Bi pap, breathing difficulties and PLS

[ShiftKicker]

Hello-
It was recommended by two of my doctors that I get another night time oxymetry test due to some issues I've been having (night time coughing, intercostal cramping, headaches). I don't believe it's breathing issues, but more likely minor GERD due to all the drugs I've been prescribed- but what do I know? I had the in home test (finger clip, nasal tube thing, heart monitor) about 4 months ago, with no issues at the time.
My question is in reference to various other mentions from the many experts on the forum. It sounds like it's not so much an issue with getting enough oxygen, so much as it's trouble with expelling co2 that seems to be the problem with those with mnd related sleep/breathing issues. If the sleep study (in home) monitors oxygen levels, is that sufficient to figure out if co2 is an issue? I confess I have no idea how the thing works. If it doesn't, how can co2 levels be measured whilst sleeping?
Over all, with regards to PLS (umn issues) specifically, how would this disease affect the body's ability to expel co2? Yes, I have intercostal cramping, but I figured that was due to coughing, which was due to stomach acid irritating my throat. I'm questioning the necessity of the testing, frankly. I'm tired of the medical interference in my life and would just love to have a week, let alone a whole month, in which there was not some form of official medical "thing" to which I must attend.

cheers

Fiona

 

[lgelb]

If the oximetry includes capnography (CO2 measurement; some home setups do), you're hitting both. If not, you're not. But as recently discussed, depending on which muscles are weakest, MND breathing problems can encompass both not breathing in enough and not breathing out enough. The nice thing about BiPAP is that it addresses/balances both, for quite a while, if configured properly.

Ask about the actionability of the test. Are they thinking BiPAP? Asking what threshold(s) they would use and how close your last results were might provide a hint, in conjunction with how different you feel now vs. then. Of course, I don't know much about things in Canada, but here, all this testing is for people who need insurance to "cover" [sic] machines, for justification, not because the docs don't want to write you one. If it's just that, anyone w/ MND can get an rx tomorrow.

An ABG might also help see where you stand in terms of long-term effects; have you had one?

As for UMN breathing problems, you can imagine that muscles that are cramping and/or coughing are not optimally involved with inhalation and exhalation. So it goes potentially either way.

 

[ShiftKicker]

Thank you-
No, I have not received an ABG test (I had to look that up. Thanks, Dr Google!). I very much doubt I need any breathing equipment, frankly.

I'll make note of those questions, though. Apparently my referral for a sleep study has been sent to a neurologist who runs a hospital clinic (as opposed to a commercially run one), so I have more faith in his understanding of MND issues, plus he won't be motivated by the desire to sell me any equipment. We still need a prescription for any breathing equipment here in Canada before receiving any coverage. As I don't have obvious breathing issues, I don't think the doctors will write one without testing.

Thanks again

 

[lgelb]

Yes, I'm sorry if I was unclear -- you need an rx for coverage here, too. Generally when someone is heading toward an SVC or FVC of 50% or so and/or have symptoms suggesting it, docs write it. Decreased sats and/or increased CO2 are signs, pH is another in the ABG, etc.

If you have difficulty sleeping due to coughing, cramps and such, getting into deeper sleep one way or another might be a good thing for you, as things are less likely to wake you the deeper you are, and many of us are short on slow wave sleep. Drugs, BiPAP, mucus reduction, herbs, bodywork, etc. are all valid strategies for the right situation. The "poor person's sleep study" is a free or $1 app called Sleep Cycle, if you have an i-device.

 

[Trippy]

Hi Fiona,

I am also scheduled for a sleep study but for different reasons. I had a bad reaction to Baclofen this past November--woke up dozens of times a couple nights in a row gasping for air, which was pretty scary. I had just gotten up to 30 mgs on my second attempt trying this medication and promptly decreased the dose the next day which alleviated this side affect. I think it caused apnea the first time I took it as well, I just didn't notice it as much. Hydrocodone also made me stop breathing at night when I took it after knee surgery in 2010.

My doctor told me to stop the medication which I did. It didn't seem to give me any noticeable relief anyway. He also said there is a link between PLS and sleep apnea but I've never read anything about this. I don't have any swallowing or breathing issues during the day.

I'm heading to NIH next week for the first time to take part in their on-going study on 'The Natural Progression of PLS.' I'm wondering if they'll have any insights. I'll let you know if they do.

Take Care,
Kathy

 

[ShiftKicker]

Many thanks, Kathy. I also found Baclofen the cause of extra breathing issues. As soon as I stopped taking it, the issues were reduced. I would be very interested to hear what you learn at the NIH.

Safe travels!