I met with my lovely endocrinologist nurse practitioner this week, and my psychiatry appointment was last week–everyone agrees. The low cortisol treatment is working. I slowly moved up to 5mg Cortef (cortisone) in the morning and 5mg in the afternoon, with breakfast and lunch. The first thing that happened was that my sleep cycle regulated. I was tired at night and awake in the morning. Because cortisone is a steroid, it really does work that quickly.
If that sounds like no big deal, understand: I have NO MEMORY of ever feeling this. I have always felt awake at night and exhausted in the morning. Every attempt to reset my sleep cycle failed.
I began to understand how extreme my fatigue had been when I realized that I was bored. I had no idea what to do with myself, with all these extra hours in my day! What an awesome problem to have!
The next thing that I noticed: more energy and better concentration. A few days into this treatment, I found myself sitting on the floor with my amazing son, happily playing: we played all morning. During the morning! I didn’t have to go nap or turn on the TV!
The next thing: less anxiety. This just makes sense. Good sleep and more food (too much, and too little, before) are just going to lower anyone’s anxiety. My psychiatrist says we should go very, very slowly, because withdrawal from clonazepam is so downright nasty, but… I cut one of my doses in half. I take 1 mg morning, noon, and night, but .5 mg in the evening. 3.5 mg total. That’s the first time that number has gone down since I tried to taper, before my pregnancy. I’m near tears just thinking about being free from the four times daily interruption.
What I learned from the endocrinologist: my body will learn to make the right amount of cortisol, eventually! Within a year, maybe! A year is a long time for this treatment, she tells me, but my cortisol is pretty low. There are two kinds of blood tests for cortisol, and on the less commonly used serum test, the range of “normal” is 6-50. Mine came in at 9. This “normal” range comes from a skewed range of data, because we don’t test cortisol levels on people who feel good. I don’t have Addison’s Disease, or something that would prevent cortisol production, physically–the idea is still that the cause is childhood trauma. So 9 is most likely just far too low *for me* and is pretty close to the bottom, anyway. We’re going to keep testing my cortisol levels every so often, and when she’s satisfied that I’ve got a good thing gong, we’ll try tapering the medicine and see what happens. Taking the medicine for a year is the long wait, though! I’m used to a shrug and a “who knows?” when I ask if I will need a medication for LIFE, so I just about danced a jig when told about this idea of a year.
A few months ago, I thought that I would never have enough energy to work the part-time jobs I already have as actively as I’d like (HypnoBirthing, Jamberry, Chloe + Isabel). Not only have I exceeded my own goals and expectations, there–April ROCKED–but I have also applied for FULL-TIME WORK. Because I WANT IT!
I just wrote this before 10:00am. CELEBRATE!