So, on Friday, I heard back from all of my cardiologists and went to physical therapy. Every single doctor told me that I needed to go to the emergency room to find out what was going on with my breathlessness.
So, we spent the evening in the e.r. They did every standard heart and lung test they could come up with. But really, as soon as we got there, they gave me oxygen, and I got to lay down in a bed, so I felt significantly better from that. My mom said that my face and lips had more color than they'd had in weeks. My lips are normally light pink and even a little blue. With oxygen, some of that paleness went away and my lips turned pink. The e.r. doctor said that this was meaningless, because the oxygen saturation level on my finger was 97% or higher. So, she said there would be no reason to consider a portable oxygen unit. However, I'll be seeing my local cardiologist, Dr. Jobski, on Friday, and we'll see what he has to say.
I'm also considering a local POTS specialist, Dr. Janice Gilden, since Dr. Grubb's office says there's nothing they can do for me two states away.
There's a new pain management doctor that's been recommended by a new friend, so I'll keep that in mind as well.
Until then, I'm still out of breath whenever I'm not lying down most days.
However, I had a nice weekend. On Saturday, I took my provigil (which is supposed to keep me awake), but still felt so fatigued that I fell asleep anyway. After a nap, I felt pretty good. I still had breathlessness when standing. Overnight Saturday to Sunday, I had a horrible headache (an 8), which included sharp pain above the eyes, pain with movement, and constant nose dripping (probably a leaking of excess spinal fluid). That headache lasted throughout Sunday and Monday, despite treatment with Darvocet and Vicodin. I also took provigil, since I'm trying to take it daily, as prescribed. So, that gave me a fair amount of "artificial energy" to enjoy Medieval Times, where we went for my brother, Rob's 21st birthday. By the end of the day, I was exhausted, and I have been ever since.
I feel that the Provigil makes me "overdo it", using up all of that fake energy. It is followed by pure exhaustion and pain all over my body.
I don't know what to do about it, but Dr. Grubb's office says to give it a full month to work...I'm trying, but it just might kill me (presumed exaggeration). But I would like to point out that the shortness of breath began several weeks before I started taking the Provigil, so the Provigil is not the cause of the breathlessness, but it could be contributing to palpitations and tachycardia.
