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By Peter
#6399
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
#6412
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.

Thanks,
Betty
By Theresaann
#6413
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
#6414
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.
Betty
By Divine
#6444
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?
By Lake of the Woods
#6470
I emailed Cathy from the U.S. who has also had positive results from the oxygen treatment.
Unfortunately I have not heard back from her - I suspect the email went into her junk mail.

I had talked to her and emailed her after her initial positive reaction to the oxygen and would like to get an update from her that we could share with others.

I am hoping that others will try this and there are 3 OT people now with positive results - Mike from Spain, an OT patient of Mike's Neurologist that used oxygen after hearing about Mike's success and Cathy from the U.S.

Initially, I was told I had to rent the oxygen machine for 1 month but learned when I paid my bill, this was in error and I could have just rented it for a short time. I would suggest that 3 days would be adequate to know if this will work for you.

Peggy
By Betty
#6471
Hello all,

I rented an oxygen machine and have been using it for almost two weeks now. After the first two days, I THOUGHT it was working for me (I wanted it so badly to work), I think I 'willed' my body to stand still, and using 'mind over matter', I could for about one minute, then I had to sit. But....because I was using so much energy just to make my body still, I was totally exhausted and the tremors returned.

I have had one other short period of stillness, but I can't say the oxygen is working for me. I will continue to use it for the month and see if there is any change.

To be continued.....

Betty
By Lake of the Woods
#6472
Hi Betty,
Good for you for trying this - I will be hoping that you have some success.

I sent you a private email a few days ago but suspect it may have gone to your junk mail as I haven't heard back from you.
Peggy
By Lake of the Woods
#6482
Hello,
I don't think it is a appropriate for a member to write and advise this:

From a medical point of view (Nursing), "Pure Oxygen" can be dangerous.

It sounds like she has a background in nursing and that does not make her qualified to state this. Mike in Spain is under the care of his Neurologist and this Neurologist has also given oxygen to another OT patient of his and they have also had success with it.

The point is that for people to try oxygen, they need their doctor to authorize it. This is who would know if it is appropriate for you to try it.

My doctor told me "it was very safe to try".

Peggy
Last edited by Lake of the Woods on Tue Mar 10, 2020 6:15 pm, edited 1 time in total.
By Theresaann
#6484
Please re-read my response: "pure oxygen can be deadly". I stand my ground with ER and EMT experience.
By Lake of the Woods
#6485
I had a couple of inquiries on the details of renting an oxygen machine and then it was suggested that I post these details:

I rented mine from a company called "Medigas". You would have to google oxygen supply company where you live. A nurse did come around but she really didn't do anything.

When they delivered the machine, I think I gave them the requisition signed by the Doctor at that time - I may have give it to the nurse - she came the next day. Can't recall that detail.

The machine is extremely easy to use. It is about 2.5' high x 2' wide and is on rollers and has a VERY long plastic tube that is hooked up to the machine and then you insert the end pieces into your nostrils.

It has 5 levels of oxygen on it and ie. Level 1 would distribute 1 litre of oxygen per minute and Level 2 - 2 litres per minute. You just plug it into the wall and turn it on.

There is an option of using it filtered through water but I didn't do that. The nurse was helpful in that regard as I asked her about that and she said that is really just for your comfort if you are using a higher level as sometimes your nose can get quite dry.

Mike is using Level 3 but my Dr. suggested I start on Level 2 and I did that for ie. 12 hrs. I remember I started as soon as the machine arrived at 2pm and had it on through the night until the next day about 11am.

I actually rolled the machine into another room at night as I am a very light sleeper and there is some noise associated with it but certainly fine during the day. Also, you can't go near a stove of course with the oxygen.

The fellow bringing the machine gave me some instructions of that.

After this didn't help, I went to Level 3 and tried it with no success. I then checked with my Dr. to see if I could try Level 4 and Level 5. He said it was very safe to try at these levels. Level 5 is noisier but I still wanted to try it.

I hope all this info helps and that you try it. I think people would kick themselves if ever they eventually try it and it helps - why didn't they try it sooner.

Unfortunately it did not work for me but I hope it helps you!

Peggy
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