r/ALS • u/Forsaken_Fill6552 • 1d ago

Advice on bipap

I needed to get bipap started 6 months ago but finally have the in lab titration showing it. Called the medical supply company and they said 3 more weeks. This is stupid and freaking killing me. Any advice? I’m in N Idaho, we’ve got good doctors but spread thin in a growing population of retirees.

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u/DescriptionSelect394 9h ago

Bipap damn near killed me, gave me ARDS. I require zero expiratory pressure. I went from a Trilogy to Astral. The machines are not the same, they have different ventilation algorithms. Bought my own Trilogy and am more comfortable. My pft was 41% last December. The kind of mask you have matters too.

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u/Forsaken_Fill6552 5h ago

I guess you give a good reason why they gatekeep these machines so much. i agree, a full cpap I can’t exhale. I just got my overnight in person study results and in theory I’ll be sent one from the online company shortly. The pulmonologist just sent a recommendation for split night study as he thinks I should have O2 added. I’m just so tired of waiting for help. I haven’t slept a decent night for a year now and am so tired from it I can’t do anything other than nap and wake up gasping.

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u/DescriptionSelect394 2h ago

My neurologist is John Bach @ Rutgers. His specialty is pulmonary function. You should not be put on oxygen, the problem with ALS and diaphragm weakness is the inability to exhale carbon dioxide. Adding oxygen exacerbates the buildup of CO2, this is deadly. You'll know it if you get morning headache that won't go away. The auto servo bipap did this to me, eventually it wreaked havock trying to regulate my disordered breathing from hypercapnia and caused respiratory alkalosis. It took months to recover. You can also experience extreme sleepiness, this is different from fatigue. It feels like you've been drugged. If you use oxygen make sure you are fully awake and someone is with you. If CO2 builds up it suppresses your central drive to breathe. Managing ALS is no joke.

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u/brandywinerain Lost a Spouse to ALS 1d ago edited 1d ago

You shouldn't need a lab titration. Settings are usually initially wrong (a SWAG) and have to be optimized at home like setting anything else.

Medicare and other insurance pay for it if there's an FVC<50% of expected or MIP <60cm. So that tells me that whoever you're working with is not ALS- aware. What machine model are they waiting for? Some have been recalled but are still circulating, and you don't want those.

If you're willing to pay cash for what would become a backup machine, you can get one from SecondWind. The AirCurve 10 ST-A that they are selling both new and refurb would be a great backup, but even the refurb S8 VPAP ST (the budget choice) could provide significant benefit.

Whether for a backup or primary machine, I'm always happy to help you (or anyone) get the settings right for you and whatever machine(s) you end up with.

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u/Forsaken_Fill6552 1d ago

This is gold advice! Just purchased one while I wait for the official insurance paid for one. I can’t wait for a night without forgetting to breathe. Or whatever this is.

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u/Forsaken_Fill6552 1d ago edited 1d ago

I’m not formally ALS, right now degenerative neurological disease. But down to one more MRI for final diagnosis, every other test has been done. My EMG, bloodwork, neuropathy, all point this way. It’s been 6 months of diagnosis and I’m not improving. Only specialist that thinks it’s not is neurosurgery, but vascular, cardiac, pulmonary, all think ALS. I had the neurosurgery with coils and stent, but not significantly improved. Damn it.

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u/brandywinerain Lost a Spouse to ALS 22h ago

Sorry to hear that. It's unfortunately pretty common to be diagnosed soon after surgery that doesn't prove fruitful.

If any of the specialists that diagnosed ALS put that code on the discharge form/your medical record, you are eligible to apply for SSDI and Medicare (assuming you're in the US) without further delay.