This post was originally a Facebook post. Written and posted without edit on July 14th. I haven’t edited it for the blog. In the two weeks since there have been several developments to what I wrote, including:
A. I am seeing the GP tomorrow and we will talk about the next drug taper and another step to getting me off Trazodone.
B. I now have very good reasons to justify to community mental health when I see them next month that I should not be prescribed antipsychotic drugs even though I see and hear things. My reasons are drawn from the best international treatment guidelines for the kind of condition I will be assessed for by a specialist service.
C. I now have an appointment for that assessment. Of course I’m already worried about it because I’ve been turned down for treatment by so many people so many times. If I pass their tests I get to join another waiting list. But at least I’ll be on it.
These are all very good developments. They’re not the only ones. Some of the days have been very hard due to mental health issues but we’re moving in the right general direction.
The Facebook post:
Long. Honest. But hopeful and surprisingly positive:
I am realising that quite a lot of the bad head of the last week is probably due to lowering my dose of Trazodone. I have bad memories of experimenting earlier in the year with a bigger taper and the complete total hell that gave me. Within two days I had fallen to pieces and all I wanted to do was kill myself. Withdrawal was pretty shit! I started on the drug again because I’m in no real position support-wise to go through that.
I in no way believe that the drug is tackling some illness I have. I don’t believe my problems stem from a chemical imbalance in serotonin (which Trazodone affects – it’s an SARI) causing some kind of unhappiness or anxiety or dopamine causing random, meaningless voices and images. It all has meaning. That awful withdrawal isn’t a relapse. It’s the effect of addiction.
I initially took Trazodone because of anxiety brought on while processing the meaning and ramifications of working out that I’m autistic after all. Done that. The reason for the drug is long since not an issue. It was never taken to treat an illness but to make a symptom – a natural human reaction to a stressor – easier to cope with.
Unfortunately the drug is still doing something and my brain chemistry has become dependent on the thing. Basically I’m addicted even while being told by some sources that it’s impossible to be addicted – contrary to the experiences of a growing number of people talking about it.
I took Trazodone for the same reason that some people might take an illegal drug. Anxiety relief. I wasn’t ill. While taking it – and Pregabalin – I’ve had the worst period of mental health I’ve ever had. So they’ve worked well! I’m coming off them because there’s no reason to be on them and I don’t like being dependent on a medicine for no illness.
Of course, I do have issues. Recently I’ve worked out that I’m more fucked up than I thought and learned some things that are being difficult to process and understand. I still refuse to pathologise myself though. If there’s any innate reason for my problems then it’s not been discovered – but if there is I do wish it could be. If only they could just scan my head to see if there’s any biological cause beyond radical trauma survival skills. Or wander through my DNA to see if there’s anything exciting there I should be aware of. But beyond that, I believe I’m just coping with stuff not a medical marvel. And I believe that discovering and dealing with what I’ve been learning, while in the short-term it’s being very tough, will in the long-term be by far the best thing.
Isn’t it weird how if someone stops taking a recreational drug (including many that may be prescribed for mental issues) everyone accepts what happens is withdrawal but when the same drug has been prescribed by a psychiatrist many people believe (because that’s what we’re taught) the same effects of stopping taking them are most likely relapse not withdrawal. I find that crazy. (Look up the article in Metro from earlier this year about a woman who stopped taking Venlafaxine. The words of the psychiatrist about it being relapse are just nuts in the light of everything she went through.)
Unfortunately too, even by chopping tablets into four and mixing with capsules, the next taper is a bigger one. It’s daunting given how tough the last two small tapers have been.
Unfortunately the GP has no ideas about how to deal with that and nothing to offer as a short-term solution while brain adjusts to the tapers. [They won’t prescribe the shockingly expensive liquid that would make for a safer taper. It’s more than £100 for a bottle whereas they can get the pills for £7.46 a packet.] I might push for it anyway when I see the GP again. Do all the sums. Work out a tapering system of reducing by 1mg every 2 or perhaps 3 days and the best way to combine that with pills to minimise costs. Two bottles would easily be enough to get me free of Trazodone.
Oh to not be so bloody sensitive to psych meds whether I’m on them or coming off them.
Oh to be one of those lucky people who can reduce them without hell. That would be very pleasant indeed.
I could just come off the thing but I’d need a hell of a lot more support in place to do that. I could just cut to the next easy taper but again that’s likely to be horrible.
At this point, just to get off this drug, I’m strongly considering buying some jewellery scales so I can crush tablets very small and accurately weigh smaller doses.
It would be a hassle. But it would also mean I wouldn’t be looking forward to more hell. I am undecided.
For now, I’ve got to wait for head to adjust to a dosage. And then move on.
A final option is to stay on this dosage for life. It won’t kill me. It won’t help because I’ve long since developed a tolerance for the medication but it won’t kill me.
Next month I’m being assessed by CMHT (who accepted a referral after refusing four others). Unfortunately they’ll probably want to do practically nothing apart from drug me further. Given my symptoms probably with some kind of antipsychotic. And I don’t want drugs. Especially not any kind of antipsychotic because I value my long-term future too much and fully believe in both recovery and compassionate acceptance.
With the experiences I’ve had of psychiatry over the last 30 years it takes a lot for me to trust any mental health care to a psychiatrist. Perhaps I’ll be fortunate and find a good one. Hasn’t happened yet. I’ve seen some dreadful ones. Perhaps this time I’ll see someone who isn’t some kind of blinkered bastard child of Kraepelin. [A reference hardly anyone will understand] The woman in that Metro article did manage to find – after a hunt – a decent psychiatrist, David Healy. I can live in hope.
Perhaps they’ll actually have something useful to offer. Like hey, novel idea, some kind of support structure. I know, you’re all laughing at the idea that CMHT would do a thing like that.
Last time I saw CMHT, a couple of years ago, they said – after one appointment – that adult autism services should deal with my mental health at all times. They discharged me into their care and then refused referrals on the basis that they had already seen me and discharged me. Unfortunately adult autism services here is solely a diagnostic service and offers no ongoing support. The people at CMHT of course didn’t believe me when I tried to tell them that.
We haven’t yet heard anything from the specialist care that would address my issues in a drug free manner. Hopefully by the time we next see the psychologist he’ll know better what’s going on.