Did well - now exhaustion returns - any help?

[peggyb]

OK - I started on CPAP the day after Thanksgiving. I had immediate improvement. Got up without being tired. Didn't wonder when I could take a nap...didn't even take naps!! (Kind of missed them...) More alert. Less crabby and depressed.

Now - the last few days - I've been exhausted! Sleep late (lucky for me I have a flexible job) - foggy - can't concentrate - just want to sleep.

What's up??? Post holiday let down with no adrenaline? My husband's been sick - but I don't feel sick - just exhausted. (and worried it's not working anymore.)

I've been taping my mouth. I don't use ramp anymore as I'm comfortable with full pressure (only set at 9). Getting used to headgear and exhaust from Swift nasal pillows......

Any encouragement or advice? Will it get better again???

Peggyb

[snoregirl]

Is it possible that you ill husband is distrubing your sleep? He might be coughing, or going to the bathroom or otherwise waking you partially up.

I am one of those who has mild apnea, but is more affected by my really bad snoring. The snoring was waking me up more than the apnea, and causing me not to much stage 3 or 4 sleep.

May be a temporary situation with something else disrupting your sleep.

May also be your titration pressure is not perfect. Could be you felt better because some pressure is better than none, but still not perfect. Can't tell this without data. You don't list your machine so we don't know whether your machine has that capability. If it does a DME should be able to read the card. If not, no way to tell.

Have you changed eating/drinking habits over the holiday? Alcoholic drinks can make you need higher pressure.

Maybe someone else has some other ideas.

If you were feeling better, I (non medical opinion) think you will respond to treatment, but it is possible that the treatment is not optomized or there is some other temporary disturbance that needs to be identified.

Hang in there.

See if you can get data

[peggyb]

My husband might be snoring more - I'm not sure....

No alcohol. No changes in food this week when exhaustion returned.

I have Resmed M Series with c-flex and attached humidifier. Smart Card. Got my machine directly from the sleep clinic and not a DME. I don't have software to read it and don't want to pay for a doctor's visit since I'm now on a new deductible cycle.... I asked her about raising pressure in December and she said overnight titration session showed increased leg movement at the next level. She said that means it's too high. I don't know.

I'm really bummed because I felt SO much better and now it's bad again...

[Snoredog]

My husband might be snoring more - I'm not sure....

No alcohol. No changes in food this week when exhaustion returned.

I have Resmed M Series with c-flex and attached humidifier. Smart Card. Got my machine directly from the sleep clinic and not a DME. I don't have software to read it and don't want to pay for a doctor's visit since I'm now on a new deductible cycle.... I asked her about raising pressure in December and she said overnight titration session showed increased leg movement at the next level. She said that means it's too high. I don't know.

I'm really bummed because I felt SO much better and now it's bad again...

it is probably the mask you are using, was the Swift the mask used during your titration? You need to obtain a copy of your PSG, then read it carefully, it will explain the type of apnea seen, which items cause the most arousals and ideal found pressure.

1. Get a copy of your PSG.
2. Find and know what your cpap titrated pressure is and should be.
3. Determine if the machine is delivering the correct pressure.

If you have switched masks from the first few nights that could be the cause. Also when you first start cpap you can go through what they call REM rebound, this is where you have been deprived of REM sleep for so long then when you finally eliminate the events that were preventing you from reaching REM before cpap, you spend much more time there once you go on cpap. This can make you feel like a million bucks, full of energy, brain may even feel super from the restored oxygen. Unfortunately REM rebound period only seems to last from about a week to 2 weeks then it goes away. Then you spend the rest of your cpap time trying to get back there.

[kteague]

It is disappointing to feel like you are losing ground. Having your study results could be enlightening.

I'm perplexed by the doc saying that with higher pressure your leg movements increased. Were they saying that you had more obstructive events at the higher pressure? To my understanding, leg movements are either a response to the body trying to arouse from an obstructive event, Restless Leg Syndrome, or Periodic Limb Movement Disorder.

I would think one's pressure would be based upon effective control of apnea episodes, then deal with other issues. Without knowing more it is hard to say, but IF you have PLMD, it would not be uncommon that the more effectively the apnea is controlled, the more the limb movements manifest, as OSA and PLMD can mask each other. This may not be your situation, but I would at least want the doc to confirm that your current pressure during titration was as effective for your apnea as the higher pressure they tried and decided against due to leg movements.

Best wishes for a speedy resolution.

Kathy

[pedroski]

Hi Peggy,

I don't have any advice for you, I'll leave that to the other guys. I just want to encourage you. I've only been using pap for a month but I had a similar experience to you, being very excited about how sassy I felt in the morning early on and then I started feeling like I was in a coma when I woke up and being tired all day again. Like you I found that quite disconcerting. I changed from apap to cpap with EPR on my Autoset and I immediately felt better, but not sassy like I was before. Then I changed back to apap with the min level my prescribed pressure of 14 and I feel sassy again. I use the Swift mask too and really love it.

I was interested to read snoredog's post about REM rebound. Maybe it was something to do with that. I was having massive & vivid dreams, which I'm not now, or at least I'm not remembering them anymore.

Anyway, chin up, with all the good advice around here you're sure to get it sorted.

Good luck

Peter

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[JimH]

Kathy,

Just curious. I don't know much about Periodic Limb disorder or RLS, but I would have thought the better your sleep, the events would decrease. I always thought that my legs would move more so when I am not getting proper sleep. As in my brain is trying to wake me from an event or something. On another note, I do find lately that if I take and over the counter medicines, my RLS systems seem to increase.

Jim

[kteague]

Jim,

Leg movements can have different causes. If the leg movements are associated with the OSA events, effective cpap therapy should help those.

Restless Leg Syndrome is when leg movements are a response to an uncomfortable sensation that is relieved by movement. I'm not aware of the mystery being definitively solved as to what causes those discomforts that have many descriptions, such as creepy crawly, tingling, pins and needles, etc. It usually happens when one is at rest and it feels like they can't sit still, but RLS can happen in one's sleep. Some have said that cpap therapy has helped their RLS. Some say magnesium and/or iron helps.

Movements from Periodic Limb Movement Disorder (PLMD), also known as Periodic Limb Movements of Sleep (PLMS), are involuntary and occur in a very rythmic pattern. If one had very frequent awakenings from OSA, the PLMD movments may not have time to kick in (pun intended). Treating the OSA allows the body to reach deeper stages of sleep and without frequent awakenings to prevent the leg movements, they can express themselves in full effect.

For me, the symptoms of PLMD were primarily very restless sleep and painful leg muscles and joints. Also, drinking caffeine or taking cold medicines resulted in extremely fitful semi-sleep. Visually, every morning my bed was in disarray, sheets entangled even off of the bed. Many have a mild case and it doesn't disrupt their sleep stages nor do they need treatment.

Hope I didn't muddy the waters.

Kathy