I Have Sleep Apnea- How Bad, Now What?

[mkoven]

My ans doctor in chicago wanted me to get a sleep study. I complied doubtfully. The sleep study was unpleasant, and I barely slept enough to give them the data they needed.

End result-- my overall "apnea hypopneic index" is 6.9-- which I understand to be mild. BUT, during rem sleep, it goes up to 48.6/hour, which I take to be severe. My oxygen saturation was as low as 88%.

Of course, I found this out in a letter when I got home from work, so it's too late to call to set up an appointment or ask the tons of questions I have.

I don't know how dangerous or emergent this is-- as, given the slowness of getting an appointment, it may take a while to be scheduled. i assume this has been going on for a while.

I suppose the upside is that this is probably, (for once!), treatable. Maybe it will even improve other symptoms-- ncs? headaches?

I can't sleep on my side, because of my eds joints. I always subluxate a hip or a shoulder if I'm not on my back. I'm overweight, but not obese. Apparently my neck is 14.5 inches, so below the cutoff where neck size itself is a problem. I have more weight in my abdomen than I'd like.

I don't know if the eds would make the structures in my neck more likely to over-relax?

I don't really want another gizmo (cpap?), but I suppose if it improves my general health. (I already sleep with a neck and back brace).

So, what does it all mean, and should I be worried/freaked out?

[Ernie]

Hi,

You should not be worried. I got a CPAP and it helps me a lot. I use it every day and would not give it away.

[mkoven]

thanks. I have to say that getting a letter in the mail with those results and no explanation of what they meant was rather disconcerting. and i had a heck of a time sleeping last night!

I see the doctor on 3/26. I did manage to speak to him today, and he said he wasn't alarmed by those numbers. there are often more events during rem, as that's when your muscles are the most immobilized. So hopefully I'll get some sleep! He said my average O2 sat was 92-94, which is not alarming.

I'd like to tell him and his office that they should 1) probably give results in person/over the phone, not by letter. How am I supposed to know that this shows relatively mild apnea, if no one tells me?? 2) give people some context for understanding results. Otherwise I worry that I'll asphyxiate myself!

I do wish I could sleep on my side. I know I'd breathe better. It is just so hard on the hips and shoulders.

[flop]

Hi,

I've never had a sleep study but I'd be interested to know what one would show in me. Lots of people who are found to have obstructive sleep apnoea have probably had the problem for years before getting the study done. I don't know anything about how mild/severe your results are but if you have managed like that for a long time I would think it unlikely that something dramatic would suddenly happen.

As far as I understand the problem with sleep-apnoea is that when your oxygen levels drop you wake yourself up a bit to tell your body to breathe. This disrupted sleep causes sleepiness the following day and that is usually the symptoms that people complain about.

I hope the doctor explains it all properly to you - let us know what they say.

Best wishes,

Flop

[morgan617]

I'm actually leaving for mine in a couple of hours. If they didn't put a CPAP or BIPAP machine on you during the study, my assumption is, it may be you would get improvement with it, but it's not severe enough to act immediately.

They will put a machine on you during the study if you drop below or go above certain criterias. This should have been explained to you. My son has apnea, but they did not use CPAP on him, however he has it at home. His worst time is also with REM stage sleep. He has apnea and does not move at all.

I too, am interested in my results, although I've never had results to anything, no matter how severe, that anyone wanted to address, so not even sure why I'm doing it....morgan

p.s. the amount of sleep you actually got is used in figuring out the hypopneic index. It's titrated or whatever for that.

[mkoven]

I slept so little during the actual test, that I doubt they have much data for me. Four hours, tops! (and rem sleep only at the very end). I did make it into all the stages of sleep, but barely. It's hard to sleep with all those wires, under a microscope. Also, each time I needed to use the br, I had to call the tech, who turned on all lights to unhook me, had to converse, etc., which completely woke me up. At home, I am best if late-night bathroom trips are done in the dark and speechlessly.

I tried sleeping on my side last night. I definitely breathe more deeply and easily like that, but I keep waking up with sharp pains in my hips and shoulders. I try supporting with pillows around the various limbs to keep them in alignment, but still one of my eds joints will slide as soon as my muscles relax and OUCH. The shoulder I'm lying on or the one on top gets tugged too far forward or back. My hip--top or bottom--does the same. If I sleep on a wedge on my back, it might open my airway, but then my bp drops too much, and I feel faint. Oy! So I have the choice of having either my airway or joints being happy.

So I might have slept more last night, than the night before, but it was very interrupted. My joints really prefer me on my back.

What position do you guys sleep in? Any other loose-jointed people with apnea?

(My husband sleeps in a million contorted positions without pain. I'm so envious! I really wish I could sleep on my stomach, like I did as a kid, but that wreaks havoc on the neck.)

[goldicedance]

I have mild sleep apnea. My numbers re O2 saturation sound similar to yours. In fact, I only slept about 4 hours. Then, the tech came in and put me on a CPAP machine. I slept for another couple of hours and was then out the door.

The CPAP has helped me enormously...less fatigue, one trip to bathroom at night versus the 6 I used to need.

I am surprised that the lab didn't try out a CPAP machine to see if your scores improved.

If you do need a CPAP, I strongly suggest that you try out different style masks before settling on one. I find the nasal cushion one to be the best.

It takes a while to get used to the machine and the mask. My husband says I sleep much more calmly. Also, it seems that I don't have to use airconditioning in the winter to feel like I am getting air in my nostrils.

Good luck and not to worry!

Lois

[BuddyLeesWife]

Hopefully it will help you as much as it has my husband who has NCS. He has been "event free" for about 18 MONTHS - yippee, and we attribute it to the CPAP use. His apnea was "moderate" but more importantly they found that he had many (I think 165) muscle twitches occuring during the night, not severe enough to be noticeable even to me, but enough to keep him from getting to the deeper restorative stages of sleep. His fatigue symptoms began improving in 2 weeks and in about 2 months, the dizziness & lightheadedness were mostly gone.

I don't visit this site much anymore but I checked in today and wanted to share our experience. You can probably search for my earlier posts on this subject. Good luck and please give it a try.

[mkoven]

I have a feeling the sleep doc will not be too aggressive treating this, as it is still technically mild. I really wish I could see him sooner. Because there will still be another appointment to try out equipment. So it could be weeks.

It was my ans doc, though, who wanted the test. and if it makes a difference, even a minor dent in my other symptoms, then it will be worth it. And is not a drug.

It is hard to sleep now, psychologically, knowing that I have this and my o2 sats drop into the 80s. But I'll have to figure something out, or I'll be a sleep deprived wreck.

[morgan617]

The guy said I have sleep apnea, but it didn't warrant subjecting me to CPAP, although "the doctor may see it differently." He said I had some "abnormalities" but , of course, refused to discuss it. I have to wait two weeks for the results. He said he was surprised I fell asleep so easily...well DER, I am exhausted 24/7, that's the problem.

I have a bunch of rashes from the electrodes and things, but the test was easy enough. He would not tell me what my sats dropped to. I'm sure this will be another wasted effort and money out of my pocket for nothing....sigh....morgan

[goldicedance]

Did you have the overnight oxygen sat study that you do at home before you had the sleep apnea study?

Also, for both of you two ladies who just had the sleep study, did the technician see how you slept with the CPAP machine? That was an integral part of my study at Mayo.

It's a shame you have to wait a few weeks to talk to your doctor. The Mayo protocol...arrive at 9 p.m., get attached to the gozillions worth of electrodes, and then go to sleep. At about 3 am, wake you up to see how you do on the CPAP and then boot you out at 6 a.m. However, the appointment with the sleep doctor took place that morning.

I hate when you have to wait to discuss the results with the doctor.

Press on!

[morgan617]

Hey Lois, mine was over night in a sleep lab. Get there at 8:45 pm and done at 6:30 am. They even let me shower to get the goop out of my hair!

He said they don't do cpap unless absolutely neccessary. I think he was a bit confused though, thinking I was being tested because of obstructive apnea and actually it's for diaphram weakness due to PP. So he would have had to use Bi pap. I don't know if I could blow out cpap air. I didn't have any testing at home, or for narcolepsy, although he thought I might have it. I couldn't do the meds for it, so it just seemed like kind of a waste of time. I suppose it would have been validating, but if there's nothing I could do to help it, it seems a bit sensless.

So, I'm kinda glad he decided not to try it! (The cpap, I digressed there for a moment) Yeah it's always a hurry up and wait thing isn't it? I think the doctor will stay on top of it, he was actually very nice. morgan

[Sophia3]

Y'all slept better than I did 13 years ago and my insomnia was insane then as well. I only slept 90 minutes! Then they did a home study. A CPAP was called for but did not help. THEN the doctor looked over my readings and saw I had horrrible Alpha-delta sleep...sigh..why did he not tell me the first return visit?

Then I went on to sleep several times in the clinic as he 'wanted' to help me and this was pre ANS dx just CFS and insomnia. the most I ever slept was 4 hrs but 90 minutes was not enough to give answers.

I hated sleeping there but had to once a month for studies and was grateful for that..then he realized when everybody else went to sleep at 10pm I was 'naturally' awake until 2pm..and he started letting me stay up until midnight and I left at 8am when the staff did.

That was a long time ago and I was so hopeful....oh, I was not fat but lost 15 lbs after the sleep study and had mild apnea to begin with..but even on the LOWEST SETTING (.1) it blew out my ears and eustachian tubes and made my tinnitus worse (still roars in my ears to this day) and after many months, did not help me at all.

I still had alpha-delta sleep using it as well.

My sleep doc was an alleged smart cookie that flies around the country giving speeches, found cures for some narcolepsy and FM (with GHB) and went on 20/20, CBS news, Oprah, etc.

But of course, in the end, did nothing for me...Shame..he was very nice and fun and 'talked real'

[morgan617]

I think with my bad fibro, sophia, they will see alpha delta on mine too, as it's so common with that disorder.

When I had my last eeg, I had tons of beta spikes too, but couldn't find a lot of info on that. I never felt like I went to sleep, but they said I dozed off.

[dawn]

I couldn't tolerate a cpap, tried twice. Low sats while sleeping and morning headache. Have been using oxygen at 2 L for several years now while sleeping and it helps. O2 sats are normal with oxygen therapy.