need. I may not be able to do it tonight. He’s already in bed but I can read through and be ready
Thank you

MissV wrote:Ok I’ll look at the sleepyhead and get the info you need. I may not be able to do it tonight. He’s already in bed but I can read through and be ready
Thank you

One thing that wasnt mentioned is that you need to check if the CPAP has an SD Card in it if it doesn't you need to get one as sleepy head won't work without it.

Sent from my Moto Z (2) using Tapatalk

It does have a sad card but I don’t have a place to put into my laptop. Does that matter?