low oxygen levels

05-06-2005, 06:11 PM

Hi. I have severe asthma and a primary immune deficiency so after many bouts of pneumonia my lungs are pretty fried. For the last couple years I haven't been able to stay asleep. I fall asleep okay but I wake up after an hour, usually in the middle of a very vivid dream and with a pounding headache. I had an overnight pulse oximetry which showed my oxygen level dropping to about 80% at which point my heart rate goes way up and I wake up, This happened about every hour during the test. The dr also stuck a camera down my throat and determined that I don't have obstructive apnea. It seems my lungs simply shut down and sort of forget to breathe .... now I have forgotten many things in my life - my car keys, my own phone number -- but you'd think I could remember to breathe!! Anyway, I am 49 years old and on home oxygen at night and am not a real happy camper because the sleep doc says this is probably long term. I cannot find any reference to something like this in any search I do. Has anyone experienced this or heard of it. I would like to hope that I can get off the oxygen.
thanks
Barb

05-07-2005, 12:19 PM

Quote:

Originally Posted by charleyhorse

It seems my lungs simply shut down and sort of forget to breathe .

I don't really know what this is. When I read your post, my first thought was central apnea, which is when the part of the brain that controls breathing doesn't start or maintain the breathing process properly. It is different from obstructive apnea, which occurs when the airway becomes blocked. I think central apnea usually has a neurological cause.

Have you had an actual sleep study? Or just the pulse oximetry? I hope you can find an answer. Good luck.

05-08-2005, 08:40 AM

Thanks - I did a search on central apnea and found a patient handout that does describe it as 'forgetting' to breathe when sleeping. It did sound a lot like what I have. The sleep dr didn't give me a name for this, but I've only seen him twice and I have more tests coming up. I just had the overnight pulse oximetry. Our government medical plan covers just the oximetry to begin with. There has to be evidence of obstruction or something like that to get a full sleep study. I don't think I'm going to be doing one because the sleep dr said he's pretty sure what's going on because of the lung damage and other weird health problems I have. I am doing a lot better on oxygen so I guess I shouldn't complain.
Barb

05-09-2005, 06:25 PM

hey have you done a sleep study yet at sleep clinic? my breathing is awful at night and i snore very badly but becuz i live alone. i would not have known it until i was awaken by the police banging at my door at 3 in morning. my neighbor thought that it was spousal abuse. LOL no i was just me snoring. i had a sleep study done and i'm on a CPAP/ BI/ PAP machine. it has helped when i can keep it on. check with your dr for good sleep clinic in your area

cj

05-11-2005, 08:29 PM

That's the weird thing ... I don't snore - not even a little bit apparently. Before I had the overnight oximetry I spent a weekend at a retreat with a bunch of women and I asked them to let me know if I snore (my hubby is not a good judge - nothing short of a minor nuclear blast could distrub his sleep). The ladies said that not only don't I snore, but I don't make any noise at all. The doctor at the sleep clinic said a CPAP would not help me because I don't have obstructive apnea, but the oxygen flow would 'remind' my lungs to do their thing ... or something like that. Apparently its usual that whatever I have doesn't produce snoring. It all seems rather weird to me. Is anyone else here on oxygen at night?
Barb

05-11-2005, 08:43 PM

I use CPAP at night, no oxygen. I have severe obstructive apnea and I don't snore at all. Even the technician at the sleep lab (who watched me sleep for 16+ hours) said I don't snore. I think this lack of snoring is one of the things that kept me from getting adequate treatment for so long, without that symptom, docs just don't think of apnea.

My husband also uses CPAP, and he does snore, but not as much as you would think.

Glad to hear you're feeling better.

low oxygen levels

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