Hi Everyone,

I have a sort of emergency question for anyone who has also been diagnosed with sleep apnea. I did a sleep study last night and, no surprise, I was told that I have severe sleep apnea and my blood saturation level fell to 80. So that's actually good news in that it confirms what I was recording at home as I posted in my (way, way too long) earlier post. The problem is that I think it's due to mg and I have no way to confirm it. I have recorded really low oxy sat levels also just lying down and then, this weekend, when I flew on a plane I spent 14% of the time with an oxygen saturation level below 88% - often dipping into the 70's (I knew I always had a hard time breathing on planes!!!!). So I guess my point is, it's not just a sleep issue for me.

So here's my question - the sleep doctor wants to put me on a CPAP. I'm scared to death that having to breathe out against pressure is only going to make me weaker. He knows that I tested positive for mg and he's seen my drooping eye, etc. But when I told him about my fears this morning he blew me off and said it wouldn't make any difference, that the lungs just spring back on the breath out. My trust level of docs is at zero right now and I know that people with mg are given bipaps so the pressure drops when they breathe out. At least I think I know that! I tried doing some research but I can't find anything on the internet.

Please help!!! I would love something to help me breathe, but I don't know what to do. I feel like I don't have a doctor yet that I can turn to that I have confidence in and I don't see an mg specialist until late summer, at the earliest.

Thank you for any help! I don't know what I would do without this forum.

I know it sounds scary, but the CPAP really helps my mg! I was diagnosed with mg in 2000 and sleep apnea in 2002. I too was hesitant to use a CPAP because I thought it might tire my lung muscles.

However, the opposite is true. When my breathing is labored (even during the day), I put my CPAP on. It rests the lung muscles because it does a lot of the work for you. The muscles used for breathing fill the lungs; when you breathe out, the lungs are not using near as many muscles.

When I have had breathing emergencies and ended up in the er, they have used a bipap on me, but I really didn't notice a lot of difference in comparison to my CPAP.

I would suggest you try several types of headgear to find the one that works best for you and it will take a couple of nights to get used to having the thing on, but I can't sleep at all without it now.

Good luck and don't let this get to you! I promise it will help rather than hurt

I have both conditions. The sleep studies I completed a year ago confirm both central and obstructive sleep apnea. I was actually diagnosed sixteen or so years ago, but ignored it until last year. Results of the sleep studies showed less than two hours of sleep a night. By their scoring system, they recommend breathing assistance for anyone scoring over 5 on their system. I believe I scored 28. No talk of a CPAP, they put me directly on a Bi-Pap machine. I don't think the MG affects my night breathing too much, I just have to adjust my breathing rate to the machine until I fall asleep. My biggest problem was finding a way of getting the air in without leakage problems, after two masks, they finally came up with a headband with two soft nose pieces that fit in the nostrils. Just cannot use it if I have a cold or stuffy nose! By the way, through personal research and talking to my neurologist, central sleep apnea is neurological and seems to be fairly common in MG patients.

Hey. Is the sleep doctor a neurologist, or rather, an MG specialist?!!! No, I didn't think so. You need to probably consult with a pulmonologist and/or the MG expert when you see him. Some pulmonologists are sleep experts too. But I wouldn't wait to get help from Bi-Pap until you see the guy in August. Hypoxemia is dangerous! You need to have the Bi-Pap.

What Bi-Pap does is kind of let your chest wall muscles take a break while sleeping, so that is actually a good thing. They are starting to use Bi-Pap in MG crisis situations if it is not too bad in order to keep from intubating patients. During a crisis it's on a spectrum from oxygen to Bi-Pap (with or without oxygen) to intubation.

I'm sorry that doctor poo-pooed your concerns instead of explaining that to you. He just made you even more concerned.

Everyone's O2 stats go lower on planes. Mine do what yours do. If I sit in my chair, they may only go into the upper 80's. If I dare go to the bathroom, the dip into the 70's. Not good. How that effects you depends upon what other conditions you have (like heart disease/coronary artery disease). Keep hydrated and try not to get up! And talk to your primary doctor or a pulmonologist about it.

Your O2 stats may even be dropping if you walk too far if you are that bad off. Do you have an oximeter? Nonin is the most expensive but best brand out there.

Just do what the doc says, then your MG specialist can re-evaluate how you are doing later this summer. You need help!!!! A lack of oxygen adversely effects the brain, kidneys and heart (the most).

Hang in there!

Annie

This is so funny, because i just did a a sleep study last friday, and i didn't do so good. Well that tried the CPAP on me, and boy did i think i was dying also. My heart start beating real fast, so we tried 3 different mask, even the nose pillow, but i just couldn't do it. Well they calle me to go back in like 2 weeks, and this time i can try the CPAP, but on my side, and not on my back like the first one. Also i notice on the last flight i took which was last year, really scared me, because i was having breathing problems. I was scared to alarm the flight attendent, and i was scared to let my 15 year old no that something was wrong, because she would of started to cry. I have a friend with MG back in IL, who's on the board, and she knows a lot about this test, and CPAP.

Tracy

Hey Annie: An mg specialist around here? Ha! Not likely!!! He is a neurologist, but he's always only done sleep stuff.

Your plane oxymetry levels sound scary to me!!! Here's what I know, mostly from this article in the New England Journal of Medicine, which looks pretty solid from a statistical analysis point of view, which is all I'm good for:

http://content.nejm.org/cgi/content/full/357/1/18


(I hope that worked!)

The short story is that absolutely you're right - oxygen saturations fall. After five hours at 7000 feet cabin pressure (most modern airplanes) the saturation levels fall to a little above 94 with the lowest person at 90. They did have one person out of 502, a 75 year old woman, whose saturation level fell to 78 after 5 hours at 8000 ft and they pulled her right out of the study immediately. They also had half of the participants exercising on a treadmill for 10 minutes, and the average sat level fell to about 94 at 7000 ft.(by the way, I can't even IMAGINE getting on a treadmill at that point-yikes).

I have an oximeter that records the data and I used it this weekend and it looks like I was bouncing around between 78 and 90. Mostly a lot of ink filling in the '80's. I do feel like I'm suffocating, so I wasn't surprised.

As for the breathing machine, I'll definitely get it and use it. My concern is that the one my doctor wants me to get *doesn't* give me a break, it's going to make me breathe out against pressure, which makes me feel exhausted and out-of-breath just thinking about it. I would love to have a bipap instead but I don't know how to fight for it. I'm going to work on it though.

Anyway, thanks so much for the input, you're full of knowledge as usual!!

Juanitad: So you use a CPAP and it helps and doesn't wear you out?!? Oh my gosh, I am so relieved to hear that. You don't know. I want help breathing and I'm tired of fighting docs.

I'll let you know how it goes. I'm going to be fitted next Wednesday.

GI1607: My score was 34, so apparently I'm suffocating 34 times an hour, if I got that right. The doctor said that was really bad. Ya, I know!!

Thanks for the reply!

Tracy: Ya, ya, ya!!! That's what I mean!! You feel like you can't breathe and you try not to panic, right? And in the meantime you wonder if you're crazy. It makes me really sleepy too. I feel for you not wanting to say anything. I didn't say anything either, I just put on the oxymeter to see if it showed anything. I'm always worried people will think I'm crazy and it's embarassing to make a scene and if my kids are there I don't want to scare them too. On the other hand - I can't breathe! Arrgh.

When they did my sleep study is was planned as a "split night" study, where the 1st half was to identify the apnea, the 2nd have to find the mask and settings that worked well for me. The 1st night, I didn't hit REM until the last 2 hours and that is when I showed the severe apnea, preventing both REM and deep wave (for muscle regeration). I had to go back for the study with the masks and to determine the best settings. That's when they found that I couldn't handle CPAP and needed the BI PAP.

If they didn't do yours as a split, you might want to request another round so they can be sure you are set up with what you really need. Some people can handle CPAP, but for me I woke up immediately when the tech set the levels evenly - felt as though I was being suffocated and I couldn't breath out at all. Now that I have the Bi-Pap, I can barely sleep without it. It made such a difference in my strength and how the muscles felt when I was able to get the deep wave sleep!

Good luck. You definetly need to get on something, but if they haven't tried CPAP on you it may do no good if you're like I was.

Thank you, that is really good information to know. I have another all night appointment next week when they're going to titrate the machine and try on different masks.

I'm really, really hopeful that this makes a big difference in being able to function during the day. Thanks for the encouraging story!