This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By Peter
I refer to the question about oxygen treatment for OT.
I havebeen in touch with the gentleman concerned who is British but lives in Spain.
He was prescribed a machine 'to help his breathing' as he has a chest complaint, and it appears incidental that it has helped his OT - see what he wrote below:

"I did not get my oxygen from my neurologist I got it from my nuemoligist who was treating me for chest complaint and it’s prescribed for my ‘ well being ‘ after both drs saw how it helped my Ot
I don’t have tank I have a machine that sucks in air and filters it out into 98% pure which I take through nose and the machine is noisy so I sleep in separate room . I don’t take any other meds for it and if I sleep with it that gives me most of the day relief Stand in shower etc"

It might be a great idea if pure oxygen could be prescribed, but the noise of the existing machine, and the necessity to sleep in a different room, would certainly put me off...... but it's an idea worth pursuing in more detail.
By Betty
Hi Mike,

Do you have any further updates on your oxygen therapy? I, for one, am eager to try this and see if it helps me as well.
Any new information would be appreciated.

By Theresaann
From a medical point of view (Nursing), "Pure Oxygen" can be dangerous. Google describes it: "Pure oxygen can be deadly. Our blood has evolved to capture the oxygen we breathe in and bind it safely to the transport molecule called hemoglobin. If you breathe air with a much higher than normal O2 (Oxygen) concentration, the oxygen in the lungs overwhelms the blood's ability to carry it away." For example, if you give 100% O2 to a person with COPD, e.g., asthma, you could kill them because it could disrupt their O2/CO balance and actually stop them from breathing. There needs to be a balance between Carbon Dioxide breathed out and oxygen breathed in. Your machine for "recycling" O2 sounds like a CPAP machine for sleep apnea, which has to be set by your doctor. CPAP machines use a continual stream of AIR at the same mixture of oxygen, nitrogen, and other elements found in the air we normally breathe. Firefighters' breathing tanks are "AIR tanks" - definitely not pure oxygen. SCUBA tanks, depending upon the depth descended to, are in the same category. I intend to mention your positive experience to my neurologist when I see her in March. (I am in the process of being weaned off of Gabapentin/Neurontin because it actually makes my OT symptoms worse. NEVER stop this medication abruptly! Doing that could lead to withdrawal symptoms and seizures.)
By Betty
Thank you for the information regarding pure oxygen and balanced oxygen, Theresaann. I had mentioned in an earlier post for Mike to give us the balance of oxygen and air.
I am still eager to find out if I can try it. I am at the stage I will try almost anything that may help. I have had OT for 25 years and it is progressing.
Again, thanks for your comments.
By Divine
Diagnosed today. Neurologist had heard of POT (St. Louis, MO USA). Of course he can do nothing much. Fatigue is a big factor. I had liked morning exercise classes but now will exercise close as possible to bed time so I can just drop off when I get home. Who has positive exercise stories?
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