Disclaimer: The experiences expressed herein are those of this writer. I appreciate the feedback that has been given to my other blogs on this topic, and I am writing now to address some of the questions and comments that were brought up but not resolved.
Thirty one years ago, I had my first full blown manic episode. I was not diagnosed with bipolar disorder at that time; the situation was labeled an “acute psychotic episode.” I was medicated with an antipsychotic and anti-tremor, which left me with a zombielike stance and uncomfortable dystonia. I quickly went from 145lbs. to 200lbs. Most of my friends from childhood alienated me, which is still devastating. Although I was attending college, one instructor bullied me and said that she would not let me participate in clinicals. I was told that I looked like a robot.
A new psychiatrist weaned me off of the antipsychotic and we tried to treat me with Valium. Later we tried another antipsychotic and Anxiolytic. For almost a year, I did not take any medications at all and lived a low stress life. I experienced severe depression, but thought that was a normal feeling. I did experience physical symptoms of depression, such as overall arthralgia, which should have been a sign of depression to the practitioner prescribing pain medication for someone twenty two years of age.
I went away to college four years after my first psychotic break and my mood speed up with all-nighters and when the man that I was in love with came out of the closet.
When I was admitted to the hospital in my college town, the psychiatrist wanted me to take the antipsychotic along with Lithium. I said NO. I was floridly manic, but I knew enough to refuse the antipsychotic since I had substantially bad experiences with it in the past. After a day or so, a different antipsychotic was attempted and I was willing to take it. I gained forty pounds in the semester that I was on that antipsychotic.
Lithium made me so thirsty that I had to be put on a fluid restriction and my fluids were counted and measured. My doctor wanted my Lithium level to consistently be a 0.9, and I was not meeting that goal because I was excessively thirsty and ingesting so much fluid (see my blog on Lithium and Dialysis, Part IV). Later I was diagnosed with Diabetes Insipitus, which was a direct cause of taking Lithium.
Lithium and the antipsychotic did not attack the mania well enough, so an anticonvulsant was introduced. After six months on the antipsychotic, I was weaned from it. I graduated from college with a Bachelor’s Degree while only taking Lithium and the anticonvulsant. I got monthly Lithium lab work done and other bloodwork done on a regular basis to evaluate how my body was handling the medications.
I have always been most successful with a blood level of 0.7 to 0.8 on Lithium. I have had my blood checked regularly, and rarely had high blood serum levels. One time I had a severely high reading and I had to take an infusion, in addition to drinking substantial amounts of fluid to cleanse my system.
My kidneys were always well flushed because of dry mouth and extreme thirst. Medication to treat mental health conditions were the primary cause of be becoming two hundred and twenty pounds overweight at one point in my life.
When I was at my highest Lithium dose, my hair was excessively curly. Now that I am on a very low dose because my kidneys are functioning at 8%, my hair is poker straight. Lithium gave me cystic acne in my early twenties and I had to see a dermatologist; something that I did not need in adolescence. Within four years of taking Lithium, my thyroid was damaged. I take a substantial dose of thyroid medication to date.
In 2008, I was told that my kidneys were “sluggish”, and I was asked if I wanted to quit taking Lithium. I had already failed at a drug trial that included several of the new generation atypical antipsychotics. I made the decision to remain on my treatment regimen, which included Lithium. The costs and benefits were discussed.
In 2016, my psychiatrist told me that we needed to talk again about my kidneys. By that time, I had Stage 3B Chronic Kidney Disease. I was point blank told that I would need dialysis at some point. I was completely devastated.
By 2019, before having a nephrectomy because of cancer in my left kidney, I had 28% kidney function. Some of that loss was due to the cancer, but most of it was from long term Lithium use.
Why did I continue to take Lithium all of these years if I had so many problems? I have been through practically all of the medications and Lithium is the only one that keeps me balanced. Remaining mentally stable and having a decent quality of life is very important to me. To date, Lithium is the only medication that keeps the psychotic side of things at bay.
In spite of being on dialysis, I am still able to work (a little), socialize, and volunteer. It is not my best life, but I feel much better since I started dialysis. It stinks that I had to sacrifice my kidneys to remain stable. However, I fought like hell to have the life that I have today, and quitting Lithium would probably have taken that life away, as one antipsychotic did nearly did thirty one years ago.
I enjoy Sunday night dinners with good friends, being active in my parish, spending time with my family, taking care of my pets, and writing for this blog. If I would have known how helpful Lithium would be for me at eighteen, I would have advocated that I take it back then. It has helped my brain so much, even though it has ravished and raped my body.