Apnea GONE???

[DrowsyDan]

I had a sleep study done about 5 years ago at a respected facility in the Seattle area. The study indicated I had OSA (test results below). After using my Remstar as directed (ALL night EVERY night) for over 2 years, I stopped using it, primarily because I wasn't feeling any better (concentration issues, afternoon sleepiness, chronic diffuse muscle pain, just basically feeling like crap every waking hour, as I have for about 35 years), and also because I had begun dating a woman and well, having the thing on when she was staying the night was a PITA. Yesterday, I had another full study done at a different hospital in WA state. This one indicated NO apneas or other sleep anomalies. I had taken a 12.5 mg Ambien CR before each exam, as my doctor knew, and I seriously doubt I'd have been able to sleep AT ALL in either test without it (as an aside, I find it incredible "modern technology" can't come up with some way of capturing the sleep data in a way less intrusive than all the bloody wires!). Although I am now 5 years older (58 YOA), I am the same weight, fitness level, etc., as the 1st test. Lots of aerobic exercise & a BMI ~22. What might account for this? I still have these same symptoms, if anything, they are worse now than 5 years ago. One of the things that confounds this is that the followup study w/cpap after the initial test was screwed up; their test equipment only recorded the last hour of sleep. Any suggestion on how to proceed would be appreciated.

Dan

[DrowsyDan]

I just noticed the full width of the image of my earlier test may not be fully visible unless you hit ctrl/-

Dan

[Pugsy]

Well the overall AHI on the first study was only 6.1 and only slightly worse when on your back.
Looks like your RDI of 39.9 was likely what earned you the original diagnosis.
Did your recent repeat study mention RDI?
Anything being done with the PLMD (periodic limb movement disorder)?
Now the arousals....no wonder you felt like crap.
Still having trouble staying asleep? Wake often for whatever reason? If so, likely explains why you still feel like crap.

Something is/was causing the arousals. Now what the cause might be is the million dollar question.
I have my doubts as to the cause being OSA though.

[kteague]

In addition to the report from 5 years ago that you posted, can you post the most current report? Maybe comparisons could hold a clue. As to you not being diagnostic for OSA in the recent study, if there are repeated arousals or sleep interruptions for other reasons, it may not have been a night good for capturing what your OSA events might be with more consolidated sleep. Look forward to seeing that recent report.

[D.H.]

According to that page, your apnea is only borderline. It was already pointed out that it's the periodic leg movements that are the likely culprit.

It's important to treat the leg movements. The importance of treating a borderline case of sleep apnea should be determined by your sleep doctor.

[DrowsyDan]

Thanks for the replies. I called the sleep center today to schedule a follow up appointment & get the results of the latest test. I was told both would take a couple weeks, since they won't give me the data until the clinician (I won't say doctor, since so far, all I've seen there is an "ARNP") reviews/assesses the results. About the PLM, I have taken Pramipexole briefly, but am reluctant to use this med in particular, since it's associated with earlier in the night/worsening RLS, or as they call it "Augmentation". I did seem to experience this earlier in the night aspect after taking the drug briefly. If anyone has any further comments on PLM & its treatment, particularly your experience with the differnt drugs used for treatment, please pass them on.

Thanks again,

Dan

[Pugsy]

Chat with forum member kteague....she is our resident expert on PLMD.
I will send her a note and give her a heads up that you wish to chat more.

[kteague]

Hi again. Not so sure experience = expertise, but here's what I've got. Regarding those limb movements... before using meds you are concerned about, there are a few things you can do to try and help yourself. Here's a short list.

* Are you on any meds that could be actually causing the symptoms? You could list your meds here as some members are good at recognizing them. (That would not be me.)
* Are you on any supplements that are stimulants?
* Do you restrict your caffiene intake in the evening?
* Have you had things like your magnesium, Vitamin D, and some of the B Vitamin levels checked? Talk to your doctor about testing anything pertinent to nerve and muscle function. The one we hear the most about is magnesium.
* Is your nutrition sound? Give your body what it needs to function at its best.
* Has your ferritin level been checked? For those with RLS/PLMD it is recommended the level be kept up near 100 (Just being in the normal range is not enough for us.) If one needs medicine, getting the ferritin level up prior to starting a dopamine agonist and keeping the agonist at a low dose is thought to decrease the chance of augmentation.
* Some report warm foot soaks before sleep are helpful.
* I control my legs at night by using a TENS Unit before bedtime. Doesn't work for everyone, especially those who are augmenting, but it enabled me to avoid going back on the meds for over 5 years. My TENS was prescribed for my lower back pain, and I found it helped calm my legs. They are available without a prescription.

In my previous post I mentioned the relationship between OSA and PLMD from a diagnostic perspective. There is a thing called masking, which means one issue can obscure the other. This is reciprocal. You cannot know how bad your legs are until your OSA is therapeutically treated. On the flip side, you cannot know how severe your OSA is until your legs have been quieted. For me, it took multiple tests before they could even see my OSA. My legs were so active that I didn't sleep enough to have breathing events. Because the legs are such an unknown when not wired in a sleep lab, and of variable intensity night to night, it is easier to be fact based. By that I mean treat the OSA and monitor the data so you can know for a fact your symptoms are not from untreated or undertreated OSA. Ideally then one could do a sleep study monitoring the legs while using CPAP at their known effective pressure. This is the best way to know how bad the legs are disrupting your sleep in the absence of other arousal causes. Not all doctors are keen on ordering this - they're often stuck on either a diagnostic study or a titration. Both of those are nearly worthless when you are attempting to differentiate the cause of symptoms in the presence of this dual diagnosis. If another test is not an option, filming yourself sleeping can give you an idea how active your legs are. If they continue to be active even after taking all the above measures, then one has to make some hard decisions. One must sleep. Oh, meds to make you sleep through the movements are not a good solution. If your legs are still moving in your sleep, this is just a bandaid solution. Our muscles need to rest to repair during sleep. Otherwise they can become progressively worn down. But maybe you'll be one of the lucky ones who take a few corrective measures listed above and your legs become a non issue. It does happen, or so I've heard. Another thing I've heard is that a person with OSA can have it go away, but in this case, I wouldn't hold my breath. I'm betting it's lurking below the surface just waiting for your legs to let you sleep enough for it to fully manifest. But maybe you'll get lucky with that too. Let me know if there's anything you want to discuss further.

[Julie]

I wonder if anyone remembers (my) mentioning years ago that PLMD cases were often found to be linked to Morton's neuromas, such that if the neuromas were dealt with the PLMD often disappeared, or at least improved to a great extent? There are many links on Google re this and so I don't want to include individual ones here, but you could do some research on your own and see what you think. It is valid (the link between the two conditions).

[kteague]

I wonder if anyone remembers (my) mentioning years ago that PLMD cases were often found to be linked to Morton's neuromas, such that if the neuromas were dealt with the PLMD often disappeared, or at least improved to a great extent? There are many links on Google re this and so I don't want to include individual ones here, but you could do some research on your own and see what you think. It is valid (the link between the two conditions).

[Julie]

??

[kteague]

Oops! Sorry Julie. My login had timed out and somewhere is the logging back in process I lost my post. I had forgotten about that interesting discussion regarding Morton's Neuroma. Good info to bring back around when people are inquiring about RLS and/or PLMD. Even if just a percentage of sufferers can trace their symptoms to this cause, this knowledge could be a godsend to them. Thanks for bringing this back around. Going to read and refresh my memory.

[SewTired]

Dan, Don't let them give you crap. If the sleep center is close by, show up and tell them "you want a copy of the raw data from your sleep study so that you can review it in advance of your appointment. It makes it easier to formulate questions when you have the time to look at the information first." If they give you crap, say "I insist. It is my data." Of course, you don't expect the summary - they wait until 2 days before the appointment to get to that. It's harder to get this through their thick heads in a phone conversation. Looming over the staff is typically more effective.

They used to use the excuse that patients cannot possibly interpret lab results. Be that as it may, they are YOUR results and you are entitled to them as soon as you ask for them.