Wildly fluctuating o2 levels
I’m experiencing wildly fluctuating o2 levels on finger oximeter. This morning already I’ve been everywhere from 71 to 99, especially while standing still.
I went to the ER June 3 with this and they couldn’t find anything. My pft of June 3 indicated restrictive lung disease. May or may not be due to Amiodarone.
I’m going to Mayo July 27 to see a pulmonologist.
Very scary and depressing.
I know if I go back to the ER they probably won’t find anything, and I read in my medical records that my pcp has diagnosed hypochondriasis(not the case, this is really happening).
Anyone else have this?
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I suffer from asthma and have a severe scoliosis that inhabits my rib motion and also decreases my lung capacity. The adult onset asthma was easily brought under control years ago with budesonide and until recently (maybe 2 years ago)I didn’t even need the inhaler. Things have changed (post COVID) and now I too have wildly fluctuating o2 levels. I am 59. Sometimes at night they drop into the low 70’s. If I sit up and breathe deeply it returns to around 90. I will see a specialist in a month. Meanwhile I commiserate!
Sitting still, laying down, I have a very similar problem!
I’m also experiencing odd o2 readings. I go from 97 one time down to 80, and then back up to an average of 93. Usually the readings stay between 93 and 88%
My lungs are clear according to a chest X-ray, so I’m going to make an appointment with a pulmonologist soon.
Same here. I've been to specialist after specialist. Mayo couldn't find anything wrong. I recently was diagnosed with lymes disease and 5 co infections one of them being babesia that causes air hunger joint pain fatigue brain fog amd the list go's on. Mayo called it fibromyalgia which was a false diagnosis.
I went to mayo thinking they would help and they did nothing for my air hunger. I've been suffering for 2 years and most days sit on my cpap machine so I can breathe better.
I see a pulmonologist tomorrow. I will keep you posted. Update. I am using an o2 condenser set at 1.5 when I sleep. It seems to be helping. Sleep is better and. Asthma meds are more effective.
Wondering how your appointment went?
Hi there!
He was generous, with a kind personality that made me feel comfortable and heard. I am not great at staying focused and clear when I try to describe my health situation. He read through my nervousness and was able to glean useful information. He was very clear when describing the differences between asthma, restrictive and obstructive lung disease. Has any doctor diagnosed you with any of these?
the scoliosis is causing the restrictions, not obstructive, and the asthma has gotten more under control taking 1 puff Pulmicort and 1 puff generic Symbicort. 2x daily. he was perplexed but since it was working he approved and did not try to change it. I will go in for another pulmonary study and I got my allergy tests back. SO my O2 levels still drop below 90 sometimes all the way to 84 but now mostly in the evening or after a larger meal. or exertion... Now that my asthma is more under control I can start to deal with the restrictions. The BIG deal is I am on O2 from a concentrator at night. My PC ordered 4L. but I self medicated 1.5L and was so happy that I was finally sleeping better and felt it was helping with my quality of life in a big way. He questioned my reasoning and we agreed on 2L. Here is that whacky part. 2L and I woke with an O2 of 90, with a headache, so I reduced it back to 1.5. Energy and O2 at 94-96 consistently! I will remain here for a couple of weeks. so far so good. waking with good energy and good readings. We are not out of the woods yet as I still fluctuate with vigorous action, even if it is brief, or if I am very still and reading or concentrating on something. My breathing is improving with my excersizes and a lot of focus, so I don't stay down for long! I also don't really trust the first reading I try again on another finger and wait a few seconds in between. I hope this helps in someway..... sorry I am so verbose. As for your air hunger are you on O2 as well?
breathing,
Michelle
My name is Sandy. I'm currently dealing with the same issues. The Doctor issued chest xrays, breathing test and sleep test. She said the sleep test, not only shows sleep ap, but also if your brain is not singling to breathe. Especially since it's happening during the day.
I found this interesting.
Hopefully I can find my way back with any updates. Thanks
I am currently waiting for results from a genetic mitochondrial disease that runs in my family. I was diagnosed with POTS, but after doing POTS protocol for a month they determined it's not true POTS, but POTS like symptoms. I have been fully worked up by Pulmonary and did the Pulmonary exercise test...I passed, but barely, but I passed, so they said it's not Pulmonary. With all of the different symptoms I have...they think it's mitochondrial or stemming from my nervous system not functioning properly. I still have more testing to do like a muscle biopsy if the genetic test is negative. Not giving up. (I do NOT have sleep apnea. I'm on oxygen for nocturnal hypoxemia without apnea. Hope this helps.