Back in the nineteen seventies, doctors at a large American mental hospital decided to try an experiment. There was this new drug out that had been used successfully for manic-depression in Australia called “lithium carbonate”. They didn’t have many manic-depressives – or so they thought – but they had lots of schizophrenics, so they went ahead and dosed the whole population – thousands of them – just to see what would happen.
Two thirds of them got well enough that they were discharged. American doctors learned that they needed to take a hard look at their diagnostic procedures, but more importantly, they discovered a powerful new medication that didn’t have the intense side effects of other drugs used for bipolar mania such as thoraizine – an infamous “chemical strait jacket” that made patients drool and shuffle about like zombies.
Lithium let us go home. Think about that. I am here and not in a mental institution because of the legacy of that experiment. Though I am now on another mood stabilizer it was the success of lithium in treating others like me that led to a revolution in psychiatry. Instead of being locked away, we get to live outside hospital walls and lead productive lives. We are free.
I take a medication called “carbamazepine” or Tegretol. It is a mood-stabilizing anticonvulsant, a class of drugs that can be used to treat both bipolar disorder and epilepsy. I’ve been on it since the end of a disastrous summer of medication changes that ended in 2008.
Carbamazepine makes me feel unusually clear headed. The only side effect that I have to worry about is a low white blood cell count. My endocrinologist and my hematologist watch those numbers for my psychiatrist and for seven years they have been good. It does the job for me – I don’t suffer manias and mixed states like I used to. Without the manias, I don’t crash into catastrophic depressions. Unlike the atypical antipsychotics or depakote, it doesn’t make me gain weight.
I learned through experience that carbamazepine does more than stabilize my moods. It also works to relieve nerve pain in some people. A few years ago, I hit my elbow. I lost all sensation down to my little finger and half of my ring finger – right down the middle like this. My doctors were skeptical of my numbness. Shouldn’t I be hurting? But then I got to a neurologist who examined my formulary and said “Ah, you are on carbamazepine. That is why you don’t have any pain.” It doesn’t work like that for everyone, but I have also found that it tames my migraines. It is a good drug for me in many ways.
Now don’t go running to see your doctor about getting on carbamazepine because of my story. Tegretol doesn’t work for everyone. Not even lithium – which is the gold standard for mood stabilizers – helps all patients. The rate is 70% which means that approximately one in three people who take lithium get no relief from it.
I have to emphasize that part of your job as a patient is to be, well, patient. You’ve got to try medications for yourself, noting what side effects they have and how well they control your symptoms. You have to be honest with your doctor, but you also have to hold your place as a member of your team. I don’t advise noncompliance every time you experience an unpleasant side effect – I know a fellow who stops every time he feels a tinge of nausea – , but sometimes you do have to stand up and say the medication isn’t the one. And you have to conduct honest trials: you have to take your pills if you want to know how they work for you.
They say that about a third of us are always compliant; a second third is compliant some of the time; and the last third is never compliant. If you were to ask my psychiatrist or my wife or my friends, they would tell you that I am in the first third, but if truth be told, I think my record is a little murkier.
Shortly after I went on carbamazepine, I struck a deal with my psychiatrist: I could decide how much I would take as long as I stayed within a certain range. Naturally, I took the lowest dose that I could get away with. I was always on the edge, not quite manic but not quite stable either. After even I grew tired of my rages, my speeding, and my running of red lights, I decided to take the higher dose. I felt a little fuzzy for a time, but in the end my head cleared.
The next time you think about stopping your meds, remember the bad days. Remember the depressions that came after your manic episodes. If you are one of the “lucky” ones who didn’t crash, remember the pain you caused in the people closest to you. They felt your rages, they suffered with you as your spent all your money or had affairs. If you won’t do it for yourself, do it for them.
And remember the days that came before, when they put people like you and me into mental hospitals and forgot us. Look at these pictures: any one of these people could have been you….