Ketamine infusions have been in the news for both good and bad reasons. All too often the stories involve people who have vastly different lives than most. They have access to or can afford the best in medical care. They don’t know what it is like to wait or fight to get approval of needed care, key in the federal government’s snail’s pace to approval, and patients pay the price. I am no one special, certainly not rich and do not get access to the medical care I really need. I do spend money receiving ketamine infusions and it’s worth it. I’m worth it.
After five years of suffering, I wanted to sign a DNR (Do Not Resuscitate) order. My primary care provider was not in favor, but he would respect my wishes. My condition was finally diagnosed as complex regional pain syndrome (CRPS) aka “the suicide disease.” There was no cure and no FDA-approved treatments, except in some cases, amputation. Yes, cutting off body parts to stop the torture.
After two years of being bed-bound, using walkers, wheelchairs and oxygen, I was so tired of fighting to simply live. I wanted to sign and be done. I saw no hope at all. I had just had to transfer over to a new pain doctor who had given me my diagnosis and swore he would make my life better. He started talking to me about ketamine infusions. There was reason for hope.
At that time and still today, ketamine infusions are not approved. They are considered experimental treatments, and under the right to try laws, can be available for a price. It took thousands of dollars to start the treatment. I sold my car, traded in car payments for medical care and have never looked back.
The ketamine at a higher dose, and with strict controls and care, can in fact change the world for a pain patient, or even someone with CRPS. After living under the haze of opioids, I would have given anything to be clear-headed again, to feel “human” and not just partially present for life. In the beginning, it was a lower dose that was increased every day for two weeks with only the weekend off. I spent two weeks counting on others to care for me. I would get sick and spend my time home asleep. We did this over and over until we hit the right dose. At that point, I would get two weeks off, and then go in for what is called a booster.
I was able to just walk on my own power by booster time. The infusion had cut my pain down by 75 percent! It was amazing. It was such a decrease that my pulse rate started to come down. I couldn’t believe the difference. Starting infusions and a revamp on my oral medications made me human again.
Ketamine infusions done correctly can make the difference between wanting to live, and wanting to die. It’s that drastic. Being able to wash my own body without help, to stand in the shower seemed so huge to me, I cried over it. The walker slowly went away, and I could take short walks with a cane, even get out of the house for a couple of hours and experience life beyond the windows of home. I could move a bit and enjoy my porch. I forgot what it was like to sit amongst nature and hear the birds, and even have a garden. A forward-thinking life was finally possible.
I then continued with infusions monthly until the practice closed. Finding another one wouldn’t be easy. Most doctors do not and cannot do this treatment. I was lucky that practice came in and took their place, offering care. I have to say, being able to access infusion suites made me feel like a medical queen, getting treatment in a much nicer environment.
Now, I do a lot to support my treatments. I drink a lot of water to keep my veins plump and ready to move that medicine around my body. Good food and the right supplements have helped immensely. As I sit here, it’s been two and a half years since starting ketamine infusions. There have been changes to the science, and the doctors are even better at the care now. The federal government, on the other hand, has not progressed at all toward any approved treatments for CRPS patients.
Now I arrive and go to a private infusion suite. I have ambient sounds or music to choose from, and no need for a headset. The leather bed/chair cradles me, and the twenty-first-century intravenous pumps only give me what fluid is needed to administer the ketamine. Not a giant bag that I don’t need, nor does my bladder or blood pressure need. I am monitored and fall asleep, at times gazing at the salt lamp while piano music drifts me off. The premeds ensure I stay comfortable, and I feel as if I am falling asleep. I do not experience any hallucinations, nor do I have to. As a pain patient, I can choose to be sound asleep while my veins are filled with the medication. I often think of it as if the IV fluids are bathing my nerves, like water to a flame, putting out the fire for a little bit. A chance to exhale each time we hit the reset with the next booster infusion. My infusions are not set in stone, as my care is tailor-made for me. Sometimes treatments are four weeks apart, sometimes further apart, and once we even got me to eight weeks without an issue.
It’s not easy; there are times that I vomit. Most of the time that doesn’t happen, and I am grateful. The swiss cheese memory? That happens, and it’s not going to stop happening. The medication causes temporary amnesia. You have to get used to it, and no, after years of this I am still not used to it. Someone has to stay with you, as being alone is dangerous until you are clear of the medication. If you have ever had surgery or a procedure, you may have had ketamine used to help put you into “conscious sedation,” or completely asleep.
Overseas, ambulances have used ketamine for pain for decades. It is now used on ambulances here in the states as well. It fell back into favor and works great in emergency departments on children who need a bone reset. The docs can do the work and the kiddos don’t even remember what happened. The medication is actually better in some cases than propofol. One of the doctors I worked with had told me that kids can recover better from ketamine than they do its counterpart in sedation. They become aware after the doctors have put their broken bones back together. Sedation spares the child from needless suffering. Still, want to call it an animal tranquilizer? For some, it’s the difference between living and dying from the most painful disease known to medical science: CRPS. It’s also pretty damn insulting to the patients that go through these treatments to hear heartless commentary.
There are people out there who demonize this treatment without actually understanding how it works, and how it can “reset” the peripheral nervous system to cause less suffering, to allow a person to have some quality moments and not just moments to breathe. To call it nothing but an animal tranquilizer or a street drug, is the type of bullying language that has, and will, cost lives. Those folks are simply showing their ignorance, without even realizing the power of their words. Reporters sensationalize and use hyperbolic word choices to keep ketamine newsworthy and exciting. That also causes patients to stay at the fringes of society and keep treatment a secret. Hiding parts of ourselves out of fear of being reduced to a “druggie.” Worse, that commentary hits the ears of a patient on the edge of trying it. They say no because of it. In some cases, they may die as a result.
Ketamine infusions have personally given me back my life. Gone are the endless days of being bed-bound and barely able to move. The opioids had clouded my mind, changed my personality and caused so many other complications. It wasn’t a life; it was an existence. I am over two years into infusions now. I have traveled to Europe more than once. Seen museums and lived through this bizarre COVID world, with hours spent sitting at the end of a paintbrush, rather than lying around in a bed watching the paint peel off the walls. It is that big of a difference.
It is that much of a game-changer. It is the difference between life and death. It’s a treatment that should be approved as soon as possible, as the first valid treatment for CRPS known to medical science.