Restarting Cushing’s disease medication can be tricky

Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com.

“It comes and goes in waves, I/ I’m only led to wonder why/ Why I try.” — “Comes and Goes (in Waves)” by Greg Laswell

I have been on and off my Cushing’s disease medication for a while now. I had to discontinue it during in vitro fertilization and pregnancy, since the drugs can affect a fetus. Shortly after I gave birth, my doctor decided to do a spot check and have me undergo testing, which required me to remain off my meds. Due to a lab error, the testing process was extended by a month. Therefore, my cortisol level has been high for a long time.

During long periods without my medication, I experience Cushing’s symptoms, but my body also finds a sort of equilibrium. So, when I restart my Cushing’s medication, my cortisol level immediately drops — sometimes causing symptoms of adrenal insufficiency.

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The Cushing’s disease symptoms that creep in when I’m off my meds

Mental health

A day or two after restarting my meds, I often experience mental health issues. Suicidal ideation is common, and my depression is horrible. I find myself feeling utterly hopeless. I have a system in place for coping with these issues, including a therapist, an honesty policy with my partner so they are aware of where my head is at, and a crisis sheet in case I hit a low point.

Since giving birth to my daughter, these emotions have hit much harder than usual. This is partly because I’m only five months postpartum and breastfeeding. But having thoughts like these also makes me feel like a failure. I would never leave my baby girl, and I don’t want to drown in these hopeless feelings. However, when they’re connected to my cortisol, I kind of need to ride the wave.

Exhaustion

For me, high cortisol causes a huge increase in energy and debilitating insomnia. Whenever I go back on my medication, I experience a complete 180. I sleep a lot, partly to help my body heal and partly because I’m so exhausted. My insomnia vanishes, and I’m able to fall asleep in minutes.

While this offers much-needed relief, it’s also overwhelming to experience such an abrupt change. I feel very sluggish and worn out, and my body seems to need endless rest.

Pain

As I wean back onto my medication, I tend to have a lot of temporary pain. My vision gets a little worse, including more black spots, floaters, and eye pain. My headaches return, and my body feels sore, like I ran a marathon. The pain is the first symptom to disappear once the meds fully kick in, but it can be debilitating while I’m going through it.

All of this is temporary, lasting only two to three weeks, but they can feel like the longest weeks of my life. Every time I wean on or off my medications, I listen to the Greg Laswell song I quoted above. It describes the feeling of coming and going, and it reminds me that nothing lasts forever. I always dig myself out of the pit. The waves will calm, and I will feel better.

You can also follow my journey on TikTok and YouTube.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.