Anyone feel worse with CPAP/BiPAP?

[Whit]

Really sick. Hard to type... srry

Have sevre (?) slp apnea

been testing a Bipap during day.

mkes me lighthded, fl suffocating. mks me breath diff. deeper inhale, shallower exhale

if CFS causes "abnormal" brthing BC our body compensatng for imbalance, is forcing diff brthing dngerous?
Twice now, I feel HORRIBLE the day after testing Bipap during day for 1hr

sevre slp apnea def dngrous too though...

 

[Whit]

anyone? Every time I test Bipap during day (for 1hr), 3 times now, I feel HORRIBLE the day after

Using ResMED S9 AutoSet

 

[SickOfSickness]

I felt worse, but only because of the noise and discomfort. They prevented deeper sleep and made it take longer to fall asleep. Also I was worse when the humidifier chamber and tubing were not cleaned.

 

[WillowJ]

I am using CPAP, not BiPAP. The first machine I had (loaner) blew in a lot of air even when I wanted to breathe out, and wanted me to breathe faster than I normally breathe. I could hardly ever use it for this reason; I just got exhausted.

I now have a model which is much more intuitive, and it doesn't blow much while I breathe out. I can breathe at my own rate.There is a setting which can be adjusted on my machine which regulates this. Mine is set at the highest setting (most gentle).

It does seem to help me stay asleep longer. However it still makes me breathe more deeply and wears me out, so I have to take a break every now and then.

It works better while I am asleep then when I am awake or semi-awake. I know some people who use theirs while watching TV or whatever, but this would not work for me.

Also I was worse when the humidifier chamber and tubing were not cleaned.

It's so hard to keep this up!

 

[SickOfSickness]

Willow's post reminded me of the overnight where they determine what machine and pressure you need. They had me on one machine that felt bad at first. Was this a machine they tested you on?

 

[roxie60]

I actually think it is beneficial but I fight with it and end up ripping it off during sleep. Plau I am sensitive to smells and it seems no matter cleaning hose each day it get s a sour smell and I then dont use the cpap.

 

[SickOfSickness]

If memory serves, I had the opposite of Willow. CPAP felt bad, BiPAP felt good.

 

[Xandoff]

I was started out wrongly with a CPAP machine and then switched to a Bi-Pap machine. I had such a horrible experience with the CPAP machine that by the time I started using the Bi-Pap I ended up not using it for more than a couple of months. I sleep on my side now and wear one of those Breathe right things on my nose. What I would give for one night of real sleep....but hey....I am only dreaming!

 

[WillowJ]

Willow's post reminded me of the overnight where they determine what machine and pressure you need. They had me on one machine that felt bad at first. Was this a machine they tested you on?

they did not test me on a machine. they just decided and issued me one. Then for a couple of reasons took it back and issued me another. I like the second one better.

I have told them the settings are a little off and they are dragging their feet about getting them changed.

I have never tried a BiPAP.

roxie60 they should replace the hose every so often for you. also you can clean the washable parts with a 1/2 vinegar 1/2 water soak (15-30 minutes, IIRC). not everyone will tell you this, but you should double-check with your RT and my guess is that they will approve it for your machine as mine did.

Every time I take off my mask for the day, I turn off the humidity and blow dry air through the tube for a bit, and wipe the mask. It's not good if I forget to turn the humidity back on next night, but I think it improves the hose to dry it out a bit.

 

[Antares in NYC]

Since about the year 2000, most doctors diagnosed my ME/CFS as "sleep apnea", despite inconsistent sleep studies. No joke, since 2000 I may have had 10 to 15 different sleep studies done at different locations, medical centers, doctors. About 1/3 of those studies showed no sleep apnea. The rest showed a very mild apnea that, according to all the sleep specialists I consulted, "should not cause these extreme sleep disturbances", fatigue, and daytime sleepiness. A couple of sleep tests, way early on, showed a very mild "restless leg" reaction too.

So, overall, after about a dozen tests, they told me I had an inconclusive very mild apnea that didn't correspond to my extreme symptoms.

I have tried a number of CPAP machines, only to give up within a few weeks. The use of the CPAP machine made my sleep way worse. It was torture. My most recent test of a CPAP machine was in 2011. My clueless GP was convinced that I just needed a better device, so he got my insurance to approve a very modern, very fancy new model with all the bells and whistles, nasal pillows, you name it.

Guess the result?

Within three weeks I had to stop, as it was making my sleep even worse.

Right now, this fancy cpap machine rests neatly on its original packing box, collecting dust in a closet, alongside the two other models I used in 2008 and 2005.

PS: One day I will get around to calculate the amount of money and wasted resources that this ME/CFS has caused me. I'm sure I will be horrified.

 

[perchance dreamer]

This is an interesting site about treating apnea:

http://www.ihatecpap.com/

I use a TAP 3 dental appliance, and it works really well.

 

[physicsstudent13]

my chronic fatigue is mainly from sleep disordered breathing and asthma. I woke up one day with a little chest pain on bipap st and was wondering if my settings are too high the bpm is too high, but I think the settings may need to be high to treat central apneas. If I set bpm to 20 then I feel nauseous. I had bad chest pain on cpap once that lasted a day.

 

[physicsstudent13]

I feel better after taking coq10. I'm still on oxygen and asv, the s9 didn't work for me I kind of hate that machine and my weird pulmonologist put me on bipapst instead of asv

 

[alex3619]

I actually think it is beneficial but I fight with it and end up ripping it off during sleep. Plau I am sensitive to smells and it seems no matter cleaning hose each day it get s a sour smell and I then dont use the cpap.

Thats what happened with me using CPAP. I am planning on testing BiPAP later this year.

 

[physicsstudent13]

does anyone have treatments for central apnea? It's really dangerous and damaging if your O2 levels fall to 70%. I'm trying to increase melatonin levels by taking precursors and cofactors to melatonin. It is terrible I demasked last night and feel awful all today and sick and weak and had IBS attacks plus I have 2 resistant infections from exhaustion

some precursors/cofactors might be-
sam-E, tryptophan, (or melatonin)
I'm also trying to increase GABA by taking: GABA, klonopin, theanine, avoiding coffee

anyone have any good ideas?

 

[physicsstudent13]

is there a way to modulate the pineal gland so you get more continuous sleep? does tryptophan help? it seems to help my sleep sometimes but today I feel foggy.
maybe my IBS is a sign of absorption problems

 

[Whit]

New thread pls

 

[physicsstudent13]

I have an asv and lowered my max pressure settings and I feel that I sleep better on that and de-mask less on lower settings

 

[physicsstudent13]

I'm on BPM 10, Ti 1.5, max IPAP 18cm, epap 4-9cm and it feels much better than the higher settings. I tried this aggressive s9 resmed vpap adapt and I couldn't tolerate it, I had maybe one good night of sleep on it probably because the BPM is stuck at 15

 

[Whit]

Noone feels worse after using CPAP/BiPAP? Hypervntlatn feeling or wrse CFS?

Evn 5 min = Hypervntlatn feeling for hrs after.

Im scared to use it but i need it. :-/