What Ketamine Actually Did (and Didn't Do) for My Chronic Illness

I want to preface this by saying I never thought I'd be writing something like this. Ketamine wasn't even on my radar when I was first diagnosed 10 years ago— it was the thing people called a party drug or a horse tranquilizer, and those were the only two contexts I'd ever heard it mentioned in. It is not where I expected my treatment journey to end up.

But here I am. And if you're reading this because you're in a similar place — you've tried the medications, you've done the therapy, you're running out of options and running low on hope — I want you to know I get it. This is my honest account of trying three different forms of ketamine, what each one was like, and what finally made a real difference for me.

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## How I Got Here

Living with EDS means living with chronic pain. That part most of you already know. What's less talked about is what chronic pain does to your mental health over time. When your body hurts every day, when you can't do the things you used to do, when you watch your life shrink around you — depression isn't weakness. It's an almost inevitable response to an incredibly hard situation.

I tried antidepressants. Several of them. I wanted them to work. I really did. But my body didn't cooperate — the side effects were serious enough that continuing wasn't an option. Not "I felt a little off" side effects. The kind where your doctor looks at you and says we need to stop this now.

After a while, my treatment team started talking about ketamine. At that point, honestly, I was willing to listen to almost anything.

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## Option 1: IV Ketamine Infusions

The first thing we tried was IV ketamine infusions. If you've looked into ketamine treatment at all, this is probably what came up first — it's the most well-known form and has been around the longest in clinical settings.

Here's the reality of IV ketamine: it is expensive. Around $400 per infusion, and insurance doesn't cover it. The typical protocol is six infusions over two to three weeks, which means you're looking at close to $2,500 out of pocket just to start. For people in the chronic illness community who are often already dealing with financial strain from medical costs, that number is a real barrier. I want to be upfront about that because I think it often gets glossed over in these conversations.

The experience itself was actually not what I expected. I went in bracing for something intense or disorienting, and it was... calm. Almost relaxing. You're in a reclining chair, low lighting, sometimes music. The dissociative effects are real — things feel a little floaty and disconnected — but it wasn't frightening. My wife was able to wait for me, which helped.

What I was hoping for was significant relief from both pain and depression. What I got was... mild. Subtle. There were moments where I thought maybe something was shifting, but it didn't hold. By the time I'd finished the initial protocol, the improvement wasn't where I needed it to be. Some people have life-changing results from IV ketamine — I've read those stories and I believe them. My body just didn't respond the way I hoped.

For what it costs, that was a hard pill to swallow.

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## Option 2: Spravato (Esketamine Nasal Spray)

Spravato is the FDA-approved nasal spray version of ketamine — technically esketamine, which is one component of the ketamine molecule. It's administered in a certified clinic, you have to stay for two hours of monitoring afterward, and it requires prior authorization through insurance (though getting that approved is its own battle).

I haven't personally tried Spravato, so I'm not going to speak to the experience from a firsthand place. What I can tell you is what I learned researching it: it's specifically approved for treatment-resistant depression, the clinical setting requirement makes it less flexible than other options, and the cost without insurance coverage is significant. Some people do get it covered, which is a meaningful advantage over IV infusions.

If you're considering ketamine options and insurance coverage is a major factor, Spravato is worth asking your psychiatrist about specifically — it's the one form that has an actual pathway to coverage.

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## Option 3: Compounded Intranasal Ketamine — This Is What Changed Things

This is the one I want to talk about most, because this is the one that actually worked for me.

Compounded intranasal ketamine is prescribed through a psychiatrist or pain specialist and filled at a compounding pharmacy. It comes as a nasal spray — and one of the things that makes it genuinely useful is that it can be made in different concentrations depending on what your doctor thinks you need. That flexibility matters, because everyone's situation is different.

The typical dosing is two sprays, used anywhere from four to six times per day — or as needed, depending on how you're feeling. It's not something you use once a week in a clinic. It becomes part of your daily management, which honestly is how I needed it to work. My pain and my depression don't keep a schedule.

The difference was noticeable. Not overnight, not dramatic in a movie-moment kind of way — but real and steady. The depression started to lift in a way that the IV infusions hadn't managed. The pain became more manageable. I started having days that felt like days instead of just hours I had to survive through.

There's something about having access to it when I actually need it — not on a clinic's schedule, not rationed to twice a week — that made a difference both practically and psychologically. I felt less helpless. That part is hard to quantify but it matters more than I can explain.

It's worth noting: compounded medications aren't FDA-approved the way Spravato is, which means your doctor needs to be knowledgeable about prescribing it and you need a good compounding pharmacy. It's not as simple as calling your GP. But if you've been through the medication merry-go-round and you're running out of roads, it's a conversation worth having.

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## What I Want You to Take From This

I'm not writing this to tell you ketamine is the answer for everyone. I don't believe there is one answer for everyone — that's kind of the whole point of this community, right? What works is individual, and getting there is a process that takes longer than it should.

What I am saying is this: if you have EDS, chronic pain, and depression that hasn't responded to standard treatments, ketamine — particularly compounded intranasal ketamine — is worth knowing about and worth asking about. Not as a first resort. Not as something to jump into without guidance. But as a legitimate option that exists and that doesn't get talked about enough in chronic illness spaces because it still carries a stigma it doesn't fully deserve.

The medication journey with EDS is exhausting. Failed treatments feel personal even when they aren't. And when your nervous system is already dysregulated, finding something that actually reaches it — that actually works — is a bigger deal than I know how to put into words.

I'm not all the way there. Chronic illness doesn't really work like that. But I'm in a better place than I was, and this is part of why.

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*This post reflects one person's personal experience and is not medical advice. Ketamine treatment should always be pursued under the guidance of a qualified medical provider. If you're struggling with depression or chronic pain, please talk to your doctor about all available options.*

*Have you tried any form of ketamine treatment? We'd love to hear your experience in the comments — these conversations help more people than you know.*