The Delusional Drug

Me: “They’re sending me messages, Mum. I swear, they’re sending me messages.”

Mum: “Who are sending you messages? What do you mean?”

Me: “I don’t know who, but I just know that they’re sending me messages.”

I was petrified, confused and exhausted.

I had just turned 19 when I first noticed something wasn’t right. It didn’t seem tangible. It wasn’t like anything I had ever experienced before. My brain was completely muddled and I felt like I was at a loose end. It was December 2012, and I was preparing to travel and volunteer for five months in Tanzania, East Africa. I had just started taking one of the more controversial, but very effective anti-malarials – Mefloquine, also known as Lariam. My Mum was cautious to start me on this medication due to the adverse effects my Dad and brother had experienced in the past. However, because it was taken on a weekly basis, it seemed the most logical choice.

I was experiencing symptoms for roughly two weeks before any of us realised that it might be the drug I was taking that was responsible. I started to make unusual connections that would be regarded by a healthy brain as nothing other than very tenuous. I started to believe that my girlfriend’s family were sending me messages through brochures they were leaving at my house. Because of these ‘messages’, I believed that I was a bad person. I was waking up at 4 or 5am, wide awake, with a strong urge to get out of bed and keep packing my bags for travelling. I developed a fixation on this. 

I soon became very low in mood and I vividly remember breaking down in tears in front of my whole family at the dinner table. I was unable to articulate what was causing me so much upset. It was rare for me to cry. I was a rugby player. I was a man. It wasn’t natural for me to show so much emotion, or so I thought. 

Lariam is an antimalarial that is commonly used in the US and British Armies, and it was recently found that many troops had reported adverse side-effects, such as depression and psychosis. These are now well known side-effects of the drug. However, there was no strong family history of depression, and certainly not psychosis on either my mother or father’s side of the family. It was only when I started showing symptoms of paranoia that my mum told me to stop taking the medication immediately.

Soon after I stopped taking the Lariam and switched to an alternative – Doxycycline, my symptoms resolved. My mood returned to normal. My thoughts became clearer. I started to sleep much better. This brief encounter with darkness was over, for now. I flew out to Tanzania to teach English and help on a building project. It was incredible, and forgive the cliché, but I felt enriched from the experience. I came back happier than ever, feeling more independent and mature. I put my moment with darkness to the very back of my mind. It didn’t seem necessary to even comprehend what had happened. It was the drug, that was all. Why should I be concerned about it ever happening again? And then it happened again.

Awaiting my flight to Tanzania

Stepping Out.

I have never made told anyone my New Years resolutions. I just think putting that kind of pressure on something is setting yourself up for failure. I wish I could say that I haven’t made superficial false promises to myself to change my eating habits, lose a particular amount of weight, quit a bad habit, find a new love, or win a million dollars. I have, and I have failed. I think these goals are too specific and that was my issue. Over the past ten years, I have lost myself.

Lost myself in relationships, both platonic and otherwise.

Lost myself in other’s expectations.

Lost myself in my own expectations.

My biggest sadness for others is watching them be hard on themselves because they aren’t keeping up with someone else’s success. You don’t have to be at the same point in life as someone else.

I still have incredibly practical goals. I want to pay off some debt that I have been tip toeing around. I want to finish grad school. I want to advance in my career.

This year, I resolve to be me. Whoever that is… I want to be impulsive in ways that I have not allowed myself before. I want to move out of my comfort zone. I want to find my playful and adventurous side again.

I dyed my hair purple. I have always wanted to but didn’t for fear of what others would think. I was most concerned that my job wouldn’t allow it. But apparently this job doesn’t care, so I just did it.

I feel like I am stable emotionally on my medication and now I can breathe. I can know that these big exciting decisions and adventures are me finding myself and not mania.

A Guest Blog Post – NooseGirl

This is a guest blog from a writer that calls herself NooseGirl. She asked me to share this blog post with my fellow bloggers. What is said in these guests posts are the position of the author and not James Edgar Skye or this blog. I allow each author to write in the way they feel comfortable when sharing as guests or contributors. You can find Noosegirl @ http://breathingwithanoose.com

A “Tool” of Fear

In 2014, my psychosis graciously went into remission and granted a brief 6 month period of sanity. During that time, I was able to return to my former approach to living life and enjoy all my old interests and activities. It was during this period of stabilized sanity that my favorite band announced a pop-up tour. 

I am a devoted, typical Tool fan. Tool is an “art rock” group that realized most of their success in the late ’90s to mid-2000s. Ideal Tool fans tend to be extremely passionate, almost to the point of obsession over the band’s members, music, and lyrics. Collectively, Tool fans can exhibit such enthusiasm and fierce devotion that is reminiscent of a cult-like following.

Somewhat obscure, Tool doesn’t interview, release new music, or go out on tour frequently. Many speculate that aging has weakened the once powerful lead singer’s voice, and health-related issues are also suspected to decrease their visibility. 

When Tool announces that they are going on tour, it’s a big deal! Tickets sell out instantly, leaving scalpers as the only option from which to purchase a ticket. Fans are left to pay a steep price that reflects the rarity and coveted nature of the event. 

So when I learned Tool would be performing an hour and a half away from me in Hershey, PA, I jumped at the opportunity to treat myself and splurged $400 on a ticket. I was ecstatic and excitedly began counting down the days to the concert. It was about one month away.

By the time the date rolled around for the concert, my life had dramatically changed. Tragically, my sanity had once again become impaired, and all of the old delusions were back. This time, because it wasn’t a new experience, what I once considered as suspicion was now firmly replaced with neurotic conviction.

I assumed my brief respite from government interference was because I secret assignment had been aborted or redirected. But clearly, I was wrong because “Weirdness” (my pet name for all of the undercover agents that followed me) was back. Now I realize that the period of their absence was simply a restorative break. My case had now been returned back to active status. 

Weirdness’s return bolstered my confidence and understanding of how controlling and manipulating the government was in my life. I was surer than ever that Weirdness permeated every aspect and detail of my life. I no longer held faith that anyone or anything that I randomly encountered was real. 

Everything was masterminded. All had been engineered. I now viewed my life as a giant movie set filled with people that were actually actors. Each actor chose to play carefully designed roles refined and sharpened to manipulate and influence me.

Arriving at the Tool concert, I was full-blown psychotic. The environment delivered an overwhelming assemblage of “weird people” or actors and secret agents. They assembled and circulated all around me, each one purposefully placed to manage and deliver coded instructions.

The profusion of secret messages in the crowd was staggering. There were messages on their t-shirts, in their hairstyles, and incorporated into their jewelry. I even managed to detect the delivery of information in food toted around by the crowd. The continuous stream of data, directives, and commentary, was an absolute and endless assault on my overloaded and exhausted mind.

By the time the concert started, I was a complete mess replete with confusion, exasperation, and resent. Here I was at a long-awaited show of my favorite band, and I was miserable. It was impossible to enjoy the experience. There were just too many messages, too many secret agents. I was powerless to stop any of it. Reluctantly, I entered the arena and took my seat.

As the concert began, I tried to join in and get into the music. I attempted to stand and sing along, but my mind teamed with racing thoughts of government control and interference. I began over-analyzing the music deciding that there was something “off” about it. Ultimately, I convinced myself that it really wasn’t Tool that was performing. . . just imposters.

To confirm my suspicions, I decided to rush the stage and get a better glimpse of the band. I made it almost 6 rows away from the scene, but the security guards stopped me and sent me back to my seat. Their denial of access confirmed my suspicions. And, more shockingly, I had figured out an elaborate sham. That wasn’t Tool on stage. It was a group of government agents performing their music. They had used a fake Tool band as a lure to confine me in a crowded arena environment. It was a trap. And I knew I needed to get out before they captured me.

So in an unnerved and exasperated dash to the door . . I LEFT  . . . 

  • I left my favorite band and a rare performance
  • I left after only 3 songs
  • I left my $400 seat.
  • I left feeling defeated by frustration, confusion, and fear
  • I left overflowing with all-encompassing anger
  • But most importantly, I went with the satisfaction of knowing that this secret-society-government-sex cult had planned to abduct me and I had outsmarted them . . . this time anyway

Being Doubly Shamed in Psychosis

There’s something strange that occurs in highly stigmatized identities: the shame of being that identity and the shame of wanting to be identified as that identity. As someone with a degree of sustained insight, it was difficult to explain how my life was being run by a bunch of lies. Lies that would make me too scared to shower alone or to shower with the shower curtain closed. Lies that convinced me that I was actively pursued by entities that I couldn’t fully comprehend. And lies that convinced me that my own wife’s miscarriage was part of a curse and that it was all my fault.

Psychiatrists became dismissive when they saw that I did not fit their cookie-cutter description of a diagnosis. “That’s totally normal,” they were deadpan, despite my anxious demeanor, “everyone experiences those kinds of things.” True, everyone gets spooked by shadows… but I felt as though this was different. I was and am too afraid to bring it up to a psychiatrist for fear of being lambasted for my insight that I was too afraid to go home to shadows that patrolled my apartment. I was convinced something was happening, I just needed someone to believe me, to listen.

By fighting for an identity I never really wanted, I came across a paradox. I was stuck. I felt like I was fighting so hard for attention rather than getting support. I got very weak and tired from running away from psychosis yet being pulled towards it that it’s wearing me down. And I can only imagine how this must feel for someone who has to fight this on a daily basis: with doctor’s monitoring, family members judging, society portraying stigma…

I am convinced that all of this was my fault; whether through society, the medical community or my own self-esteem. Maybe I’m here, with 4 televisions on, yelling in the hallway so I can scare off the shadows because I made myself this way for attention. At this point, I don’t want to seek out assistance or services because of the question they will inevitably ask: “how can I help you?” and I will have to admit that I truly believe that something is wrong that I am experiencing psychosis.

I just want to reveal something that haunts me deeply, something I try so hard to suppress, and just get some sort of support and acknowledgment. This idea of dismissing people’s experiences in hopes of that helping them feeling better somehow is erroneous and needs to be exchanged for a better tactic: just listening.

Photo Credit:unsplash-logoMitchell Hollander

Are Antipsychotic Drugs Safe?

Today’s topic is an interesting one to write about, are antipsychotic drugs safe?

I am by no means an expert in the field of medicine and what works for a mental illness. Instead I write from exeprience.

I have been taking antipsychotics since day one of my diagnosis of Bipolar disorder. My antipsychotic of choice is Quetiapine (known by its brand name of Seroquel.) In my own life, it is the most important drug that I take besides Ativan. I have taken Seroquel every day for the last ten plus years.

Seroquel became a part of my daily cocktail of medications because I was hearing voices. It was during my first suicide attempt when I was first brought to the hospital and entered the psych ward. Over time, my psychiatrist put me on the strongest dosage allowed. I have been up and down with the dosage ever since.

It is this one medication that I can’t live without, but the side effects are often something that I have “to deal with.”

That is where I want to go first. One of the things that I regret in the beginning when first receiving my diagnosis is that I didn’t ask questions about anything. I did what the doctors told me and took any medicine that they gave me. I did some research in later years but by then medication was a part of my life.

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I didn’t care enough about myself at the time to understand taking antipsychotics would mean having to live with side effects.

Here are some of what I deal with daily when taking Seroquel.

The simple ones are dry mouth. I have to combat that with lithium as well so I drink lots of water throughout the day. I also chew gum. I often go through a pack in three or four days (sugar-free of course) and gum also helps with anxiety.

When I have already taken my dosage, it can sometimes leave me dizzy when trying to get up to walk around late at night. Even at a high dose, it can take me up to three hours to get any real sleep.

The one I struggle with the most is when waking in the morning. Seroquel is a powerful antipsychotic. I use for sleep beyond keeping my psychosis in check. But in the morning it sucks. I wake usually at around six or seven in the morning, but I am not really awake. I can feel still partly asleep. It can take up to three hours before the Seroquel has left my system completely and I can get out of bed.

When have to force myself to get up and it takes a mountain of caffeine before I am myself again. Seroquel stays in my system longer the higher dosage that I am on. At the moment I am at 500-600mg most nights.

I wanted to dedicate the rest of this blog post talking about an important part of any new medication but antipsychotics in particular. It is paramount to always research especially when taking antipsychotics.

  1. It is important to know the risks of antipsychotics. You can achieve this through research on more than one source. Complete information on any medication you will need to make the right decisions.
  2. Don’t be afraid to tell you, doctors, you don’t want to take an antipsychotic. In the beginning, it would have been better to know that over time I would become more reliant on Seroquel. My first dosage was 50mg and it has done nothing but increase over the years.
  3. Also don’t be afraid of the side-effects. Antipsychotics have their uses and if you decide you need it but are afraid of what you learn, don’t be. Everyone is different. You can write down what is working and the side effects in a journal and discuss it with your mental health team.
  4. My last point is exploring alternatives to medication when it comes to antipsychotics. I was very anti-counseling when I was first diagnosed. I still don’t go to group therapy because it’s not for me. But for you, it could mean never taking a medication ever.

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I am sometimes left wondering if everything I deal with today could have been different without medication.

I am by no means an expert. I always write my blogs through my own experiences. It is always good to listen to what your psychiatrist or doctor is telling you. They have the expertise that I don’t, at the same time the long-term effects might be something you don’t want.

I can’t imagine taking Seroquel because without it I may slip back into psychosis. What is even worse I may never sleep again without taking my Seroquel. it is the only medication that can put me to sleep anymore, and I have tried everything under the sun to sleep.

To answer the question if antipsychotics are safe, my answer isn’t so easy. Antipsychotics have their place and for the most part other than depending more on it, Seroquel has been good to me. It’s important that we work with the people on our mental health teams to find what works for you.

Always Keep Fighting.

J.E. Skye

Photo Credit:

unsplash-logoJonathan Perez

unsplash-logoHush Naidoo

unsplash-logoKatherine Hanlon