hi benjamin

i dont know if you are familiar with the terminolgy of this machine and uses.

it is a machine for use to help on central sleep apnia,
i never used it nor hear the use for mg.

you should be able to find all details on the following sites, wikipedia.

wise geek.com/bibap respiratory,

they are others aslo that you can look at

best of luck

Anre

sorry i forgot to mention that by definitions i do not see this machine having any use for control; of muscular problems as cramping or pain
for these problems i have and use a tens machine

good luck

Andre

Yes. When I first had mg I used one. Very helpful when breathing was difficult. I used it at times during the day and at night for sleep apnea.
, It helped .me when I got panicky and breathing got labored. 20 miniutes on the machine and I was ok again

Good luck
Russ

Thank you. I don't have the apnea but breathing is an issue.

There is a big difference between c pap and bi pap. C pap is usually used for sleep apnea not bi pap.
Bi pap helps you inhale and exhale. C pap just pushes air in and you exhale on your own. I’ve heard it’s the exhale that gets bad during a crisis so in the hospital they will use bi pap not c pap.

The difference between BI-Pap and C-Pap is somewhat blurred. I used a C-Pap machine with a feature that dropped the pressure when exhaling and increased it when inhaling. It is not as good as a BI-Pap for MG, but I found it very helpful.

My sleep apnea was diagnosed a few months before my MG. I was having trouble breathing and went through a lot of tests including the sleep apnea one. With MG diagnosis and then treatment that worked, I lost my daytime breathing difficulties and now just use it for sleep apnea.

Generally, when I had breathing problems when my MG was first being treated, and I was pretty bad, I took more Mestinon (6-8 pills a day). But I didn't like it at night and so quit taking it about 5 pm, knowing that the machine would let me breathe easy overnight. I was trying to get rid of the vicious leg, foot, calf muscle cramps that hit overnight from Mestinon.

You need to get a prescription to get a machine through your insurance. I would ask your doctor to figure out a way to rent/test one for a week or two as a part of your treatment if you want to try.

There are lots of these for sale on craigslist or other places as many folks try them and then give them up because they are a real nuisance to get used to at night. However, they have to be set up for a person with the device programmed for you needs.

To get your doctor to let you try one of these machines, point her to this research study and tell her that others with MG have used these to give breathing relief with success.

https://www.ncbi.nlm.nih.gov/pubmed/18195139

Mayo Clinic did a research study a dozen years ago in which they tried BI-PAP machines on MG emergency room patients in crisis rather than intubation. They found that much of the time the non-invasive BI-PAP was sufficient, and of course much easier to do, much cheaper, much easier to taper off of etc


RESULTS:
We identified 60 episodes of MC in 52 patients. BiPAP was the initial method of ventilatory support in 24 episodes and ET-MV was performed in 36 episodes. There were no differences in patient demographics or in baseline respiratory variables and arterial gases between the groups of episodes initially treated using BiPAP vs ET-MV. In 14 episodes treated using BiPAP, intubation was avoided. The mean duration of BiPAP in these patients was 4.3 days. The only predictor of BiPAP failure (ie, requirement for intubation) was a Pco(2) level exceeding 45 mm Hg on BiPAP initiation (P= .04). The mean ventilation duration was 10.4 days. Longer ventilation duration was associated with intubation (P= .02), atelectasis (P< .005), and lower maximal expiratory pressure on arrival (P= .02). The intensive care unit and hospital lengths of stay statistically significantly increased with ventilation duration (P< .001 for both). The only variable associated with decreased ventilation duration was initial BiPAP treatment (P< .007).

CONCLUSIONS:
BiPAP is effective for the treatment of acute respiratory failure in patients with myasthenia gravis. A BiPAP trial before the development of hypercapnia can prevent intubation and prolonged ventilation, reducing pulmonary complications and lengths of intensive care unit and hospital stay.

Good Luck,
Russ

I use a bi-Pap machine. Not only at night, but also during the day when breathing is a issue. When asked about breathing issues by my neuro I told her shortness of breath is not the problem. It is getting air back out. I never feel like I can’t catch my breath. So this machine helps with that. It works with my own breathing-when I breathe in it breaths with me, if it doesn’t detect a breath it does it for you. Then after so many breaths it does this sucking thing like it’s bringing air out. Vital capacity I believe it is called.

Hi Benjamin, I use a Bi-Pap machine for my MG due to muscle weakness in my lungs. I also have sleep apnea and failed my sleep study horribly. I have been on the machine since May of 2018. I was waking up tired and had trouble inhaling and exhaling I was feeling more and more exhausted on top of the muscle weakness and drooping eyelids. The dx was muscle weakness of the lungs due to Mg. Since I have been using the bi-pap machine. My breathing levels have improved, but my dr. won't take off the machine. I still have days when I need my machine during the day, I've found that if I missed a night using it my exhaustion level increased. So I don't go to bed without it. It's hard enough having MG, so I try to make sure my breathing doesn't go foul.

I can also relate to what you mean about the sucking motion. The motion happens because the machine is regulating your breathing for you. That's what my pulmonary physician told me when I asked the same question. I hope this reply helps you.

Good Luck!!!

How come they are not getting your breathing issues under control? That’s a long time to have issues taking breaths without improvement.,

That is the nature of refractory myasthenia. There is a small group of us who have severe symptoms that do not respond well to known treatments. I have used BiPap in hospital but not in home setting. When I used it, it forced me to cede breathing control to machine as higher pressures force air into lungs and suck air back out. There’s a reason they call it noninvasive ventilation. I could not breath over machine. At the beginning it was a very scary feeling having to allow the machine to set my breathing rate. Fighting the machine means you can’t breath at all. Used to prevent complete respiratory failure but also to wean or keep from having to go back on invasive vent. Had to stay on until my blood gases returned to normal.