Old 12-14-2017, 08:57 PM #1 (permalink)
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Default Sleeping all the time

Greetings friends,

Asking for your input for a increasing concerning problem. I can't stay awake. I fall asleep while getting my nails clipped, taking a tube feeding, in the middle of writing an email, in the middle of doing exercises. It doesn't matter if I just woke up, I could go right back to sleep. I've been prescribed a bipap, which I'm working on, but my co2 is still normal, all other blood/ox, etc reading normal FVC 75.

Any thoughts on what's going on and how to fix it?

Thanks,

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Old 12-14-2017, 09:38 PM #2 (permalink)
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Default Re: Sleeping all the time

Hi Deb. I have a similar problem. During this past year, I very often--many times a day--will suddenly fall asleep in the middle of a sentence or at a red light or before dinner is served at a restaurant. I fall asleep l <whoops, it just happened! I fell asleep for about a minute while typing this.> because I don't get good quality sleep when I should.

One possibility is that you're not actually sleeping when you're "sleeping." My restless legs syndrome makes my legs "jump" suddenly and involuntarily. This keeps me from falling into deep sleep. Also, sleep apnea can keep a person from getting into deep sleep. My wife used to listen and watch me sleeping. She said I would very often stop breathing for several seconds, and then suddenly gasp, "popping" my throat back open to resume breathing. This also prevents us from getting a deep sleep.

Nightmares and a "busy mind" will do it, too.
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Old 12-14-2017, 09:52 PM #3 (permalink)
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Default Re: Sleeping all the time

Deb, has your doctor done a comprehensive blood panel or thyroid testing recently?
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Old 12-14-2017, 10:04 PM #4 (permalink)
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Default Re: Sleeping all the time

B12 injections might give you a boost.
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Old 12-14-2017, 10:36 PM #5 (permalink)
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Default Re: Sleeping all the time

To reiterate and add to what others have said, given that itís apparently not your CO2 levels, other considerations would include thyroid abnormalities, anemia, and other metabolic abnormalities including problems with liver, kidneys, blood sugar. The blood tests to get would be TSH, CBC, chem panel. Also, if itís a real recent problem, youíll want to rule out a urinary tract infection (they donít always produce burning with urination).

Itís also good to review your medication list as a number of meds can cause drowsiness, including Baclofen, Riluzole, antihistamines, some blood pressure meds, and some antidepressants.

If all the above are normal or ruled out, consider a sleep study.
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Old 12-16-2017, 10:38 AM #6 (permalink)
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Default Re: Sleeping all the time

Mike, you're right, I only get sleep in blocks - about 3 hrs being the longest one.

Karen, I have had most of those blood panels done, but good suggestion.

Fiona, thyroid testing excellent possibility.

Greg, I've started back on my daily vitamins. (B12)

So short of red bull or espresso, there is no magic bullet?

Thanks all for responding

Deb
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Old 12-16-2017, 01:02 PM #7 (permalink)
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Default Re: Sleeping all the time

Deb, with regards to a magic bullet- I've seen some people report improvement with judicious use of Ritalin or Modafinil. Modafinil is used to improve mental alertness more than for physical energy. But I would make sure every other cause is eliminated first.

It would be interesting to see how improving your sleep patterns might help. 3 hour blocks doesn't seem sufficient.
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Old 12-16-2017, 01:06 PM #8 (permalink)
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Default Re: Sleeping all the time

Deb, it's a broken record, but using the BiPAP more would likely give you longer sleep blocks, and more alertness during the day. The O2 and CO2 don't show the work of breathing that your muscles are doing when they shouldn't have to do so much. And I know you know I'm ready to help whenever you're ready to get back to that -- just preaching generally.

Best,
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Old 12-16-2017, 02:43 PM #9 (permalink)
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Default Re: Sleeping all the time

Deb,

Darcey was sleeping at odd times during the day. And then she began to fall asleep in the middle of a conversation. She was also losing weight at an excessive rate. This was about the time that she had her first visit at Johns Hopkins. It had been over a year of symptoms without a conclusive diagnosis. Yet on this first visit, the doc said, "I'm pretty certain that you have ALS. We'll reset and redo all tests, but I'm pretty sure its ALS. But the first thing we need to do is to get you on a BiPAP. You are losing so much weight because you're struggling to remove CO2 from your lungs... and particularly at night when you are laying down. It's like you are running a marathon when you are trying to sleep."

Darcey had already seen the huge change in me when I began using a CPAP for my sleep apnea... so she was anxious to get her BiPAP. It took me several years to use mine regularly but she took to hers in days. Within the first week, she was no longer taking naps and falling asleep at odd times. She felt so much better. And her rapid weight loss stabilized. It was a life changer!

I don't know if Darcey's situation mirrors yours, but I hope you find the solution to what's going on.

My best...

Jim
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Old 12-17-2017, 09:07 PM #10 (permalink)
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Default Re: Sleeping all the time

The first block is incontience knocking at the door. More meds and back to bed. The second block is having to get up and use toilet and more meds before husband goes to work. I'm looking at a very (1) limited options of quick release masks to wear with bipap. But that won't change the blocks of sleep I get. Plus the longer I'm in bed the stiffer I get. It's incredible uncomfortable to have to pee urgently and not be able to bend knees to get up.
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Old 12-18-2017, 09:03 PM #11 (permalink)
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Default Re: Sleeping all the time

Jim, my hats off to you. You kept trying to use your cpap machine-for years before you were successful. Most would have given up.

I'm curious as to the mechanics that went into the study that determined that lungs work harder then they should. Especially when laying down. You would think there would be an outward sign of that. Anybody have details on testing?
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Old 12-18-2017, 09:53 PM #12 (permalink)
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Default Re: Sleeping all the time

Deb,

Darcey wasn't particularly pleased that it took me so long to finally use the CPAP on a regular, nightly basis. Perhaps the best illustration came from my time as a Boy Scout leader. We'd go camping and the Scouts always wanted me to set up my tent at the edge of the woods. Then they would set their tents some distance away. Why? "Because if Mr. Bird sleeps near the woods, his snoring will keep the bears away and we'll all be safe!"

I don't know about studies, but I can expand upon personal observations. As Darcey was attempting to pursue a proper diagnosis of what she had, they wanted to get an MRI. But the standard MRI requires that you lay flat on your back. Darcey had then reached the point where she was having difficulty breathing if she was laying flat. In fact, at night, I'd have to prop her up with pillows to make it easier for her to breath. I suspect it had to do with positioning of her diaphragm and its relation to gravity. Although they hooked her up to oxygen, she couldn't breath well enough (inflate/deflate her lungs) when laying flat. They had to send her home without the MRI. Fortunately, we had a "sit up" MRI facility in the area. With great difficulty, I managed to get her into a seated position... but her ability to hold herself up had long since passed. Working with the technician, we were able to use [rubber?] wedges to hold her in place so they could do the brain MRI. It was not a pleasant hour session, but she managed not to fall out... and because she was sitting upright, she was able to breathe.

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Old 12-19-2017, 04:04 PM #13 (permalink)
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Default Re: Sleeping all the time

Although this is not a study, I thought it might help clarify some of the issues with breathing and effects on sleep. Kate

What Everyone with ALS Should Know About Breathing | MDA/ALS Newsmagazine
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Old 12-19-2017, 07:47 PM #14 (permalink)
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Default Re: Sleeping all the time

That article is a bit outdated -- it seems to put more emphasis on sleep studies, which most PALS do not need, over outpatient tests that are available at most clinics these days and are sufficient for BiPAP reimbursement. But it is always useful to remind ourselves that you're unlikely to wake up one day and not be able to breathe -- it's a more insidious thing. But, if early signs/numbers are ignored, that acute decompensation could occur.

Lying down, breathing can be harder because you are less able to access chest and abdominal muscles that support your breathing as other muscles weaken, or the reverse can be true. Sometimes it comes down to bulbar onset vs. other types, but there is no one pattern.

The work of breathing, Deb, can be seen somewhat in how fast you breathe and how much air you're moving (the Vt on the machine). Allowing for sufficient inhalation time, at a volume that helps inflate the lungs but doesn't overstuff them, and making it easy to trigger a new breath without going too fast, are some of the ways that the machine helps reduce WOB, when set appropriately. Since MND chews up a lot of calories as everything takes more energy than it should, when you sleep, you could basically be using more energy than you have replenished by the point at which you fall asleep again, if that made any sense.
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Old 12-19-2017, 08:22 PM #15 (permalink)
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Default Re: Sleeping all the time

Deb, forgive my lack of memory, but instead of headgear clips, did you try a hose connector to detach/reattach? Some are flexible soft plastic, some smooth hard plastic. When clean, they slide in/out pretty easily. You can mix/match so you are only sliding hard plastic into hard plastic, not squeezing a hose over plastic. Admittedly, you'd have to make these pit stops with the mask still on, but people do...

When last seen, I think, you were trying different drugs for that? But also, if you were in a deeper sleep, the urgency might not be as great.

As for the stiffness, are you in a hospital bed with a good overlay? You shouldn't have to get up every three hours on any account. And don't forget the low-voltage heated mattress pad esp. as it's winter!
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