The Trials of a Drug Trial: Special K

Photo courtesy of dancecafe.org

Photo courtesy of dancecafe.org

No, not the supposed waist-slimming breakfast cereal. I’m talkin’ Ketamine. Kit Kat. K-hole.

In 2012, I volunteered to participate in an inpatient drug trial at NIMH in which they were testing the effects of Ketamine on patients who suffer chronic depression.  NPR aired a segment about the hopeful, ground-breaking research. It was an enticing proposition at the time: I had 8+ years of psychotropic pill-popping under my belt, without any positive results. No, I’m not psychotic, I have Complex PTSD.

My time there was spent with ten other marvelous albeit tormented patients, all looking to end the suffering. Here’s what I know: only one person within our group received a positive effect from the drug. Supposedly. As for the rest of us, we weren’t so lucky. The closest comparison to taking Ketamine I can offer is rolling on Ecstacy. Unfortunately, there was no music playing, no half naked people, and I wasn’t dancing my ass off.

If you’re lucky enough to not know what a bad trip feels like, think: thought prison. I spent hours unable to speak, trapped inside my head. My mouth was the size of a house and the only form of communication I could muster were uncontrollable tears. And what kind of bad trip would this be without some shit-icing on this layer cake: my mind-fuck occurred with four people hovering over my hospital bed, staring at me, and taking notes.

There are rules when one participates in a double-blind drug protocol at one of the world’s leading medical research centers. Patients are instructed to not mum a word of our experience with anyone (nod, nod, wink, wink). This is particularly difficult when one is wheeled back up to the 7th floor still partially tripping, mute, and looks as if she has just escaped from a Guantanamo Bay prison cell.

When it finally dawned on someone of my obvious fractured mental state, a nurse quietly rushed me away to a back room, now capable of garbled audible noises to accompany my tears. The Chief Doctor in charge asked if I wanted to “quit” and explained it was “okay” to not finish the trial (as if finishing was somehow a viable option in someone’s sadistic world).

I managed to drool out a pitiful, “YES”.

One shot of Haloperidol later I was enveloped in a two day relief coma. I left my room only once during those two hazy days for a coveted smoke.  The doctor kept my husband apprised of my fragile mental state, informed him of their injecting me with the stop gap “emergency drug”. That’s when it was revealed the doctor was in possession of Haldol the entire time, hidden in his front coat pocket. The same doctor who stood at the foot of my cold hospital bed while I experienced the worst trip of my life. Taking Notes.

Hope is something of a commodity.

I walked out of NIH a couple of months later, as I took full advantage of the perks one receives for participating in a research trial. I was taught the art of decoupage and made life-long friendships no amount of doctors, pills, or surgical anesthetics ever accomplished. I walked into NIH alone but walked out part of a community. The weeks that followed my crawling out of a k-hole consisted of companionship and understanding from a group of people who society typically deem weak. They are the true reason I stuck around. I walked out of NIH happier than when I walked in due to them.

And I can’t help but wonder if the Top Doc took note of that.

Comments

    • 2

      says

      Thanks, Edee. This whole Nablopomo thing is kind of kicking my ass right now. I’m wondering just what in the hell I’ve gotten myself into. I’m a terrible blogger. I need to go back to writing poetry! I’m not even sure what this has to do with your comment about this post – well, I do (in the back of my own mind). Blather blather.

  1. 5

    John says

    This is an excellent post. You did a wonderful job of constraining this story to so few words. I am sure that volumes could be written on the suffering of the patients at this “top notch federal facility”. I am also quite sure that an equal amount could be written on the cruelty and indifference of the staff. I hope everyone can appreciate this story and strength it took to endure your stay.

  2. 8

    says

    I really appreciate this personal story. I have often wondered about what it was like to participate in a drug trial, because honestly, I imagined it was as terrifying as you described it. At least something positive came out of it – friendships.

    I am feeling a bit overwhelmed by NaBloPoMo, too (although I haven’t taken up a yeah write challenge). I haven’t decided whether to stick it out or not. I wouldn’t have found your blog if I wasn’t participating. I had a goal of visiting 10 new blogs a day for the entire month. That was way too ambitious.

    I am new to the yeah write site; but it has a place for poetry called “the speakeasy”. As a poet, you probably already know that. I just learned about it today when I was checking out their site.

    • 9

      says

      Hi Rob, I’m glad you stopped by! Thanks for commenting on my story. I, too, am new to the Yeah Write site. I just found it last week and decided, because I’m a top-notch masochist, that not only should I participate in NaBloPoMo (which I’ve never EVER done) that I should also undertake posting at Moonshine, The Speakeasy, ANDD The Writing Challenge this week at Yeah Write, all while trying to cross post everything on to Blogher.com.

      I have no idea what I was thinking. But here I am, swimming in the deep. If nothing else, I hope to find a few new friendly faces whose blogs I enjoy. =)

    • 11

      says

      Hi Lark, I’m glad you stopped by! I’m glad I was to crawl out, as well. I felt quite damaged afterward and if not for the amazing patients who were on the floor with me, collectively participating in the same hell, I’m not sure how well I would have integrated back into society. I owe my recovery and my new view on life, to them.

  3. 12

    says

    Having participated in a drug trial for a medical problem and feeling fairly alienated (and I had positive results) I cant imagine what it took for you to endure a psychotropic testing… it would have killed me! You are amazingly brave… just to post this never mind to go through that test.

    • 13

      says

      Hi Zoe, thanks for swinging by and commenting! Participating in a drug trial is quite its own beast, isn’t it? It was extremely hard for me to keep this post under 600 words (I am at full capacity), because really – that type of life experience is ripe for the making of a short book! Thank you for the kind words, I am learning that’s it’s okay to be me.

    • 17

      says

      Oh, we are all well aware that is is a hallucinogen. However – we were also told that we would be given a smaller amount and therefore this implied that we wouldn’t trip as hard as some of us did. What they did not take into consideration was the fact that I have PTSD and that SHOULD I experience a bad trip – why on earth did they sit there the entire time with the emergency drug to pull me out of it and take NOTES instead? Obviously, it was a means to an end on their part (with regards to research) but I was under the misguided illusion they would take care of me – and make sure that I was safe.

  4. 22

    says

    I am so glad you decided to ‘swim in the deep’ because this blog post is so incredible for so many reasons. Thank you for sharing so vulnerably. I am awed by your ability to infuse humor into such a difficult topic. As for Special K….I’m going to stick with the waist-trimming variety, because even though that doesn’t do what it’s supposed to either :-( no one is coldly taking notes while I’m choking on the ‘shit-icing.’ All the best to you.

    • 23

      says

      Hi C.C., thanks so much for the encouraging and kind words. I really enjoyed the post you submitted to yeah write this week, btw – and am glad to find you over here! Yes, I like the waist-slimming variety MUCH more, with bananas please. =)

  5. 24

    says

    This made my head spin (and I haven’t even had any Ketamine). Way to go Mental Health Field! Have we learned nothing from the terrible shit that people were subjected to in the 1950′s and 60′s?

    I really enjoy the honesty and dark humor in your writing.

    P.S. At least you learned how to decoupage.
    P.S.S. I’m pretty sure a poem counts as a blog post.

    xo

    • 25

      says

      When i was doing my decoupaging at the hospital, it was very disjointed, I was using the “tear” technique and making abstract art, gluing it to planks of wood – I’m fairly certain the ketamine played a role in that! lol. When I think back on it – I’m surprised they allowed me back on the (locked) 7th floor with planks of wood!

      Thanks for reading, Karen. And P.S. I’m totally counting my poems as blog posts. Nablopomo can blome. =P

  6. 27

    says

    As a former research scientist, this is shocking to me. Ketamine has long been used as a way to put animals asleep for surgery. Why anyone would consider using it for depression is entirely beyond me! I totally approve of trials – it’s the only way to learn. But I’m glad you got out of that one. Ridiculous!

    • 28

      says

      Stacie – it was understood by us (the patients) that a.) we were definitely there to help promote science, in that we wanted to contribute because we fit the profile they needed in order to research the effects Ketamine has on the Glutamate System. There are other drugs that also work on the Glutamate system: Riluzole and Scopolamine. Ketamine, at least in this protocol, was more about a trial on the *immediate* anti-depressant effects. Because, we are all well aware how long it can take for something like a simple serotonin reuptake inhibitor to work ( 3 weeks) and in the case of a person feeling suicidal, Ketamine could possibly be a great option until a typical anti-depressant or mood stabilizer kicks in. (let me just point out – only one drug has ever pulled me out of suicidal ideations – and that is the oldie-but-goody Lithium. Except in my case, Lithium stops working after a couple of months and I am not willing to ruin my liver by staying on Lithium for years on end). While I was at NIH, I not only participated in THIS trial, I also participated in second which required no drug taking, just looking at images and taking tests while in an MRI. I am all about the promoting of scientific research, we need it.

      I’m NOT all about doctors and nurses forgetting that the patients are human beings. And I can absolutely see how those same doctors and nurses could forget when working in such a rich research environment but someone needs to remind them. (maybe I should send them this blog post?)

      And, I have to be honest – it feels a bit predatory. NIMH and NIH is dealing with people who come to their facilities because NOTHING else has worked. We are the people barely holding on (whether that be regarding depression or cancer). So, when a trial like this is brought to our attention (especially through NPR), it was a mad rush to get in there and be a part of something that – for the sake of dog, get us out of the depths of our current hell. It’s the predatory part that I also don’t like so much.

      Sorry for the rant!!!

      • 29

        says

        No that’s ok! I only worked for a little while in anxiety/depression. It’s such a tough area, for the reasons you say: drugs take forever to work, a dose that worked last week may not work next week. It’s like each person is COMPLETELY different. I wish it had worked. It just gave me a bit of a jolt, knowing what else it’s used for. Research is happening all the time but it takes forever to find something new. I hope there are good new medications coming down the pipe soon.

  7. 32

    says

    Yikes, how scary. I think drug trials are a good thing because, otherwise, there would be no way to test and see if something works – and how it works. But for them to be watching this drug obviously not work for you and not do anything about it is crazy.

    • 33

      says

      Hey Samantha, yes, it was scary – especially the part about not being to actually tell them how scared I was (one would think the tears may have hinted toward this fact, but I presume nothing of one’s ability to reason). Thanks for stopping by and reading!

  8. 34

    says

    Those doctors have no idea what sort of havoc they unleash in these drug trials. I’m glad that someone finally noticed your state and that you came through on the other side happier, no matter the reason why.

    • 37

      says

      Hi Michelle, thanks for stopping by and taking the time to read – it was an ordeal, but when one is chronically depressed, and something like “hope” is dangled in your face, I think many people will do just about anything.

  9. 38

    says

    What a vivid description of your experience on that drug. Your post made me curious and I looked up a bit more about Ketamine. Crazy stuff — I had no idea it’s in the same class of drugs as PCP. I’m glad you came out of that experience OK. Thanks for sharing this!

    • 39

      says

      Hi, thanks for stopping by and reading! I’m assuming you’re referring to the DEA’s scheduling of drugs (as in Scheduled Class I and so forth) which can be so VERY misleading. If one goes by that standard of classification, marijuana and heroin reside within the same class structure, which is just freaking bonkers in my book! Ketamine is LEGAL – it is used an anesthetic in surgical procedures, but in certain doses, acts as a hallucinogen. I’m sure many people wonder why I would even volunteer to try such a drug – and I think that’s where the whole predatory practice of “hope” comes in. When a person has literally tried every other option out there with no results, the end feels very near. I compare it to sticking Type 1 Diabetics in a room with a candy filled pinata and handing them a bat – blindfolded, while the doctors cheer them on.

  10. 40

    says

    Oh my GOD. I once got a bipolar medication that took away all emotion completely. I would go through the motions of the day but I wouldn’t smile, cry, offer any witty remarks, curse you out. Nothing. I knew something was wrong because I was like, “Something’s wrong.” but I didn’t really know for sure because it was in me. My husband totally knew. He practically threw me over his shoulder and brought me back to that sucky doctor (except I weigh WAY too much for that heroic measure). Not nearly as bad as your experience, but I get it. To a lesser degree. AND HE HAD THE HALDOL THE WHOLE FLIPPING TIME??!?!?!?

    • 41

      says

      Kim, I refuse to take any medication (minus my anti anxiety benzo and my hormone replacements bc I had a total hysterectomy a few years ago) any more. I am SO freaking tired of those freaking medications that ONLY made me feel nothing, feel WORSE, and on top of it all, made me gain weight – as if I needed THAT on top of everything else. Since my very long break from all of these medications, I’m doing MUCH better. I still have my issues, and I always will – but they are mine and that is simply WHO I AM!!! If you don’t like me or can’t put up with me…keep it movin’ is my motto.

    • 44

      says

      Really glad to have met you, as well, Kylie. I’m a newbie over there, this is my first week and I’ve enjoyed it so far! I’m very new to “blogging” as a genre of writing, but not new to writing, so I thought Yeah Write would be good place to hopefully hone those skills.

      • 45

        says

        It’s my first week at Yeah Write as well! I’ve been blogging for going on two years now, I think, but most of my professional life has been writing of one sort or another. I’ve never written personal things or fiction until blogging. It’s so integral to my life now.

    • 47

      says

      Hi Natalie – So, (and if I’m being presumptuous, let me know) I noticed on your blog you wrote about alcohol? addiction. The first floor at NIMH is where they did the protocols for those addicted to alcohol. I would always talk to them because I am a smoker and we had a LITERAL steel cage for just our two “departments” to use. Apparently, you should not take an alcoholic’s or a crazy person’s ciggys away! But the point is – I got to know many of them and it would break my heart to see them constantly relapse and hauled back in, literally still coming out of a blackout. One girl told me that she had been there 13 times – this means she had taken part in 13 drug trials! WOW! I am glad that you found one that worked for you early on.

      • 48

        says

        Not presumptuous at all. Yeah, alcohol addiction is the worst. All of the people I was in rehab with relapsed – all of them. I don’t know why I’m the lucky one who (fingers crossed) hasn’t yet, over four years later.
        Thanks for sharing. Your reply meant a lot to me, because so many people don’t understand how traumatic it is.
        And no, DO NOT take an alcoholic’s cigarettes away! ;) I think I was the only one there who didn’t smoke?

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