Friday, September 23, 2011

Difficult Decision Parts I & II

I don't always know if people really understand how hard it is to decide whether or not to take medication. Most of the time, people judge those of us who go off or won't take medication, as if just taking it would solve all our problems. However, medication is just one part in the treatment plan for mental illness, and while it may help, it also has big risks associated with it.

In order to shed some light on just how hard this decision is, I have decided to share with you what it is like to have to make the decision to take medicine or not. I have two parts of this post already and I will follow up with future parts as I progress in this decision.

Difficult Decision Part I (written over a few days of thinking about taking new medication)

I was struggling a few weeks ago over taking new medicine. I eventually came to terms with the fact that I have to take medication and took what was given to me. However, I just got worse and worse. I saw my doctor again last week, and he prescribed another new medication for me. When I got home and read about it, I just couldn't make myself take it.

This is a new class of drugs for me, with side effects that are significantly more risky. The probability of getting one particular side effect increases the longer you take the drug, and it is not always reversible. I could end up with permanent tardive dyskinesia, which is uncontrollable movements of the face, mouth, and other parts of the body.

A new warning from the FDA just came out this month about the serious risk of anaphylactic shock with this medicine. There is also the risk of NMS, which is a potentially fatal side effect.

With the other medicines I have taken, I knew that if I had a side effect, I could stop taking the medicine, and it would go away. This new class of drugs has side effects that are not so simple.

Frankly, at this point, I am not willing to take such a drug. These side effects sound too risky to me. No doctor, no matter how amazing, can predict what side effects and how safe any medication is for an individual.

Maybe I am too crazy to know what is best, but I see no way in which it is safe for me to take this medicine. I do not understand how medicines like this are even ok for people like me. I have not ended up in jail or in the hospital due to my illness. Were I close to death because of this, I might consider taking it. Instead I am miserable and barely able to function, but I still do anyway. This will get slightly better sometime and I will go back to gain a bit more ability to function, but at least I won't die or be stuck with facial ticks because of medication.

Maybe it is because I have been sick for so long that I have gotten used to knowing I will always be miserable. I know miserable. I know the hell of bipolar, but I don't know these medications and the side effects that could happen.

Is it worth it to take such a risky medication when no medicine has worked so far? I risk my life for the likelihood that the medicine won't work. That does not seem reasonable to me.

Difficult Decision Part II (written the next day)

I took a lot of time to think today about how my illness affects others around me; my husband, son, parents, friends, work. I can see how the current severity of my illness is making my son more sad and concerned. I see how my husband and Dad truly worry that if I continue to get worse, I will kill myself. I know many of the lifestyle changes I need to make to be stable, yet I am so sick right now that I can not do them.

I have spent my whole life sick with times where I was more stable, but never had a day without my moods going up and down.

But my husband asked me today, "What if this works?"

If it works, I could wake up in the morning and not hate my life. I could spend as much time with my son as I want.

I could get things done more efficiently. My family could stop worrying about loosing me either from suicide or packing up and leaving them. I could maintain all of the other things that help with bipolar and be very stable, not just stable enough to get by.

So, I will try the medicine for the first time tonight. I admit, I am scared. However, I have been scared before and that has not stopped me from fighting for my life and what I love.

The decision to take medicine does not end the day you start taking it. I will need to see if it helps, monitor any side effects, and get regular blood levels taken. The decision is ongoing and never easy.

I hope this gives you a glimpse into how hard this is for many of us, and not a decision we make lightly.

I would like to hear how other people have made decisions over whether or not to take medication. What helps you decide?


Rev. Katie


  1. I have almost the same concerns and decision making process as you so I can completely understand. I was med free and in denial of my diagnosis for years until I had a nervous breakdown and had no other choice because I was hurting my family with my erratic and harmful behavior. It was scary. One of my meds has a side effect of a deadly rash that can eat your skin off. WTF? I didn't get the rash and it reigned in my Mania amazingly. Good luck with your meds and hopefully they will get you to a healthy place.

  2. All of the medications I have taken have side effects, but the ones I am taking now have more tolerable side effects. I am taking some medications and supplements to help counter the side effects. More research needs to be done so that better medications will be available to treat mental illnesses. These are just the best tools we have right now. Medication has made it easier for me to do everything I need to do to manage my bipolar disorder. That's why I continue to take it. Some advice: never go off of your medications if you are frustrated because almost all of them have serious withdrawals that can mimic serious mood episodes. Rather, work with your doctor to taper down if you want to go off of a particular medication. I have gone off my medications a few times in the 17 years that I have been taking them and I have had a really bad experience each time. I have resolved never to do that again.

  3. Katie, I love you so much for your honesty. And that's not just the caffeine-induced nearly 2am insomnia speaking, I swear. Thank you so much for having the courage to share the grit of your real life with the world. You really are an inspiration to me. I can't help with the medication strategies for mental health issues, I have been blessed to be spared those while managing my physical disability issues [knocks on wood]. I struggle with medication decisions to manage my physical pain a lot. When I dislocated my knee in June, I went back on very low doses of muscle relaxant, at night only, because it's the only way I can manage the side effects (grogginess & feeling like a zombie, plus floppier muscle tone making me even more prone to falls). That is the only daily prescription I'm on and I'm taking it at way below prescribed levels. I also, after having really bad side effects with medications in the past, generally will only take something that has been around long enough to be generic - figuring by the time it's generic they KNOW what the possible side effects are instead of getting surprised by finding out a new one through a class-action lawsuit or something. I doubt that is much help in your case though. Hopefully you can find something that works enough for you to get back to being able to do the other behaviors/techniques/life changes/whatever you need to do and then maybe get off the medication that is risky? Having a kid in the mix makes it all so much more challenging... but I know little Jeffrey knows you are worth it. You are an amazing woman and I am so blessed to know you.

  4. Thank you all for your comments. Still just waiting for test results and to see how the side effects go. We all struggle and just do the best we can with what we have. Thanks for sharing your stories.

    @Anonymous, I will take your advice and not go off the meds on my own.

    Rev. Katie

  5. I made a decision 2 years ago to take medication. I was adamant about doing everything naturally with supplements, diet and exercise. I started on the first mood stabilizer and because it worked well (or so I thought because I seemed to get better) I thought why didn't I do this sooner? The effects were short lived. I went into mixed states, rapid cycling, and a suicidal depression when my doc decided to taper off that one and transition to a new one. Changing meds is hell.Now after stability, calm, peace and contentment for 5 months, I can really say, Why didn't I do this sooner?
    I pray that you are able to find a med or combo that works for you. It's no fun living on the rollercoaster. I am happy not to cause my family so much worry or wonder.