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Concerned about misdiagnosis - Aisha - 10-22-2016
I know this is long but if anyone can give me some advice I am lost. I am thinking of just giving up on living a normal life. I have already had to quit my job and I am just lost.
I was diagnosed with obstructive Sleep apnea in Early September. I have been using my CPAP since mid September and if anything it has made the situation 100X worse.
I was sent for a sleep study due to fatigue, sleepiness during the day and constantly waking up all night. I suspected RLS and I still do. My insurance would not cover a sleep study in the center, they would only cover an at home study with the electronic device. This and the fact CPAP is making things worse not better is why I suspect a miss diagnosis. I do not remember the numbers but the doctor Diagnosed me with mild to moderate sleep apnea.
So my question is do those at home monitors work??
I am so frustrated I have always slept on my side and I literally have to move. My husband says I generally will roll from side to side once or twice an hour all night. He loves the cpap because he says I rarely move. The fact is he is right but of course, I do not sleep either. I just lie on my back stare at the ceiling. I will turn on my side and a few minutes later my mask will start leaking and making a horrible sqeaking noise, so I will roll back on my back and stare for a few more hours. I CAN NOT sleep on my back. Trying to sleep on my back is like torture to me. And since all the studies show sleeping on your side is better if you have sleep apnea I just do not know why they do not design the masks with that in mind.
I have tried two different masks and in all honesty I alternate back and forth in frustration. The first is the "dreamware" mask. This would be nice if it would actually stay on my face. I believe it is too big but the supplier says it is the right size. I have to tighten the velcro down seriously to keep it on but the head band keeps slipping to the top of my head. My second mask is a Resmed full facemask that I got because I had a cold and have a deviated septum and so I can only breath on one side. The full mask also seems too big because it leaks at the top of the nose.
In my frustration I am generally only using my CPAP for the minimum of the 4 hours required by my insurance for them to pay the bill and I am NOT sleeping during that time. I use it and lie staring at the ceiling for for hours and then in frustration take it off and sleep until noon.
The frustration and sleeplessness forced me to quit my job when I started to fall asleep at the wheel during my hour long commute to and from work. I was already struggling with the commute and sleepiness but I actually started falling asleep at the wheel.
I kept using the machine for the 4 hours thinking that all I needed to do was get used to it and would help. I do not have an appointment until next month. But I do not think I can manage for another month.
RE: Concerned about misdiagnosis - Ockrocket - 10-22-2016
Welcome Aisha.
I can't sleep on my back either.
For me, the Fisher & Paykal Eson mask works well, it took me a couple of weeks to get the strap adjustments right, and to learn that the plastic frame actually shouldn't be sitting against my forehead, but to have a gap about the thickness of my middle finger.
It takes time to acclimatise to using a CAP machine and wearing the mask, for some people it takes longer than others do.
Keep reading the various threads and topics in this forum, and ask questions as you need to.
You will eventually get it sorted as to what works for you.
Ock. [aka Steve]
EDIT:
Try to make fun of the challenge.
![[Image: 20160908_100711_zpsimrhbrwa.jpg]](http://s814.photobucket.com/user/delicabug/media/CPAP/20160908_100711_zpsimrhbrwa.jpg.html)
RE: Concerned about misdiagnosis - christinaleigh - 10-22-2016
Can you call and talk to your doctor prior to your appointment?
I used the dreamwear and I am an active sleeper. It leaked a lot because the soft silicone would squish in when I went side to side. I switched to the nasal pillows (Resmed P10) and the last 5 nights have been awesome!!! I do have to use a chin strap because my mouth drops open at night, but that hasn't bothered me at all.
After a week of using the CPAP alone, I called my doctor and discussed my sleeping movements. I did have a lab study to confirm my self report, but self report and symptoms are often used by doctors to make decisions. My doctor did prescribe me something for RLS. I did not go in to have this discussion, but did have a phone conversation with my doctor. Some people are dual diagnosed with sleep apnea and other things. Treating the RLS just this week in addition to the CPAP, I have gone 3 nights without waking up and getting out of bed. I think these are the first nights in 20 years that I haven't gotten out of bed in the middle of the night!
I really wanted to wait to treat for RLS until using the CPAP longer, but my movements and trouble with the hose/masks was making it hard to adjust to the CPAP. Compliance with the CPAP is difficult enough....the constant shifting of the mask, hose, headgear due to extreme activity was making it extremely difficult for me.
If they won't talk to you by phone, you may need to schedule an earlier appointment. I would also consider another mask refit.
RE: Concerned about misdiagnosis - PaulaO2 - 10-22-2016
RLS, Restless Leg Syndrome, does not happen in sleep. It is a daytime thing. Unless you are having symptoms during the day, that is not the issue. Many people experience symptoms late in the day just as they lay down to go to sleep but it does not cause movement during sleep.
Periodic Limb Movement Disorder (PLMD) is a sleep disorder characterized by jerking arms and legs during sleep.
One difference between the two is RLS movement is voluntary. It doesn't feel voluntary since the need to move is so dang urgent! PLMD is not voluntary. Some of the twitching is quite violent. I once kicked my 85lb Rottweiler up and over the footboard of the bed. The other difference is PLMD involves the arms while RLS does not.
The good news is that PLMD can be caused by apnea events. Once the apnea events are under control, the PLMD decreases and/or goes away.
As for masks, keep trying different ones. Some of us have tried a lot before we found one that worked. Your local supplier may have a mask trial option where you try a mask for a week or so. You can give it back if it doesn't work and try another. If they do not, there are several online suppliers that have a fee you can pay as "insurance". You can return the mask and get all your money back but that fee. For example, Supplier #26 does this.
Now, here is something for you to try. Sit up with the mask on and the machine on during the day. Get used to wearing it. The sensations of it. Watch YouTube videos of how to adjust the mask to make sure you are doing it correctly. They usually have tips and tricks, too. Anytime one of my masks is giving me grief, I go watch a video to figure out what I did wrong in reassembly. Anyway, refit the mask, put it on, adjust it, turn on the machine, and settle in with a movie or a book. Heck, lay down and try to nap. Anything to get used to the sounds and sensations of the mask and air.
Next, which machine do you have? The name of it should be by the power button. Should say Autoset, Elite, or something like that. You must have the Autoset since you have a pressure range listed but lets be sure. Meanwhile, download and install SleepyHead software. http://OSCAR Official Download Page ----> CLICK HERE ./ This software will allow you to view the data on your machine.
And it is okay. We'll help you get this figured out. Keep working at it. I know it is frustrating. I know it feels as if you've gotten worse, not better. But you are here now and we'll see what we can do together.
RE: Concerned about misdiagnosis - KSMatthew - 10-22-2016
Interesting comments about RLS. I didn't know a lot about it until your post.
I found this explanation about RLS and PLMD and their differences:
http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm
There are a couple things to consider: The at-home test is more of a screening to see if you have enough apnea symptoms or other indications to make it worth the trouble to follow up. A full-blown sleep study will be able to detect other issues that might be interrupting sleep. It sounds like your insurance company is wanting to do the minimum, and it isn't surprising. Your doc might be able to convince them otherwise.
The other thing is that the CPAP might actually be doing its job. Find the sleep study numbers that were used to diagnose your OSA and then look at the reports from the machine. Have your AHI numbers actually improved? If so, the CPAP worked and there might be something else going on.
And yes, getting used to the mask is hard work.
RE: Concerned about misdiagnosis - Sleeprider - 10-22-2016
You should obtain a copy of your test results and the scoring. It would be important to know the number and type of apnea and other events that were detected. If you do manage to sleep, your machine will provide therapy details including any events that might occur as you sleep. If you have a high treated AHI, and especially if you are having central events, then a different treatment strategy might be needed. Download #Sleepyhead, and at least you can take a look at what is going on and we might be able to help guide you to more comfortable therapy.
Considering the problems you are having, you should try to move your appointment up as soon as you can get it. Clearly if you've quit your job and are unable to function normally, this is not working.
RE: Concerned about misdiagnosis - Dreams of Green - 10-22-2016
Aisha, I went through something very similar to you, the first month or two was very difficult and I actually felt more exhausted because I couldn't sleep well. But once I adapted the benefits became tremendous. I can't emphasize this enough - finding the right mask and getting the right fit is huge. And take control of your therapy and become active here. Most of the medical suppliers simply don't have the time or knowledge to help. If the masks aren't fitting right they aren't fitting right, you've only tried two, keep looking.
I love the Dreamware mask but for many people it comes off too easy. If you already have the default (medium) frame, I don't think there is anything else to try. If for some reason they gave you the large frame you should try to medium.
I would try some other lightweight masks. I would research and see what looks appealing to you. There are other factors that can be tweaked as well, but it sounds to me like right now the mask should be your focus.
Also, I do think the diagnosis is very likely the correct one, it sounds like classic apnea.
RE: Concerned about misdiagnosis - Mosquitobait - 10-22-2016
(10-22-2016, 11:30 AM)PaulaO2 Wrote: RLS, Restless Leg Syndrome, does not happen in sleep. It is a daytime thing. Unless you are having symptoms during the day, that is not the issue. Many people experience symptoms late in the day just as they lay down to go to sleep but it does not cause movement during sleep.
Periodic Limb Movement Disorder (PLMD) is a sleep disorder characterized by jerking arms and legs during sleep.
One difference between the two is RLS movement is voluntary. It doesn't feel voluntary since the need to move is so dang urgent! PLMD is not voluntary. Some of the twitching is quite violent. I once kicked my 85lb Rottweiler up and over the footboard of the bed. The other difference is PLMD involves the arms while RLS does not.
Don't know where you are getting your definition, but I was diagnosed with RLS (not PLMD) and RLS movement is both voluntary and involuntary. Wakes me up at night over and over. I don't have any arm movement at all.
My advice to the OP is to call the doctor and report that you are not being helped by the machine. There is no reason for you to continue to suffer without at least attempts to modify the problems. Whether there is anything they can do about it is another thing. I'm on my second med and it's not really helping.
The biggest problem with the Dreamwear isn't so much that it's leaking as it is blowing on the sheets making a noise. But I do agree with you - if it is sliding up the back of your head, the mask frame is too small. Return to your DME and tell them that they either need to come up with a solution or give you a larger frame that FITS.
RE: Concerned about misdiagnosis - Dreams of Green - 10-22-2016
(10-22-2016, 04:26 PM)Mosquitobait Wrote: But I do agree with you - if it is sliding up the back of your head, the mask frame is too small.Did you mean to say too big?
RE: Concerned about misdiagnosis - PaulaO2 - 10-22-2016
I need to update my brain's archive. It has only been in recent years that they have shifted RLS into more of a sleep disorder and believe people continue to have issues with it after they fall asleep or cannot go to sleep due to it. I will not argue with you on if the movements are voluntary or not. I will argue, however, that far too often doctors mislabel patients with RLS when they mean PLMS and vice versa.