People with diabetes have to test their sugar levels for a lifetime.
Others must take pills for high blood pressure all their lives.
Why, then, do people with incurable bipolar disorder stop taking their medications?
Some patients stop medications when they feel better. Others complain of side effects and avoid their medication altogether. And then there is denial by the patient that they have a mental disorder, and a refusal to see a doctor, or take any medications. Perhaps it’s some bipolar patients don’t understand that bipolar disorder is a lifelong condition.
In 1973, when I was diagnosed with bipolar disorder (they called it Manic Depression at the time) my doctor prescribed 900 mg of Lithium daily. I didn’t know anything about Lithium, but, if it would help me feel and behave better, I was all for it. I must say, it wasn’t easy.
I can understand why bipolar patients avoid their medications, because the first thing I noticed was that all the fun was gone. My fast moving thoughts, all my bright ideas, and the excitement I loved went away. I felt dull, like every day was the same. No ups. No downs. I felt like I was a workhorse just plodding along, pulling a plow.
Before I started medication, my good days and bad days were unpredictable; I just didn’t know when they would happen. I might be up, and have all kinds of energy to mow the lawn, paint the inside of the garage, and then start a new project.
One day, when it was critically important for me to present a training program summary to the National Society of Training and Development conference, I was totally disconnected. I recognized all the materials I’d prepared, but I had no energy, no enthusiasm, and no clue how I had planned to make the presentation. My boss said he didn’t recognize me, and was disappointed.
Once I started bipolar medication, there were no good days or bad days. There were just days…all the same. It was like having the flu or a bad cold. Each day I would wake up wanting to get rid of it …the blahs. Blah, blah, blah!
The thing I hated was the fact that my wife thought my behavior was more acceptable like this. Predictable, I suppose, is what she meant. But I didn’t recognize myself and that wasn’t acceptable to me. Only fear of returning to my past unpredictable behavior kept me on my medication. In time, the Lithium and I compromised in some way, and I began to have more joyous feelings and less dreary ones.
Then came the blood tests, every three months, to establish the correct dosage, because too little wouldn’t help and too much would be toxic and make me sick. I suppose the doctor was pleased because my Lithium level was exactly where he wanted it. It stayed that way until 2016 when my new psychiatrist felt the level was lower that has been proven effective. He wanted my test results to be a bit higher.
I wasn’t sure I trusted this doctor. This was only the third time I’d seen him, and with over 40 years of success on the same dosage, I didn’t want to change. But, I’ve seen meds and treatments of bipolar disorder improve over the years, and since he was young, maybe he knew of something new. So, he had me reduce my anti-depressant by 20 mg. and increase my Lithium 150 mg. I was on pins and needles for the next week, expecting doom and gloom to return. It didn’t. I felt better, not so sluggish with more energy and initiative. I’m still on this dosage with minimal depressive episodes.
At the hospital in 1973, when my doctor prescribed Lithium, he told me not to change my lifestyle or my eating habits; especially salt, as Lithium Carbonate is a salt that combines with the sodium level in your system. If I were to lower my salt intake it would reduce the lithium dosage below a therapeutic level, and possibly render it ineffective.
A buildup of Lithium Carbonate can have adverse effects on the thyroid, kidneys and liver. I was living in Arizona when my doctor ordered blood tests including these organs to ensure there is not a lithium carbonate build up. I was surprised that other organs of the body could be affected by Lithium. My first reaction was “Oh my God! Nobody told me about this! After all these years, is there a problem?” It was disconcerting at first, but my test results were negative, and have never shown a problem.
The main side effect of Lithium is thirst. This frequent drinking of liquids is effective in cleansing the kidneys so there isn’t a toxic buildup. It’s surprising how a medication can affect behavior. I always have a glass of water or iced tea by my side, and of course require frequent restroom stops. Due to retention of liquids, there’s weight gain.
I don’t know how much liquid I drink, but it’s a lot! It’s not good when I’m around alcohol, though. I will finish my beer when others are just half done. I don’t hesitate to have another. Then I’ll have another when they refresh theirs, and so on. I’m not trying to suck down alcohol. I’m just thirsty. The alcohol just comes along, and that can be trouble.
Seven years after my diagnosis, I moved my family to Kalamazoo, Michigan. There I connected with the next psychiatrist in my journey. This was significant for two reasons. First, he informed me that manic-depression had been found to be a more specific disorder called bipolar, a name to describe my type of mood swings. Secondly, he said that research had proven an antidepressant, in addition to Lithium, would provide more stability in my moods.
A new category of drugs called SSRI’s (selective serotonin reuptake inhibitors) were available and my doctor prescribed one. The dosage was monitored and adjusted until he was comfortable that we had the right dosage. Like everyone else I thought “here we go again, new doctor, new meds.” Well, unlike Lithium which dampened the hypomanic behavior, the antidepressant actually helped me.
In Arizona, my psychiatrist told me to quit blaming all my behavior on my bipolar illness. I have a personality as well. But how could I tell the difference? A year or two later I discovered a clue! If my behavior repeated, I counted it as personality. If it didn’t repeat, then it must be a bipolar response. Don’t know if this is right, but it did reduce my concerns about my mood changes.
I do recognize that some of my depressive thoughts are my own creation. I can sit in my La-Z-Boy and develop anger at the fact my wife likes to have only one light on beside her. I hate that, I can create a whole scene of conversation and conflict in my head without saying a word or taking any action. If you interrupt me during this scene, I’ll transfer the anger to you, regardless of your behavior towards me. I was skeptical of the doctor’s advice, but in the end, antidepressants drastically reduced these dark, moody episodes. I’ve taken an antidepressant ever since, and am now down to only 1/3 the dosage I started with.
When I moved from Michigan to Mesa, Arizona my new psychiatrist prescribed three newer brands of anti-depressants one at a time. Only one was effective. That’s why I encourage you not to give up when a medication fails you, or you don’t like the side effects. You’ve got to keep trying to find the one that works for you.
After my psychiatrist retired, my new psychiatrist wanted me off Lithium to minimize my weight gain, and switched me to Latuda. I didn’t notice anything different the first or second day on this new medication. However, on the third day I had a consulting assignment 50 miles away. Only five miles from home I entered the freeway and a mile down the road I saw all three lanes blend together into one. I thought my glasses were dirty at first, and moved my head around to focus. Nothing changed, and I didn’t know which car was where on the road. Immediately I knew it was a side effect of the Latuda, and searched road signs for the closest exit.
In 2008, when hospitalized for an outpatient surgical procedure, I insisted upon taking my own medication with me. I’ve learned that different brands of the same medication can perform differently. A friend of mine had a similar problem. Generic medication dosages are uniform, but the fillers can be altogether different. He had a 90 day subscription that caused headaches and dizziness the whole time because of a different brand of generic. The next supplier’s generic medication relieved these symptoms.
If I were to use the hospital’s equivalent for my medication it could take me seven to fourteen days to stabilize my behavior. I’ve learned over the years that I need to protect myself, because others don’t understand. It’s my pain, and I’ll do anything to avoid it.
Managing bipolar behavior involves more than medications. Changes in mood are affected by factors in our environment.
It took eighteen years before I realized that stress had a huge effect on my bipolar behavior. Stress within my marriage caused my divorce in 1984. It was a dark and turbulent time of my life when I dealt with a high profile job, much business travel, and conflict at home. I had no idea that I was letting stress feed the bipolar monster that was having such a negative effect on me.
The biggest physical indicator happened in late 1984. My job managing a division of a training consulting company required me to wear suits every day. I was aware that I felt flushed, but was shocked to see that I was sweating through the underarms of my suits. I became obsessively self conscious, and checked my armpits a hundred times a day. It was embarrassing of course, and I knew that co-workers and clients noticed the wet spots on my suits, but I had no clue why it happened or what to do to stop it. I came to realize the job was bad for my health, resigned and sought outplacement testing and counseling.
In 1991, I changed careers, from the office environment, traveling and customer relations to property management on golf courses where I’d be outdoors, physically active and in the sunshine. The stress I felt in my previous job went away, and my behavior became consistent and predictable for months on end. How was I to know the best way to reduce stress is to do something physical, outside. Eventually I was to learn doctors recommend bipolar patients get regular exercise by walking, jogging, biking, etc. So just changing my environment did wonders for reducing my stress. And, the physical work environment was similar to the exercising I mentioned. I felt better than I had in many, many years, and behavior problems were a minor issue.
How Light Affects The Brain
Wow, was I surprised when my doctor coached me on this topic. Even in Arizona there is a variation in light duration between summer and winter. I learned to increase my anti-depressant in October for the shorter and lower light of winter months, then decrease it in May when the brighter sun and longer days of summer come around. It works so well that I increase my anti-depressant a week before my wife and I visit our children in the Midwest, because the skies aren’t as bright and sunny as what I’m used to in Arizona. This adjustment to low light works so well I no longer worry about getting depressed or the irritability of hypomania around family members. If you live in an area of low light, like the states of Washington or Alaska, light boxes have proven to be a helpful tool. They can provide the light your brain requires to minimize bipolar mood changes.
Sleep and Rhythm
Everybody needs sleep. But people with bipolar disorder need to control it. Sleep deprivation is associated with having manic symptoms. Rhythm is just as important as sleep. Sleep needs to happen at the same time every day to keep your body clock synchronized. Move it around too much and you may be setting yourself up for cycling, perhaps the harder to treat version, “rapid cycling.”
I do well with this at home, where my wife and I have a common and regular sleep rhythm. It’s when I’m away from home, visiting friends or family in different time zones that I get out of rhythm and sleep poorly. I’m hyper-aware of my behavior when traveling, because the changing sleep rhythms can trigger unwanted mood changes. If I get moody and irritable around family members and offend someone, the incident becomes a permanent part of family history. Consequently, I’m ultra-sensitive about my sleep rhythm. Returning from a recent overseas trip, it took me 7 days to revert back to my normal sleep rhythm.
If you have bipolar disorder, you should very deliberately manage your exposure to light and darkness, especially darkness. This may be as important for some people with bipolar disorder as regular sleep. The easiest way to arrange this would be to make sure you’re getting good quality darkness when you’re asleep. That means no nightlights (in one study, as little as 1/500th of midday sunlight, just 200 lux, was enough to disturb people’s melatonin, the sleep chemical in the brain.)
A stunning case example, from Dr. James Phelps research, demonstrates how powerful “Dark Therapy” can be. One of his patients, with severe rapid-cycling bipolar disorder, stopped cycling entirely – with no medications – just by carefully using very regular darkness.
Bipolar patients need light, and dark, but our light and dark should follow the sun’s natural day and night patterns. It’s interesting how much my life naturally follows this pattern. My wife and I both worked in the golf course maintenance business, requiring us to start work at sunrise. Naturally, when the sun went down we were tired. So, early to bed, early to rise became our lifestyle. Even though we’re retired now, we can’t seem to get away from this sleep pattern, with fits the light/dark cycle of the sun. I think it has helped me manage my bipolar behavior.
In summary, I strongly urge you to find a good psychiatrist to work with and trust him/her. Give honest feedback about how you feel and how your medications affect you. And then do your best to manage the environment around you so it works in your favor.