A Pain Patient’s Experience with Ketamine

A Pain Patient’s Experience with Ketamine

By Katelyn O’Leary

Katelyn OLeary dress

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.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Katelyn O’Leary

There are 25 comments for this article
  1. Tiffany at 8:36 pm

    Dear Katelyn, I hope this treatments work for you. Please don’t let the hateful people discouraged you! I have had CRPS for 20 years. Tried everything known to man to walk again, was told at 23 that I would send the rest of my life in a wheelchair… Now to get more people upset…My treatments now are ketamine infusions With whole body nerve blocks… Crps is in my whole body! Today I am walking & working part time, can dress myself!! Best of luck!!

  2. HAZZY at 5:48 pm

    I DO NOT UNDERSTAND WHY THIS INTREVENOUS DRUG KETAMINE IS BEING PUSHED SO HARD AND SO MANY TIMES, IF PEOPLE REALIZE THAT THIS DRUG ALSO HAS PROFOFIL AND OTHER DRUGS IN IT, DON’T FORGET PROFOFIL KILLED MICHAEL JACKSON, SO I GUESS THIS MAKES IT OK FOR PEOPLE WITH CHRONIC-PAIN TAKE HANDFULS OF OPIOIDS ie: PERCOCETT, TYLENOLw/CODIENE, MORPHINE AND ALL THE OTHER DRUGS. I TAKE MY PAIN MEDICINE AS PRESCRIBED AND NO WAY ELSE.
    SO, PLEASE STOP MAKING IT WORSE FOR PEOPLE THAT TAKE THERE MEDS AS PRESCRIBED!!!!!!

  3. K. Rhoma at 12:10 pm

    Katlyn, please write a follow up. I am interested in your experience post-ketamine.

  4. HAZZY at 10:40 am

    EVERYONE IS GOING GA-GA OVER THIS KETAMINE, THIS IS THE SAME STUFF THAT KILLED MICHEAL JACKSON !!! JUST A DIFFERENT WORD FOR PROFOFIL !!! I’D RATHER TAKE MY PAIN MEDS THE WAY IM SUPPOSED TO RATHER THAN DIE IN MY SLEEP. READ THE SIDE EFFECTS ON THIS STUFF. LET THE GOVERNMENT TAKE IT, PUMPED INTO YOU FOR 6-8 HRS !!!! I TAKE MY MEDS AS PRESCRIBED AND IM TIRED OF PEOPLE SAYING OH THIS WILL KILL YOU !! SO WILL KETAMINE !!!! SO, PLEASE LEAVE OUR PAIN MEDS ALONE, IF YOU ARE CAUGHT WITH PAINKILLERS THAT ARE NOT YOURS PUT THEM IN JAIL !!!!!

  5. Nichole at 4:07 am

    My SO is trying to get a ketamine infusion treatment. 4 hours away is the closest center. His pain is so bad. His whole toe nails fall off and he get spontaneous sores on his feet. He seem to think he wants to amputate his foot in the minimal chance it will remove the pain. He has had CRPS for just over a year. I will share with him your story. Please let us know if it is working for you and I am sending prayers it is!

  6. Katelyn OLeary at 11:09 am

    For those who asked: I receive my treatments at Keck hospital of USC in Los Angeles. They have a great pain management team there.

    Thank you all for your messages. I read every single one and I appreciate the back and forth.

  7. Teresa Haney at 7:23 am

    Thanks for sharing katelyne. I hope this works well for you. I love that your not giving up. I’m praying that you get your life back. That’s a statement some may not understand. But those of us with chronic pain hope for it every minute of every day. Stay strong and may God bless you in your journey.

  8. Tricia at 2:23 am

    I have had RSD now for 4 years now. I’m from NC. I have had 7 nerve blocks, on several oral medications and pain medication, had a spinal cord stimulator surgery. I have been through the ketamine infusion spending a week in ICU and then going through two of the ketamine boosters. The infusion did work for about a month but the boosters were not as successful. You have to stay so calm and collective with the ketamine infusion and boosters so your pain doesn’t come back with ad vengeance. I did an Adenosine trial which was a success so I go next Wednesday to have an Adenosine pump placed to help reduce my burning. Good luck with your treatment.

  9. Jean Price at 9:04 pm

    Once again in these comments I’m sadly reminded how much pain impacts so many lives…and how many treatments and therapies and medications we’ve all tried to find a way to return in part to at least some of the functions of life we so took for granted. It’s never easy and it seems what works for one may not work for others. Yet I do know processing our feelings, our fears, our little joys, our small accomplishments, our failures, our hopes and even our insurance struggles lets us know we are not alone in our mission to have the best possible life within our limits of pain. Truly we are just trying to have as normal a life as possible, and yet we have a new normal for now and that’s hard to accept, whether it’s temporary or for life. We all do the best we can do and just need a little help and support from the medical community, our families, and each other. The only thing we can really impact is the support we give to each other…and maybe that’s something to hold to and work a little harder at since we do have a common goal in our lives. Maybe this will help when the rest of life seems out of control.

  10. Gary K. at 8:32 pm

    I’ve had Rsd/CRPS for over 25 years. This wonderful creation(!) Covers my whole left side of my body and this little devil is sending advanced creepers into my right leg and arm. I don’t have to say I’m in a whole lot a pain! But I am!!! In my former life I was an exotic animal behaviorist. Working for zoo’s and aquariums all over the country. Ketamine was used as a feline tranquilizer. The Exotic Veterinarians I worked with all said to never get stuck accidentally with the ketamine injection it could be fatal. Jump forward to my present life, the CDC has decided that
    unless you are a terminal cancer patient, you’re nothing more than a junkie! Dear CDC & our President (whom I voted for) I’M NOT A JUNKIE!!! This in no way pointed at Katelyn, but I don’t look good in a “Baywatch” swimming suit (you do look good in that bathing suit, I have my wife’s permission to tell you) or work in the Entertainment industry. I’m just an average Joe trying to live in this new wonderful world of “Obamacareless” losing my pain meds, begging my Oregon Health insurance to pay for Lyrica, I’ve tried and failed Gababentin my PCP has responded twice to them and they refuse to speak to me about it. I have to go to court in front of a formal law judge and plead my case for the State of Oregon to pay for maybe my only hope. If Ketamine works and several RSD/CRPS fellow sufferers say it’s a wonder treatment and has given them their lives back, I’d try it. But again my present “Obamacareless” plan doesn’t cover it. You know Canada Mexico and Cuba to mention just a few countries very VERY close neighbors have Bette medical care for their citizens… maybe our next President will actually stop letting the pharmaceutical companies run our glorious nation! I think, I read somewhere” We the people” hello people start making this the country our founding fathers envisioned for us to take care of as they wrote years ago. Sorry for the left turn but it’s so painful for me and to watch others suffer while people who decide our future who have no clue how much it hurts just to get a hug from your 9 year old daughter!!! Please stop HURTING US MORE! If it only takes wearing a red bathing suit (I’ll wear one for you) to become a blogger (do they get paid?) Since I’ve lost my job 2.5 years ago due to less pain meds, I just couldn’t work through my pain any longer and had to medically retire from my State Park Ranger job. You know I’ll speak in front of our Blind Congress ANYONE who will listen.
    Thanks for reading, and as I always say at the end of any posts Be Happy. (It’s the only thing they can’t take away from me)

  11. GB Shaik APRN at 7:11 pm

    Katelyn,

    As a patient advocate and pain management nurse, nobody feel pain except patient. patients and providers work together to do more good than harm. We are trying to develop Ketamine protocol in Texas, so far my experience is helpful for chronic pain patients.

  12. Lauren at 5:54 pm

    I just completed a 5 week ketamine infusion. Once a week for 5 hours at a time. This was one of the most highly recommended therapies to try to ease my full body crps. Needless to say after 1 week with no ketamine my flare ups are back and so is my pain. Doctors are making too much of too little with this therapy.

  13. Colleen Whyte at 9:37 am

    Sure, Ketamine Infusion treatments very often work- for a price. A price very few insurance companies are willing to pay. (Including Medicaid- which is my only lifeline in this horrible journey with CRPS) It should be mentioned that only the rich, or the lucky few who have the “right” insurance that will cover the cost, will be able to recover this treatment anytime soon. It infuriates me to the point of tears when I read about these “inspirational” (and rich) people undergoing ketamine or similar uncovered treatments when the rest of us have to make do with mostly ineffective “Bandaids” to get from one day to the next. Ketamine is the Ferari of CRPS treatments when most of us with CRPS can only afford Toyotas. Posts like these feel similar to posting a story about how delicious filet mignon is aimed at a starving person. Just something to keep in mind…

  14. John. S at 8:08 am

    Dr. Goodwin, it seems that no matter what the topic or the feelings expressed by the patient involved it nearly always generates negative feedback from a doctor.

    You are the outsider here. I respect your comments but please do not forget that we are the patients and this site was put in place so that those of us in pain can share our experience with different treatments and medication. We don’t have a medical degree and you don’t suffer with chronic pain. Please keep in mind we are only sharing not prescribing.

    I think we have all earned that right.

    Thank you

    John. S

  15. Gracie Bagosy-Young at 7:46 am

    I also have ketamine infusions for CRPS. These side effects that you describe are not typical of most ketamine infusions at all.

  16. Susan at 6:51 am

    Katelyn, I live in California and haven’t been able to find a provider offering high dose k- infusions, Would you please contact me and let me know where you go? Thank you.

  17. Holly A. at 5:27 am

    I’ve only had CRPS for 15 months and am still learning what options are available. As an RN, I know that people respond to treatment differently, what works for one may not work for another. Thank you for this article, Katelyn. I appreciate you sharing and wish you all the best with your treatment plan. Please keep us posted on your progress.

  18. Nick at 11:17 pm

    I also had ketamine treatment, I found it to be not bad but not good just part of process to stop my CRPS. I had about two weeks of no burning pain it also completely took away my back pain 100%. Unfortunately my burning in my arms, face and chest is back with a vengeance. My back is still 100% by the grace of God. I hope all of you stay well and positive.

  19. Sberger at 10:25 pm

    The government’s efforts to control pain medication is making my son’s life a living hell and I am right there beside him.

  20. Jeremy Goodwin, MS, MD at 11:31 am

    Ketamine protocols are nothing new. As a pain specialist I was using it in the 1990’s on CRPS as well as other neuropathic disorders, a number of pedometer also had fibromyalgia. IT IS NOT ” THE TOP TREATMENT FOR ANY OF THESE CONDITIONS. IT SOMETIMES HELPS, AND SOMETIMES IT DOESN’T, and it can be expensive, time consuming and is but one of many multi-pronged potential programs. Every patient is different. And most require the psychosocial support from a physician who understands the associated psychology or from a mental health professional likewise savvy about a very important aspect of CARE ( as against the too often elusive cure!)

    It is irresponsible for this on-line pain report publication to give exaggerated or even false hope to those who suffer with these horrible conditions. Please be realistic and keep potential care plans within a reasonable perspective. If it helps, wonderful. If it doesn’t, something else instead or along with it might.

  21. John S at 9:54 am

    Sounds like a journey into the unknown I’m not sold on this type of treatment.

    John S

  22. HAZZY at 8:36 am

    IT LOOKS LIKE TO ME THIS KETAMINE IS MORE DANGEROUS THAN THIS INJECTED DRUG, AND YOU CAN’T CONTROL THE EFFECTS !!!! WITH A PAIN PILL YOU CAN CONTROL YOUR SITUATION BETTER !!! STOP USEING US AS EXPERIMENTS AND LEAVE OUR PAIN PILLS ALONE……..I TAKE MY MEDS AS PRESCRIBED AND I DONT DEVIATE FROM THE WAY IM SUPPOSE TO TAKE IT. THE GOVERNMENT NEEDS TO LEAVE US ALONE !!!! RUN THE COUNTRY NOT US !!!

  23. Bob Schubring at 6:02 am

    Many thanks, Katelyn, for this hopeful news. Your comments about “thinking about the here and now” are insightful.

    We humans acquire self-esteem by achievement. If I got out of bed yesterday and walked, today it is a habit, to expect myself to be able to get out of bed and walk. If I distract myself from noticing my own achievements, I get no confidence that I repeat them. So please, enjoy the rewarding feeling of reduced pain and increased functionality. It’s how you’re going to remember that pain no longer is your master and you no longer are it’s slave. It’s just an obnoxious fact of life, that we must contend with.

    Life matters. The treatment works. And freeing oneself of pain, is freeing oneself, generally. L’Chaim!

  24. Rachel at 5:40 am

    I get lidocaine infusions done in Boston. I’m supposed to get them done monthly, but, due to the Dr’s not getting adequately reimbursed by insurance and their popularity, on average, I usually only get 1 every 3 mos.
    I’m interested to know if you find the ketamine effective, and if you are aware of any hospitals or pain clinics in the Boston area having the ketamine protocol.

  25. Diane Gracely at 3:43 am

    Katelyn you are insane to be putting your body through this. I’m sorry but I couldn’t do it. The side effects are horrible. Because of my disease (Charcot Marie Tooth) I have coped with weak legs all of my life. It’s NO FUN, plus falling often because of my poor balance. I had both of my feet totally reconstructed to get myself out of a wheelchair and walk again. SO to ADD these side affects to my life from the Ketamine, NO WAY. I am also dealing with vision problems from fibrous dysplasia of the temporal bone so to ADD to that problem on top of what I already cope with again NO WAY. I could go on and on here with my reasons why I would NEVER do this BUT I won’t. I just hope what you are doing Katelyn is worth all of this. Praying for you. God Bless I hope this is worth it.