Research Part 2

This post is the follow-up to my last post about being at NIH and participating there in research.  However, I was discharged from NIH in October 2014, after a 7 month stay.  I have decided to write this post to describe how the rest of my stay at NIH went, and then I will make another post detailing what has gone on in my life since being discharged.  I do apologize for how long it took for me to write this…I don’t really have a concrete excuse as to why it took so long.  Thank you to everyone who has been supportive and encouraged me to keep writing here.I stayed at NIH, for 7 months.  I successfully completed “The Coded Study” which took 10 weeks.  The last 5 weeks of that study brought me to one of the most difficult periods of my life.

The first five weeks of the study, I was taking Seroquel.  Although, at the time, I could not be told this and had no way of knowing that I was on medication for certain.  I was given a number of pink capsules every night, I believe usually it was 5 pink capsules.  For the first 3 weeks, everything went on like normal.  I went to the daily groups and went on nearly daily walks around the campus with other patients from the unit and some of the nurses.  Because I was on the Coded Study, I was no longer allowed to go on trips off campus with the rest of the unit.  So during those times, I had one-on-one cooking lessons with the Occupation Therapist.

Starting at week 4 of the study, my daily life changed.  Almost every week day, I had at least one MRI…but it was usually more like 2-3 MRIs a day.  Or, if I had one MRI, it lasted up to 5 hours.  Some of these MRIs only required me to lay still, sometimes with my eyes closed but without falling asleep, and other times I needed to keep my eyes open.  The very long MRIs were all fMRIs.  During these, I would complete tasks that allowed the researchers to see how my brain functioned while I did a number of cognitive tests.  Sometimes, I would have to listen to a long, very detailed story and then latter answer questions about that story.  Often, I did a test called the N-back (Wikipedia article about this test: ).  There was also a gambling type game, in addition to several other tests that I no longer remember as clearly.  I also participated in a couple hours of neuropsychological testing, and a PET scan.  All of this testing lasted two weeks…so, weeks 4 and 5 of the study.

There was then a week long break in which I was transitioned from being on medication to being off medication…although at the time I did not know for certain if I was transitioning on or off medication.

Towards the end of this transition and at the beginning of the 6th week of the study, my body basically began revolting.  At the end of the transition, I stayed up for an entire night.  I cannot explain what compelled me to do this.  In fact, I went about 45 hours without even attempting to sleep.  During this time, I also told a nurse that I felt like my skin was “buzzing” or “electrified.”  When I finally attempted to sleep, I only got a couple hours of sleep.  Four days later, I recorded in my journal that I had gotten a total of 12 hours of sleep in the previous 4 days.

I was in withdrawal from going off the medication.  For the next five weeks, I would either get no sleep at all at night, or only get 1-2 hours of sleep.  There were a few days I would get very lucky and manage to get an hour long nap.

Eating also became problematic.  Eating and drinking made me nauseous.  Not only did my stomach not appreciate anything being in it, but my brain would interpret food and drink as vomit when it was in my mouth.  The only way to get around this interpretation was to only eat or drink foods that were very cold.  So, for about three weeks the only thing I was able to consume was ice water and frozen yogurt.  But this was not a problem because I never had an appetite to begin with during this time.  It was as if my body had decided it didn’t really need food or liquid anymore.  As a result, I lost 14 pounds in the first 6 days of this section of the study.

I also had problems regulating my body temperature.  Several times a day, I would swing from feeling very hot and being very sweaty, to feeling like I was in a freezer and shivering, bundling up in blankets and hoodies.  This was occurring in July and being inside in the air conditioning or outside in the heat made no difference in what temperature my body experienced.

Smaller issues that still caused problems were things like, I had problems processing text, though I could still write very well, and I was always moving.  In bed, when I made attempts to sleep, I would toss and turn frantically…finding it very uncomfortable to lay on one side for more than a minute or two.  During the twice daily recording of my vital signs, getting an accurate reading of my blood pressure and pulse became impossible because I could not be still.  There was a running joke that I was a hummingbird, because it was common for my pulse to be read as over 200.

While I experienced all these symptoms of withdrawal, I contemplated whether or not I even wanted to continue the study.  I knew that if I stopped the study and went back on medication…I would feel significantly better within 24-48 hours.  Some of the nurses would tell me that it was okay to stop the study, and that no one would think less of me for doing so.  Other nurses told me that I was strong and that they had complete faith that I would make it through the entire study.

One weekend, I wrote a five page “essay” describing how conflicted I was about whether or not to continue the study.  In this essay, I wrote the following sentence: “When I wake up (after 1-2 hours of sleep), I feel a strong urge to slam my head through the wall because that might knock me unconscious and provide more rest.”

The essay was written in order to be given to my nurses.  That weekend, two of my nurses read the entire document.  Both voiced concern with that sentence…but talked to me about it and understood that I did not want to harm myself…I was just desperate for sleep.  However, one of the evening nurses who was not part of my personal team of nurses, read the essay and became concerned.  He did not speak with me, or the other nurses that had read the essay and determined that I was not a danger to myself.  Instead, he set into motion an official determination of whether or not I was suicidal.

An on call psychiatrist came to the unit to formally evaluate me.  She determined that I was not suicidal, but because of the concerns of the nurse, I was placed on 15 minute checks and restricted to the unit.  This was immediately a problem.  The frozen yogurt I was eating every day was obtained from the cafeteria that I had to leave the unit to go to.  Also, because the withdrawal symptoms often left me in an anxious state, I had been playing basketball every night with a few of the other patients and nurses in order to blow off some steam.  Being restricted to the unit meant that I could not go to the cafeteria or the basketball court.

Luckily, the nurses on my team realized that these circumstances were not exactly in my best interest.  The next day, the on call psychiatrist came back to reevaluate me and determined that I did not have to be restricted to the unit but did need to continue the 15 minute checks.

The day after that, the lead psychiatrist for the unit spoke with me and determined I was not a danger to myself and therefore all restrictions and increased checks could be removed.

I did end up deciding to complete the study.  I entered what I would refer to as “survival mode.”  My mindset was that as long as I was not dying, I could tolerate what my body was doing and I could continue on with the study.  However, I also decided that I would not participate in any of the PET scans when it came time to do all the testing again.  I was scheduled for 5 PET scans, each of them lasting 4-6 hours.  Every PET scan required an IV, and the anxiety I experienced in anticipation of the IV was too much to allow me to actually get the IV.  I also knew that it would not be possible for me to lay still during a 4 or more hour scan.  I did complete another series of MRI scans like in the previous section of the study.  Again, there were two weeks in which I had at least one MRI a day, in addition to a couple hours of neuropsychological testing.

After 5 weeks off medication, the Coded Study ended.  It was at this time that my beliefs that I was on medication the first five weeks and off medication the second five weeks were confirmed to be true.  I was also given the option to stay off medication and therefore stay at NIH a while longer, or go back on medication, stabilize, and be discharged.

I decided to stay off medication, because by that time I had gotten used to barely sleeping or eating.  The temperature regulation issues had mostly gone away.  The psychiatrist did decide that I needed to at least start taking medication that would allow me to sleep.  After trying a few traditional sleep aids like Ambien and getting no results, I was placed on a tricyclic antidepressant called Doxepin which finally allowed me to begin sleeping again.

I stayed off medications aside from Doxepin for another 5 weeks.  During this time, I was promoted back to a “level” high enough to allow me to go on outings with the other patients on the unit.  The first outing I was able to participate in was to the American Indian Museum in Washington DC, one of the museums I had been the most excited about going to.

Up until this point, I had experienced a lot of symptoms of withdrawal, but no increase in symptoms of schizophrenia.  In fact, I had hardly had any hallucinations at all.  The amount of paranoia I was experiencing was at an all time low…only being slightly triggered during walks around campus when I would worry about people shooting me.  But even that worry was extremely minimal in comparison to the typical amount of paranoia I had experienced in public before going to NIH.

To get to the American Indian Museum, the patients, nurses, and recreational therapist all loaded up into a van.  As soon as the van drove off the campus of NIH, my anxiety and paranoia skyrocketed.  I sat in the van, my muscles very tense to the point that my fingers and toes felt cold and numb.  I became overwhelmed by the traffic, which was moderate, but I was concerned that it was impossible for me to know whether the people in all the cars on the roads had guns or were going to shoot me.  At one point, the van passed a couple of police vehicles parked on the median.  I became concerned that this meant the police knew about a security threat in DC.  When we actually got to DC, all I could think about were car bombs going off, snipers shooting me, and planes crashing into buildings.  No one had really noticed during the trip that something was wrong with me.  It was only until we began exiting the van that the nurse and recreational therapist noticed that I was now non-verbal and extremely tense.  They tried to ask me what was wrong…but I couldn’t respond.  With every fiber of my being I wanted to tell them how anxious and paranoid I was…but I couldn’t make myself speak.

I didn’t notice anything in the museum.  Later, I couldn’t describe anything I saw in the museum because that wasn’t where my attention had been.  I had been watching all the people in the museum, wondering if they were going to kill me.  Every time a teenager ran by or a young child screamed, I felt like jumping out of my skin because I assumed the teenager was running because they saw someone with a weapon, or that the child screamed because they had been harmed.  At one point, I was able to blurt out the word “paranoid” when the recreational therapist was trying to ask me what was going on.  At that point, it was determined that the trip needed to end and we all needed to go back to the hospital.

This was the first indication that there was any change in my symptoms while being off medication.  After this happened, it was determined that I needed to go back on antipsychotics and I agreed.  There was also a large meeting of doctors, researchers, nurses, and other staff to determine my diagnosis.  It was decided that I have Anxiety-NOS (not otherwise specified) and Psychosis-NOS.  It was explained to me that their theory was that my underlying problem is anxiety.  When I get anxious, I then experience symptoms of psychosis such as hallucinations and delusions.  I was put back on Seroquel, and then a few weeks later I was discharged.

I do want to cover a couple things I haven’t yet covered.  The staff at NIH, especially the nurses, recreational therapists, and occupational therapist, were amazing.  Overall, they made the entire stay a wonderful experience despite that there were some very difficult periods.  When I was off medication and my mood would become negative, there was always a nurse willing to take me on a walk or spend some extra time with me to help me through that rough patch.  The recreational therapist spent several hours during the Coded Study working on jigsaw puzzles with me.  I spent a lot of time with the occupational therapist in individual cooking lessons.  When I was going through withdrawal, I was provided with a weighted blanket that really helped me calm down when I got frustrated or anxious about not sleeping.  In general, everyone I worked with was willing to go the extra mile to make sure that I was okay…and I witnessed them do the same for all the other patients on the unit as well.  They were all absolutely amazing.

Overall, my stay at NIH was a wonderful experience.  I learned so much about myself, and about new techniques to implement in my life to maintain stability.  I am so happy that I was given the opportunity to participate in research at NIH, and given the chance, I would go back to participate in more research without hesitation.

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3 Responses
  1. Edy says:

    How are you now?
    Your writing helps me so much.
    My daughter is suffering now.
    She stopped all meds,
    your writing helps me understand
    Why. How are you, where are you now?

  2. Edy says:

    How’d I get that icon?
    : (

  3. Edy says:

    Dear Dear Katherine,
    So glad to see you’re writing again! Looking forward to your next entry about the NIH adventure! I was ready to storm the gates during your absence. Your sharing is a lifeline!
    Until next time,

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