another day, another medication…
Last week I had an appointment with my POTS doctor. Many dysautonomiacs see a neurologist for help managing their condition, as dysautonomia is a dysfunction of the autonomic nervous system. However, when I was first diagnosed I was referred to a cardiologist who has now proven to be the best doctor I have ever had. He is gaining a reputation as a dysautonomia specialist on the west coast, so I’m not about to trade him in!
I have been experiencing even more fatigue and migraines than normal, so I decided it was time to talk to the doc again. And talk, did we ever. I was in his office for over an hour and a half. I felt sorry for the person who had the appointment after mine.
One of the things we discussed was myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) here in the U.S. Like dysautonomia, much about ME/CFS is still unknown. ME/CFS and dysautonomia share many symptoms, including:
- concentration problems
- muscle weakness
- joint pain
- poor circulation
- digestive issues
- Sensitivities (to light, touch, food, chemicals, perfume, paint etc.)
An ME/CFS diagnosis is usually given when the symptoms persist and no explanation can be found. However, in my case, dysautonomia explains the symptoms above. So, I have occasionally been told that I cannot have both dysautonomia and ME/CFS, as they are mutually exclusive.
Yet, my doctor, and other dysautonomia specialists are theorizing that they may, indeed, be related. A book I am currently reading states that it is estimated that 96% of ME/CFS patients demonstrate some form of orthostatic intolerance (the diagnosing factor of POTS).
“In fact, there may be, at this point, sufficient cumulative evidence to support the idea that CFS/ME actually is a form of dysautonomia.”
With a possible connection between the two, my doctor explained he has been reading up on ME/CFS and possible treatments as possibilities for his dysautonomia patients. Some scholars believe ME/CFS is caused by the Epstein Barr Virus (the virus that causes mononucleosis), the herpes virus, or other viruses. Therefore, ME/CFS have been experimenting with antiviral medications. My doctor decided to conduct an experiment with me and prescribed an antiviral to see if it helps with my fatigue.
Trying new medications can be nerve-racking. I have flashbacks of vomiting in the shower then falling down as I tried to get out when I tried a new medication years ago. My body is overly sensitive to foreign substances and any new medications can cause serious effects. While I’m excited to try out a new theory about dysautonomia, I’m a little nervous about being a guinea pig.
Here’s the part where I tell you how being on the medication for only five days has changed my life, and I’m bouncing off the walls with energy now. Except I developed a major migraine over the weekend. And slept for over 16 hours on Sunday. And have been pretty dehydrated since then. So, my role as a guinea pig is not off to a great start.
Maybe next week.
In other news, I’m getting on an airplane this weekend. I do not travel well and have not been on a plane in over two years. To say I’m apprehensive would be a huge understatement. With any luck, I’ll sleep for the whole thing.
Question: How do you handle new medications? Do you get nervous being a part of experiments to see if a new medication works for your condition?
“Courage is not the absence of fear, but rather the judgement that
something else is more important than fear.” ― Ambrose Redmoon