Ever wanted to run off to a cave and hide for a couple of weeks?
Today it was agreed that after everything I described in my last post, my symptoms are “clearly iatrogenic” (medically induced) and “clearly intolerable” and that the aripiprozole should…. stop.
I actually cried at this news, I was so relieved.
I was waiting though for the HTT consultant to suggest an alternative antipsychotic to replace to with but – he didn’t. He didn’t recommend any other drug. I was amazed. I had been expecting to be asked to discuss lurisadone, to have to fend off the prolactin enhancers and the weight increasing antipsychotics, because I was so in the mindset that I would just have to take something else. I wasn’t prepared for him to be content to strip back one layer and just see what happens.
I told the doctors, plural because the two lovely juniors were also with us, that sometimes I wonder about the point of meds at all – for me, that is, I would never comment on others’ experiences.
I don’t believe any of the drugs I tried when I was younger, other than short term crisis meds, really helped me. None “managed” my bipolar. From my teens until my late 20s my episodes came and went like tides. I’d have a year “off”, maybe 18 months if really lucky, before the tide swept in and I’d have a period of high and a period of low, the whole thing lasting about six months and then it would just…go.
During the exquisitely painful episode after my daughter’s birth, which went on forever in my mind but on paper probably lasted the expected six months, I never really responded to the sertraline or the paroxitine or the trazadone or the secondary care referral. I think I just came out of it, because my bipolar moves on its own mysterious ways, and it was time.
In the next, extremely serious, episode venlafaxine made me mood switch from depression to the closest I have ever been to true maina with hilarious, oops I mean disastrous consequences. I came out of it after an overdose that resulted from the crash. You could say it was going back onto the venlefaxine that controlled things afterwards, but it wasn’t. If it had “managed” my BP in any way I wouldn’t have spent three days hooked up to an infusion pump trying to prevent my liver being permanently damaged.
I went into remission anyway, and I stayed there for years. I don’t know why. I do understand the work stresses and strains that eventually destabilised me in 2011, but they were nothing compared to the strains of divorce, poverty and debt I survived while remaining well years earlier. Mysterious ways indeed.
l confessed today that I feel I keep crossing drugs off a list – not just all antidepressants, as I am now advised to steer clear of them due to the risk of mania – but now sodium valproate, quetiapine, possibly lamotrigine, definitely lithium, although most doctors seem very keen for me to stay on it… a list of drugs that will/can not give me symptom control. That I increasingly feel that there is no drug that can do that for me. That my bipolar will only do its own thing.
There have been so many times when I have felt that I would be so much worse off without my meds, maybe even dead, and I have bristled at the #pillshaming by those who are anti-medication. Yet, at the same time, I have sometimes fantasised that one day I might run off to a cave (a nice cave, obviously, not all dank and horrid) and just… not take any meds with me. I know I might be ill for a while. But it’s a fantasy of being able to strip back to being me, and unmedicated me, something I haven’t seen since 1999. I am curious to find out what it is left. To see my brain, naked. Perhaps in all its mess and distress and periodic episodes.
But I’m in a mess and in distress now with one long continuous desperate five year episode. Surely I couldn’t be much more ill than I have been on the meds. My life is going the wrong way, primary care to secondary care, to crisis care, to hospital, no matter how many drugs I take.
Interestingly, Dr HTT was not entirely horrified by this idea. He remembered that I don’t feel I find lithium effective in any way, good or bad, and suggested that eventually maybe I could strip back to just one drug for the BP (in a sense the pregablin is different because it specifically targets anxiety, not mood stability, so I don’t know if that counts).
An interesting thought. It’s not one I’m sure my own consultant will warm to, but maybe there’s eventually a way through to at least reducing the burden on my poor liver. I still entuertain thoughts of going further than that, of stripping back further to the naked brain.
Yet I suspect as soon as the first suicidal crisis hits I’d probably come out of that cave, on my knees in the sand, begging for the drugs.