not just rls or not just apnea but..

[lynneat]

My husband stops breathing...then shakes THEN restarts breathing. ALOT...about every few seconds. WITH movements...sometimes severe.
Then got a cpap. Movements milder but shallow breathing and he is sooooo tired and sleepy regardless of the amount of sleep he gets!!11 His eyes ache. I've contacted mayo and johns hopkins. Mayo invited me to make an appt but can't say they know anything more than Ohio docs! I need more so he will go to out of state docs since we've found no help here. Only this abstract and I can't locate the docs who wrote it. I am so very afraid he will stop breathing all together. His brain won't send that signal...something bad....I'm so anxious!
Here is the abstract. Thanks anyone who has more than rls and apnea...God bless.
Sleep. 1996 Nov;19(9 Suppl):S117-22.
Tiredness and somnolence despite initial treatment of obstructive sleep apnea syndrome (what to do when an OSAS patient stays hypersomnolent despite treatment).
Guilleminault C1, Philip P.
Author information 1Stanford University Sleep Disorders Center, Palo Alto, California 94304, USA.
Abstract
From a database of 4,129 patients with sleep-disordered breathing (SDB), we found 207 subjects (43 women) that still complained of daytime tiredness, fatigue, and/or sleepiness despite treatment. In 25 subjects the sleepiness developed 1 to 36 months following treatment and was related to noncompliance (8 subjects), significant weight increase and/or inappropriate treatment (10 subjects), or development of new medical problems (7 subjects). In the remaining 182 subjects, sleepiness was noted within 1 month after what was judged appropriate treatment for SDB. In this group, the reason for persistent complaint was divided into four categories: 1) inappropriate treatment as a result of not using the measurement of esophageal pressure (Pes) in the initial diagnosis (41 subjects), 2) nonfunctional treatment (3 subjects), 3) associated narcolepsy-like syndrome (2 subjects), and 4) emergence of obesity and/or periodic leg movements as significant factors (135 subjects). The 135 subjects in this last category could be subdivided into three subgroups: 1) younger subjects, severely overweight with lower mean nocturnal saturated arterial oxygen (SaO2) values; 2) older subjects, of normal weight, with high numbers of periodic leg movements (PLM); and 3) moderately overweight subjects, with a combination of PLM and lower mean SaO2 values than expected. Treatments were aimed at eliminating the identified problems; they included standard medications for PLM and nasal bilevel positive airway pressure (BiPAP) for low SaO2 measurements. These treatments were not effective in specific cases, and stimulant medications had to be prescribed.

PMID:9122568[PubMed - indexed for MEDLINE]

[ViewsAskew]

Many people with apnea have leg movements that are called PLMS (periodic limb movements in sleep). These often go away with CPAP, but not always. Also, are you sure he has obstructive sleep apnea and not central apnea - which is caused by the brain instead of an obstruction in the throat?

Has he had a second sleep study WITH the mask? This is the ONLY way to be sure that the CPAP is set correctly. It may not be strong enough and it needs to be increased. This also would show if the leg movements are involved.

[Rustsmith]

Lynneat, the doctor that you say that you cannot located is Christian Guilleminault. He is a professor at the Stanford School of Medicine in California and was a founder of the Stanford Sleep Disorders Clinic.

My wife used to stop breathing a lot before she got her CPAP machine years ago and I had the same fears about her completely stopping. I would try to match my breathing with hers at night and found I couldn't hold my breath that long. For her, the machine resolved the sleep apnea that was causing her to stop breathing and she immediately started to feel better. A question about your husband is whether he is still stopping breathing while on CPAP. If he is, then either the pressure on the machine is too low or it is too high. If it is too low, then the treatment is not effectively controlling is sleep apnea. If it is too high, then he may be getting the Central Apneas that Views referenced. If it is centrals, then he may need to move to a more expensive machine. Either way, you need to get this resolved because both regular apneas and centrals have significant health risks associated with them.

As for the leg movements, a laboratory sleep test should be able to resolve whether this is PLMS are simply a startle type of reflex associated with the arousal that triggers him to start breathing again. If it is PLMS, then he may well be like me. I have both mild sleep apnea and PLMS plus WED. I specifically asked during the visit to the doctor following my lab test if my PLMS and apnea was two separate conditions. The answer was Yes. So now I take pramipexole for the PLMS and WED and use a CPAP machine to treat the mild sleep apnea.

[lynneat]

WHAT lab tests for PLMS? They put electrodes on him during the sleep study. Not that...labs...you mean blood work? What blood work?? They tested iron only ferrous I think it's called. He complained...the doc said to give it time...call in a couple 2-3 months. SORRY not GOOD ENOUGH! It seems to be too HIGH. His breathing is FORCED and no normal relaxed hesitation!!! She's not listening! And she's from a top place in Ohio. We need help here and fast! Thanks Steve.
Yes Ann the second sleep study was with a mask. Yes the doctor at Stanford has given me information which I am very greatful for but we aren't there yet. Maybe you all can share and save time. It's hard when you live in Ohio and no docs here....
Here is what I said....

Height: 5;9" Weight: 245-250 Age 68.

His comment: Pressure is set at 10. He feels that 10 is way too HIGH because he's fighting the machine ... his breath is not happening normally ...he feels he's not getting enough oxygen and seems like 'panting' instead of breathing.
The humidity level is set at 2. It was at 4 but that was too much humidity.

He was told the pressure could be lowered to 8 but after a while of trying it. It's not working well.
------------------------------------------------------------------------------------------------------------------------------------------------------------------------.
Last (second) sleep study 2/14:

OSA: The pressure when they noted that the snoring stopped was at 8. PLM arrounsal was 1.9. Average oxygen saturation was 90%. Minimum oxygen stturation was 64%. 12% of sleep time was with oxygen saturation below 90%. Sleep time broken into two parts. The first part was 97 minutes (without CPAP) and second part was 5 hours with the CPAP. CPAP titration was initiated at 1:18AM and ended at 6:20AM. Snoring was eliminated at a CPAP setting of 8 (CMH20). Mean oxygen saturation during study was 92% with a minimum of 86%. CPAP was done with a medium resmed mirage FX nasal mask without chin strap.
------------------------------------------------------------------------------------------------------------------------------------------------------------------
Previous sleep study a year before the second one (1/2013):

OSA: Average oxygen saturation was 90.9%. The lowest was 55%. PLM index with and without arrounsal was 1.7 events per hour. This study they did NOT use the cpap mask. Total sleep time was 315 minutes.
-------------------------------------------------------------------------------------------------------------------------------------------------------------
(I see him move every 10-20 seconds WITH the CPAP and he's breathing but obviously not getting rem sleep. VERY tired the next day. He moves WITH OR WITHOUT the CPAP.) Without CPAP he stops breathing and it's like the brain says 'body move some enough to make him restart breathing... because he moves...then resumes breathing. One time this message doesn't get conveyed...I fear what will happen! WITH CPAP he moves but doesn't stop breathing...BUT doesn't breathe normally (see his comment above/sounds like he's panting, not breathing. He doesn't seem to be getting good sleep. His eyes swollen and achy and very tired in the morning).
Breathing is not normal with the CPAP...forceful with little hesitation between breaths. NOT using CPAP it's less labored and there IS hesitation between breaths. BUT in the MORNING his breath is more normal (using the CPAP)...my observation is that I have to really check as it seems I don't see him breathing AT ALL. Very shallow breathing.
This is what I notice and what he feels.

Well there it is...maybe more info that you all know about...maybe not. I pray........we have to get this fixed...NOT WAIT A FEW MONTHS! Thanks dear people. I appreciate your time.

[badnights]

This is very scary for you. You're on the right track, keep insisting that someone address the pressure issue. Be the squeaky wheel.

[ViewsAskew]

We really aren't apnea experts here. I honestly don't know what else to say except to reiterate what Beth said. Keep after them.

[Rustsmith]

lynneat, about my previous posting, there are two different ways that sleep apnea tests are run. Many insurance companies like to run home studies where you get a modified CPAP machine with some electrodes to sleep with for one or two nights. These tests will not pick up PLMS. The more complete sleep studies are run in a clinical setting. In these tests you are covered with wires, including a couple on the legs to detect muscle movements during the study. The fact that they reported a score for PLMS indicates to me that his test did include the electrodes on his leg.

As for his CPAP machine, a question is whether his machine has the the capability of reducing the exhale pressure (or pressure relief). The different machine manufacturers use different names for this, including C-Flex, E-Flex and EPR. If the machine has this feature, it might be turned off based upon his complaints. There are usually three settings, 1,2, and 3. These correlate to a pressure reduction between Inhale (the number he has now) and the exhale pressure of 1, 2 or 3cm.

If he feels the pressure is too high, then the pressure relief is probably not turned on. My settings are very similar to his and turning the pressure relief from 1 to 3 made it much more comfortable and felt much more natural. Sometimes this is a setting that he can change himself and sometimes it is something that you may need to go back to the supplier to change for you. (If you feel comfortable with making the changes yourself, there are instructions available on the Internet for doing this. Just search for Clinical Instructions Manual and the make and model of his machine).