I find that a cpap works for me. I have had to use a bi-pap at the er though when my breathing was really bad. Sometimes it is difficult to get your insurance to approve a bi-pap unless you sleep study supports it.

Good luck!

Juanita

My cpap has c-flex which means that the pressure temporarily reduces when it senses exhalation and this works quite well for me. I can adjust it up or down depending on my difficulty exhaling.
I had bipap when I was having trouble exhaling against cpap in the ICU, but I couldn't tolerate it because I could not keep up with the rate they set it on and it felt like my lungs would burst.
Given the correct settings it would probably be beneficial to have bipap. My pulmonologist suggested it, but given my bad experience with it, I declined.

I received a call from the pulmonologist office. He read my sleep study results and changed the test to a BIPAP. I am relieved, since I am so much worse on exhale. My lungs even crackle on exhale and I do not have any congestion. I will complete the sleep study tomorrow night and my IVIG starts on Sunday. I am going to ask for the BIPAP with humidifier and nasal cannullas. I can't wait. I feel so weak and so tired and I broke out in a rash on my face last night like a lupus rash. And to make matters worse my teenage daughter is being very bratty - not helping shovel snow, won't help me with the grocery shopping. I feel like I should go out on disability and cannot work anymore. I hope IVIG perks me up.

Sorry to vent
Thanks
kathie

I think you made some wise choices. My dh uses the nasal cannula thing with a built in bite guard, since he clenches and grinds his teeth, too.

Sorry about your daughter's behavior. I have a 16 year old dd as well, and know all too well how challenging they can be. Is there anything you can do or remove as a "motivator?"

I think your self-assessment about disability sounds reasonable as well. From what you have written on here over the months, you sound very much like someone who would qualify for SSDI. I know it's an excrutiatingly difficult decision--until one day it isn't. You will know when that day comes. Keep your heart open to all the possibilities.

Good luck with the bipap!

Glad you are getting what you need. Sorry for the personal problems on top of everything else.
Hope Ivig works for you, too.

I completed my sleep study. Without the BIPAP, i was up and down all night between the bed and recliner, had 22 episodes of sleep apnea and O2 levels down to 84.

With the Bipap, I slept through the night, and never had to go to the recliner. My lungs have stopped crackling and I even can breathe better during the day. The pulmonologist put in the script for the BIPAP and I can't wait to get it. I am getting the nasal pillows with a humidifier.

Thanks for all your help
kathie

Oh, one more thing. My last chest xray showed linear scarring on the lower left lung. I had a chest xray 2 years prior for surgery, the surgery that started my MG and all was normal. I looked up the scarring on the lungs and the only thing I could find was fibrosis or atelectasis. They said it is when the air sacs don't fill. One of the causes they said was neuromuscular and they gave the example of myasthenia gravis. Has anybody ever heard of this or experienced this? I guess that was my lung crackling sounds. WHich is better this week after bipap.

thanks
kathie

Pretty amazing results. Hope you're feeling a lot better soon!

I am still waiting to be contacted by the health agency about the bipap. I hope you don't think me a pest, but I am concerned about my lungs crackling. My last chest xray showed linear scarring on the lower left lung. I had a chest xray 2 years prior for surgery that was normal. I looked up the scarring of the lungs and found fibrosis or atelectasis, which they said is when the air sacs don't fill. One of the causes they said was neuromuscular and they gave the example of myasthenia gravis. Has anybody ever heard of this or experienced this?

Also, I went to the rheumy yesterday. He wants to switch me from effexor to cimbalta to help with the pain. Has anyone ever taken this with MG. He said my rash was livedo reticularis which is associated with autoimmune diseases. Please let me know if you ever experienced this, particularly the lung scarring and crackling. I start my third and last dose of maintainence IVIG today. So far no bad side-effects.
thanks
kathie

I have taken cymbalta and it seemed ok.