I’m not starting from scratch. It isn’t as though I’ve just been diagnosed and the doctor is going to start the wonderful process of trial and error that is pretty much the de facto method for dealing with bipolar. I have to keep reminding myself of that. I’ve read books and done other research, I have extensive notes on medication efficacy and tolerability, I have real-life experience in fighting this garbage, and most importantly, I have an unshakeable determination to not back down.
Why is all of this so important? Or all at once, is it, even? In either case, some of you know what’s been going on, some of you don’t; I will explain. I will warn you, it is a rather long explanation.
I was taking a cocktail of medication that I honestly thought was finally The One. Clonazepam (Klonopin) 4mg for anxiety, liothyronine (Cytomel, a thyroid-stimulating hormone) 50mcg for depression, phentermine 75mg to help me lose the weight the ECT put on me, and Abilify (aripiprazole) 30mg, my miracle drug, for mania. Oh, and 8mg of tizanidine (Zanaflex) – the first pill that has ever worked consistently to help me sleep! That may seem like quite a few drugs, but for those of you who know me, or who have bipolar disorder, it’s actually not that much to be taking. I certainly didn’t mind it.
I was happy – not too happy, mind you – genuinely confident in myself and the progress I had made, and in the fact that we had finally found something that actually worked, without debilitating side effects. I was setting workable goals and I was happy to be a part of the world again. I had plans.
Yeah, so how does that old saying go? I’m just going to use my favorite incarnation of it, courtesy of Bon Jovi, “When God was laughing I was making plans.” (At least that’s what the song “Summertime” and its liner notes say. Look anywhere on the web, including the official Bon Jovi website, you will find “When I was laughing I was making plans.” No freaking idea why. Such things frustrate me, yet I won’t put the effort into correcting them. Big digression there, folks. My apologies.)
The problems started – allow me to correct myself, the problems began to come to light – when I went in to see my primary care physician to address the tremor I was experiencing. I have always had what’s called an “essential tremor,” meaning, for me anyway, that my hands and such have a little bit of benign shaking to them. In the past it would get worse based on various odds and ends like caffeine intake, lack of sleep, muscular exhaustion, little things like that, but it had always been something I could deal with. Well, almost always. I had been on a beta-blocker for it once before, which is why I decided to make an appointment with my PCP. You see, recently the tremor had gotten so bad that at times it radiated throughout my body, or prevented me from being able to write, or hold a cup filled with liquid. And texting or dialing a number on my phone’s touch screen keyboard – sheer torture. So I thought that I would go see the good doctor, he would give me a prescription, and viola! I would be able to function again.
I knew that at least three of the medications I was taking intensified it (liothyronine, phentermine, and Abilify), but I wrote it off as an annoying, but otherwise harmless side effect.
My excellent and extremely thorough primary care doc did lots of things to test my balance, joint movement, and the overall severity of my tremor. While questioning me he elicited the information that I had been grinding my jaw a great deal recently. I had attributed this to stress.
The doctor finished his exam, and told me that he wanted to consult with a neurologist to see if the Abilify (which is classed as an atypical antipsychotic) could be causing the tremor and the jaw grinding (more properly known as bruxism), both of which he referred to under the umbrella of EPS (extrapyramidal symptoms - in some cases, but by no means exclusively, movement disorders brought on by the use of antipsychotics, typical or atypical, used in the treatment of bipolar disorder and other psychiatric conditions), or more specifically, in my case, ”parkinsonian” symptoms. Um, okay, I was a little freaked out, but nothing major.
Fast forward a week or two to my next appointment with my psychiatrist. My very first question to him was, “How common are symptoms of EPS with Abilify?” Apparently, on lower, more common doses (5-10mg) they aren’t very common, although they do occur. On high doses, such as the 30mg I was taking, EPS can occur about one-third of the time (don’t quote me on that, that was just what my psychiatrist told me, I have not independently verified it). Abilify particularly carries a higher risk than some of the other atypicals.
My psychiatrist then ran through pretty much the same tests as my PCP, coming to the same conclusion, but noting that I had some “cogwheeling” in my arms. That basically means when I bend my arm it kind of catches and, goes “click-click-click,” instead of just bending smoothly like it’s supposed to. Honestly, all I remember from the rest of the appointment was that the doctor actually used the word “Parkinson’s,” and I kind of turned off and went into shock at that point.
I went home and immediately started my research. After two phone calls to my psychiatrist to clarify information I had missed in my somewhat altered state – bless him, he is excellent at returning phone calls and never makes you feel like you’re a pain, – and a great deal of reading, I learned about drug-induced parkinsonism. The information pertinent to this very long post is that the first line of treatment is to discontinue the drug that is causing it. It will reverse itself in four months or less in 90% of cases. In the other 10%, it can become permanent and progressive.
That last statistic scared the shit out of me. I was determined to stop the Abilify, not just drop the dose, and stay off of all antipsychotics completely. Happily, I discovered that I have kept quite extensive records of the drugs that I have been on, their effectiveness, my reason for discontinuing them, etc. Further digging led me to a drug combination I thought would be good to try in lieu of the Abilify: carbamazepine, an anticonvulsant used in treatment and prevention of mania; and methylin, generic Ritalin, which had previously helped my depression. I would stay on the Cytomel (liothyronine) and phentermine, since the former had worked miracles with my depression, and they were both pretty benign as far as side effects.
I was feeling quite upbeat and set some other goals, and made all sorts of plans, something I hadn’t dared to do for a very long time.
Of course, the other shoe had to drop.
Several days later, on a Friday, my PCP called me with the results of some lab work he had ordered on me. It seems that I was so hyperthyroid that I was practically off the charts. He instructed me to stop the Cytomel and the phentermine immediately. When I expressed concern that this could have a severe negative impact on my depression, he told me that if I stayed on the Cytomel, my heart could fibrillate (atrial fibrillation, the muscles in your atria start fluttering rapidly and randomly and you end up with an arrhythmia that can put you at risk for stroke or heart attack). He also thought that the hyperthyroidism was causing my tremor to become so severe, but not the other symptoms of drug-induced parkinsonism. I also spoke with my psychiatrist the same day, and he told me to start weaning off of the Abilify, cutting my dose in half.
Needless to say, it was an extremely rough weekend (this would be last weekend). Fortunately, I had been able to secure appointments with both my PCP and my psychiatrist for Monday morning.
The new drug regimen, with both doctors’ agreement, was carbamazepine (to treat mania) combined with a drug called Nuvigil (which is prescribed to promote alertness, etc., and I guess improve mood). My psychiatrist very generously provided me with about eight weeks’ worth of samples of both – I just had to put that in because I feel my whole medical team is so awesome and caring, and should be praised at every opportunity.
Unfortunately, my anti-manic had to be started at a very low dose because of side effects (I take it at night, and the first couple of mornings were sheer hell, I couldn’t get up off the bed without severe nausea and the very real possibility of blacking out – this would last for about one or two hours upon waking). Consequently, yesterday and into this morning, I began to experience symptoms of mania. That, my friends, is why this post is so incredibly long. To be fair, a lot has happened in the past few weeks, but I swear that if my brain had not been out of whack, I could have made this considerably shorter and still conveyed the pertinent information.
(Written 17 July 2010)
* * *
But here comes the (potentially) good news that is a product of all of that mess. When I felt I was becoming manic, I immediately contacted the on call psychiatrist. She was wonderful, just defying description caring and thorough and knowledgeable. She prescribed for me a drug called Neurontin (gabapentin). I had read about it, but never tried it. One dose immediately calmed my manic tendencies. The second dose is what I believe allowed me a solid, restful, good night’s sleep last night (along with a little help from some friends 
).
But it gets even better. My insidious, low-level, constant depression, which I seem to have gotten so used to that I just thought it was part of my normal mood – it’s gone. Completely and fully. I went grocery shopping today, and it wasn’t this staggering, overwhelming ordeal. I just got in the car and went grocery shopping. No big. If you’ve never experienced any form of depression, you may not quite understand that aspect but trust me, it is utterly transforming. No exaggeration.
I feel. . . normal is the best word to express it. The way I used to, years ago, when I wasn’t drugged up and I wasn’t in the midst of a mood episode. I honestly had forgotten how it feels to be so level, clear-minded, capable, and confident. It feels like a miracle.
But, it has only been a day and a half. This could be a complete fluke. In two more days my body may have adapted to the drug’s chemistry and the best effects might disappear. This is what I’m bracing for. Right now I’m performing a balancing act, with hope and utter amazement and profound serenity on one side, and knowledge of reality and my history and a fairly high potential for a return to my previous state on the other. It’s quite the tightrope walk. But the on call doctor said something to me that struck a chord. She told me that every day that’s a good day should be appreciated and enjoyed, even if it doesn’t last in the long run. Live in today and worry about and deal with tomorrow tomorrow. That got me. It also got me in the right frame of mind.
So I will close with a request. Please, if you pray, and you’ve got a moment, say a prayer for me, that this will last. If you believe in the power of positive energy and happen to have some to spare, please send it my way. Even plain old good thoughts have enormous power, and I would be forever grateful for some of those. And I cannot leave out luck, which personally I believe is the Universe’s way of helping you out. It would mean everything to me if you sent it in my general direction.
Thank you. My soul, my entire being thanks you.
All my love,
Always
(Written 18 July 2010)
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). I can figure myself out much more accurately and thoroughly just by living my daily life and paying attention. Paying attention to what makes me happy, to what pisses me off, to how I react to things and situations and people, and most importantly, paying attention to what brings me true inner peace and contentment, and striving to capture that tranquility and create more of it in my life.
