*PLEASE NOTE THIS IS MY PERSONAL EXPERIENCE AND OPINION NOT MEDICAL ADVICE, PLEASE SEE YOUR DOCTOR FOR ANY MEDICAL ADVICE*
TW: Please be aware there is mention/photos of hospitals, procedures and needles.
Once again back in what feels like my second home in the form of hospital.
I am going to be honest and say that a Ketamine infustion was not on my bingo card! 2024 has been an huge year for me health wise and honestly I'm feeling like every appointment or procedure I have leaves me with more questions than it does answers. Any one who has chronic illness or pain knows just how exhausting and frustrating it can be when you're in the thick of it, going to doctor after doctor with appointments and tests and nothing is giving you answers or relief from your symptoms. It really is one step forward, one step back.
That has been my life for a while, but particularly the last 18 months since my pelvic pain has really increased to a level where it is interferring with my day to day life. I'm talking multiple days calling in sick to work every month because I am in so much pain that I cannot get out of bed or even un-curl from the little ball I have pretzeled my self into. When I talk about the last 18 months, I am tallking about the time in which I have been activiely seeking and revcieving professional help for my pain. In reality the timeline of my pain goes back to the very start of my first cycle when I was 13. They were always painful but I assumed it was normal and everyone felt that way because I had nothing else to compare it to (the lack of teaching and information for young girls and their cycles is a whole other conversation). All this to say, this infusion was not a split second, spur of the moment decision. It is the culmination of years and years of pain, unanswered questions and surgeries with no results.
If you're like me you probably hear the word Ketamine and have one of two thoughts, the first being horse tranquiliser and the second being what people get sedated with during surgery. You would be right about both. I was on Ketamine in ICU after my heart surgery, apparently, I don't remember much about those 3 days. When used in very small therapeutic doses it can be effective in interrupting the pain receptors and effectively giving it a hard reset. The best way I had it explained to me was that pain receptors are like teeth and taking pain medications such as Gabapentin, that I have been on for a long time, those teeth get wider and wider and the Ketamine closes those teeth, if not completely, then enough to where your pain can be more effectively managed with smaller doses of medication. My pain has been narrowed down to, what is in the simplest of terms, an overreaction of my pain receptors. That, due to the health trauma I am working through from my heart surgery, my pain receptors are always thinking that they need to fire and send pain messages to my brain even without a physical cause or once that physical cause has resolved. It is obviously more technical than that but that is the basics of it. There is a lot of studies and research about the connection between psychological trauma and the physical pain that manifests. Something I am currently working through with my psychologist.
The process for the infusion involves a week in hospital hooked up to an IV and receiving continuious low levels of Ketamine. (in other words you are about to be attached to an IV pole that goes everywhere with you, I mean everywhere... ) It is a rough process and definitely caught me off guard, how unwell I was going to feel particualrly towards the start of the week. But it is all about adjusting the levels and balancing what you can tolerate and what is going to get results. In other words, you gotta find the sweet spot!
I spent the better part of the first 3 days feeling completely spaced out and extremely dizzy. What they don't tell you is that it also has an extreme effect on your emotions and I have been an emotional wreck (think crying over a puppy in a party hat type emotional). There has definitely been a lot of unknowns and a lot of trusting the process, which is a huge hurdle when struggling with health anxeity so be kind to yourself if you find your self in that situation. It is something I am still learning and struggling with.
I have been under the care of a chronic and complex pain specialist who has been amazing in explaining the mechanics of pain and how it acts in the body to really give me a clear picture of what is happening. While we still don't have a complete understanding of what is going on there is a couple of things that have become apparent.
My PCOS, though causing some symptoms, is, is. not causing them all.
I have multiple issues happening concurrently that are causing different problems making it difficult to untangle where symptoms are coming from.
This is going to be a long, slow, frustrating road and I just need to trust the process as hard as that is.
She has been instrumental in my chronic pain management particulalrly post my laparoscopy that yielded no results, with no shortage of tricks up her sleeve. Having a good care team behind you is so important and I know how diffuicult it can be. Don't be afraid to use some trial and error and really make sure you advocate for yourself!
It was a huge decision for me to decide to go ahead with the infusion and I had a lot of conversations with my doctor and people close to me. The biggest considertation for me outside of risk versus benefit was my health anxeity in general and particualrly related to the hospital I had my heart surgery in, which is something I am going to talk about more in the future. In the end we decided that is a treatment option that is beneficial and that combined with me working with a psychologist might just be the answer I have been looking for!
Jess xx
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