Why Close Follow Up Is Needed When Researching Mental Illness

Since my participation in the studies, I have developed seizures – both partial and complex type. A locked-down mental state ensued directly after completing the drug trials, and when I finally had the wherewithal to reach out, I received no assistance.

That locked-down state evolved into what I now know are seizures. How is this possible? I don’t know. I was told by NYU that I received the placebo in both drug trials. What I DO know is that there is a direct timeline of before and after: no seizures before the trials, many seizures after.

The following is my email to NYU reporting my post-reaction to the studies. The response I received was a phone call from Dr. Neumeister asking if I had taking any drugs or drinking alcohol – which I had not.

I am feeling somewhat ashamed by posting this and just laying my crazy out there for everyone to see – but this is important. It is raw, and it is real.

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From: xxxxxxxxxxx@xxx.com
To: xxxx.xxxx@nyumc.org
Subject: follow-up…rough week
Date: Thu, 19 Feb 2015 13:28:36 -0700

Hi xxxxxxx,

I couldn’t remember who I was supposed to contact with any unusual info, but I figured that as long as you got it you would pass it along to the right place.

Some follow-up regarding the mGlu study:

February 10th (Day One):

By the time I had left the building that day I was convinced that everybody was mad at me – you, Ben, Christy, Mike. It became difficult to really communicate these feelings. Given that sometimes I do have an overwhelming sensation of being surrounded by anger even when I’m not, I just kept reminding myself that it wasn’t real.

I also kept obsessing about going home. Home, home, home. Getting away was all I could think about. Despite implementing methods that I normally use to soothe myself, I had no real restful sleep that night.

February 11th (Day Two):

It honestly took everything I had to make it to the office. The two driving forces that got me there were not wanting to screw up the study and not wanting to make anyone mad at me. When the study activities were complete, I left immediately, still carrying that lingering sensation of having done something wrong.

I went straight to the airport even though my flight wasn’t for another 7 hours. I did not feel like I could tolerate anymore exposure to the city. I knew that at least in the airport I could find a place to hide, so I would find a quiet corner behind some pillar at an empty gate. When people started showing up for their flights, I would migrate to another empty gate.

I felt irritable, annoyed…pissy. I didn’t act out on it, it’s just how I felt inside. I was in what I call “autopilot mode”, where for at least a short time I can manage to act pleasant and be functional.

I just wanted to go HOME. I thought that once I got home I would feel safe, do my meditation, breathing, etc. and then this feeling would blow over, but it didn’t.

February 12 – present:

Now I’m in “lockdown mode” – not something I haven’t experienced or managed before. It’s what follows “autopilot”.

Ears ringing, irritable, hands and feet are ice cold (and I’m finding it difficult to keep warm in general), hard to swallow and no appetite. My entire body has been tense, my muscles ache, and I have a mild headache because I keep clenching my jaw.

SUPER sensitive to people’s moods. Scattered, disorganized and I have difficulty focusing on anything, even briefly. For example – I’ll try to read something. I think I’m reading it, but then suddenly I realize I haven’t actually read anything but maybe the first two sentences. It is very frustrating.

I am isolating hardcore. I haven’t left the house since I got home. I am having a difficult time being around anybody right now. In fact, I’m having trouble leaving my little “safe” corner of my house right now. It feels like I’m stuck, and I have to force myself to move. The days are slipping by and I’m losing track of time. I’m not really doing anything physically in that lost time…the best way to describe it I guess is that I’m lost in my own mind.

My husband said that Saturday he was getting worried because a few times I said some things that didn’t make any sense (unusual for me), but while I’m still not talking a lot he says that he hasn’t witnessed that behavior since.

On Sunday I discovered that my previous issues with tachycardia have returned. I don’t feel my heart pounding or anything – I discovered it after taking my blood pressure because I felt a little woozy. Resting heart rates were in the 120s, standing in the 160s. As of now it has gone down to a resting rate in the 90s.

With regard to the tachycardia, there is one major difference from the episodes I’ve experienced that were in conjunction with flashbacks: while my pulse rises significantly upon standing, my blood pressure is stable. With flashbacks, my pulse would rise, my blood pressure would bottom out and I would pass out if I didn’t lie down. That is not the case with my current experience.

Still, I’ve had some trouble communicating…it’s not that I don’t WANT to, but that feel like I need to be quiet. What is unusual is that normally when I lock up (with a flashback) I only lose my words verbally, but somehow I can still write. This time it’s been a sensation of having so many things that I want to convey, but could not bring myself to either speak or write the words.

The reason I haven’t notified you of how I’ve been feeling is that this is the first day in which I’ve been able to force myself to write anything more than just a few lines.

All in all, this is very similar to how I was feeling physically when I went through some severe flashback episodes in 2012. Like…a flashback without THE flashback, with three noticeable differences:

1) No visual “haze” like I used to get when having a flashback
2) Although my tachycardia has returned, my blood pressure is stable
3) Flashback communication: couldn’t find the word I wanted to speak, but could communicate in writing more easily.

Current experience: no problems finding words, but great difficulty in both verbal and written communication

I am doing ok – I know this will pass. I just thought it might be information that I should pass on to you guys. Thanks again for everything you all do.

Kindest Regards,

Diane

2 Comments

  1. Karen S DeMello

    February 20, 2017 at 3:31 pm

    There is no valid or humane excuse for the lack of follow up. Some big cages need to be rattled.

  2. Friend

    March 24, 2017 at 7:54 pm

    Id give 10 Years of my life to have you not suffer ever again

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