Clozapine, and My Battle With Oversleeping

So frustrated.

My medication is incredibly sedating.  I have been struggling with oversleeping since I started Clozapine over three years ago, but this difficulty didn’t become marked until I started working full-time.

But all of a sudden now, it seems to have gotten worse.  I seriously am sleeping 11, 11.5 hours a day.  Last night, I went to bed at 9:30 PM, and ripped myself from bed at 8:30 AM.  I work full-time!  I don’t have a car, but instead take public transit.  2 gyms near me went out of business recently, so now I’m going to another one further from me that has only classes.  Translation: I get there whenever I do (via public transit), and then I have to wait ’til the hour to start working out.  I also am trying to keep a steady pace as a writer of essays and poetry, aiming for regular publications.
I was thinking of also getting back into playing the violin, given that the voices aren’t bothering me anymore when I play.  But alas… no time.

Fortunately, I work at an awesome agency.  And since I’m a peer specialist, my mental illness is out in the open and accepted.  There have been times when my job performance was not at its best, due to my struggling with relapse.  My bosses and coworkers showed incredible concern, and with their support was I able to pull through.

Today again, I called my boss.  I asked to do a half-day of work today, and he said that would be ok.  Thank goodness.  As soon as I could, I left home… at 9 AM.  (I usually start work at 9 AM.)  Then I went to the blood drawing center and got my blood taken.  I have to get my blood done every 4 weeks because of the Clozapine I take.  While it is a miraculous drug for me, it also can cause many complicated side effects.  It must therefore be monitored very carefully.

I’m seeing my psychiatrist next week.  I know it probably won’t do much good, but I’m going to ask her if I can lower my dose of Clozapine by a single, tiny increment.  I take 400 mg right now, and I want to try and lower it to 375 mg.  I think I can handle it.

Or maybe I should give up.  Throw in the towel.  Accept that I’ll never be fully “normal.”  I should just “learn to live with sedation without questioning it.”  Just “shut up and suck it up.”

When I attended the peer specialist training at Howie the Harp Advocacy Center, I learned that the voice of the patient actually matters.  I learned about the recovery model, which is the idea that recovery and wellness goes way beyond mere compliance with medications and a treatment plan.  It is not about “settling” for half a life.  True wellness is about living a life that is fulfilling and satisfying.  

And so now… I demand wellness.  And sleeping 11 hours a day is not my idea of wellness.
I know that my psychiatrist likely will not let me change the dose.  If this doesn’t happen, I’m not sure what to do.  She’s incredibly competent, so I am not keen on throwing her to the curb.  Many private psychiatrists will not accept me because I take Clozapine.  I’d say that most people who take this drug are profoundly disabled, so they get their psychiatric services from hospitals.  They typically don’t work full-time, so they have more time to devote to commuting via bus, more free time for appointments, etc.  

(I say this not to make assumptions about those who are disabled.  But I myself was in this position for several years, and so lived this way.  Thus, I speak from personal experience.)

I too was a patient at a specific hospital’s Clozapine clinic for 3 solid years, but I decided to leave once… things got bad.  See, my psychiatrist was always a resident.  I’d have the newbie doctor for 12 months and then, *poof!*  The doctor was gone, replaced by another doctor with again no experienced.  When I was assigned my fourth doctor, I realized… Something’s gotta change.  Especially since my circumstances had drastically changed within those 3 years.  When starting, I was unemployed and in psychiatric rehab programs.  3 years later, I was working full time.

Now I see a private psychiatrist.  It’s a miracle she puts up with me.  The Clozapine is very difficult to coordinate with the pharmacy.  See, first I have to get the blood work.  Then the results have to be faxed over to my psychiatrist.  If the levels are good, she writes me a prescription, and also fills out an extra sheet for me to give to the pharmacy.  It is illegal for me to get the Clozapine without this extra sheet.  Also, if my blood work is bad, then I have to get tested again.

It took a few months for me to adjust to this procedure.  I ran out of medication a couple of times, and had to go to the ER.  Also, I procrastinated the blood work, and so had to make some emergency appointments with my psychiatrist.  She’s truly a saint.  Most doctors would have abandoned me.

I write here now, so as to share with you the process I go through to simply remain mentally well.  I am at times envious, of those who have no need to jump through any of these hoops in order to live normal, satisfying lives.  Whereas I have suffered to get to this point.  Granted, I’m happy I’m well, but it took me a long time to get here.  I started taking medications when I was 14.  I was not stabilized on the “perfect” combination of drugs until I was 27.  And then I spent time in rehab, simply getting back on my feet.

I hope this process of figuring medications will take less time for people in the future.  So many years of my life were wasted, sitting in offices of psychiatrists who felt no guilt in offering me subpar treatment.  Watching me gain ninety pounds steadily.  Turning a deaf ear when I lamented that I wanted to work, but was too depressed to look for work.

This has to stop.  Psychiatrists need to hold a higher standard for themselves.  Because it’s not about sedating the patient into compliance.  It’s about improving the quality of life for a person.

I have faith that my future will be brighter than my days today.  And my days are already bright!  I hope that the sleep issue will be resolved soon, and that I can continue my merry way towards success and wellness.  As should everyone, for that matter.

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2 thoughts on “Clozapine, and My Battle With Oversleeping

  1. You are so right. Medications, even the best and most effective, can only ever be part of the answer. Of course, it would help if the workers in the system, from psychiatrists to peer supporters and all between had case loads small enough to allow them time to work toward success and wellness, and spend time listening to patients.

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