When the Ketamine Worked

Dear Audy,

Do you ever get stuck on trying to do something and then you can’t do anything else until it’s done, but then it never gets done and you realise that you never really had to do it in the first place?

No? Just me then…

I’ve been meaning to tell you about my second ketamine infusion by recording a video blog. I haven’t quite had the energy over the holidays and so anything else that bumbled across my mind that seemed worth blogging about got pushed aside into the “after the vlog” pile.

The day before yesterday was finally the day. I was feeling bloody awful as I’ve spent this past week muddling through a heap of seasonal flaring. I thought I’d be productive in spite of the pain and so I painted on a less blotchy face and sat down in front of the laptop.

Once there, I tried to figure out how to talk like a regular, comprehendible person. It took several takes before I got my vlogging mojo back and started to make sense. I really don’t spend a lot of time conversing these days. It can be hard to remember things like “joining thoughts together” and “stop talking when it’s not adding anything”. Eventually, I got it done.

I mean, I think I did. I couldn’t manage to watch all the footage play back at me. This isn’t one of those insecure, “my own voice on tape” things, it was just because the whole damn lot of it recorded with the audio out of sync. I have no idea why. So, naturally, I gave up and let the delete button have its way.

I suspect that there is no why. I think this is just the fates mocking me for my silly little “nothing happens until after this vlog” stunt. If I tried to record something now, it would probably work just fine.

But I am done with that. There will be no vlog! Haha! Take that, mind block. Look, I’m just going to straight out tell you what happened in, like, a few paragraphs or something. Read on, sucker!

In my last post (before the mind block), I mentioned that I started seeing a new pain specialist who was willing to try another ketamine infusion with me. I went in for a five day infusion in October last year.

Getting infused. Like a boss.

Getting infused. Like a boss.

The whole experience was a completely different one to that horrible infusion that I endured a few years ago. It was only half as long and the drug was administered much more slowly than the first time around. I didn’t have any crazy hallucinations or nights of ridiculous nausea to get through. I was mostly fine, other than feeling a bit out of it because of being on drugs and all.

My pain levels dropped slowly but steadily. By the third day, I was a few points down on the pain scale. I then had a second drug added, this one was lignocaine and went for 12 hours, in a separate infusion point to the ketamine. While both drugs were running, the pain dropped to the lowest I have felt in years. It was both utterly amazing because of the relief, but also incredibly shocking because I could clearly realise just how much pain I deal with on a daily basis. It’s….a lot.

Double infusion.

Double infusion.

Following the infusion, I didn’t have any of the almost immediate, painful reactions that I had the first time around. I remained really calm. My pain levels were low, even though stormy weather had my hands and feet swelling and sweating like they do in a full flare. That was one of the strangest things, to feel the symptoms of a flare without the all consuming pain that usually overpowers my perception of them.

I spent about a week resting and recovering. My pain levels fluctuated a lot during that time and it was hard to tell if the ketamine was going to provide any lasting relief.

Soon enough, I was able to start moving around and building strength again. I was pleased to discover that my general level of pain was about 2 points lighter than before the infusion. This might not sound like much, however, for me it was the difference between never being able to do anything and being able to walk/cook/drive in small but useful amounts.

I put all of my pain rehabilitation training into effect and paced out my activities throughout the days, slowly attempting to improve and increase what I was doing. As well as a slightly lower pain level, I found that I needed less recovery after activities than before the infusion. Instead of going for a walk and then being stuffed for a week, I could go for a walk, rest the next day and then go for another the day after that.

I’ve continued working each day and doing what I can to improve my strength. My abilities started to decline a little around NYE and I have been dealing with increased flaring since then. I think that this has little to do with how I am managing and a lot to do with the Melbourne weather being unable to decide whether it’s going to do Summer or not.

Even though I am back in a bit of a flaring rut, I am still feeling positive. My mood has been surprisingly stable since the infusion. I found a lot of clarity in feeling the pain melt away whilst on ketamine. Living with a high level of pain all the time can get confusing and sometimes, even I start to wonder if it’s really as bad as it feels. Having the pain relieved for a bit and then returned gave me a really clear perception of just how much I am usually dealing with. All of a sudden, I was able to be a little bit easier on myself for not having achieved anything in the past few years other than survival.

It’s only about three weeks until I will go in for another 5 day infusion. Knowing that there is relief up ahead is making coping with the recent bout of flares a lot easier. There is the possibility that the next infusion will have a cumulative effect on the first and bring me even more relief, which is what I’m hoping for. However, even if the pain relief is not lasting, just knowing that I can go and have a little break from the battle I fight 24/7 creates a kind of mental relief that is well worth going to hospital for.

And so, there you have it. Ketamine infusion the second: described. Mind block: demolished. Achievement unlocked!

I can officially blog about whatever I want, whenever my hands will let me, PHEW!

Love & The Art of Observing Your Own Crazy,

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  • 10 thoughts on “When the Ketamine Worked

    1. Jackie Birch

      Am so happy for you, it makes such a huge difference to experience some ‘normality’ for a little, can’t wait to see how the second one goes. Have an awesome week :)

    2. Della

      Oh, I am so thankful for the relief for you!! I totally get how two points down can be huge! I’m praying the next round brings even more help! 😀

    3. Paula

      Thanks for sharing your experience Hayley. I have wondered sometimes if you had tried or would try Ketamine, it gives amazing relief doesn’t it? I have had two infusions, and I can relate a lot to what you went through, the first one was done slowly and so I had few side effects, the second one a little quicker and had horrible nausea. And its true that you then realise how much pain you deal with daily, “Living with a high level of pain all the time can get confusing and sometimes, even I start to wonder if it’s really as bad as it feels” I have felt this too. I am glad you are getting some respite from the pain and I really hope the next one is even better! PS glad you found your new dr!

      1. Hayley Cafarella Post author

        Thanks so much for sharing your experience, Paula. It was so amazing to get relief after my first one failed so badly. I can’t wait for the next one!

    4. Lori Joksch

      So happy for you! I have been working since August to be sent for ketamine infusion. I pray WC will send me soon and I will have a positive reaction like you have. Thanks for sharing! Lori

      1. Hayley Cafarella Post author

        Wishing you lots of luck in getting infusions approved! And much hope that they give you relief :)

    5. David Metcalf

      I also had my first Ketamine infusion around October last year for Chronic Pancreatitis, it is. Now January and I am now starting to have flare ups again. I am booked in for a short infusion whilst on the waiting list for the 7 day infusion. Like you I did not realise just how much pain I was dealing with every day until I had the infusion, I used to be on about 200 odd Mgs of varing opiods to keep my pain to a dull roar but the opiods play so badly with your personality and perceptions. I lost a beautiful relationship to chronic pain and opiods, shame but part of life. I am looking foward to my next infusion and hope like the last one gives me a couple of months relief where I can almost lead a normal life. It has taken many years to find a pain management specialist who does not just hand out opiods but looks at different techniques and is willing yo try them. I got to the point last year that I tried to take my life as I was over the daily pain and the opiod cycle. Such a relief to find Dr Taverner and find a method with lasting results. Thank you for your blog it helps to know your not the only person dealing with chronic pain every day. I also run a FB page called Chronic a Pain Australia and NZ if any one is interested in joining and sharing experiences and a place to dump your stuff and get a sympathetic ear. Again thanks for your blog, and all the best Dave

      1. Hayley Cafarella Post author

        Thanks for sharing your story, David. I’m so glad that you found a helpful doctor! It can be such a hard road to find a way to get the pain down a little. Wishing you all the best for the next infusion!

    6. Lisa Moon

      SO great to hear how much better things went this time! 😀
      Especially encouraging since I am *finally* nearing my own time to trial K infusions (starting with a wee, low-dose one-day one my doc is using as a trial, basically, as it’s covered by our national healthcare. Shortly, her new clinic will be doing ketamine and I’ll be able to get what I need from her and I CANNOT BELIEVE IT’S ABOUT TO HAPPEN!!!). Sorry, got a bit carried away. I’m sure you can understand…
      I was curious to see your photo with the dual infusions running; how neat! I had the same IV style for my lidocaine (lignocaine to you Aussies and other Commonwealth countries… just not us here in Canada!) in November! Funny how little details like that mean… something to me/us? Maybe just me! 😉
      Hope to hear you find cumulative benefits and greatly improved daily functioning.
      OMGOSH, do I relate to the trouble just interacting, speaking normally, etc! It’s embarrassing at times, when I do get to speak to someone that’s not my roomie (who’s known me for a little longer than the CRPS). I have been working on making an effort to talk to other people but holy doodle, is it hard! And most of my CRPS friends live halfway ’round the world! SIGH.

      Anyway, sorry for the ramble. Much love and healing vibes your way. Keep up the great work… it’s always good to read your latest. xox

      1. Hayley Cafarella Post author

        I’m so excited for you!! I hope so much that you are able to get the infusions and get some relief. Xx

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