Screw Compliance

So here I am again.  I have decided to stop taking my medication, Abilify.  More accurately I decided to stop taking my meds last Friday after my vision got so blurry that I decided not to go to my friends ultimate party - an event that I was looking forward to for months, an epic event not to be missed, that would be spoken of for weeks to come - because I could not make out their faces and I felt confused, scared, angry, frustrated and ashamed of this.  I went to bed at 10pm and hoped that my phone would remain mercifully silent. I do not need this anxiety thieving my quality of life. 

After that incident I decided that was enough.  It had a significant impact on my quality of life which was not an option that could be sacrificed for the cause.  I isolate myself enough as is due to my escort work that when I finally take a weekend off I still chose to hide away. No, this small social life that I have is too important to me to sacrifice. The tendency manic depressives have to isolate is not healthy and this could potentially lead to aggravation. 

I did not make this decision lightly.  I have been thinking about how long I wanted to take this medication for since the side effects first started.  I tried to ride them out, thinking I might get used to them or perhaps they would even go away in time, which happens with many patients.  However, they only worsened with time. Typical for me it appears. 

I still have faith in Abilify though. I’m not writing it off like I did with the other anti-psychotic med Seroquel, aka. the zombifier.  It undoubtably helped me through an acute episode of agitated depression, where the symptoms of the episode were definitely much worse than the side effects of treatment. If I have another mixed or manic episode I would definitely consider taking this medication for short term help.  I still have a 2 week supply which is going in my mental health first aid kit, along with my clonazepam and a flask of vodka.  The lithium and seroquel I threw away, I was so disgusted with them.  When I agreed to give lithium another chance my GP asked me if I had any left from my first round.    I looked him straight in the face and said I threw it all out one day when I was having a raging cleaning fit.  We both burst out laughing b/c its so typical for a manic depressive to do that. 

The main obstacle I had to determining an appropriate length of treatment was deciding when I was actually through the episode.  Since I was feeling good and functioning normally on the medication at this point I had no real way to determine if it was due to the meds, or if the episode had run its natural course.  The problem is that every episode is unique. It could last days, weeks or months. Its the nature of the beast. 

From my past experience I’ve found that it was acceptable to go off medication therapy after 2 conditions were met: 

1. I had been symptom free and stable for a defined amount of time
2. The triggers that instigated the attack had been dealt with/mitigated and a support network was in place. I would be returning to a safe zone, a happier healthier place than before.      

I discussed all this with my GP before making my informed decision to quit.  From the data he found people taking Abilify for bipolar disorder were OK to discontinue use after being symptom free for a minimum of 6 weeks.  I had been clear for 2 months now so it seemed the first condition had been met.  

The second condition is more complicated and can only be achieved to a certain point. My trigger has always been significant emotional stress (I’m willing to bet that improved management of my likely higher than normal cortisol levels - the hormone that regulates reactions to stress - would really benefit my mood stability).  In reality, its nearly impossible to eliminate all emotional stress from our lives, but coping strategies can be applied, arguments worked out diplomatically, those sorts of things.

  

I have come to realize that my father has been a recurring trigger for me, and has only created negativity in my life.  I made the extremely difficult decision to cut all ties with him in order to preserve my sanity, seriously.  There is obviously more to this story than I’m prepared to include in this blog so bear with me.  There comes a point in ones life when you have to look hard at where the sources of stress and joy are coming from, especially when they make you seriously ill.  I could find no joy or love from my father. He was selfish, lazy and continually hurt me by constantly dismissing my needs for his. He only cared for me when it was convenient for him. Despite this, I have finally learned to love myself and refuse to let him keep doing this to me, especially when I had other sources of joy and unconditional love that I should be focussing on.  

After cutting the paternal ties that emotionally bludgeoned me I felt as if a crushing weight has been lifted off my shoulders.  I have no regrets.  In my quest to be healthy I have surrounded myself with loving and nurturing people who are more deserving of my time.  I can not thank my mother enough for her support.  She is the best long term medical therapy I can have.  I found the strength to make my decision in her.  Years ago she decided to cut him out of her life as well, it showed me that its important to take care of yourself and your family first. 

Long story short, the 2 conditions were met and the side effects were now intolerable.  Time to stop the meds. I declare the agitated depression officially over and am mentally healthy again. Hooray! Screw compliance. Does this sound like someone who is ambivalent towards taking steps towards mood stabilization? Hardly.  

My next doctors appt is in 2 days and I’ll be discussing this with him further.  We’ll have to work on a monitoring and contingency plan I expect.  

- Brave New World -

So here I am facing the world again without chemical intervention.  But I am not ill prepared.  I have gained even more experience from this most recent battle. I have a firm grasp on what my triggers are, what my behavioural symptoms include (my warning signs basically), a support network of friends and family to slap me up side the head as needed, a mental health first aid kit, and a fabulous GP who will help me with medical intervention without judging me (I’ve had some bad doctors in the past which will be the discussion of a future blog I will assure you). I feel confident and secure that I can handle my mental illness to a large extent. I fully expect there to be times when I need medication again, but accepting this and planning for it is truly half the battle.  I don’t expect it to be completely smooth sailing for the BSW but who’s life ever is?  

Non-compliance

Doctors often look at their manic depressive patients as being non-compliant. Like we’re being difficult on purpose, stubbornly denying the route to good health.  If manic depressives only took their medication they’d be OK, they’d be able to control their cycles of highs and lows.  Yes, well maybe so, but its just not that simple.  It never is.  If health care providers could walk a mile in their patients shoes they might be more sympathetic.  The reason I don’t take long term medication is due to the fact that every long term medication has had worse side-effects than my disorder has me au natural. 

I have tried several medications for controlling my bipolar disorder, including Lithium, lamotrigine, seroquel, abilify and other antidepressants not appropriate for me.   I can tell you about my personal experience on each drug, keeping in mind that everybody tolerates side effects differently. 

1. Lithium is the standard mood stabilizer prescribed to most bipolars.  It is clearly effective in stabilizing mood swings and preventing suicide in manic depressives. It also has a long list of side effects that many people have to endure.  I tried lithium twice. Gave it an honest to goodness fair shot.  The first time it gave me the awful tremors. They were significant enough to impact my life, so bad that I was accused of forgery at the bank.  Embarrassing to explain.   The second time (4 yrs later) it caused extreme drowsiness, fatigue, diarrhea and gas.  I could barely get off the couch and when I did manage to get up and go out my gas was so bad that I scared people out of the aisle in Shoppers Drug Mart. I was mortified.  There are some things that are just too disrupting to ones lifestyle that the side effects are too much to endure.  Lithium was not for me, my doctor agreed.
2. Lamotrigine gave me a rash that would have potentially led to a fatal complication. Thus I had to cease my therapy under my doctors advice. 
3. Seroquel, even at the lowest therapeutic dose, turned me into a zombie.  I would not wake to my alarm clock.  A bomb could go off next to my head and I doubt I would even notice. I would be late to all my appointments. I could not find the spoons in the kitchen when getting breakfast. Etc...  All this was too much for me.  I will not be zombified, I like being alert and aware of my surroundings.
4. Abilify is the most recent drug I have tried and am currently taking. It is an atypical anti-psychotic medication and has helped me through my latest mixed episode of agitated depression.  It was fast acting (within the first week I noticed improvement) and I am tolerating this drug fairly well except for 2 side effects: tardive dyskinesia (a movement disorder causing involuntary facial muscle spasms) and blurred vision.  During the first couple weeks I never noticed these side effects but after the third week it became obvious that both these side effects would impact my life.  I have a tendency now to purse my lips and make a small squeaky sound.  It is controllable when I think about it, but if I don’t it is enough to annoy the people around me, e.g. those next to me on the subway cast dirty looks at me. I can deal with this though side effect although my doctor is more concerned that it risks becoming a permanent quirk. The side effect that is more bothersome is the blurred vision.  It is definitely affecting my quality of life and is the reason I am considering terminating the course of treatment when I can safely do so according to my doctor (which is 6 weeks symptom free while medicated, I am now at 4 weeks since I have had any symptoms from my last episode).  I play sports and my depth perception is poor.  I often have difficulty seeing long distances now. This is not good for athletes. It also makes me squint when I watch TV or read. But it affects my social life because when I can’t see the faces of my friends I feel embarrassed and tend to just isolate myself rather than admit to my friends that I can’t see well. This is incredibly frustrating for someone who brags about having 20/15 vision after lasik. Social isolation is not good for bipolars.  I’m not sure how long I can tolerate this particular side effect as its not getting any better over time like I had hoped. 
5. Valporic Acid (e.g. Valporate, Divalproex, Epival) is the most recent drug that my psychiatrist is pushing on me.  Undoubtably, like lithium, it has a proven track record for mood stablization, however, it also has a long list of side effects (I won’t list them all here in the interest of time, you can read the lengthy list on its website if interested).  The fear that is stopping me from taking Valporate is that 15% of patients report hair loss.  Now also that means that 85% of bipolars take it well.  The specific problem I have is that a close relative who is also bipolar and has taken Epival in the past endured significant hair loss which she has never fully recovered - from despite doctors saying that when you stop taking the medication your hair will grow back so no worries. Lies.  I have many of the same tolerances as this relative thus I am hesitant to take the risk.  Although it is extremely superficial I would be devastated by losing my hair.  I am a young pretty vibrant woman and I am unwilling to risk losing my hair, sorry.  Women need nice hair more than a good mood. That’s life. 
6. There is one more major mood stabilizer (besides lithium, lamotrigine and valporate)  that has been recommended for me if I do not choose to take Valporate - this is Carbamazepine (e.g. Tegretol). However, there is often significant weight gain associated with those who take Tegretol and I refuse to even consider this.  My psychiatrist actually agreed with me in this regard.  Considering my history he knew that this would be problematic for me.  Escorts in particular don’t gamble with hair loss or weight gain. 

Hopefully this has given you a brief yet general understanding of the ordeal I have been though when trying to stabilize my moods using drug therapy.  I honestly gave each drug a try, taking it for several weeks solely and objectively before making a judgment call on how it affects my mood disorder and my lifestyle which is undeniably another significant component of emotional well being. 

So what is a bipolar scorpio woman to do when all the drugs that are supposed to help her mood chip away at her body and soul in the meantime???  

In my most recent assessment my psychiatrist said that I am “ambivalent about basic steps to achieve mood stability”.  I strongly disagree.  I care very much about achieving mood stability and exploring the drugs that could help me, but I also care greatly about maintaining a standard quality for my life.  I have not yet found a balance using medication. Its only the moments between episodes I suppose I feel balanced.  But do I always need to be balanced? That’s a little boring isn’t it?