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No more Lidocaine, now we're talking Ketamine

  • By Dana

    I have failed two Lidocaine Infusions and today my doctor prescribed me Ketamine nasal spray and wants to admit me AGAIN, but this time for a Ketamine Infusion. Anyone done both and have any advice or insight? This is all taking place in Philadelphia.
    Thanks in advance.
    Dana

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  • By Nancy Harris Bonk Moderator

    Hi Dana,

    Yes! One of our contributors does both. I’ll reach out to her and see if she can come in and share her journey with you!!

    Nancy

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  • By Katie M. Golden Moderator

    Hi Dana!
    I’ve been going to Jefferson since 2014 or so. I did one round of lidocaine and it was not the best experience. I just didn’t like the way it made me feel and I didn’t get much relief.

    I’ve now been in-patient for ketamine six times, averaging about 2 visits per year. Once I became chronic, I have pain 24/7 and haven’t had a break in 8 years. With each hospitalization for ketamine the severity of my pain gets knocked down a few notches and makes life a little more bearable. I also have a ketamine nasal spray. I honestly don’t think I would be as functional as I am without this protocol. But of course, please do your own research and talk to others – theres a great FB group called Medical Ketamine and Migraine.

    I’ve also written multiple articles about my experience. Hopefully this will help you:

    https://migraine.com/blog/ketamine-for-management/

    https://migraine.com/blog/headache-camp/

    https://migraine.com/blog/headache-camp-round-2/

    https://migraine.com/living-migraine/ok-to-say-feel-good/

    https://migraine.com/blog/lessons-headache-camp/

    https://migraine.com/living-migraine/headache-camp-5-advocating-for-yourself/

    https://migraine.com/living-migraine/official-study-results-from-headache-camp/

    https://migraine.com/blog/headache-camp-seat/

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    • By Dana

      This may seem like a silly question but, are your visitors allowed to stay overnight? They weren’t at Methodist….which you know (what an awful experience), but I anticipate the Ketamine will make me very out of it and with my already high anxiety, the thought of being alone terrifies me!
      Oh, and your articles were incredibly helpful!
      Dana

      reply
  • By Dana

    Also @katie M. Golden
    I also have the nasal spray, it’s so far been the only abortive that has given me any ..albeit temporary…. relief. My admission was supposed to have been January 23rd, but had to be rescheduled because I was hospitalized with pneumonia at my local hospital in Delaware. It will now be March 6th. How does the main campus compare to the Methodist campus….as far as…..I don’t know….you said with the Ketamine you had decorated your room, brought your oil diffuser, seemed like your visitors were there all the time (like I asked in my previous post). Methodist wasn’t at all like that, at least not for me….but maybe that’s because I didn’t know I could bring things like that. I’m just very nervous because I did Lidocaine at Methodist twice and the experience (both the meds and the care) was a nightmare. To the point that if the Ketamine Infusion was there, I would suffer rather than go back 😢

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  • By SanFrancisco

    I’m a daily severe migraineur and have had several ketamine infusions that were very helpful. That amazing dr retired in 2015 and I’ve been absolutely miserable since bc ketamine is still controversial so availability currently seems to be in the bigger cities. However, then I found a dr that said he would be willing to give nasal ketamine a go. This nasal ketamine was compounded and was not effective at all – no dissociation (which is what is necessary to reset the depression and pain thresholds). I haven’t tried Esketamine yet but it’s 5x stronger than the compounded ketamine and it’s dosed once per week. It does warn about dissociation so I imagine that drug works. I hope this helps a little. It is certainly more convenient to be able to take this medicine at home as opposed to a hospital or infusion site.

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  • By Nancy Harris Bonk Moderator

    Hi SanFrancisco,

    Thank you for sharing your journey with us. I’ve heard from a number of people who are benefiting from using ketamine, nasal spray and/or IV infusion. Will you keep us posted on your progress?

    Wishing you a low pain day,
    Nancy

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  • By SanFrancisco

    Yes, I’ve had 4 ketamine infusions (about 4 hours each) and now I’m using ketamine nasal spray (compounded/not Esketamine). The experiences for me have been like night/day.

    The infusions cause almost immediate dissociation which some people love but I for one find it a little scary.

    But the dissociation during the infusion is really necessary for some reason for efficacy.

    The nasal spray I was prescribed does NOT cause dissociation/too low of a dose.

    So before I would spend the $$$ money on a ketamine infusion; I would ask about IV dosage and dissociation bc I’ve read recently that dr’s are also experimenting with “micro-doses” of ketamine.

    It’s been my experience that if dissociation doesn’t occur (i.e., dose too low) that it’s not nearly as effective for pain relief/prevention or the depression that comes with it. Hope this helps!

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    • By Nancy Harris Bonk Moderator

      Hi SanFrancisco,

      Thank you so much for sharing your experience with ketamine. I’ve heard from a number of patients that this treatment is very helpful.

      Fingers crossed for continued success,

      Nancy

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  • By SanFrancisco

    I meant to reply to you but my answer appeared under “Dana” please check it out as I’ve had both nasal and infusions of ketamine

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    • By Katie M. Golden Moderator

      Dana – I’m so sorry I missed your questions back in Feb- I wasn’t doing very well. Have you gone in-patient at Jefferson yet? What was it like for you?

      San Francisco – I’ve not tried the esketamine yet either, but do have a compounded nasal spray. I tend to microdose with it, instead of waiting for a severe migraine attack to use it. It helps me to control the daily fluctuations in pain. I don’t get the disassociative feeling either when I use the nasal spray.

      There isn’t much data or research on the effectiveness of an infusion and whether someone feels disacossiated. Having had about 10 inpatient stays for ketamine (5-days at a time, 24/7 ketamine drip), the crazy effects aren’t as bad. I used to get double vision, slur my words and lose track of time. But my body has gotten used to it and the effects aren’t as strong. You can always tell them to turn down the amount of ketamine being pushed during an infusion to a more tolerable level.

      I hope this helps!
      -Katie
      Migraine.com Moderator

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    • By Dana

      Katie,
      Sorry I missed yours, I haven’t been doing well!
      Are you feeling any better?
      I did do the 5 day inpatient Ketamine Infusion back in March up at Jefferson, it was interesting to say the least. There are things I wish I had known going in, i was so nervous about even the most simplest detail. I would love to write the “Ultimate How To” for people like me! I am now at the point of trying to get my insurance to approve a Spinal Cord Stimulator. Definitely not where I thought I would be.

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