Why I Won't Change My Meds, Even When People Call Me Out, and Even When My Psychiatrist Recommends I do

Just a little disjointed rant about the cocktail of meds I am on, how they help me and why I don't want to change any of them

Photo by Towfiqu barbhuiya on Unsplash

I take a lot of meds. Let me try an list them:

-Depekane, a mood stabilizer first given to people with epilepsy to treat seizures.

-Prozac, an anti-depressant once thought to be the end-all-be-all drug for depression

-Fluoxetine, in pill form each day and every two weeks in long-acting injectable form. It is an anti-psychotic, I believe second generation.

-Cogentin, used for side effects of other medications

Along with these (hope I haven’t forgotten any) I take different meds for things like diabetes and high blood pressure.

Now, let me explain why I say I don’t ever want to change these pills. I am not totally against trying newer meds, but I am also acutely aware of what even a small change in medications can do to a person.

To start with, around 24 years ago I was living along and taking much the same medications as I do now. I felt lethargic, that I was sleeping too much and that my life was being pissed away. In reaction, I lowered my dose of depakene. I didn’t stop it, I lowered it. What I didn’t know was that depakene has to be at a certain level in a person’s blood in order to work properly. Lowering the dose was as good as stopping it. What baffles me, was that depakene was essential for my bipolar symptoms, but when it was stopped, I went into psychosis. I still don’t completely understand why the lowered dose didn’t just make my moods go up and down. One of the reasons I feel this is strange was that later in life, I had a change of antipsychotic medication that also sent me into psychosis. Perhaps it was a slightly different, more severe psychosis, but it was the same result from two pills that I thought had little to do with each other.

The result of the lowering of my dosage on depakene was that I went almost completely ballistic. Out of great concern, my parents got ahold of the crisis team who eventually got me to the hospital. End result? Five of the most horrible, devastating months of being on a lockdown ward with an incompetent psychiatrist who acted out of pettiness and wouldn’t see me or give me the medications that had once worked for me. I went through so many visits to the isolation room, there was a great deal of violence from staff and patients. Nothing could compare to this experience. I often think that I would have preferred being in jail over this experience.

Photo by Robina Weermeijer on Unsplash

The next reason I don’t like to even entertain the idea of taking my meds is that I take an anti-depressant and my doctor has told me that anti-depressants are not intended to be taken long-term. I do worry that the prozac I take could cause long-term health issues, but there are instances when I wasn’t taking prozac that led to disaster. One of them was when I was around 25 and had just about everything in life going for me—except that fact that I was isolated and incredibly lonely. I had a job, but even that was a security guard position where I worked a lot of nights where I was even more isolated but also the work messed around with my sleep. I called up someone I once cared about and was told she not only didn’t want to associate with me, but that she considered me to be a psychopath. My life spiralled downwards after that. I quit my job, stopped leaving the apartment and stopped taking my prozac. In a few weeks time, off the prozac, I made a very serious attempt at suicide. The devastation I caused my family was unfathomable. I had little idea not only that my family cared a great deal, but also how serious it was to take a bunch of pills not knowing their effects.

There was a second, more recent situation where my psychiatrist lowered the dose of my prozac. This threw me almost completely out of whack and anyone who knew me for a while was aware that something was seriously wrong. I couldn’t wait for my next appointment so I went to a local MD and had him put my dose of prozac back up.

One thing I feel I can be a bit of a hypocrite about is how I don’t like it when non-professionals tell me what medications I should be on, or when laypeople tell me things like, “You’re not crazy. You should stop taking your pills.” When I go to my presentations, and when I am in support groups, I often talk about a medication called clozapine. Clozapine, according to one of Edmonton’s most respected psychiatrists, Dr. Mowat, is something that almost every psychiatrist in Canada supports. The problem with clozapine is that although it works incredibly well in treatment resistant psychosis, it is a drug whose patent has expired. Drug companies don’t promote clozapine as they make little or no money with it, and instead promote newer drugs that don’t work as well but they can charge nearly any price for them.

As a quick note about medications, I don’t know how many of my American followers don’t have a drug plan and have to pay for their meds. I have looked into something that could be a big help. In many places, Florida being one of them, it is legal to import medications. The reason Americans would want to do this is that Canada has a lot of restrictions on what prices a company can charge for medications. There are online Canadian pharmacy websites that you can scan and fax or email a prescription to, and they will ship you medications at much lower costs. Please check the restrictions on this in your jurisdiction, and if you need any assistance finding a Canadian pharmacy website, I am happy to help. I can be reached at viking3082000@yahoo.com

But, back to the subject of why I don’t want to change or stop any of my medications—I had an amazing doctor—anyone who has read “Through the Withering Storm” will be familiar with him, his name is Dr. Brian Bishop, and he is retired. Dr. Bishop, along with his friend and colleague Dr. Alan Gordon were two of the most amazing doctors I have known. Dr. Bishop was sharp enough that I could go see him and we could talk about anything—camping, computers, cars. He would evaluate me by my ability to hold a conversation. I greatly admired him and he wrote the introduction to “Through the Withering Storm” he also gave me advice on selling books, telling me that I had to push. “Don’t be a shrinking violet.” he told me. I have taken that advice and made a success of the three memoirs and nine other books I have published. Dr. Bishop also told me when I asked about other drugs to treat my schizoaffective disorder that it wasn’t worth the risk to tinker with something that is working.

I do have some problems with my medications. Craving food I don’t need to maintain my health is defintely one of them. Another is having shaky hands. This may seem a bit far-fetched to connect with side effects, but one of the most important parts of my life is my relationships, especially with two women I am close friends with. If I ever was able to even start to look for someone to have an adult romantic relationship with, the side effects of my medications could be a real barrier.

Despite all I have to say about not stopping meds, there have been many instances where I tried to change or stop medications. One thing that often seems to happen (at least when I was in my 20s—I am 53) was that I would start to think about my grandiose delusions and think that it just wasn’t possible that everything I believed during delusional periods which were backed up by hallucinations and paranoia, were completely wrong, completely delusional. This led to me stopping meds and every time I did this I became ill and was eventually hospitalized.

One of the biggest things about that phenomena, which relates to my relationship topic is that each time I have been sent to a hospital, even when I was only ill because of a doctor-approved med change, I have lost more friendships and other relationships. I don’t fault these people, but I do wish I could somehow help them to understand that a mental illness doesn’t make a person a monster. Few people know about and fewer people talk about the devastating effects of mental illness on a family and on the life of the person who suffers.

Living with a serious mental illness when no one can talk about their illness is like cancer in the recent past. No one talked about cancer, people who had cancer were avoided due to ignorance. Many people even blamed people with cancer for making poor life choices. When people started to open up more and to talk more, there was more early detection, more funds raised for treatment, more people choosing to study and research cancer. Above all, more acceptance and understanding. Huge amounts of lives were saved.

Photo by National Cancer Institute on Unsplash

I am here to say plainly that 1% of the population lives with schizophrenia. This is a huge number, around 3 million people in the United States. Now I want to throw a fact at you that I think about every day of my life. 10% of those people, 300,000 human beings—will end their own lives, often because they are alone and isolated. Think about that. And reach out to someone who may be struggling. You may save a life. If you are a person who has an illness that involves psychosis, do all you can for the cause of awareness. In Canada you can join the Schizophrenia Society in many provinces. In the US, I believe there is NAMI. Volunteer. write letters to newspapers. Meet people of influence and tell them you are a human being.

All the best dear readers!