I’m down to 150mg Quetiapine! This is how it went…

Pills150mg Quetiapine (aka Seroquel) per night

Do you see that? One-hundred and fifty milligrams. It’s taken me three years to get here. In case you don’t remember, here’s a brief recap of my journey:

2011

I started at 400mg with a whole host of uncomfortable symptoms, like having my heart beat so loudly half an hour after taking the drug I thought I might have a heart attack (and no, it wasn’t a panic attack), and involuntary muscle spasms and twitches throughout my body that promoted concern of Tardive Dyskinesia. Needless to say, my psychiatrists were supportive of reducing my medication. I ended the year at 300mg.

2012

Twenty-twelve started with a bang. I reduced my medication to 275mg and came off my contraceptive pill – this was a big mistake. As soon as I did that my mood was all over the place. I started rapid cycling, got that under control by going back on the pill and upping back up to 300mg of Quetiapine, and then had a hypomanic episode that ended with a brief depression. Then I found out my partner had cheated on me and all hell broke loose. The rest of the year was basically jumping from one panic attack to another, intermingled with severe anxiety and Misery. Sigh. I ended year on 200mg Quetipine.

2013

The anxiety continued until about mid-year when I was too physically ill to sustain that level of intensity. I was worn out. Quit life and lay in bed for about six months, because I was really, really ill (physically). I was probably depressed but not in a “bipolar” kind of way. In a “my life is shit” kind of way. Later in the year I started on steroids and a miracle happened, I started to get better (oh so slowly). I even felt happiness with increasing frequency. Boy that felt weird.

2014 So Far…

Has been fabulous, in comparison to how bad things were during the previous two years. I’m still not right physically but I’m getting better all the time and I feel happy more often than I feel miserable. I’m on a health kick too. Eating a wholefood, vegetarian diet, learning how to do mindfulness, walking and doing yoga most days. Finally, recovery seems possible, even if it’s only a blip on the horizon. And, I’m now on 150mg. Getting here was easier than I thought. I’ve had no obvious side effects from the reduction and my mood and energy levels increase the further I go down. I’m so close to 100, so close to finally getting off this drug and seeing if I can stay off it. Woohoo!

If you could sum up the last three years in a few words, what would you say?

P.S I still only go down in 6.25mg increments once or twice a week. Plus, my writing will be remaining sporadic, I’m working on a new project 🙂

Medication Frustration

“I’m thinking of beginning the reduction again”.

“I think stay with 200mg for the time being, because you are so physically unwell, it just doesn’t seem a good time”. That’s my therapist’s very reasonable advice.

I swallow it and we move on. But I’m frwhite-pills-and-bottle-220ustrated. I don’t want to just stay here for the time being, because how long is that? The time being could be 3 months, or 6 months, or 2 years or more. I could be unwell for the rest of my life (not likely but not impossible). There might never be a good time to do this. By the time I feel well enough, I might be 30 years old and just starting my career. In three years, I could be dead. Again, not that likely, but definitely not impossible. But I suppose if I meet an untimely fate it won’t matter whether I was on Quetiapine or not. It won’t make the obituary anyway.

Bipolar Disorder is definitely a challenge, anyone who has it will agree. Some people say it’s the worst thing that happened to them, and I don’t doubt that for a second. But this autoimmune extravaganza is the worst thing that’s ever happened to me. In my journal I wrote:

Every day is a burden. A heavy weight on my shoulders, even if it’s just the fact I need to wash my hair. I’m so tired of being tired. I’m so sick of waking up in the morning and being exhausted and having to get up anyway and thinking “oh it’s yet another day of the same old shit”. I’m so tired of going to bed at night not wanting to go to sleep because then I will have to wake up to yet another day with little improvement and little to look forward to.

Every day is the same. I wake up with a brief moment of respite and I think “today will be better” and then I get up. I eat. I rest. I do my walk. I do my stretching. Then I rest some more. I barely do anything in between. I might read, or watch TV. Maybe a few hours for my job. I’ve barely been writing because the fatigue drains me of creativity. I want to write but I don’t do it. Because I feel so tired. Because I have no motivation. Because I can’t think of anything to say or do and when I do it never seems to come out right. And now the pain, the pain is back and it reaches into every corner of my body and it aches, all over, everywhere. Until just being is uncomfortable. Even when I’m more accepting of this never-ending situation, it’s still like ground hog day. The same routine beckons me. The same uncomfortable body and the same four walls surround me.

I don’t feel like myself. I feel nothing like myself physically. Mentally, I feel like my depressed self, my angry self, my bitter and twisted self. My mind doesn’t feel normal. It doesn’t feel like my own. It just feels like it isn’t even there. My body feels like a prison. Like a dark, sealed coffin that I’m trying to get out of, and I’m banging on the lid and trying to break out or get someone to hear me. But no one does. There is no one to help, no one to get me out of here. No one is coming. And I’m so weak I can’t get out of it, I can’t lift the lid and live my life. There is nothing anyone seems to be able to do. And it’s frustrating because all I want is something to make me feel better, to get me out of here so I can get away from this body and the pain and the weakness and the overwhelming tiredness that dogs me every single day.  – 26 July 2013

It sounds like depression, but it isn’t. This is the reality of debilitating fatigue. This is the reality of Lupus. My mood changes as my physical health does. On days like today, my health improves a bit and I feel happier. I can talk, I can smile, I can laugh. I find myself questioning whether it could be hypomania because I am so unaccustomed to feeling anything but fatigued.

I’m so frustrated because I want to find a drug for this disease that will bring me back to life. A drug that will make me well, so I can go back to being a relatively normal person who works from 8.30am-5pm and complains when the printer at work runs out of ink. I want to be able to walk for more than 15 minutes. I want to do a full length yoga class. I want to run. Hell, I want to stay out all night with my friends and get drunk and be normal. Totally, completely normal.

I’m frustrated because I want off this Quetiapine. Because I worry that it triggered off this autoimmune nightmare. Because I want to have a baby one day, no matter how impossible that seems right now, and I can’t be on Quetiapine when I do it. Because I want to see if I can cope without psychiatric medication. I want to know if it’s possible. I want to know who I am, what I really look and feel like, without drugs to cloud that vision.

But it’s on hold. On hold, on hold, on hold. On hold in 2012 because I stupidly stopped my contraceptive pill and became hypomanic and then because I was so physically unwell. And then because I found out the Olympian cheated on me and I was beside myself with grief. Now because I’m more physically unwell than I ever have been in my life and being this unwell is a risk factor for depression. Not for mania though. I couldn’t possibly become manic. I’m far too exhausted for that.

Reducing Quetiapine: Slow and Steady Wins the Race

I started The Bipolar Project with the intention of tracking my reduction of Quetiapine Fumarate (aka Seroquel). Since reducing the drug in 2011 there have been various issues that have prevented me from reducing at a steady rate throughout the past two years. In fact, in 2012 I didn’t reduce it at all.  Some of these issues have been Bipolar related but most have been completely unrelated circumstances that impacted on my emotional health, left me stressed out and miserable and my life just a little too chaotic to embark on a medication free life.

Slow and steady

If you’ve been with me from the start, I was initially on 400mg. I managed to reduce that by 125mg throughout 2011. When I stopped my contraceptive pill and my mood went haywire, I upped it back to 300mg and left it there for over a year. I started reducing again about four months ago and am now down to 206.25mg nightly. This quick reduction had minimal effect on my mood (apart from taking me a bit longer to fall asleep and feeling a little more tired the next day).  When I reduced it a couple of nights ago I noticed I was a little more irritable for two days afterward.

When I first started I had a number of rules: no alcohol, regular sleep pattern, exercise vigorously and regularly, only reduce by 6.25mg at a time. At the time, exercise was a major mood stabiliser for me and I noticed resistance exercise, like lifting weights, was better for my mood than just cardio.

Now, I’m too unwell to do vigorous exercise and resistance exercises are pretty much out of the question. Surprisingly, that doesn’t seem to have negatively impacted on my mood during the reduction. But I’m still exercising (I walk and do yoga pretty much every day – less than 30 minutes all up), but not the way I used to (spin classes, weights, long horse riding sessions, full length yoga classes).

There haven’t been as many positive effects this time around but these are probably being masked by my poor physical health. I’m so fatigued all the time that if being on less Quetiapine is making me less tired and improving my concentration, then I just don’t notice it.

I’ve slowed down the reduction again because I noticed I was getting pretty emotional, probably because I was extremely anxious and moderately depressed. Again, these seem like pretty normal responses given the events of the past year but ultimately, if my mood is unstable, it doesn’t matter what’s causing it – the reduction must be slowed down. Within the next week or so I plan to bring it down to 200mg and leave it there for a few weeks.

If you’re on psychiatric medications and have tried reducing or stopping your drug, what have you experienced?