Tonight, I wrote to my nurse at TCI. Here is the email that I sent to her. I'll post again when I hear back.
Hi June,
I'm writing again to report some problems. I was trying to increase the Neptazane, but for three days in a row, I developed strong waves of nausea/chills/fatigue that were quite debilitating. I stopped the Neptazane, because I thought that it was the problem. Unfortunately, these nausea spells are persisting. Today, it was so severe that I was completely unable to move and restricted to bed. I put on my inflatable traction and experienced immediate relief. Thank God. However, it is not lasting relief. And it shows me that the spells were not caused by the Neptazane, but by the persisting cranio-cervical instability. Today, being the worst spell, I also noticed that my heart was pounding really hard, even while lying flat, which normally doesn't happen with my POTS.
I just wanted you to know of my worsening instability symptoms. I will be trying to restart the Neptazane again this week, increasing the dosage a little slower this time.
Also, with regards to the osteopenia treatment, I've seen Dr. Camacho, the head of the Osteoporosis Clinic here at Loyola University in Chicago. She ordered a 24-hour urine test, multiple blood tests, and scheduled a follow-up appointment in December. She has not yet started an treatment on me, because she said she would like to research which one would be safest for me first. She was concerned about prescribing an osteoporosis medication for someone my age (24). So, we'll see what she says at the follow-up appointment in December.
Is my plan still to wait on the fusion revision until I've had 12 months of treatment for osteopenia?
Thank you so much for your continuing help.
Carolyn
