desperate for help

[overwhelmed]

Hi-

Can someone please help me understand my sleep study results and recommendations?

Before sleep study I could barely make it to work without falling asleep while driving even though I slept 7-9 hrs each night. I was so exhausted that I just wanted to lay down or sleep all the time. I have had concentration/stress probs at work but always thought they were result of my stressful profession.

Night study results: 5.4 % REM and 94.6% in Non-REM indicating reduced REM sleep fragmentation. Sleep onset 35 min. REM latency 381 mins. TOTAL AROUSAL INDEX 35.1 PER HOUR. AHI about 5, worse in supine.Baseline 02 95.3%, lowest 86.6%. Apneas assoc. with brady-tachy arrythmias. DIAGNOSIS: OSA, SLEEP APNEA/RELATED BREATHING DISORDER, HYPERSOMNIA DUE TO MEDICAL DISORDER, PSYCHOPHYSIOLOGICAL INSOMNIA

Day sleep study results: time to sleep nap 1 = 90 seconds, nap 2=6 mins, nap 3=4.5 mins. Avg time to sleep 4 mins. No REM Diagnosis: OSAS, Upper airway resistence syndrome, excessive daytime sleepiness

I feel so much better since started cpap/provigil 4 wks ago. It is like a different world, but I don't understand if OSAS MILD, why such a huge improvement in the way I feel. My AHI is higher now after cpap 4 wks at 7.5 pressure than it was night of study. I don't understand. Is is possible that only 5% REM sleep could have caused my results (AHI) to be wrong night of study. With 35 arousals per hour, I don't know how the study could show anything, but I have very little knowledge at this point. Respiratory Therapists thinks pressure needs to be increased since AHI shows to be worse after starting cpap treatment. She thinks my average night AHI may have been worse than what showed up night of study. Sleep doc says pressure may be too high and getting central apneas. Please help.

I just want to feel good and was encouraged that there was hope for me. Now I am just confused. Thanks for any help or insight anyone might have for me.
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[Goofproof]

It sounds like they need to send you home with a Remstar APAP, and read the data from it, So they won't have to guess on the treatment you need. Jim

[Moogy]

It is possible that your sleep study did not accurately measure your problems. They rarely let you sleep LONG enough to see your pattern for the entire night, and sometimes you are not sleeping in your normal position during the study. Certainly many people are affected by sleeping in an unfamiliar environment, and by techicians messing with your wiring during the night!

I agree that a automatic machine at home might get a better reading. In addition, if your apneas vary a lot during the night-due to position or sleep stage, you might need an automatic machine permanently. My own pressure needs vary considerably, but I have an automatic machine so it adjusts to my needs.

Now is the time to discuss this with your doctor and see if he will agree to prescribe an APAP. If your insurance buys your current machine, you may be less likely to be able to switch units. What kind of unit do you have currently?

It is possible that your pressure is too high, but 7.5 is low compared to the settings that most people use. It is also possible that your pressure is too low.

The problem with a one-night study is there are too many variables that cannot be easily controlled. Many people have to adjust their pressure after they see how they do on the therapy.

Did you start the provigil at the same time that you started CPAP therapy? I used it for a while, and it made a tremendous difference in my level of daytime sleepiness. Now that I am no longer extremely sleep deprived, I find that it is WAY too strong for me, and it keeps me awake that night. I recently took it to keep me awake on a long drive, and I found that I do not like the way it affects me now.

Just my non-medical opinion,

Moogy

[kteague]

Ditto what Jim said. Your results mentioned your apneas being associated with arrythmia. For me, that and the question of centrals and drop in oxygen levels would justify your insisting on not playing guessing games of "try this, now try that" which eat up time. It's great that with treatment you felt improvement so soon. Just imagine how tweaking your treatment will help even more!

With a high number of arousals and not so high AHI, were there other possible causes indicated? What were the numbers for your LMs and PLMs?

I too took Provigil, and it was the beginning of "the light coming back on" but I still slept a lot. For me, the medication Concerta has helped my focus and concentration.

You're on your way to feeling better. But often whether you now stand still at less than therapeutic treatment or reach for the best is up to how much as a patient you push. Best wishes.
Kathy

[overwhelmed]

Thanks to everyone for their thoughts.

Bear with me because I am just trying to learn what all these terms mean. Here is what I was sent home with:

Remstar Auto set to fixed cpap 7.5 pressure. I am renting this machine til we decide where treatment plan will go. Does this "auto" mean that this machine is capable of the auto cpap as well as fixed cpap? Sorry, I just don't have the knowledge yet to know if I am understanding you all correctly.
I forgot to divulge that most of the 95% NON REM sleep that I got the night of sleep study was almost all stage 1 and 2 sleep. I just bounced around these 2 stages for most of the night with very little stage 3 or 4 sleep and almost no REM. Limb movements showed up as 0, but I have always tended to "jump" in my sleep according to family members. I started Provigil at the same time as cpap because I was having to worry about falling asleep driving to work. My work drive is about 1 hr each way, so I just wanted to get to and from work safely. Provigil has helped alot with excessive daytime sleepiness that caused me to be in such a fog at work. I don't feel like I need it as much anymore since I feel like I sleep better. I still take it on work days, usually just 200mg in the morning so that I don't have to worry about being drowsy driving or working. I hope to not need it eventually.
My sleep doc is partial to the dental devices over cpap if possible for me. I have tried to avoid the dental devices because I have tried the teeth grinding ones and I either drowned in drool or had jaw spasms.

[Guest]

Hi Overwhelmed, and welcome. I fully understand how difficult this all can be, especially when you factor in that our entire problem resolves around us being sleepy and having a hard time focusing!

Unfortunately there are so many factors and variables that go into determening just what exactly the base problem is, and therefore how best to treat it, that it becomes tremendously difficult to try and help decipher your specific situation on a message board.

From what limited information available certainly not being a doctor or qualified medical personnel my gut feeling is that you have extremely mild Sleep Apnea, bordering on not even needing to be treated but that the psychophisiological insomnia is causing you to not go into REM sleep. REM sleep is where the body actually recharges itself. If you don't get into REM you will feel exactly as you described. Further, CPAP or BiPAP pressure that is too high will actually increase the apneic events you experience, which correlates to what you described.

Your information doesn't indicate what sort of arousals you experienced which would be important to help determining what can alleviate them.

I would strongly urge you if you have concerns about the CPAP use or what else could have been the cause of your sleep disorders to discuss this with your physician who is going to have all the information available.

Best of luck and stay in touch!

[Guest]

Ha! I wrote my response up as you were posting yours!

You are correct that the auto unit is capable of operating across a range of pressures, for example set from 4cm-10cm it would be able to operate at any pressure inbetween those two. It determines the pressure by monitoring your breathing. It is often useful in helping to "dial in" the best pressure for someone.

[overwhelmed]

Posted: Fri Aug 25, 2006 1:06 pm Post subject: insomnia? Delete Spam

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I don't know why insomnia is listed on the results. The reason I went to see a sleep doc was because I began waking up during the night gasping for air, and I was so exhausted all of the time. Prior to seeing the sleep doc I normally fell asleep within about 20 mins of going to bed. I also felt like I slept very hard with few awakenings that I could recall. My problem was that I woke up and was still exhausted after sleeping so "hard" each night. I never even thought of apnea til I started waking up gasping for air. Once I read some of the symptoms of sleep apnea, I knew most of the symptoms seemed to fit. Excessive daytime sleepiness and tiredness where my biggest probs. It only took 35 mins to fall asleep on the night of study which seems good to me considering all of the tubes connected. I don't know where the insomnia???? in the report comes from.

[Snoredog]

trying to understand your question, but you need to put things in perspective.

you were tired before treatment because while you were sleeping you were not getting quality sleep due to SDB events (Sleep Disordered Breathing, flow limitations, hypopnea and apnea).

When you fall asleep you progress through various stages of sleep finally landing at REM. So it might look like:

Awake:
Stage1: 10%
Stage2: 60%
Stage3: 20%
Stage4: 3%
REM: 2%

You can see below how you progress through the various stages:


You may not have any REM or Stage 3/4 because you had an arousal due to an apnea event which kicks you out of REM and back to Stage2. Stage2 is were most people land from an arousal so that is why it is usually higher than others. Goal is to look at the values you have for Stage 3/4 and REM and try and improve the percentage spent there. If you do you end up feeling more refreshed.

When you go on cpap it eliminates the obstructive apnea events and allows you to spend more time in deep sleep (stages 3 & 4) and REM where you dream. If you cannot remember dreaming in a long time it was probably because you never were reaching REM before an apnea event kicked you back to Stage2.

cpap is not easy but it is just a matter of getting used to wearing the mask and the extra noise where you can sleep. That can take 4-6 weeks or longer.

It sounds like they didn't get a good read on you during your first PSG, most likely caused by anxiety of the lab (common).

If you had a titration where you wore the mask they should have come up with a pressure for you. If not, you will need a autopap to find that pressure as the others mentioned. When you go on the machine your AHI score (SUM of events seen divided by time spent) should be <5.

All them sleep latency times don't really mean a whole lot to you, they are only a gage as to how tired you are. Think you already know that as that was the reason you went. But the lab uses them to determine if you have another disorder like Narcolepsy. But you can be so sleep deprived from OSA that it skews those results. The latency to REM is important it adds another marker to show you are struggling to reach REM.

IF they (the lab) didn't get ANY REM titration, I don't understand why they gave you a autopap in cpap mode set for 7.5cm pressure. They should have set it to: 6cm to like 10cm in autopap mode so it could find your correct pressure and offer you some more sleep. The chance of 10cm causing problems from being too high are extremely low.

Your sleep should settle down as you obtain partial sleep and get rid of some of the sleep deprivation.
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[overwhelmed]

Thanks for the comments and explanations. The sleep doc ordered the cpap thru the local Respiratory Therapist. I don't know why he ordered fixed rate 7.5 instead of auto to figure out what I needed. He did say my obstruction was due to a defective gene I was born with. The weight I have put on the last couple of years I am sure didn't help, but I have been too tired to even think about exercise. Hope to get the exercise going soon since I definitely feel better already. I guess sleep doc thought 7.5 fixed was going to be just right. He did give Resp. Therapist authority to adjust pressure, which she plans to do next week after another look at the data. I have been fighting with the masks, so maybe doc thought had leaks, etc and he wanted a little more time on 7.5 to see what happened. I don't know but RT is ok with doing whatever adjustments, up or down on pressure, is needed to eliminate episodes. I have not bought machine yet, because I wanted to make sure this was gonna help first. It sounds like my remstar auto can do fixed or auto-cpap right? So as long as when I buy a machine we get one like that I will be ok, correct? Thanks

[Moogy]

Yes, the RemStar Auto can do either fixed or Auto. It is a highly recommended machine, and you would do well to keep it if possible. For a person who has difficulty finding the right pressure, or who cannot be properly titrated, these auto machines are exactly what the doctor SHOULD order!

Ask your RT if he/she will set this machine to auto mode for you, and if not, ask your doctor if he will prescribe the auto setting. (I could tell you how to do it yourself, but at this point, you probably need to involve your medical providers, if only to keep your insurance company happy.)

Just my opinion, take it or leave it,

Moogy

[JCraig]

You certainly shouldn't hold down the left and right arrow keys while plugging power into the REMStar.