CRPS and My Ketamine Infusion Journey

RSDSA nurse volunteer, advocate, and mentor Beth Seickel, shares her experience with ketamine infusions and complex regional pain syndrome.

Ketamine. The word alone brought fear, anxiety, and a “no thank you” every time it came up as a treatment option for my complex regional pain syndrome (CRPS). When I looked into this medication years ago, I uncovered stories of patients traveling to Germany and Mexico to undergo a medically induced coma just to reap the benefits of the anesthetic. As a long-standing ICU/ED nurse, that wasn’t a direction I felt comfortable with, so I continued to resist.

But Wait, What is Ketamine?

Ketamine is a drug with sedative (sleep-producing), analgesic (pain-relieving), and amnesic (short-term memory loss) effects. It combats pain by acting against a specific chemical receptor known as N-methyl-D-aspartate, or NMDA, which is found in the nervous system and, in part, modulates pain. However, ketamine interacts with other receptors as well, broadening its clinical uses. The drug has been used in medicine for more than 50 years, most commonly for its role as an anesthetic during surgery. Recently, however, there has been much interest in the role of ketamine as a treatment for chronic pain management. Back to Beth's story...

My years of apprehension about ketamine, including the possibility of needing a med-port (a small medical gadget placed under the skin, allowing a catheter  or IV to connect to a vein), coupled with the financial burden this treatment would place on my family, kept my avoidance going. I didn’t want to deal with the uncertainty of my insurance carrier not covering the cost of infusions, or to manage disrupted treatment intervals as a result of insurance-required independent medical exams (IMEs), thereby losing any improvement I gained.

Nurse Beth is decked out in her RSDSA / CRPS awareness orange and ready to begin her ketamine infusions.

Increasing Burning Pain Pushed Me Past my Comfort Zone; It Was Time to Try Ketamine

But after 12 years of living with CRPS (read Nurse Beth’s journey), I was beginning to develop burning pains on my tongue and my heightened pain sensation to things that shouldn’t be painful (clinically known as allodynia) was spreading up to my upper body and face. It was enough!

With a medical background, I immersed myself in understanding “central sensitization,” that is, the role that glial cells and NMDA receptor antagonists have on this chronic complex condition, and how ketamine could be part of a plan toward relief. I reviewed educational presentations and publications from the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA, RSD is now termed CRPS), where I now volunteer, and slowly began to feel more confident about the potential approach.

At first, I thought I could just try ketamine lozenges (also called troches) but soon realized they would not be enough to support the NMDA receptors activated by CRPS. These sublingual doses seem to help more with managing pain flares; ketamine infusions, administered via IV, were now needed. In my case of CRPS, the pain escalated in a continual pain loop as my brain and spinal cord became more sensitized. I knew I needed to face my fears and give ketamine a try.

So, earlier this year, in spring 2019, with the support of my incredible husband, I arranged with my CRPS pain specialist in Rhode Island a plan to administer the infusions at his clinic. My husband and I booked a nearby hotel room where we would spend our nights after the infusions. The infusions would last 4 hours each, over a period of 8 days. I learned in advance that common side effects are short-lived, temporary, and reversible; they can include a dream-like state, colorful dreams, dizziness, headaches and vomiting/nausea. Some individuals can experience extreme hallucinations or confusion.

Before receiving a ketamine infusion, patients are recommended to have a cardiac workup and psych consult as medical clearance to rule out any underlying conditions before starting treatment. With my medical clearance in hand, I was ready to begin my journey.

Knowing there are everyday items that provide much comfort managing my CRPS, I brought along my soft blanket, neck roll, and dark sunglasses. Wearing my orange RSDSA hat and shirt, I started my 8-day “loading doses” of ketamine with a positive attitude.

Nurse Beth wore sunglasses and brought her own neck pillow to feel more at home during her 4-hour ketamine infusions at the pain clinic.

What the Infusions Were Like

For me, the hardest part of the infusion was the IV access as my veins have become fragile, thin, and non-cooperative. Thankfully, staff were able to utilize pediatric IV cannulas and I applied topical lidocaine to the area 15 minutes prior to provide a numbing effect. Thankfully, The IV was leads were wrapped and left in for 2 to 3 days to minimize additional trauma of another IV stick.

During the 8-day infusions, the medical team would increase the ketamine dose as tolerated. As a nurse, I paid close attention to the regimen. Prior to and after each infusion, I would receive a dose of IV ondansetron (Zofran) to minimize and/or prevent nausea. In addition, I received IV midazolam (Versed) prior to infusion and every hour during the infusions to minimize hallucinations. The team also used magnesium (supports NMDA receptors) in combination with my infusion on two days, along with a vitamin C injection, to help support my nervous and immune system.

With my husband by my side, and monitoring practitioners from the advanced cardiac life support team to keep an eye on my pulse, blood pressure, EKG, etc, I felt safe in the quiet, dim-lit room which included darkening curtains and a comfortable temperature. I chose to lay down during the infusions, but also had the option of a reclining chair.

The nurses were incredibly supportive throughout, especially as my ketamine dose increased, which led to some hallucinations and vivid dreams that were a bit unsettling at times. But with a gentle warm touch, and calm demeaner, the nurses always reoriented and reminded me that I was perfectly safe. They also encouraged me to rest and relax as I repeated my personal mantra: “reset my NMDA receptors.”

As the 8 days went by and the dose of ketamine was steadily increased, I felt a strange sensation of being disconnected from my body during the infusions. Some of my hallucinations felt like looking through a kaleidoscope, seeing different colors and shapes. As the colors changed, it felt as though I was part of a movie clip on a beautiful ride. I also had several internal conversations with myself. Whenever I opened my eyes, I knew where I was, but as soon as I closed my eyes again, the dream-like state of disconnection returned. However, the gentle touch of the nurses always reminded me of where I was. The best part: I had absolutely NO pain! My limbs felt like weightless clouds, light, cool, and free. Imagine, after 12 years of CRPS torture, not feeling any pain? It was simply incredible. 

A couple of times, I had to use the restroom during the infusions. Geez, talk about feeling disconnected. The nurses stopped the infusion and brought over a walker. At first, I thought, “I don’t need that.” But as soon as I put my feet on the floor, I was thrilled to have the support. With the nurse holding my back, I made it to the restroom, feeling like a clown walking in oversized shoes. Figuring out how to manipulate the restroom was to say the least, a very strange experience. Lesson learned. For the remainder of the infusions, I made sure to use the restroom prior to each infusion and avoided drinking anything beforehand.

After each infusion, my husband helped me get back to our hotel, where I rested with my blanket and enjoyed my daily craving of coffee, a blueberry muffin, and a jelly doughnut. Each evening, I took 5 mg of valium to help feel less off kilter and (I sometimes felt a rocking motion while sleeping). Rarely, I took an extra Zofran I for nausea.

After the 8-day loading dose, I felt a 30% reduction in pain intensity. Scared the improvement could just be in my head, I was unable to deny that I truly felt different, even “better.”

(See how another patient is using ketamine infusions to help with chronic neck pain.)

How I’ve Been Following Up with the Ketamine Treatment

Two weeks later, I returned to the clinic for a 2-day ketamine booster infusion under the same protocol as before, including a dose of magnesium in one of the infusion bags. After the booster, I can honestly report that I had a 50% reduction in pain intensity. I could feel the “reset” of my central nervous system. I was less jumpy and less agitated as well. Never could I have imagined that this would be possible, but I am so proud of myself for taking that leap of faith to add to my overall treatment plan, which also includes a series of medications and vitamins that I have trialed over the years to find the best fit. While ketamine is not a cure, for me, it felt truly miraculous.

After my initial infusions, my doctor sent me for routine follow-up blood work to monitor liver function, among other things (some studies have correlated long-term use of ketamine with liver damage). Thankfully, lab results were all good. So my treatment could continue.

I have increased my vitamin C intake, taking it before and after blood work as well as in connection with IV infusions, to minimize further CRPS trauma (some research has shown a positive association between the vitamin and complex regional pain syndrome and it has always seemed to help me). I also found it helpful to use over-the-counter lozenges and oral rinses to minimize dry mouth, another side effect of ketamine in some.

Now, several months after my first infusion, I go to the clinic every 6 to 8 weeks for 1-day ketamine booster following the same protocol. Interestingly, after some follow-up boosters, I have not noticed as noticeable change as I did after the first infusion, however, the overall quality of my life is far better. My flares do tend to increase as I approach the end of a 6- to 8-week mark, and I have been able to use prescribed ketamine troches during those times. I am curious as to how this will all play out over the cold winter months ahead, since I started my ketamine infusion journey in the warmth of spring. (Editor’s Note: Beth will share with us her update in 2020).

As I and others celebrate National CRPS Awareness this November, I hope my testimony will bring encouragement to not only the CRPS community but also to those considering ketamine. Without any FDA approved medications for CRPS specifically, we must continue to try, and when we fail, to keep believing that new options will come.

Editor’s Note: Ketamine infusions for CRPS are not currently FDA indicated. Every individual may react to ketamine differently. This article is not meant to provide clinical or medical advice. Speak to your doctor about whether ketamine is right for your chronic pain treatment plan.

Updated on: 02/06/20
Continue Reading:
Complex Regional Pain Syndrome: When the Nurse Becomes the Patient