sj75 Posted August 18, 2011 Report Share Posted August 18, 2011 I suffer with intermittant low blood oxygen levels which can really affect my functioning. When i have been in hospital i have always been put on oxygen. Does anyone here have oxygen at home when things are bad? if so how did you go about organising it? Im in the uk so would be particularly interested in how the process works on the uk for anyone with pots.x Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 18, 2011 Report Share Posted August 18, 2011 I had a low O2 on a sleeping test, but it was one of those finger clippable monitors. They set me up with a machine by my bed, with a nasal cannula to sleep with. I didn't notice any affect, even after a few months of usage, so I quit. I later had a fancy sleep test at a facility, and they did not find a low O2. I think my finger monitor registered low because I sleep on my side, with my arms bent and crossed. Probably not great circulation there.That is the only experience I have had with low O2. Quote Link to comment Share on other sites More sharing options...
sj75 Posted August 23, 2011 Author Report Share Posted August 23, 2011 Thanks for that sue. I just wonder if some of the more annoying symptoms I'm getting is down to low oxygen levels as when im feeling faint my O2 levels are often in the low 80's?? Quote Link to comment Share on other sites More sharing options...
rach73 Posted August 26, 2011 Report Share Posted August 26, 2011 Hi,I have an oxygen concentrator at home due to issues with low oxygen saturation and I am in the UK.When I got the oxygen I was under a neurologist with suspected Myasthenia Gravis. I had several episodes where I had been blue lighted to hospital feeling that I was unable to breathe and my oxygen sats were at 92% I am normally 99 -100 (despite the fact I smoke).I had a load of tests done at the hospital which showed nothing wrong with my breathing. However I had to wear a pulse ox taped to my finger for 24 hours and this showed significant drops in o2 saturation on anything other than lying down. Walking dropped me down to 84% talking on the phone 91%. This was all before I got my POTS and EDS diagnosis. The pulmanologist I saw accused me of holding my breath!!! My neurologist took one look at the results and decided it was better that I had oxygen at home rather than keep coming into hospital.To this day no one seems to know why this happens and I am not under any respiratory specialist - yet I still have oxygen. I use the oxygen when I feel short of breath or if I have a severe headache as it seems to help then also. I think its due to a build up of co2 in my system.I am still under investigation for myasthenia gravis - 4 years later.The way it works is the hospital consultant has to inform the GP you need oxygen and then the GP orders it.Rach Quote Link to comment Share on other sites More sharing options...
sj75 Posted August 27, 2011 Author Report Share Posted August 27, 2011 Thankyou so much for that. Your symptoms sound a lot like mine in that respect. They just don't know why my oxygen levels drop. How ridiculous to accuse you of holding your breath?? Ive lost count of the number of times I've been to hospital and been tested for blood clots on the lungs due to the low levels combined with chest pain. Once they rule it out they just ship me home?? Never really look into why the O2 drops.x Quote Link to comment Share on other sites More sharing options...
sj75 Posted August 31, 2011 Author Report Share Posted August 31, 2011 I'm quite surprised there aren't others in this type of situation? Quote Link to comment Share on other sites More sharing options...
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