By Katelyn O’Leary
On March 14, 2016 I started my first round of Ketamine infusions. As I have learned through my pain management team and at the RSDSA Conference on CRPS in Long Beach – ketamine is heralded as the top treatment for my condition. And as luck would have it, California is one of the few states that has the ketamine protocol in place.
For the past two weeks, I have been hooked up to an IV for 4-6 hours a day and pumped full of Ketamine. The goal is to overload my system with the anesthetic and it will hopefully calm down the nerves in my hip and leg. Some of the side effects of ketamine include:
- Feeling like you might pass out;
- slow heart rate, weak or shallow breathing;
- pain or burning when you urinate; or
- jerky muscle movements that may look like convulsions.
Less serious side effects may include:
- dream-like feeling;
- blurred vision, double vision;
- mild dizziness, drowsiness;
- nausea, vomiting, loss of appetite; or
- sleep problems (insomnia).
The first round of treatments ended on March 25, 2016 and I will have to go back to the hospital for booster infusions. I have spoken with other CRPS patients on how they prepared for their ketamine infusions and what I could expect:
“I felt like I was in a coma for two weeks. I just slept all day and night.” – a female patient age 33 who received the same ketamine infusion as I did.
I have experienced the side effects of morphine and powerful medications, but nothing compares to the feeling ketamine induces. Lying in that hospital bed, your vision becomes foggy. My legs became so weak, a nurse had to hold my waist as I hobbled to the bathroom.
Since I’m 6 feet tall most of the nurses are shorter than I am.
“If you feel like you’re going to fall, just land on me –“ my nurse said quietly, looking up at me in earnest. “- I don’t want you to break a bone in here.”
The first few days of my treatment, I was too disoriented to ask questions. I wanted to know about the patients these nurses were used to treating, their ages and where they experienced their pain. The answer? Extremely varied.
“I have two patients today. One is a 37 year-old patient who has it in all of his limbs and can only use his mouth. The other is a 50 year old woman who has it in both her arms and her left leg.”
After that, I stopped asking questions. There is a paranoid part of me that believes if I think too much about my CRPS spreading, it will happen. So instead I try to distract myself by watching movies and TV on my little ipad.
After two weeks, I’ve settled into a routine. I call the hospital 1 hour in advance so they can order my medication. I pack a bag of essentials: snacks, water, my ipad, and various other things (hand sanitizer, headbands, a book, etc.). My infusions last 4 hours, but then they keep me an additional hour for observation. Once the meds run out, I text my brother to let him know when to pick me up.
The nurses wheel me down to the front when he arrives, and I’m usually too weak to get up – so it is a joint effort to get me into the car.
I try not to think about the possibility of this treatment not working. I try not to think about the future. I think of the here and now – how I have so many people in my life who are supporting my efforts. How I have to keep moving and keep hoping.
Katelyn O’Leary works in the entertainment industry in Los Angeles and is a frequent contributor to The National Pain Report.