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Ketamine is a hallucinogenic drug presently being used by a handful of physicians around the world to treat the agonizing pain of Complex Regional Pain Syndrome or CRPS. Ketamine, an NMDA inhibitor, has been shown to be an extremely powerful agent to control pain. Many people however, wonder if ketamine is really a safe treatment option? Should they even consider such an aggressive medical intervention?

From our experience with our son, Devin I must admit I am hesitant to say, "yes." I do acknowledge that to date this drug has been used safely for many hundreds of people who have CRPS, but like any medication or procedure, it does come with many possible risks. Unlike typical medications, ketamine is a powerful hallucinogenic drug much like LSD or PCP and is serious stuff. When given as a low-dose 5-day infusion one must be monitored closely in the intensive care unit for levels of consciousness, hallucinations, cognitive functioning, extreme nausea, blood levels, vital signs etc. Most receiving the procedure in this ICU manage just fine with close supervision, have some degree of pain relief – however short lived- and have no known long term side-effects.

My son Devin however, was not so fortunate! Following 3 weeks of oral ketamine and 2 low-dose ketamine infusions, Devin developed temporal lobe seizures and a devastating condition known as Hallucinogen Persisting Perceptual Disorder or HPPD. This life altering disorder is extremely rare and is typically seen in the population who abuse hallucinogens like LSD. Hallucinogen Persisting Perceptual Disorder is a severe condition, where a person experiences the feeling as if they are on the hallucinogen 24/7. They have constant visual perceptual changes, hallucinations, depersonalization and altered cognition. Like Russian roulette, one theory is that Devin was one of a handful of people to have a genetic predisposition for this disorder and, upon receiving ketamine as a medical intervention, was in the small percentage to develop HPPD. It is estimated that only a small number of people who use hallucinogens like LSD or ketamine recreationally, develop this disorder. Some have been known to be chronic abusers, other had only used once before developing HPPD. Another theory is that Devin was only 15 years-old at the time, allowing ketamine to play havoc with his still developing young brain … good information to pass along when considering this as a treatment for your adolescent child.

Although it is not my intent to scare readers, it is my intent and responsibility to educate and report our experience with Devin to those who are considering this treatment as an option. I wish I had only had this information prior to making the decision to go ahead with the ketamine infusion for our adolescent with CRPS. (For more detailed information about our experience with Devin’s journey through CRPS, his ketamine experiences, and his ultimately successful treatment at The Children’s Hospital of Philadelphia, feel free to read my book, The Burning Truth.)

Ketamine was originally approved in the 1970′s as an anesthetic for children. Today, it is still used for minor procedures with pediatric patients, minor sedation in intensive care units, analgesia in emergency medicine, as well as an anesthetic in war zones. It is also a very popular anesthetic in veterinary medicine. More recently, ketamine has proven to be an effective treatment for depression in patients with bipolar disorder who have not responded to anti-depressants. In people with major depressive disorder, it has shown to produce a rapid antidepressant effect. This powerful hallucinogen, much like LSD or PCP has been abused since its inception for recreational purposes. Common street names for ketamine are K, Ket, Special K, and Vitamin K. It has been reportedly used over the last decade as one of the "date rape drugs".

Ketamine however, has some extremely beneficial qualities when it comes to pain. Ketamine is an NMDA or N-methyl-d-aspartate inhibitor. NMDA is a receptor in the dorsal horn of the spinal column within the pain pathway which binds glutamate. Once glutamate successfully binds to this receptor, depolarization of the second order neuron occurs and pain signals can then continue to travel to the brain. With its inhibition, glutamate is blocked from uptake and this signal is stopped!

The flip side is that individuals with CRPS have a constant and prolonged release of glutamate within the dorsal horn of the spinal cord, which leads to a process known as wind-up. This eventually causes central sensitization within the entire pain pathway. Simplistically, wind-up occurs when glutamate and its re-uptake by the NMDA receptors form a self-perpetuating cycle that no longer requires the insult from an injury to set it off. Basically, there is no off-button between the synapses of these neurons once the injury begins to heal. Glutamate continues to be released by the end terminal of the first order neuron, and NMDA receptors of the second order neuron continues to bind it…the cycle keeps going and going, allowing pain signals to constantly travel to the brain in a continuous loop. The damaged nerves become overexcited and sensitized and the entire pain pathway is now on fire! Typically there are natural neurological processes which slow down the release of glutamate as an injury heals, but when wind-up occurs the pain basically takes on a life of its own and a powerful pain loop sets in.

There are a number of different ways to receive ketamine as a treatment for pain:

  • orally
  • 5-7 day, in-patient, low dose, IV ketamine infusion – "awake version" (intensive care unit)
  • non-FDA approved ketamine coma (offered in Germany or Mexico only)
  • out-patient, IV ketamine infusions, 4-6 hours over many weeks -many months (followed by booster sessions)
  • experimental "close to coma," 3 day, IV ketamine infusions (intensive care unit)

Ketamine certainly seems to make sense then. It stops wind-up by blocking these NMDA receptors…bam right in their track! And yes, it can be very effective, but there are a few things to understand about this treatment before jumping in. It’s important to understand that ketamine is not a cure and 20% of people who receive a ketamine infusion have little to no benefit. The remaining 80% however, typically have some degree of significant pain relief following this aggressive treatment. One must realize though, that the relief is temporary; it unfortunately doesn’t ‘hold’.

It can last anywhere from 2 weeks to many months; but the pain does return. Booster infusions following the treatment have helped to prolong the benefits and are now being done by many physicians with promising results. The only known potential pharmacological cure for CRPS is with the non-FDA approved ketamine coma presently being offered only in Germany and Mexico. In this situation about 50% have come out of the coma completely pain-free, with no return of symptoms. The other 50% have come out with partial to no relief, and symptoms have returned over time. The benefits of the ketamine coma were found accidentally in Germany when a patient with a pre-existing case of CRPS suffered from severe trauma following a car accident. She was put into an induced coma with ketamine to protect her brain and when she awoke 5 days later, coincidentally, her pain was gone. Since this discover, dozens of patients have been treated with this aggressive and controversial technique in Germany and in Mexico. This has been exciting, however the coma comes with substantial risks, and there have been reports of cognitive and physical trauma/disability following this procedure.

There have been no other documented cases of HPPD that we have heard of related to the medical use of ketamine, and thus far ketamine has appeared to be a fairly safe treatment. This is good news seeing that Devin’s case is most likely extremely rare, but I have to wonder if there are cases out there that have not been reported? Either way, I feel that it is my obligation, as well as the obligation of those physicians who are providing this treatment, to inform others about this potential side-effect. In reality, there still have been relatively few people who have received ketamine for pain relief.

The numbers are small and thus a significant side-effect such as HPPD should be reported. Devin was only one in a handful of adolescents at the time – and probably still - who have gone through a ketamine infusion. If nothing else, the statistic for this disorder occurring in children under the age of 17 is potentially much higher than with adults. This is certainly important information to be cognizant of. I did share Devin’s story with Jim Broatch, the executive director of the RSDSA, and he immediately sent an e-mail reporting this side-effect to physicians around the world commonly using ketamine for the treatment of pain. I greatly appreciate his concern for the RSD community and his help.

I am truly happy that ketamine has been safe, effective and helpful for many people who are suffering from CRPS. I witnessed the miraculous effect it had on Devin for the short time that it worked. We briefly had our son back. He could function and smile and live life again! Unfortunately it did not hold. It lasted only 3 weeks the first time and 6 weeks the second time. From this treatment, he developed seizures and a rare disorder called HPPD. I truly hope this disorder is a rare outcome following ketamine infusions. However, I also hope that I was able to educate you about Devin and this one particular case. There were other options for our son and there are other options for children with CRPS. I strongly recommend avoiding invasive and aggressive treatments, and medications with potential side effects with children and their still developing young brains. Programs like the one at the Children’s Hospital in Philadelphia are extremely safe, effective and successful and would we have found it sooner - Devin would not only be pain-free, but also seizure and HPPD-free.

Devin is a remarkable young man! He was able to graduate from high school this past spring and was accepted into the music program at Western Michigan University to study piano. He is extremely courageous and eternally hopeful, and we are certain he will overcome this challenge with time.