Taking Medication, Take Two

Below are short notes that I kept for two months while on medication. There is a jump in the date from the previous page – I started to take medication last November but stopped a few weeks afterwards. And then started and stopped a few times between then and now. Apparently over fifty percent of the people stop taking their medication. So, if nothing else, I’m with the crowd.

We tend to think of the medication as being a solution, like aspirin for headaches, but it isn’t so simple. Taking medication does not automatically mean that we will get better. Or even that we will feel better at all. The interaction between the drugs and our moods can be a lot more complicated than that, as I found out. The Tegretol did affect my standard two week cycle of mood swings (one week manic, one week depressed, no time normal), but, well, read for yourself…

10 Apr 98 – Diary

Depressed and unstable for the last three weeks. Restarted taking medication so that I can welcome my cousin when she returns permanently from Canada on Friday night. Started taking 600 mg Tegretol (carbamazepine) per day to start up.

11 – 13 Apr 98 – Diary

Hyperstable – utterly calm and collected and efficient. In control without in any way feeling drugged. This effect of Tegretol is better than what I understand “normal” to be. It’s great! I want to stay this way! The world is a wonderful place.

14 Apr 98 – Diary

Still hyperstable though effect fading into what I think normal is. Still stable, but less stable than the last few days.

15 – 19 Apr 98 – Diary

Nine days of stability so far. Not bad – without the Tegretol I would have started to cycle into depression already. I’m normal, calm, efficient. It’s all right, but I’d rather be hyperstable.

20 Apr 98 – Diary

I can feel myself becoming resistant to Tegretol. Signs of mania are starting to appear at the edges. Up dosage to 700 mg / day.

21 – 29 Apr 98 – Diary

Normal and calm.

30 Apr 98 – Diary

Signs of drifting moods starting to appear again. Mild. Can be contained by behaviour modification – monitoring my behaviour and adjusting how I act so that I appear “normal.”

1 May 98 – Diary

As yesterday. The medication has interrupted my regular cycle of mood swings so I am unable to tell if I am in the up or down part of my cycle. Since I use different methods to adjust my behaviour depending on what part of my cycle I am in, so not knowing where I am is making it difficult for me to properly compensate for the drifting moods.

2 May 98 – Diary

Clear signs of drifting appear. Symptoms are (1) feeling as if my heart rate is speeding up like when I am excited or anxious and (2) fine motor control for my muscles, particularly in my fingers, becomes erratic. Must concentrate to do things which can normally be done without thinking, such as pouring tea or writing.

Medication is increased to 800 mg / day as follows:

200mg / 300mg / 300mg at 6am / 2pm / 9pm

The staggered times are to moderate the side effects from taking a large dose.

3 May 98 – Diary

Like yesterday only a tad bit more so. Still able to compensate by behaviour modification. Higher medication has some effect, but not clearly so.

4 May 98 – Diary

Symptoms are full blown now into hypomania (relatively mild mania). Dreams have gotten extremely vivid, have been so for the last two days. Major sugar craving. Ate half a pack of cookies. Behaviour modification and compensating systems beginning to fail.

5 May 98 – Diary

Unable to concentrate at work, unable to hold thought patterns together enough to do anything but simple tasks. Not able to make it to the gym because I do not feel like going.

Medication times becomes staggered 200/300/100/200mg at 6am/1pm/6pm/9pm in an effort to remain stable enough.

I polish off three quarters of a pack of mint milano cookies in three quarters of an hour. (If a hen and a half…)

6 May 98 – Diary

Like yesterday. By focusing finely, am able to assemble and give a presentation for the Rotary Club. Destabilise almost completely while driving home. Am very hyperactive / tense / scared. Call up a friend on my cell phone. Drive directly to their house where they feed me and talk me into being calm.

7 May 98 – Diary

At office I am so unable to do work that I go home and sleep.

8 May 98 – Diary

Like yesterday. I get up, exercise. I hold as tightly to my basic daily routines (daily subsystems) as I can, and succeed, but any task that is not part of my basic routine fails. I go home early and sleep. No dreams.

9 May 98 – Diary

Get up feeling fine. My dad remarks on how I can be so normal if I was so bad the day before. Reduce medication to 700mg.

10 May 98 – Diary

Mother’s Day. Stable all day, feel onset of “excitability” after theatre show in the evening.

11 May 98 – Diary

Reduce medication to 600 mg. Am able to install computers at work only by concentrating.

Have the oddest thoughts on how to solve problems at work, am angry with C., get vexed with my parents and with the Minister of Planning. But all in my mind. This is not how I felt in the last few weeks.

It is 12:30 in the night and I am still awake writing e-mail. ALL routines / subsystems are failing. My ability to deal with the written word is failing. Two days of stability in the last eleven. Is that fair?

12 May 98 – Diary

Got up late. Had a wonderful day. Office computer network failed, but by keeping focused I was able to complete all the work that needed to be done, coolly and efficiently.

Came home. Was having a quiet night, but a friend wanted to see the Ms. Universe show on television. Manic state triggered. Had friends over, became loud, excited. Went to bed at two o’clock. All the mania cues have kicked in.

13 May 98 – Diary

Morning subsystems (routines) failed completely. Didn’t shave, wore jeans to work. Got to work at 9:00 am, work starts at 7:30 am. Was in a low level mania. Difficult to concentrate, but was able to get things done if I wrote them down.

Started focusing on little irrelevant things for no reason. Day is not very productive. Gave up at 2:00 pm. Went home, went to sleep. Didn’t get up until C. came over.

14 May 98 – Diary

Pace is better today, mania seems to have calmed down. Morning subsystem worked and day was reasonably quiet. Everything was calm. Either I am getting over the mania or my behaviour subsystems are able to reasonably counter the mania. I feel more in control / calmer that I have been. Had a beer with dinner to keep calm.

So far: Hyperstable – 4 days, Normal – 16 days, Hypomania – 9 days, Normal – 2 days, Manic – 4 days.

15 May 98 – Diary

Got up at 7:00 am slightly manic. Have to get telephone reconnected today. Service was disconnected because I forgot to pay the bill. Ah well. Stuff like that happens all the time when I’m depressed.

The mania is mild enough that I can do finish the “To Do” tasks in my diary, but not much else. At about 1:00 pm when the medication started to wear off, I started making mistakes. Someone else picked up four mistakes in work I had completed and rechecked. Scared me a bit since I am usually very good at catching my errors. Now I wonder what else I have done incorrectly.

However, once my medication dose kicked in, I was able to focus enough to upgrade the company’s software billing system. I can ride the mania if I make the effort to stay focused.

Later in the afternoon, took a glass of wine (a big one) to settle down. The wine works in calming the mania but being slightly drunk has the problem of being slightly drunk – I lose the fine focus. Still, calmer is better.

Mom doesn’t understand that the good of being “high” is not good, that it scares me. Wish C. would come by. Was able to come away from the computer with only minimal effort. Is this the mania decreasing, my behavioural systems working, the medication, or the wine? I don’t know.

8:00 pm – Am having the oddest sensation of having no impulses or cravings to do things. It feels really odd. I suppose I’ve come down to normality. Or perhaps my life is picking up another version of strange. But I like this. It feels… clean, in a way mania and depression do not.

C. woke me at 2:45 am to get a lift home. Couldn’t go back to sleep. Since I sleep well generally, this could be part of the mania. Or it could be my general annoyance at C.. Took a 100 mg Tegretol just in case. Decide to move forward the start of the day from 6:00 am to 3:00 am. Although this is better than being a zombie in my house in the wee hours of the morning, I suspect it is going to have consequences both tomorrow and the day after.

16 May 98 – Diary

Staying up was a bad idea, though it may have been my only choice. Took medication at 6:00 am but at seven o’clock onset symptoms started appearing – coordination problems in writing, my “excited” feeling, my anxiety about what to do next. Ended up at my favourite coffeehouse at 7:30 am feeling panicky. Called up my sister-in-law to calm me down. Talking with her worked.

Seven in the evening. I did not get any sleep today – am now sleep deprived. Will muddle through tonight, but tomorrow is going to be a mess. I am considering passing up an invitation to lunch tomorrow in return for a sleep filled day. Today was certainly manic, but it was triggered by lack of sleep – out of the usual cycle. Nevertheless.

17 May 98 – Diary

Went to bed at 11:15 last night. Wake up early this morning, which was good, my normal cycle kicking into gear. Had parents over for breakfast, then fed my neighbour breakfast. Went down to my cousin’s farm to spend the rest of the day.

Started feeling sleepy. I think this is an echo of the lack of sleep two nights ago. Am worried about sleep deprivation very much – it seems to trigger cycles. But going to sleep early wreaks havoc with my night life.

Sleep for two hours and arrive quite late for my lunch invitation. Was lucid and normal for a few hours. Then I realise I has started to butt in impolitely on conversations around me. Look at my watch and it is nearly two hours past the time for my medication. A warning, the mood swings don’t go away, the medication just keeps it in abeyance.

When I get back home I start doing little things wrong. Is this mania? Is this the start of my depressive cycle? Is it tiredness? I can’t tell. Finally am going to bed. Dishes are still in sink, a big no-no. We’ll see what happens tomorrow morning.

18 May 98 – Diary

Today wasn’t bad. But by 6:00 pm was stressed out. Finally gave in and took 100 mg Tegretol. Got calm and will remain so for the rest of the night. Question – am I manic, or stressed out normal, or normal with a stress trigger? How exactly do I tell if I am getting better?

19 May 98 – Diary

Had a weird day. Had a jumpy feeling all day that I associate with mild mania. My secretary noticed the external symptoms. Wanted to go home and sleep but couldn’t due to requirements at work. An acceptable day, but not the type I want to live.

Had friends over. Was witty etc., not exactly calm. Feels like my old pre-medication behaviour. Even though I feel in good spirits, I don’t really like how I am feeling. I hope that it stops soon. I’m not sure how long again I can be in control.

20 May 98 – Diary note in very scrappy handwriting

Since three this afternoon I’ve been triggering into a full depressive mode. The Tegretol helps, but not completely and only for about four hours. I’m going straight from mild mania to fairly bad depression – no stable position between. This is being written with all the discipline I have. Details are dropping out. Help! All basic support systems are failing and I am not having enough sleep. I’m drunk too.

21 May 98 – Diary

Today was worse than yesterday in terms of control. Basic subsystems failed mostly, but was able to get out of the house. Before I left the house, I showed signs of depression, but for the rest of the day I was manic. Functional, but in less control than before.

I think that 600 mg Tegretol alone is too low. A lot of the day spent dealing with mania symptoms – loss of motor control, inability to choose what to do. Bloody annoying. Saw my psych today. Am adding Lithium as of tomorrow (400 mg Tegretol, 600 mg Lithium). I expect myself to destabilise over the next three weeks before the Lithium kicks in.

22 May 98 – Diary

Today was good. I would call it normal, but I have a feeling that I was in shock. My psych’s comment that what I call hyperstable is probably normal has had me in shock. I cannot believe that I could achieve that.

I also cannot believe that what I have lived with, that mad mad world, is so far from being normal. The wonder of what normal could be, the calmness, just stuns me.

The fear that I may never be able to reach normality has me terrified. Calmness is being held out and I am so afraid I may stumble before I can reach it, that I may never reach it.

I can now look back at how I have lived and feel some hate – I despise that I have had to live with my mood swing for all those years. I hate feeling like that. If the medication fails, if I have to return to living with wild mood swings – well, read Flowers for Algernon by Daniel Keyes.

I am starting to get the twitchiness, and loss of concentration that I associate with my normal. Took 400 mg Tegretol, 300 mg Lithium this morning. I’m really going to catch hell over the next two weeks as the Tegretol level in my body subsides.

27 May 98 – Diary

Saturday (23rd) to today (Wed 27th) have been difficult to deal with. I progressively destabilised.

On Saturday I got up, got started well and then was unable to follow through. Instead of going for groceries, I sat at home and read. Tried a few times to jump start again, but was derailed each time by reading, by the computer, etc. No anxiety this time, because I know when this happens, I should just go with the flow.

Started looking at the clock. I had to pick up a few people and began to time to the absolute instant how long I could stay in the house before leaving to pick them up. All signs of depression, but when I did leave, drove very fast, playing music really really loudly. Very hypomanic. Was considered one of the fun people in the group, singing and making jokes. Went to bed late, at 1:00 pm. Missed taking medication at 6:00 pm because I was feeling too good. Eventually took it at 11:00 pm.

On Sunday I got up at 9:00 am, really disoriented. Had that feeling of mania hanging over me. Was able to go to the grocery in preparation for the Scrabble Club meeting by me, and by focusing on that I did well. Taking the Tegretol allowed me 3-4 hours of peace as well. By mid-afternoon, things started going screwy. I was unable to remember what I wanted to do next, and my speech was becoming difficult as I couldn’t remember what to say next. C. was there and we were able to handle things for Scrabble. That is, C. was able to have things ready, I was mostly reading. I was loud and obnoxious at Scrabble. And I couldn’t figure out how to make words. And was insensitive to others. By the time people left, I was terrified about what was happening.

This was where I had been before recognising I was bipolar. Having spent about six weeks more of less stable, I didn’t want to be there any more.

Monday I realised that I couldn’t make it out to work. Called in sick. Spent the entire day reading or on the computer. The outside world didn’t feel real. Depression symptoms again; why am I swinging backward and forward in moods. This never used to happen – is the medication causing it? Missed gong by my cousin even though I had promised her to pass by and missed dinner by an aunt. Slept a lot…was in bed by 7:00 pm.

On Tuesday C. called me for exercise at 4:30 am. Made it, did the exercise, returned home feeling well. Was able to make it to my 9:00 am meeting and to work after. Was still feeling a bit jumpy so I went home at 1:00 pm. Somewhere at 3:00 pm, I realised that I was calm. Can’t figure out why. Exercise? Lithium kicking in? Mood Cycle at normal point? I don’t know.

On Wednesday I got up early without difficulty – a sign I associate with stability. The remainder of the day was fine. Didn’t eat until 3:00 pm but felt great all day.

28 May 98 – Diary

Today was a great day. Got up without a fuss, went gym and worked out (drank 2 litres of water). Morning schedule operating smoothly. Nothing was fussed, though there were periods that I would usually have become confused and lost my ability to concentrate.

Productive, little or no wasted time. Unusual when doing computer work. Stayed until 5:00 pm to finish work. Again, I was surprised how easy it was to keep doing real work after everyone left instead of puttering around the way I usually would. Came home, had dinner peaceably.

Schedules are still out of wonk, but that’s ok. Am actually looking forward to a time when I can live “symptom free.” However there are one or two signs I didn’t like. Either they never went away or they are coming back – I still can’t remember words / finish sentences, and I am still easily distracted by wandering thoughts.

17 June 98 – Diary

Mood swings prevent me from writing my diary until now. Ah well, missed days are missed days. And it is unreasonable to expect a rapid cycler to have a consistent notebook. Am on the way out (almost out) of a depressive cycle that started on the 10/11 June.

I’ll be phasing out the Tegretol over the next ten days to see if the Lithium alone works. I seem to have become resistant to the Tegretol and in any case blood serum measurement for Lithium puts me in the therapeutic range. I am better than before, but the mood cycles continue. If the Lithium doesn’t work, I’ll go to Valproic Acid (Epilim, Depakote).

Looking forward, I wonder what will happen next. The mania / depression moods are no longer as bad as they once were, but their onset is so rapid that they are still disruptive. And I still lose days to depression when I stay home and do nothing much. Practically it means I can’t be reliable. How can I take on a long term job or study if I can’t predict my state of mind / being over the next two weeks. This really throws into question the type of work I can handle. It upsets me, because my intelligence hasn’t changed.

I fear I may be stuck doing work that is below my intelligence capability, but rather is based on my ability to function (or not function). I haven’t figured out how to deal with this and I don’t think I have come to terms with it yet.

Shortly after the diary entry above I stopped taking medications for about six months. I actually functioned quite well – using behaviour modification alone I was able to match or do better than medications I had been on. But it was hard work, and in spite of all my control I destabilised over Christmas 1998, as I had done for every Christmas for at least five years. I restarted the medications in January 1999. I have one piece of writing from this period, from an e-mail that I wrote to the FyrenIyce mailing list on 3 Nov 98.

To bp or not to bp, that is the Question

I have a little secret I’ll share with you. I’m not taking my medicine. I’ve been this way since June, and while my moods have still been cycling, I’ve been watching what I do and trying to compensate. If things get really bad, I take the Tegretol (carbamazepine), sorta like aspirin. It doesn’t work perfectly, but I’m doing pretty all right.

Hell…I’m doing darned good.

I’m not sure this is a responsible thing to do, and it probably would horrify my psych. I also worry about if I hit a really bad depression what will happen. But at the end of the day I will live my life the way I want to, not how some doctor tells me.

Picture Opus sticking his tongue at a psych and going – “Phftt”