Newbie- long intro, sorry.

Hello group, I've got quite a few questions. I've searched a little bit and didn't find all the answers I was looking for. Please bear with me.

I've snored my whole life. Even as a youngster my mom would try to get me to roll over and stop snoring whenever we had to share a bed. I've always been low-energy and love sleeping. I'd happily stay in bed 10 hrs a day if I didn't have a house to run.

I had my 1st sleep study in 2001. Could not sleep. I think it was in part knowing I was being watched and listened to. The room was cold and I had to keep getting disconnected so I could go to the bathroom. Long story short, they weren't able to get a good reading and I had to do the test again a week later with a sleeping pill. I was dx and prescribed a cpap. I never gave it much of a chance, I was stubborn and it was taken back after the tech saw I wasn't using it like I was supposed to.

4 yrs later, 2005 and with different insurance, I went to my ENT dr who ordered another sleep study. I still only slept for a few hours and they got a reading. Prescribed a mask and machine on a setting of 10. He knew of my lack of complying before and made me promise to give it a fair try. I wore that thing religiously every night for 6 months. If I woke up with it is another story. The nasal pillow mask was fine. The problem- major stomach sleeper who doesn't use a pillow. I put it in my closet and forgot about it.

I was dx with epilepsy after a few big seizures in 2009 and have been on meds ever sense.

Last year I decided I'm tired of the fatigue and sluggishness and dragged the cpap back out. It's a resmed escape s8. Amazon had resmed swift nasal pillows for sale without a prescription so I bought one and the optional Bella loops headgear. Determined to get it right this time, I gave it another try. I laid there for hours, unable to sleep. Night after night was the same thing. Occasionally I'd get comfy enough and snooze for a few hours but it was rare. As lightweight and minimal as this mask was I still laid there on my side afraid to move and unable to really get comfortable. Onto the floor it went. Once I'm on my belly I always fall fast asleep within minutes.

So here I am again. Family deductible has been met and it looks like a new sleep study will cost about $100. I have no idea how much a new cpap would be. I know cpap is the tried & true when it comes to treatment of sleep apnea, but what about those dental devices and surgeries? I heard those are hit or miss. Lack of sleep can be a big trigger for ppl with epilepsy. Luckily I haven't had any big grand mals, just an occasional partial seizure. KNOCK WOOD!

I don't remember what type of dr ordered my 1st studies.
An ENT ordered my 3rd. I need to see if my neurologist will order me one.

What type of dr ordered y'all's? If you are a die-hard stomach sleeper, please let me know how to deal. Is it possible that cpap isn't for everyone?

Sorry for the long ramble. Thanks for reading.

Hi Cathyann, welcome to the forum.

The stomach sleepers among us will have some ideas for you. And there are some here who stomach-sleep successfully with cpap.

What jumped out at me the most in your story is that you were trying to use what we call a "brick" -- that is, a machine (the Escape) that records absolutely no information about your treatment -- AHI (events per hour), leaks, snores, and more. Without this treatment information neither you nor your doctor have any way to evaluate whether your therapy is actually effective. So, when you go for your next machine, be sure you get a full data machine -- in the newest ResMed line, it would be the Elite, Autoset, or Autoset For Her. If for some reason you need a bilevel machine those will all be full data machines.

Most of us see pulmonologists, neurologists or even our general practice docs to oversee our cpap therapy. And truth be told, once we get through diagnosis and get our equipment, many of us manage our therapy on our own and with each other's help. We use full data machines and the free software SleepyHead to make sure therapy is on track. If you have plain old obstructive sleep apnea with no particular complications, you can do this too.*

* However, if I read your history correctly, you have not had a sleep study since the onset of the seizures, is that right? It would be a good idea to ask your doctor (do you have a neurologist?) if you should have a new sleep study -- with the seizure disorder and the anti-seizure meds I really wouldn't want you to just start using that S8 Escape because there's no way to know what's happening with it.

I'll let others offer opinions about surgery and dental devices -- but yes, success is less certain with those approaches and they are not without side effects.

Thank you for your warm welcome and thoughtful reply. I was dx with epilepsy 5 yrs after my last sleep study. I've often wondered if the two are related some how- sleep apnea and seizures.

Edited to add- yes, I see my neurologist twice a year. I don't recall if I've ever discussed my SA with him. My last Eeg showed some weird activity while sleeping..hmm.. I see him again in 2 weeks and will definitely ask about it.

Cathyann wrote:Thank you for your warm welcome and thoughtful reply. I was dx with epilepsy 5 yrs after my last sleep study. I've often wondered if the two are related some how- sleep apnea and seizures.

You're welcome. Definitely the best idea to get a new sleep study in light of the Dx since your last one.

There has been some research showing changes in the brain with long-term untreated sleep apnea, though I have never come across anything that specifically mentions seizure disorders. But the idea of neurological consequences with untreated sleep apnea does not seem far-fetched at all, especially when O2 desats have been going on for some time -- the brain needs oxygen.

I hope you'll stick around and let us support you as you give this thing another try.

My sleep doc wrote my RX for cpap. He is a psychiatrist in the sleep disorders department at the Mayo Clinic, where I go since I live in Rochester.

I can comment on the other approaches, but have no personal experience with them. When the doc told me that I have OSA at the end of my study, I said I don't want that mask on my face every night. He then proceeded to tell me about another option, which he called mandibular advancement surgery (they break your jaw to move it forward). I didn't like that idea either, but said I would think about it. As soon as I got home that day I sat down at the computer and researched all of the options, including dental devices and throat surgery. I was horrified when I read about the mostly permanent results some people had experienced, which included difficulty eating, painful jaws from dental devices, etc. When I thought about the downside to each of them along with the difficulties that some people had, I realized that CPAP, as the gold standard for OSA treatment, was something I should not dismiss without at least trying it. A week after my sleep study, I called the doc and said I'd like to try CPAP.

I have now been using my machine for nearly a year and a half. I highly recommend giving it another try, and urge you to try some different masks. You might also google "the falcon position" which outlines an easy way to manage the mask while still sleeping on your stomach. If I can find it, I will come back here and a post a link to it for you.

EDIT: viewtopic/t46879/Mask-for-A-Stomach-sleeper.html
This is a link to an earlier cpaptalk post that discusses ways to manage a mask as a stomach sleeper, in it there's a description and photos of the falcon position. There are some other ideas in there for you as well. Good luck!

Hi. I was also a stomach sleeper, maybe because of the snoring, or maybe because it minimized the apnea. I also had bad shoulders because I slept with my arms extended above my head. It took a while to get comfortable in another position, but now I almost always fall asleep on my back and sometimes on either side. You can adapt, but it will take time and perseverence. My shoulders have recovered.
Jim

Thank you Jim and Library Lady, sorry I'm just now responding.

I've dug my brick (lol) out and I'm trying to use it. I'm pretty certain the settings are wrong and when I'm trying to drift off I'll have a mini panic attack and have trouble breathing.

It also doesn't help having an unsupportive spouse. He doesn't understand why I can't just use this machine. He thinks more sleep studies are unnecessary since we already know I have sleep apnea. Things have changed and I can't take it anymore, especially with epilepsy. My seizure meds have side effects that are only worsened by my sleep disorder.

In the meantime I'll keep trying to plug along. I see my neurologist a week from Tuesday and will get my referral to a sleep lab.

Thanks again.

Welcome, Cathyann! The tough part is finding the machine and settings and mask that work for each of us. Without support, many people can't stay with it. With support, lots more can. No matter what problems arise, others here have been though it and dealt with it.

You are going to want to upgrade your machine to a data-capable one because it's the only way to find out what is happening while you sleep. What is your insurance situation like? Will they approve a new machine for you? If not, there are options like cpap.com, secondwindcpap.com and even craigslist. But you will need some advice before getting your next machine so feel free to ask.

There is some very useful info about dealing with DMEs (the people who supply the equipment if you go through insurance) here: https://maskarrayed.wordpress.com/what- ... me-part-i/

Also, if you get another sleep study be sure to tell them to send you a copy as the information in it will be helpful when it comes to tweaking your machine.

Many of us do very well with cpap therapy. Without it, my AHI was 80 at my sleep study in January - that's 80 arousals per hour on average! With cpap, my AHI is almost always less than 1. You can be sleeping much better once you get the right combination of machine, mask, settings, and software. We use the wonderful free SleepyHead software to see how we sleep and to post charts if we need advice, so we need to make sure you get one of the machines it supports. Nothing with "escape" in the name is any good - they are the cheap models that they try to give out by default.

Hello and welcome. Maybe you can explain to your spouse a little bit about the data machines compared to the one you now have. The low end machines will report to you how much you've used the machine. Not very useful info in regards to the effectiveness of the settings in resolving your sleep apnea. With a data capable machine, it will tell you how many events you had during the night that the machine did not successfully handle. It will give you an idea what type of event (obstructive, hypopnea, central) and the duration of each event. It will tell you if any leaks are significant. And so much more. Our conditions change over time, actually even from night to night. A machine set to an effective pressure on the night of a study may not be the best pressure at another time. Without a data capable machine, you could be having problems with suboptimal treatment but not know that without having repeated sleep studies. Due to your neurological issues, I would want as much info as is available. Sometimes we struggle with using the therapy because the settings aren't at their best for us. But without data one might think they are just having trouble adjusting. Yes, you could just use the machine you've got. That's probably better than nothing in the interim. But I really think you would benefit from current info and an upgraded machine.

Hi Cathyann,

I see good comments here and I would like to add some more on your CPAP therapy. But first I have some questions to make sure I understand better your situation:

2001
Do you remember more precisely why you did not give it much chance in 2001? You said you where stubborn but not much more. Was it because you just didn't want to use it due to discomfort or denial? Where you able to at least fall asleep with the machine then?

2005
More detailed but still not clear to me if you where able to fall asleep without problem with the machine most of the nights during that 6 months period?
When you woke up without the mask, was it most of the nights or just some nights?
Did you remember taking of the mask during the night or just woke up and realize you didn't have the mask anymore?

2014
Pretty clear to me!

2015 (now)
Look like you are able to drift off now but have mini panic attack and have trouble breathing.
Are those panic attack and trouble breathing new when drifting off?

Sorry for all the questions but to fight the monster in the room we have to know where it is... And there might be more than one!

So, here my thoughts.
Short terme:
I would try to find the clinical manual of your Escape S8 CPAP and look at what pressure it is right now. is it at 10?
You can have the best sleep study in the world and the most advanced data capable machine but if your can't fall asleep with the mask on, all those won't make much difference. Yes, sometime too low or too high of a pressure is hard for some people but if the S8 is set to 10 that shouldn't be "that" much of a problem falling asleep.

Try to watch TV or read a book while using the machine as long as you can (maybe 30-60min) to get used to the pressure.
Do you have trouble with your breathing in that situation?
If not, do some more and longer session like these until you feel reasonably confortable with the pressure.
When you're confortable enough you can try again to sleep with your machine and see if your panic attack settled down when drifting off.
With those "exercises" you might be able to use your S8 until you get your new machine. Also, it will most likely increase and quicken your chance of success with your new machine. And you would have defeated one monster!

As for your sleeping position, you could try the Falcon sleeping position. The challenge for me was to find the right pillow, too thin not confortable, feel like stomach position (which I don't like). Too thick not better, body feel too much twisted... BTW I never knew how to call my sleep position, at least now I have a name for it! Thanks to "library lady" for the link. It's pretty close to my seeping position and it's pretty much the only position I can fall asleep since I was a teen. But in my case, I use an second pillow for the head. I was never able to find a good fit with a full face mask in that position, nasal mask was a challenge at first but finally got it and with a nasal pillow (the P10) no the problem at all.

medium terme:
A new sleep study is probably not a bad idea since the last one have been 10 years ago and considering your new situation since 2009. But it will most likely still confirmed your OSA Dx. You will then probably have to go to a titration night and then be prescribe a xPAP. In your case, I would discuss the possibility of a split night study with your sleep specialist (first part of the night is the sleep study and second part is the titration). It can make you save time and money.
And yes you should get a full data capable machine if you buy a new one.

Long terme:
Don't give up! Easier said than done I know, but untreated sleep apnea can have serious health consequences over the years. And it's incidious, a bit like smoking at first nothing look to bad but then, the more years you smoke the more chances you have to get cancer, heart problem, etc., etc.,...

As to what kind of Dr can prescribe sleep study, your neurologist should be able to do it.
My understanding is that any Dr can order a sleep study, but will not always be the one doing the Dx. Here how it was for me:
-Asked my family Dr for a sleep study prescription. She didn't want to do it at first and I had to insist. She said that I wasn't obese enough to have sleep apnea! (BMI between 27-28)
-Brought my prescription to a sleep clinic which had a Dr specialize in sleep apnea
-Had a sleep study
-Dr specialize in sleep apnea diagnosed me with sleep apnea and prescribe me a APAP
-Family Dr was "surprise" with the result!

xPAP is the best treatment that I know of for OSA if your your compliance is good. But it’s not without challenge for many people. Some people just don't like the idea of sleeping with a mask, some have problem with the pressure at the beginning, some have wrong pressure setting (so they don't see any benefits), some have Complex sleep apnea which requires a special kind of xPAP, etc., etc. So many give up due to many reasons and/or poor support.