Continued Trials & Errors and my time on lithium

If you revisit my last post, we were discussing the various medications that I had been prescribed, up to my taking the CAMH IMPACT study DNA test.

It is at this time that I was taken off most of the drugs that had been prescribed by the first doctor to diagnose me as bipolar and start a process that would span years trying to find another cocktail that would work.

I was still very early on in my journey at this point and I was unaware of what the “success” of one drug or another really looked like.

At the time, my new doctor in Toronto asked if there were still things that were bothering and, truthfully, there were, so I decided to try different solutions. In hindsight, I probably should have stayed on what I had been initially prescribed, as I would later come to realize that I had been experiencing about as much success as you will get on any psychiatric drug already.

I had no idea what I was getting myself into.

Again, as I mentioned in my last entry, the years that followed saw me taking many different medications at various dosages and to remember them here, in order, is an impossibility. So, in an effort to give you accurate information, I have put in a request to get my medical records going back about 7yrs. If this turns out to be an impossibility, I still have pretty good knowledge of what I’ve taken and what I haven’t. I may just be a little unclear of any side effects that affected me, personally.

Honestly, this is of less importance because any possible side effects will vary widely from person to person.

That brings us to the main topic of this post, which is one drug that I absolutely have no trouble remembering my experiences with… Lithium.

Before I even get into this, I want to make myself exceptionally clear. My experience is absolutely not typical. Lithium has been used in medical practice since the 19th century, so it is not my intention here to discourage anyone from using it.

Lithium was introduced to me as the “gold standard” for treating bipolar disorder. As I said, it has been used for centuries very effectively, so I was very eager to get my first dose and experience the life change that I had been waiting for.

New research suggests that lithium may also be effective in treating substance abuse in people with bipolar disorder, so I suspect that may also have had something to do with why I had been prescribed the drug. I wasn’t what could medically be termed a “severe” alcoholic, but I drank everyday, usually to drunkenness.. often excessively so. I had been drinking like this since about 13 or 14yrs of age, so my habits were ingrained.

Just so everybody is clear, I have been 100% sober from everything, excepting my psychiatric medications for 5yrs now.

At the time that I was prescribed lithium, I had been running my own brick-and-mortar store in Roncesvalles Village in Toronto for nearly a year. I had been awarded the largest loan to date from an organization in Toronto, Rise Asset Development, who serves persons who self-identify as having issues with addiction or mental health. I was doing quite well for myself.

I remember my boyfriend bringing home my first bottle of the lithium pills. They are ginormous white tablets that you’d think you’d need some sort of speculum to get down your throat. I took my first dosage and, unlike most other psychiatric drugs, I could feel the pill dissolving in my gut and it’s medicines spread through my system like poison. I knew from my very first pill that there was something desperately wrong with my being on this drug.

The next day at work, the other business owner who I occupied the shop with immediately noticed a change in my speech patterns and my ability to pay attention. For lack of a better word, I was high out of my gourde and was unable to finish the day.

Confusion is considered to be a very common side effect on lithium (>10%) so I suppose my behaviours on that first day and the subsequent days at work should’ve been no surprise.

Other common side effects include:

  • Constipation (usually transient, but can persist in some)
  • Decreased memory
  • Diarrhea (usually transient, but can persist in some)
  • Dry mouth
  • EKG changes — usually benign changes in T waves.
  • Hand tremor (usually transient, but can persist in some)
  • Headache
  • Hyperreflexia — overresponsive reflexes.
  • Leukocytosis — elevated white blood cell count
  • Muscle weakness (usually transient, but can persist in some)
  • Myoclonus — muscle twitching.
  • Nausea (usually transient, but can persist in some)
  • Polydypsia — increased thirst.
  • Polyuria — increased urination.
  • Renal (kidney) toxicity which may lead to chronic kidney failure
  • Vomiting (usually transient, but can persist in some)
  • Vertigo
  • Weight gain

Behaviours that followed became increasingly erratic. For instance, I suddenly decided that I no longer wanted to be sharing that store on Roncesvalles that I had worked so hard for. Instead, I would move it into my home and put it online.

It made sense in my brain because I did have former online retail experience and I would be eliminate a significant monthly overhead expense of maintaining the store. It proved difficult for anyone to find fault in my reasoning and so I was free to dismantle my store and bring everything home exactly 1 month before Christmas, which any idiot can tell you is an enormous missed opportunity.

Once I had my workspace set up at home, with my packing table, clothing racks, sewing machines, steaming station, etc, I took to bed and that is where I would remain for the next approximately 8 months that I spent on lithium.

I had regular appointments with my psychiatrist and my GP where I would insist that the lithium was making me sick.. perhaps even killing me. They would rattle off statistics and reference the drug’s long history of success in the treatment of bipolar.

I was seeing my doctor about once every two weeks during this period and would be sent for blood test after every appointment. Frequent blood tests while on lithium, like many psychiatric drugs, is necessary to assure that you are within the therapeutic range. This is especially important while on lithium because if you aren’t taking enough, it is essentially useless, and if you are taking too much, you run the risk of experiencing lithium toxicity.

I became convinced that I was experiencing the latter, but every blood test that I took showed that not to be the case. I began doing as much research as I could get my hands on to prove that it was in fact the lithium that was making me ill and gradually ruining my life.

It got to the point that I was hardly able to speak because I would forget what I was talking about before I would get to the end of my sentence. I couldn’t go up or down long flights of stairs because I had developed an extreme fear of falling. This fear translating to ice in the wintertime and I became housebound, with the exceptions of doctors appointments, which I now dreaded. I totally lost control of my self care and would go weeks without brushing my teeth and months without taking a shower. The thought of having to stand in the shower long enough to become clean would make me cry.

There was a point where I was unable to sleep for 6 days and so in a desperate attempt to just finally get some rest, I very stupidly took a handful of Benzodiazepines that I had on hand (maybe about 15 – 20 pills). To the best of my knowledge, I was still unable to experience any sort of complete sleep.

I became extremely frightened of being alone and when my boyfriend had to go out of town overnight, I went to my parents house. This is probably when my worse symptoms emerged.

I experienced a cold pain in my head that I was absolutely signified my having a stroke. My Dad wanted to bring me to the emergency room, but I refused because I thought that I might be committed. Should anyone else find themselves in a similar situation, you absolutely must call 911 or find some other means of getting to the hospital. It was a mistake that I did not go.

Nothing particularly bad happened, but that isn’t to say that nothing bad could have happened and I absolutely should have been seen by a doctor. Perhaps my experience with lithium would have been over sooner, had I taken this step.

I was communicating everything that was going on to my parents and they were getting mad at my doctors. This bothered me because I have an exceptionally good relationship with my GP, which I still enjoy to this day, and because they were acting on science. My blood work said that it wasn’t the lithium and so they had to use that information to somehow figure out what else the problem might be.

I had always reasoned the timing of when my life changed and when these horrible symptoms became prevalent and how they exactly coincided with my beginning the lithium treatment. My Dad agreed with me and so one day, he drove an hour and 20 mins to attend an appointment my psychiatrist and I.

I was glad my Dad was there. Where I had begged and pleaded in the past to be listened to, my Dad got angry and demanded to know why this doctor couldn’t see the correlation. It got to the point where I could see that things weren’t going anywhere and I actually got up and left the appointment. I sat in the waiting room for them to be finished. I somehow still left that day with a prescription for more lithium.

Throughout this period, I belonged to a bipolar chat app, which has unfortunately disbanded. I had become friends with a fellow sufferer and nurse from Australia who enlightened me to the fact that for some people the toxicity threshold of lithium is much smaller. If this were true, it could finally explain how I was feeling.

At my next bi-weekly appointment with my GP, I mentioned this new information. He was not aware of this being a possibility.

I don’t know what it was about that moment, but it was the first tiny bit of validation that I had gotten since the whole lithium debacle began and I thought that I would take it a step further.
  1. I would not be seeing the psychiatrist that had prescribed me the lithium ever again. I had spent enough of my time and energy begging that man to hear me and I was done.
  2. I would be discontinuing the lithium. Either he help me to safely withdrawal and offer another medication to take its place, or I would do it on my own and end up unmedicated.
I had made my decision and that was the end of it.

My doctor slapped his hands on his knees, then turned to his computer and eagerly said “let’s find something else to try you on”. It was the first time that I had truly advocated for myself and it had worked. It is very important that you are aware that I am extremely lucky with my doctor and that not all doctors will be as receptive.

If you find that this is the case with you, you may want to look into finding someone who can advocate on your behalf. By this, I mean someone who you will work out your treatment goals with who can attend your appointments and be the strong voice in the room.

Not everyone is cut out for that kind of conversation and the potential conflict that comes along with it. I happen to be someone who is very capable of expressing my wants and needs and I still have a social worker or my boyfriend attend appointments with me. This can also be helpful if you need that added set of ears to hear and remember everything that went on during the course of your appointment. It has also been recommended to me that I should use a voice recorder app on my phone or a dictaphone to record appointments, so you are especially sure that you aren’t forgetting any details.

I have been off of lithium for about 3 yrs now. I am not exaggerating when I say that I started walking normally up and down the stairs again only last year. My memory has yet to fully recover, but has improved significantly. I still carry a good deal of the weight that I put on while taking the med, but I am on other meds that may be contributing to that, so it’s hard to say if lithium is the cause.

I would say that now there are many years in between me and my lithium experience, I would almost say that it was worth it because of the lessons it taught me about how much control I actually have over my own health care and how to be a self-advocate. Since that time, I learn as much as I can about the medications that are offered to me and if I don’t feel that I am prepared to deal with any potential side effects, I feel free to say no.

So maybe, in the end, it was worth it… almost, but not quite.

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