YOU ARE NOT ALONE - A companion online community discussion board for The Mental Illness Happy Hour podcast with Paul Gilmartin

Hello,

I was wondering if anyone has participated in any research studies, in regard to medications?

At this point my doctor seems to have tried everything he feels comfortable with (short of ECT) for my medication-resistant bipolar disorder, and I am considering joining a research study in the off-chance they can introduce me to something that makes a difference.

I was hoping there might be someone with a little insight into this realm, as I have no experience in research studies. Any stories?

Thanks!

I've never participated in a study. Try checking organizations like the National Institute of Health and the like for ongoing studies - there are listings of ongoing studies, and sometimes you can apply.

You might specifically look at scopolamine - I've heard of research into the drug for bipolar. It's used for motion sickness, but reportedly has some impact for depression. Here is an article: http://www.medscape.com/viewarticle/744452

Other than that, not sure what to suggest. Good luck.

in_media_res,

Thanks, I already know the studies in my area (and have actually met the leading psychiatrist in charge of one of them at a local conference), I am really just concerned at this point with what other people's experiences have been in participating, and whether they would consider the decision to have been a good or bad one in the long run.

Thanks though!

Hi Colonialpunk, et al,

wanted to post a quick reply even though I'm not usually much of a forum poster - I struggle with writing even though I'm pretty good at it due to anxiety and, I suppose, depression. Well. I guess more specifically I over-edit. ANYWAY, your question.. I participated in some studies. One for Intranasal ketamine, and one for MAOIs in treatment resistant depression. Where to start..

Well, it is illuminating to be in a study, because , you know, since they really ARE practicing an evidence-based sort of medicine, they really pester you and stay in touch and get benchmarks. None of this one-20-minute-consult-with-your-psych-med-guy-or-gal and then you dont' see them for months... In a study, you will be given one or more inventories to evaluate your mood at regular intervals. I didn't love answering questions about how depressed i was feeling (that's depressing), and I was a little pettily surly that the woman asking me them was 10 years younger than me and fresh out of undergrad, but.. even if researchers are only interested in you for your data, it's nice that they ask. I don't see many talk therapists (of any stripe) suggesting regular mood tests/inventories. Though of course lots of the models they studied have been developed and tested that way -- with subjects who ARE receiving regular benchmarking inventories of one sort or another. THis is one of my great sadnesses about the way psychiatric medicine and therapy is practiced in our time in the us.. there's not much time or money, insurance coverage is very limited and in big cities with high rents the good practioners won't even take it, and as a result, the PRACTICE of psychopharmacology is SOOO vastly different from the research that all the meds it prescribes comes out of. I don't know .. studies just don't account for the effect that being asked how your doing every week has on a subject.. but that's way more than most (affordable) psychiatrists/GPS/psych NPS etc will ask you, right? what the impact of that "checking in" ?

well.. steps off soap box.

So.. the ketamine.. well, i was one of the first nasal trial participants. It wasn't the best experience - i joked after that i dont' know why anyone would do that drug for fun -- but I can't say this is because ketamine isn't effective -- Jury is OUT on that one. But I was sleep deprived and very anxious the day/night before, I don't think they titrated the dose much for my weight (or maybe they DID and i'm a weird metabolizer of ketamine), and, well, the hospital environment is kind of a potentially scary one for a mind-altering experience. The nasal administration is new.. the very successful trials at Yale that I first heard about on talk of the nation in early 2012 where all intraveniously administered, which allows for more control I think. I would try it again, but i might save up and consider trying to do it privately. The research team watching me expected me to have only mild euphoric effects from the ketamine, but I was totally dissociated - I thought my hand was wood - and that was just not pleasant in a hospital environment. I gave the drs and residents a lot of feedback about it all. suggested they make sure people sleep before both administrations, and maybe have a more home-like environment. The other thing it involved was SO MANY MRIs. This is good if you aren't claustrophobic and need an MRI anyway and don't want to pay for one (although they don't necessarily look at the same sections that your doctor might), but it was a lot of being in a tube.

The MAOI trial got defunded, unfortunately, so I started but did not complete that one.

I'm not sure what the take-away is -- I still look at clincial trials.gov.. just last night i was searching it for "deplin" studies -- basically a fancy suppliment that has been suggested to lead to more depression remission when coupled with SSRIs (off topic - but it's to do with the homocystein (sp) theory of depression, and methylation.. really intriguing.)

It's a drag to be a lab rat, but at the same time, there's a different level of attention and curiosity going on. And at times it gave me a sense of purpose -- I'm someone who truly believes that we are in the dark ages of psyciatric (can't spell today, oy vey) medicine, and research is the way we learn new things, so participating in it felt good to me -- like I was doing a small itty bitty thing to contribute to understanding Depression, ie a big scary public health problem that kills so many people every year. ANd the meds we have are ok for some, but CLEARLY really not ok for so many -- crippling side effects, just not effective, etc.) Hmm, Also I was more compliant with the med regiment, because I didn't want to be bad data for the study. that helped. Overall.. it's really worth looking into - I think.

Hope this helps, and apologies for the many spelling errors. I don't know if you can PM someone on these boards but if you can, feel free to PM me.

Best of luck to you