Finished Research, Staying Off Meds

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For almost 5 months now, I have been living at the National Institute of Health Clinical Research Center in Bethesda, Maryland. I have been participating in research on schizophrenia.

For the past 10 weeks, I have been in something called the “coded protocol.” For the past 5 weeks, I have been off medication and taking a placebo.

It has been incredibly difficult. I’ve gone through withdrawal worse than I could ever imagine.

For the first two weeks, I never got more than 3 hours of sleep a night. I had a constant fever around 100 degrees. I didn’t eat anything for 3 days and then for 11 days after that I probably only ate 500-600 calories a day. I lost 8 pounds in 6 days. I would go from drenched in sweat to shivering several times a day. I have been incredibly itchy.

After the first two weeks, withdrawal started to get a bit easier. My fever broke. I started being able to eat just a little more. I started getting 4-5 hours of sleep a night. But I still had nights where I didn’t get any sleep.

Probably 10 days ago I started seeing more dramatic improvement. My appetite has pretty much returned. I am getting 6-7 hours of sleep at night, but I usually don’t go to bed until after 3am. I am still incredibly itchy which often makes it difficult to sleep or even wakes me up.

Today, the “coded protocol” ended.

My doctor has agreed to let me stay off medication. In the 5 weeks that I have been off medication, I have not experienced an increase in symptoms. The plan is that I will stay here a while longer for observation. If during that time I need to go back on meds…then I will. If not, then I could be discharged off meds. I am excited to see how things turn out.

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When I came off meds three years ago, it took more than 6 months for the relapse to come and get me. So, don’t be so optimistic.

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I am not optimistic that I will be able to stay off meds. I actually never said that in my post.

I said that I am “excited to see how things turn out.”

What I meant by that is, I am sure I will eventually need to go back on meds. I expect that. What makes me excited is that when it happens I will be in a hospital under constant supervision. The doctors and nurses will witness the progression of my symptoms and how I deteriorate. This will pretty much secure a diagnosis for me from doctors leading groundbreaking research studies about psychotic disorders.

At home, various psychiatrists have diagnosed me with schizophrenia, psychosis-NOS, anxiety with psychotic features, and a variety of other diagnosis.

Being here and under constant observation, my diagnosis will become very clear. That is what I am excited about the most.

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Thanks for your explanation, I understand much more. Hope you get an accurate diagnosis soon and be able on the right medication.

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Sounds like you’re getting a lot of support from the doctors - which is great to see.

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Your journey seems like a harsh one. I’m glad it seems to be of value to you!

Jayster