CPAP still not working so did an experiment

[lullaby]

I've had some great feedback here before about my struggles with CPAP over the last two years and how i'm still feeling exhausted despite great figures (below 1 most nights, minimal leaks) and 9 hours sleep a night.

Interestingly, i did a little experiment this week that was kind of forced upon me. I developed a nasty blister on my cheek from my mask - too tight i guess - so i decided to go CPAP free for for the last few nights whilst it healed. As a result, i've been able to determine that with CPAP, i suffer from a feeling of being extremely 'stoned' (for want of a better word) during the day that really effects my ability to function. This has been going on for the whole time i've been using CPAP. Off CPAP, i'm just plain tired. My wife also told me that over the last few nights whilst off CPAP, my night twitches (plmd?) had disappeared.

Now, comparing the two, i actually find that i prefer the 'tired' feeling and can actually get more done than the 'stoned' feeling.

Don't get me wrong, i want to eliminate both symptoms but so far, no luck. I'm about to undergo my fifth sleep study and mslt in two years as my sleep doctor tries to get to the bottom of what's going on.

I should also mention that after my last sleep study a few months ago, my doctor prescribed Sinemet for the twitching (some movements were recorded) but it made the symptoms worse so i stopped using it.

If this sleep study doesn't come up with any more useful data, i'm seriously considering giving the whole CPAP thing away as it seems to be making things worse for me.

[kteague]

If you have PLMD, it makes sense to me that your legs would move less when off the CPAP because then apneas are causing arousals and your sleep isn't good enough to allow the movements to fully manifest. On CPAP the legs don't have the apneas to compete so they can fully express themselves. Does that make sense to you?

I don't know the severity of your OSA or how low your oxygen drops, but just in general I think treating OSA is priority due to what it can do to your health. That's not to say the limb movements aren't important too, but they won't cause your oxygen to drop and do the same kinds of damage as OSA.

I really can sympathize with your situation. My struggle with OSA and PLMD has been long standing and most of the time agonizing. I've had many sleep studies, and to be honest, several were a waste of time. If I were traveling this road again I would make sure my CPAP treatment was therapeutic based on nightly data then be tested in the sleep lab while using CPAP at my proven effective pressure. This is the only way to know exactly how much havoc your legs are causing while your OSA is being treated. You cannot sacrifice your breathing for your legs. Well, you can, but I certainly caution against it.

Has your doctor tried to find possible causes for your twitchy legs? Are you on any meds that could have this as a side effect? Has your ferritin level been checked to be sure it is above 50, as is recommended for patients with these issues? Has your magnesium level been checked? And while you're at it, how's your vitamin D? Some find warm foot soaks before bedtime to be helpful. I have a TENS Unit that was prescribed for my lower back and I've found if I use it before bedtime, it helps my legs a LOT. So much so that I've not taken meds for them for a couple years now.

Best wishes as you move forward to gain control over both of your sleep issues so that you can really get the sleep you need.

[archangle]

The problem isn't the "stoned" feeling or the "tired" feeling. It's the stroke, heart attack, or dead feeling.

Have you tried things like turning your minimum pressure up, reducing maximum pressure, using manual CPAP, etc.?

[sleepstar]

If you have PLMD, it makes sense to me that your legs would move less when off the CPAP because then apneas are causing arousals and your sleep isn't good enough to allow the movements to fully manifest. On CPAP the legs don't have the apneas to compete so they can fully express themselves.

I'm not 100% sure what you mean by that?
PLMS is easier to pick up on a CPAP study because the OSA is controlled. But without CPAP the PLMS is still there, it's just harder to pick up if the apnea came first or the leg movement.

Has your doctor tried any other medication for PLMS? It might be something worth asking about

[kteague]

If you have PLMD, it makes sense to me that your legs would move less when off the CPAP because then apneas are causing arousals and your sleep isn't good enough to allow the movements to fully manifest. On CPAP the legs don't have the apneas to compete so they can fully express themselves.

I'm not 100% sure what you mean by that?
PLMS is easier to pick up on a CPAP study because the OSA is controlled. But without CPAP the PLMS is still there, it's just harder to pick up if the apnea came first or the leg movement.

Has your doctor tried any other medication for PLMS? It might be something worth asking about

I think we're saying the same thing, aren't we? OP says their legs move more on CPAP, and that's no surprise to me. There are so many variables that one scenario can't possibly capture every result that could come out of a sleep study. What I am suggesting is that a diagnostic study may or may not fully reveal the severity of either the OSA or PLMD because of the masking effect - either direction. Treat only the OSA - the legs may prove to be even worse than first thought. Treat only the legs, the OSA may prove to be worse than first thought. In my case, the frequency of the limb movements totally obscured my sleep apnea in my first several sleep studies, although I clearly had sleep apnea. My symptoms were classic. They just couldn't catch it in the lab until my legs were calmed down.

During titration on CPAP a limb movement problem may be more fully realized than in the diagnostic study, however, the variables come into play again. Some people don't sleep well in the lab and much of that time is spent getting to an effective pressure, so how much time is left to really see what the legs will do? For some that may be a few hours, but surely there are those who weren't fully titrated until almost morning, if at all. That's why I believe my doctor's approach of repeating my study on CPAP at my proven therapeutic pressure for the entire study time is the best way to really know what's going on when OSA and PLMD coexist.

I'm thinking your medication comment is for the OP, not me. I'm not against meds if they are needed, but based on my experience I strongly suggest they take the steps I mentioned before going on meds, especially testing their ferritin level and getting it above 50 before starting meds. My doc wants mine even higher. From what I've read, that one step may prevent a common problem with some meds - augmentation.

http://www.ncbi.nlm.nih.gov/pubmed/22854768
http://www.ncbi.nlm.nih.gov/pubmed/14572125
http://www.ncbi.nlm.nih.gov/pubmed/20099083

[sleepstar]

Treat only the legs, the OSA may prove to be worse than first thought. In my case, the frequency of the limb movements totally obscured my sleep apnea in my first several sleep studies, although I clearly had sleep apnea. My symptoms were classic. They just couldn't catch it in the lab until my legs were calmed down.

That's interesting to know. I don't think I've really encounted that before. I think in a lot of cases the doctors try to treat the sleep apnea first if it looks to be there. More often than not I would say it eliminates the legs. PLMS would be really frustrating. Have yours improved significantly?

[kteague]

Yes, even if limb movements show up either in the diagnostic study or titration, once OSA is seen, I can't imagine a doctor choosing to treat the legs first or even simultaneously. I don't know if there are any predictors which limb movements will improve with CPAP treatment. I've read a couple people on here say they were diagnosed with PLMD but it went away once they started CPAP. Lucky ducks!

Once I began running the gamut of meds it was a roller coaster ride of better then worse, change meds then repeat - many times over. The last couple years of being off meds and solely using a TENS to treat my legs have been my best rest since way back in the 80's. Even at that, it is not perfect by any means. But compared to years of a hellish existence, this seems like paradise. If I fall asleep without using the TENS I see how really bad my legs still are. I could not possibly survive not treating my condition. Thanks for asking.

[lullaby]

Thanks Kteague. You've always been very helpful in the past with my question re plmd.

I have had blood tests run in the past but not sure i was tested for ferritin, magnesium so i will get this done. The only meds i am on are Zoloft (1 tablet a day). I ask my doctor at every visit whether Zoloft may be having any side effects however he has always claimed that they shouldn't have any adverse effects. I'd prefer not to come off them as it has been very helpful over the last few years.

I understand the health risks with coming off CPAP however if nothing can be done about my exhaustion then it seems pointless to be on a treatment that is supposed to combat the symptoms of tiredness.

[Pugsy]

Just a heads up about Zoloft. Google the side effects (and look at more than one source).

http://www.webmd.com/drugs/mono-8095-SE ... genumber=6
These stuck out like a sore thumb even though they are in the "less severe" classification..This is just a sample.

Drowsiness
Chronic Trouble Sleeping
Low Energy
Involuntary Quivering

I take a pain pill during the day that comes with a "may cause drowsiness" sticker which we would expect but I am one of who less than 1% of the people who experience insomnia with it. If I take it after 6 PM...I am up scrubbing the floors at 2 AM.

Not suggesting that you stop Zoloft but just wanted to make you aware that it is possible that it impacting how you feel during the day. Sometimes it helps just knowing that meds might play a small part in things. So not saying the Zoloft is totally to blame.....but it could be a factor in how you feel during the day.

[Sir NoddinOff]

I'd be looking at the Zoloft, not withstanding what your doctor is telling you. Here's a cut and paste of the warnings associated with Zoloft (Emphasis mine two thirds the way down):

Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders. Anyone considering the use of ZOLOFT or any other antidepressant in a child, adolescent, or young adult must balance this risk with the clinical need. Short-term studies did not show an increase in the risk of suicidality with antidepressants compared to placebo in adults beyond age 24; there was a reduction in risk with antidepressants compared to placebo in adults aged 65 and older. Depression and certain other psychiatric disorders are themselves associated with increases in the risk of suicide. Patients of all ages who are started on antidepressant therapy should be monitored appropriately and observed closely for clinical worsening, suicidality, or unusual changes in behavior. Families and caregivers should be advised of the need for close observation and communication with the prescriber. ZOLOFT is not approved for use in pediatric patients except for patients with obsessive compulsive disorder (OCD). (See WARNINGS: Clinical Worsening and Suicide Risk, PATIENT INFORMATION, and PRECAUTIONS: Pediatric Use) source: RXlist.com

[sleepstar]

SSRIs are linked to PLMs. But so are lots of things. This isn't a reason to stop it though.
PLMs is very common. 15% of the population has it.

[sleepstar]

I'd be looking at the Zoloft, not withstanding what your doctor is telling you. Here's a cut and paste of the warnings associated with Zoloft (Emphasis mine two thirds the way down):

Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders. Anyone considering the use of ZOLOFT or any other antidepressant in a child, adolescent, or young adult must balance this risk with the clinical need. Short-term studies did not show an increase in the risk of suicidality with antidepressants compared to placebo in adults beyond age 24; there was a reduction in risk with antidepressants compared to placebo in adults aged 65 and older. Depression and certain other psychiatric disorders are themselves associated with increases in the risk of suicide. Patients of all ages who are started on antidepressant therapy should be monitored appropriately and observed closely for clinical worsening, suicidality, or unusual changes in behavior. Families and caregivers should be advised of the need for close observation and communication with the prescriber. ZOLOFT is not approved for use in pediatric patients except for patients with obsessive compulsive disorder (OCD). (See WARNINGS: Clinical Worsening and Suicide Risk, PATIENT INFORMATION, and PRECAUTIONS: Pediatric Use) source: RXlist.com

That's the same for every single anti depressant. At the end of the day it's whether the benefits outweigh the risks, which they often do.

[49er]

I'd be looking at the Zoloft, not withstanding what your doctor is telling you. Here's a cut and paste of the warnings associated with Zoloft (Emphasis mine two thirds the way down):

Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders. Anyone considering the use of ZOLOFT or any other antidepressant in a child, adolescent, or young adult must balance this risk with the clinical need. Short-term studies did not show an increase in the risk of suicidality with antidepressants compared to placebo in adults beyond age 24; there was a reduction in risk with antidepressants compared to placebo in adults aged 65 and older. Depression and certain other psychiatric disorders are themselves associated with increases in the risk of suicide. Patients of all ages who are started on antidepressant therapy should be monitored appropriately and observed closely for clinical worsening, suicidality, or unusual changes in behavior. Families and caregivers should be advised of the need for close observation and communication with the prescriber. ZOLOFT is not approved for use in pediatric patients except for patients with obsessive compulsive disorder (OCD). (See WARNINGS: Clinical Worsening and Suicide Risk, PATIENT INFORMATION, and PRECAUTIONS: Pediatric Use) source: RXlist.com

That's the same for every single anti depressant. At the end of the day it's whether the benefits outweigh the risks, which they often do.

Sleepstar,

Not to get off the topic but many folks such as myself who have been on antidepressants would vehemently disagree that the benefits outweigh the risks particularly when many non med alternatives work just as well according to research.

Also, depending on which study you believe, they have a 30 to 50% effectiveness rate which is judged by a 50% reduction of the Hamilton Rating Scale for Depression. So someone could have a very high score and if it is reduced by 50%, that still is considered a success story.

And of course, the side effects aren't even being factored in which can be devastating.

Knowing what I now know about antidepressants, I wouldn't touch a crumb of them. Furthermore, I think if my apnea had been diagnosed, I would have avoided psych meds entirely.

49er

[sleepstar]

The side effects are definitely factored in. If you're having terrible side effects, your doctor will weigh it up and assess whether the benefits still outweigh this

Your statement is a little general. Major depression and bipolar disorder are serious problems that need to be addressed and antidepressant therapy is most effective.

Saying antidepressants may have some risks so someone shouldn't have them is like advising a diabetic they shouldnt take their medication because it may have some side effects.

[49er]

The side effects are definitely factored in. If you're having terrible side effects, your doctor will weigh it up and assess whether the benefits still outweigh this

Your statement is a little general. Major depression and bipolar disorder are serious problems that need to be addressed and antidepressant therapy is most effective.

Saying antidepressants may have some risks so someone shouldn't have them is like advising a diabetic they shouldnt take their medication because it may have some side effects.

Uh, I have been off medications since 2010. And by the way, if I had listened to my psychiatrist to access side effects which were devastating, I would still be suffering.

In fact, I corresponded with someone who was on a multitude of psych meds who got sicker and sicker and her doctor didn't give a damm.

Ok, provide me a link to a study not financed by drug companies that shows that antiepressant therapy is most effective.

And you are perpetuating an old wives tale by drug companies that depression is a chemical imbalance. Sheesh, the only way you can measure someone's serotonin in the brain is if they are dead.

49er