My CPAP Adventure! Starting, Stopping, and Starting Again

In the beginning...

When I first got my CPAP machine, I was thrilled at the thought of getting a good night’s sleep every night. As per insurance, I used that machine every night for at least 4 hours.

Sometimes the adjusting of the tubing or the face mask most definitely interrupted sleep! I did, however, notice that I had or seemed to have more energy.

Reality of daily life with CPAP

But as the months went on with normal daily life, there was the extra added step of making sure the water reservoir was full, along with the daily cleaning of the CPAP machine, and the struggle while sleeping to be comfortable with the face mask on night after night.

I found myself wondering if it was all worth it. Good sleep was still not happening… totally.

Using CPAP less and less

After the first year, I found myself using the CPAP machine less and less. Between not being able to get into a comfortable position to sleep and the face mask seeming to have a mind of its own of how it was going to be on my face, and all the tightening and loosening of the mask never seeming to find the perfect adjustment - finally, I just quit using it for days on end.

Getting supplies was not easy

And then there was the struggle of just getting the needed supplies for the CPAP machine. It was always a nightmare because each time I would order, my records were always lost somewhere in the system. And I would have to prove to them that I had indeed ordered my supplies from them in the past. So, every new order would take at least 2 hours.

The effects of not using a CPAP

I didn't really notice I was having a problem with a lack of energy from not using the CPAP machine at this point. Nor did I give it a thought after being diagnosed with type 2 diabetes. The high blood pressure problems that I had for years were harder to manage, even with taking 3 different blood pressure medications daily.

Emergency room wake-up call

The final awakening was winding up in the emergency room with blood pressure at 200/110. From there, I saw a cardiologist who ran several tests to make sure my heart was fine; it was. One test they ran was a treadmill test.

Now when I went in for this test, my blood pressure was already at the level where it was almost too dangerous to do the treadmill test. Partway through the test, I could no longer move my legs, although my blood pressure had not gone up.

Making sense of these symptoms

However, the next day I ended up back in the emergency room with a blood pressure of 250/150!! And with symptoms of what I had been told by doctors many years ago were multiple sclerosis.

Upon doing an MRI, I was told at that time that there were 2 new active lesions consistent with the diagnosis of multiple sclerosis. But then I was later told probably not multiple sclerosis because no doctor yet has been able to tell me what the lesions are from.

It turns out I do have myasthenia gravis and Chiari’s malformation (herniation of the brain into the spinal column). I also have a degenerative disc and arthritis in the spine.

I will use my CPAP every night

I'm guessing stress on my body from not using the CPAP helped bring out the myasthenia gravis. So not continuing to use the CPAP machine created havoc in my body by making all other medical problems much worse!

Now I have decided no matter how uncomfortable, I will use my CPAP every night!