Reclaiming My Health

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When I was diagnosed with manic depression (now called Bipolar I), at the age of 19, as a student at Indiana University in Bloomington in 1989, I was told that I would have to take lithium for the rest of my life. I started taking it the summer before my sophomore year, and my athletic performance was immediately negatively affected. I quit the soccer team because my coordination had become so poor. I could no longer quickly visually track the ball on the field and I couldn't handle the ball or pass or kick as well. My body felt alien to me.

I spent my sophomore year focusing on school and trying to get used to my new life on medication. I had some friends on a cycling team who knew that I had quit playing soccer, but not really why, and they asked me to ride with them the upcoming summer. After a couple of rides they told me that I was really good and asked me to join the team. So, I joined the team, but something was still off physically, and I knew it. After not performing as well as I would have liked in the first few races, and also having unpleasant problems with dehydration, I decided to quit taking lithium. I told my teammates that I had manic depression, as it was called at the time, and that I had decided to quit taking my medication because it slowed me down too much. My athletic performance improved almost immediately. After discontinuing lithium, I usually placed first, second, or third in my races and was ranked third in the Midwest in women's collegiate cycling. My team also won the Women's Little 500 bike race, which was very exciting! However, I was having trouble concentrating, and feeling very restless, unstable, and pulled in different directions, and also experiencing psychosis at times, so after not graduating on time, I decided to start taking lithium, quit racing, and focus on my studies. Of course, I ended up gaining weight and suffering physically. I did not enjoy feeling slowed down, but I thought it was the price I would have to pay to get on with my life, and I finally graduated.

After graduating, it seemed like the best thing to do would be to continue to take my medication, even though it felt like a weight was tied to my feet when everyone was encouraging me to swim. I was not only physically slowed down, but I also experienced cognitive dulling. When I moved to Louisville, where I still live, I started seeing a new psychiatrist. I remained in his care for 16 years because he had a good reputation, my parents had chosen him for me, and it is really hard to find a good, or even decent psychiatrist. He seemed to believe that I needed to be heavily medicated.  At my most highly medicated, I was taking 1800 mg. lithium, 400 mg. Lamictal, 600 mg. Seroquel XR, Ambien to sleep, and Provigil for alertness (which didn't work for me). It felt like way too much medication and I was exhausted all the time. My life was out of balance. Work was my focus because I had little time or energy for anything else. My psychiatrist was resistant to making changes to my medication, insisted that I take lithium, and told me that he would not continue to treat me if I quit taking lithium, as he considered it to be the cornerstone of my cocktail of psychiatric medications. I consulted with a lawyer to discuss filing a lawsuit for malpractice, because I felt I had been turned into a zombie, and she did some research and told me that I was taking enough medication to knock a horse over. Instead of going through with the lawsuit though, I let it go and quit taking my medication without consulting with my psychiatrist. I lost 60 pounds in a year without trying that hard, and felt better, but I ended up becoming manic and being hospitalized again. After that hospitalization I told myself I would take my medication no matter what, and I did. I still had severe mood episodes and I developed serious side effects: hypertension, borderline metabolic syndrome, and sleep apnea. I also gained a tremendous amount of weight. When I was diagnosed with bipolar disorder, I weighed 130 pounds, and after taking medication for close to 20 years, I was up to 278. I had gained 148 pounds. My weight had more than doubled.

After suffering a terrible depression, having ECT, and ending up on disability, I finally decided that the seemingly substandard psychiatric treatment was just too much for me to handle and I couldn't take it anymore, so I found a new psychiatrist. She is a woman who is a few years younger than I am and she understands my concerns about weight gain and side effects and agreed to help me change my medication since I knew I could not just quit taking it myself without serious repercussions. I had educated myself about withdrawal from psychiatric medication and I found that many medications have withdrawals that mimic symptoms of bipolar disorder. She agreed to let me taper off of lithium. When I did, I experienced a bout of hypomania, but I also lost weight, was not thirsty all of the time, my hair became thicker (it had been falling out for years at that point), my psoriasis began to clear up, and I felt sharper and had more energy, and started becoming more active and taking better care of myself, and with alternative medications, my moods began to stabilize.

I have kept regular appointments with my new psychiatrist since 2010 and my health has improved a great deal. I no longer feel extremely slowed down by my medication and it is easier to work, cook, clean, exercise, socialize, spend time with family, go to doctors' appointments, and to appointments with my therapist. I have realized that in the past I waited too long to seek treatment too many times. Mania, psychosis, anxiety, paranoia, and depression can overwhelm me pretty quickly both mentally and physically. I need to take action and get help from my psychiatrist and therapist before I get swept into a downward or upward spiral.

Now that I have time to live a balanced life, because I am appropriately medicated instead of overmedicated, I focus on taking care of myself physically, mentally, and spiritually. I do not live a perfect lifestyle, but it is greatly improved from how I lived after my first breakdown, and for many years afterward. I work part-time and try to keep my stress levels low. I exercise, meditate, spend time with friends and family, and do volunteer work. Wellness is the focus of my life because if I am not well I can't enjoy anything or be of service to others.

11 comments:

  1. Thanks for sharing Andrea (as usual). It's so easy to feel alone in this condition, even though I have a milder form (type II). Having dealt with my mother's severe issues for the last 32 years, as well as my older brother's (which culminated in suicide) I can only imagine what others feel during those times.

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  2. Thanks for reading. I know there are many people who struggle and have little support. I am fortunate to have the support that I do, but there is a lot that needs to be done in terms of reducing stigma and helping people to get the healthcare that they need before they hit rock bottom. So many people try to get help for years, but they have trouble accessing it until they lose everything and end up on Medicaid. I don't think we need to let people fall so far before they can easily get help.

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  3. Ahhhg. I know I commented on this before, but it didn't take. :(

    It's really great to hear all the ways your life is trending positively. It's really a drag that there's SO much work that has to be done, but, I guess that's part of life. When you make a concerted effort to take control and figure out the best potential treatment and management for yourself, and continually do that, it can lead to a better life than non-sufferers have.

    I'm always an advocate of trying to manage with the least amount of medication possible, to prevent any disfunction, and try to best use any coping and life skills to prevent problems.

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    1. Thanks for your comment. I have heard that they don't always take. I'm sorry about that. I agree that managing with the least possible medication is the best. I take Trileptal, Lamictal, and Seroquel. The only one of those medications that gives me trouble is Seroquel. I have been trying to taper off of it for the past 6 months and after a recent mood episode, I am back up to 200 mg. Sometimes all the coping skills in the world don't help me and that is frustrating. When I was completely off of it, I felt good and had an extra 3 hours in my day because I spent less time sleeping. My concentration was better, my appetite was lower, and my mind was clearer, but my sleep was very fitful. I would wake up 4-5 times a night. I think my lack of sleep may have contributed to my mood episode. I have tried the newer medications like Saphris and Latuda and I can't tolerate them because they cause akathisia (inner restlessness, the compulsion to pace, and terrible sleep). I used to take Ambien for sleep, but now it is known to cause dementia. Melatonin doesn't work for me, or maybe I haven't found the right dose. Good sleep is the missing piece for me it seems. It is better since I have been treated for sleep apnea, but still, I only sleep one to three hours at a time, depending on the night.

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    2. Benedryl, or it's "drug" dyphenhydramine are the thing that controls my sleep. 1 or 1/2 a pill is enough to give me "decent" sleep, gives me an okay day following. I'm sure I could "cope" without it, but I find it's better with it. My pdoc says it's fine for long term.

      Maybe I'll get offa that some day.

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    3. You are fortunate that it works for you. It doesn't help me with sleep at all.

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    4. I have been attempting to recover from my illness for about a year now. I have made every effort to express my symptoms in there severity. Yet I do not see that my words have made any impact. I was diagnosed with bipolar type 1. I have debilitating highs and lows that gravely impact my functioning. I am in my 20s, and it appears that this generation of mental health professionals expect many bipolar patients to be similar to you, in that they believe minimal medication will suffice. I have implored my doctors to consider suffering and add additional medication to my Lithium and Geodon cocktail, but they seem passive and dismissive. I really am suffering through an anguishing depression, but they act as if I am making it up. Do you think I should go to another psychiatrist?

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    5. Getting to a state of recovery has taken a lot of hard work, but certainly having a good psychiatrist who you trust is very important. If it is not working out with your psychiatrist, I would find a new one. However, besides taking medication, there are many things you can do to help your recovery. I work part time, attend two support groups, am involved in my church, have a great therapist, exercise regularly, eat healthy food, and have my high blood pressure and sleep apnea treated. I believe that all of these things help my mental health, but having a good psychiatrist is very important.

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    6. Also, I like your blog, and I would like to subscribe to it, but I couldn't find a way to do that. You might want to add that feature. :)

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  4. Have you tried Trazadone Andrea? Because that works for a lot of people... It didn't work for me though it actually did the opposite and kept me up all night but it might work for you. I take Hydroxyzine which is like Benadryl but stronger and that really works for me but that probably wouldn't work for you if Benadryl doesn't. But maybe Trazadone would?

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    1. Thanks for the suggestion. I had the same problem with Trazadone that you did - it kept me up all night. Hydroxizine doesn't work for me either. Ambien, Seroquel, and Temazepam have been the only medications I've found that help with sleep, and they all have seriously bad side effects. I'm thinking about trying to get off of Seroquel again and just using it as needed. When I get good sleep my symptoms are much less likely to become serious.

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