I am having the best day...

[perchance dreamer]

I do want to take advantage of Sleepyhead when I start using the APAP. Is Sleepyhead how you found out about your centrals rather than through a sleep study?

 

[TiredBill]

I do want to take advantage of Sleepyhead when I start using the APAP. Is Sleepyhead how you found out about your Centrals rather than through a sleep study?

Yes. Sometimes using APAP/CPAP can make Centrals worse. That was the case with me. My numbers were not sky-high, but the Centrals (on top of having CFS) were killing me. I could almost predict the number of Centrals in the morning before loading my data. Fatigue and Centals tracked very consistently for me.

There is no way my sleep doctor would have flagged this. I suspect very few people in my health group have been approved for ASV with my numbers. But the last (second) sleep study proved what I knew from reading my charts, and I got the (expensive) specialized machine I need through my insurance.

I didn't realize you didn't have a machine yet. Do make sure you don't get a "brick" (that is to say a machine that only has usage/compliance data, but lacks efficacy data). Some people get stuck with bricks by DMEs who pocket the difference in cost. One can't track success/failure with a brick.

If you need APAP the ResMed AutoSence 10 Autoset (or the "for her" model of the same) is a very good machine. Most recommended if you have a choice.

Bill

 

[Gingergrrl]

@TiredBill I got behind with following your thread but am so thrilled for you that you have found something that is helping you to have restorative sleep. I know it is not perfect and is a work in progress (like everything else in life!) but it is good news and I hope you will keep updating us.

 

[TiredBill]

@TiredBill I got behind with following your thread but am so thrilled for you that you have found something that is helping you to have restorative sleep. I know it is not perfect and is a work in progress (like everything else in life!) but it is good news and I hope you will keep updating us.

Thank you. My experience makes me wonder how much relief people would have in their symptoms if we had some means of helping them get restorative sleep (that didn't involve drugs that might make things worse)?

While other CFS symptoms have lightened over the years, the thrashed sleep and associated fatigue have not. The recent "miracle nights" of restorative sleep helped push the CFS to a background buzz.

I wonder if that's how it feels with other people?

Bill

 

[PeeWee]

Please do go on updating @TiredBill. News that someone has found a way to improve things is so good to hear and if this is a way to a lasting improvement for even a small subset of people with cfs that will be spectacular.

 

[TiredBill]

Please do go on updating @TiredBill. News that someone has found a way to improve things is so good to hear and if this is a way to a lasting improvement for even a small subset of people with cfs that will be spectacular.

OK. I just want to make it clear that treating sleep apneas (including the mix of obstructive and central type apneas I've been having) isn't going to "cure" CFS.

That said, I'm seeing more people with "mixed" apnea types via a sleep apnea support forum that I participate than I would have expected. Very few people get ASV machines. My hunch is that many more people who have cental apneas and mixed apneas would benefit. The standard CPAP/APAP machines don't treat central apneas.

For someone like me who has CFS and mixed apneas this ASV technology seems very promising. This condition is a lot easier to take with restorative sleep. I have not had much restorative sleep. What a difference.

Bill

 

[frozenborderline]

@TiredBill

yes everything is interlinked, thyroid/mitochondria functions/energy/steroid and sexual hormons

Pregnenolone is synthesized in mitochondria from cholesterol. If mitochondria are inefficient, many functions can be affected, especially energy production and pregnenolone production.
Mine is affected too!

have you tried pregnenolone? I just started and I feel irritable and tense and can't sleep. I also had d-ribose but i feel that it's more likely the pregnenolone caused this, since it's definitely active and it's a steroid. worried about side effects

 

[pattismith]

@TiredBill , how do you do now, are you gardening?

have you tried pregnenolone? I just started and I feel irritable and tense and can't sleep. I also had d-ribose but i feel that it's more likely the pregnenolone caused this, since it's definitely active and it's a steroid. worried about side effects

I take pregnenolone because deficiency has shown up in my blood works regularly. Maybe you don't need it

 

[TiredBill]

@TiredBill , how do you do now, are you gardening?

Things are going pretty well.

Not every night is super-refreshing (last night was so-so), but a huge trend in the right direction. As has been the case for 3 decades, I start every day taking stock of my energy levels to access how much activity will be good for me (and what would be injurious).

Today I will take it easy. But my garden is making progress.

Thanks for checking in.

Bill

 

[frozenborderline]

@TiredBill , how do you do now, are you gardening?



I take pregnenolone because deficiency has shown up in my blood works regularly. Maybe you don't need it

i have low cortisol and it gets even lower throughout the day

 

[Riben12]

Congratulatons! I hope they your streak keeps going!

 

[Eneia]

Thank you. My experience makes me wonder how much relief people would have in their symptoms if we had some means of helping them get restorative sleep (that didn't involve drugs that might make things worse)?

While other CFS symptoms have lightened over the years, the thrashed sleep and associated fatigue have not. The recent "miracle nights" of restorative sleep helped push the CFS to a background buzz.

I wonder if that's how it feels with other people?

Bill

@TiredBill
Well as I started “biohacking” using some apps, I started wondering to myself: “Why do they need to ask how I’m feeling once they’ve asked how I slept??”. There is an exact correlation between both for me.
Very recently, I started using magnesium and niacin (and selenium, irrelevent to sleep), the first supp increases the quality of my sleep, and the second makes me able to fall asleep again soon after I wake up during the night, rather than toss and turn for several hours.
My brain fog is still very alive, but my physical daily tiredness has lifted quite a bit, and I wake up at the first alarm rather than snoozing for 2 hours, even with an earlier rise than I am used to, and do not need coffee during the day to not think about a nap. Even though my biggest issue (brain fog) has not shifted, my life with good sleep is much less a misery of symptoms, and now I’m just an idiot with PEM rather than a person with M.E., nearly ready to have a life again.

 

[echobravo]

d the second makes me able to fall asleep again soon after I wake up during the night, rather than toss and turn for several hours.

The same thing happens to me, I wake up after 4-5 hours of sleep - with heartbeat and feeling very alert and awake, but unrested - and after this I can’t sleep again.

Do you take the niacin when you wake up at night, or before going to bed? Timed release?

 

[Eneia]

@echobravo I take it at the *end* of my evening meal to avoid a huge flush. I had tablets left out of their box, no idea what I took, 100 or 500mg, now using capsules in the past few days, 500mg, that was too much flush-wise, so taking 2/3 opening capsule, so approx 333mg and flush isnt too much. All quantities I tried worked.
I feel like Magnesium malate (400mg of Mg) was a turning point for me so if you don’t use it yet maybe consider it with Niacin. Taken at same time to avoid bathroom issues during the day.
The Niacin I take is the flushing one, so no time released or anything.

Actually, I had another successful experience overnight, I was woken up at 4am and had to wake up, came back to bed worrying that niacin wouldnt do much for that, but it seems that as soon as I lied down again I fell asleep, as I don’t remember! This has never happened in the many years of being ill.

I hope it works for you.

 

[gregh286]

Funny I read this just now its so coincidental.
Ive had an incredible week also,
I received NAD+ on monday, started Magnesium Malate (800mg) and 1500 or 3000 of slow release niacin.
Brain Fog I am lucky to rarely get it.
But the PEM,phew.

Seems a real rocking combo.

 

[Eneia]

Funny I read this just now its so coincidental.
Ive had an incredible week also,
I received NAD+ on monday, started Magnesium Malate (800mg) and 1500 or 3000 of slow release niacin.
Brain Fog I am lucky to rarely get it.
But the PEM,phew.

Seems a real rocking combo.

Funny! @gregh286 what other things have worked for you previously? What did you try, that gave you a positive result? Just wondering if we have reacted to the same stuff.

 

[gregh286]

Funny! @gregh286 what other things have worked for you previously? What did you try, that gave you a positive result? Just wondering if we have reacted to the same stuff.

Vasodilators help me tonnes. My bp is 130/90 but can goto 250/110 under light exercise. Lay terms...? Body refusing to dilate to protect host...

So i rotate all these.....red wine....hot bath....humid country....nifedipine....citrulline...arginine.....sauna and carbs. (Insulin expands artery)

No surprise niacin helps...big vasodilator.
Put magnesium in that boat too.

Wont be surprised if they discover cfs is just closed arterioles....cell protection mechanism.
Times that what it feels like to me.
I get highly.toxic...night sweats etc...body cant seem to banish toxic waste properly then dumps.it to skin in sleep.

Total muscle starvation......how but? Closed off microcirculation.
Body see danger to cells.....right lads close off the supply valve.
Body is smart tho.....need to rotate it gets used to one supplement.

 

[TiredBill]

Not to be a downer but after some spectacular days (and more that were very acceptable) it has been a rougher week.

Not sure why exactly. I feel pretty good at managing PEM and listening to my body's feedback, but perhaps in the burst of feeling energetic, I over did it? My garden (where there is still plenty of work to do) is starting to look beautiful.

I'm sure we all understand the up and downs of living with this illness.

Still, way above the baseline previous to starting ASV. Taking it very easy this week.

Not to provoke feelings of envy from those in frigid climes, but here in Los Angeles (where is it generally mild) we've had an unusually warm and Spring-like Winter. Flowers are in bloom.

Best to all.

Bill

 

[gregh286]

Funny! @gregh286 what other things have worked for you previously? What did you try, that gave you a positive result? Just wondering if we have reacted to the same stuff.

Cfs is microcirculatory and metabolic form of asthma.
Restricted blood flow.....etc.....lot of similarity in a different context.
Muscle cells are starved intead of lungs.

 

[Eneia]

@TiredBill whatever helps, however long... we have to keep trying stuff, and improve wherever we can. Some things will make a big difference, some won’t, it’s heartbreaking when a new marvelous thing doesn’t deliver long term, but here also lies our strength: we don’t give up.

I do hope you did not overdo it because of excitement (this has cost me a lot in my ME career) but if the only long term result you get from this is a lovely garden, it’s something to put you in a great mood in the morning.

Anything related to sleep that can be improved could make a drastic difference. And maybe it worked really well for you on just this side, and your excitement made you push too hard without realising. How about (once recovered from the gardening) you pace? I never expect any one change to bring more than a few % improvement, don’t lose those few % because of an excitement led crash!