“Diazepam.” A single word tweet. Regular readers or Twitter followers will know what that meant: I had hit an intolerable level of anxiety which I was managing with a prescribed benzodiazepine. One which I am not only authorised but encouraged to take; my new consultant is very pro-benzo, and thinks that I don’t make enough of the diazepam that he recommends. He’s a bit cavalier, even for me, because I know a lot about benzos, I’ve done a lot of reading and a lot of thinking. “Don’t worry about addiction, or anything like that!” he says. “You should be using them before your anxiety gets out of hand.” This is something I am working on with my Community Psychiatric Nurse.

Not longer after I posted that tweet, a complete stranger replied to me: “One of the pam drugs. Be careful.”

I actually didn’t need to have it splained to me that diaz is one of a family of pams. I’ve had a date with a few of them. Back in my student days I was prescribed temazepam but didn’t think I needed it, so my friends and I took it recreationally, just to see what would happen (what happened was that we all fell asleep. Wild times). Once I was given lorazepam in hospital. I was quite excited by this, because all the reports I’d heard from other people who find benzos helpful is that loraz is the really effective pam. I was rather disappointed that it appeared to me to do nothing at all. Years ago I tried alprazolam (Xanax) once when it was given to me by a friend. It did nothing for my anxiety, but it did make my legs feel like they were not longer attached to my body.

The only pam that is really my friend is diazepam.

Now, I am not arguing that benzos are an ideal solution to my problems. All the guidance out there (see this Royal College of Psychiatrists easy read version) suggests that they shouldn’t be used daily, or if they are they should not be used for more than a few weeks at a time. But diazepam really helps me. After half an hour or so, the panicky feelings and racing, anxious thoughts subside, I can think, breathe, sleep and I no longer feel desperately overwhelmed and agitated. Anxiety, you may say, meh. No one ever died of anxiety, right? Except my most risky mood state is what has traditionally been termed mixed mood (or “mixed affective state”). Mixed moods combine elements of both low and high mood, so are difficult to manage. The DSM V diagnostic manual changed things up a bit by recommending identification of predominant mood, then noting features from the opposite pole. So I guess you could say I have depressive episodes (low mood and especially anxiety) with features of hypomania (agitation, racing thoughts, goal directed activity [obsessive researching of suicide methods] and sleeplessness). However you define it, it’s risky. While the very low energy levels associated with a classic depressive episode can have a protective factor because I lack the mental and physical energy to carry out plans, when my mood is mixed I have all the suicidal ideas plus the energy levels to do the job. It’s then that I end up in hospital.

I recently read a 2018 review of benzodiazepine use in bipolar that looked at alternatives. It considers antidepressants, but recognises that they can cause mood switching (from depression/anxiety to hypomania/mania) or increase the rapidity of cycling. It’s been recently suggested to me that I start duloxetine to improve my mood and diminish anxiety, but as a rapid cycler who has mood-switched on commencing ADs in the past, I am nervous and don’t know that I can go down that road. Moreover, the AD recommended in the article is fluoxetine, one of my past mood-switch culprits.

A couple of antipsychotics were recommended by some studies, but I was on quetiapine, one of the two recommended, for years without it improving my anxiety. I refuse to take the other suggestion, olanzapine, because of its reputation for even worse gain than that I sustained on quetiapine. If I’m going to try to stay alive, I’d like a functioning metabolism, thanks. The review doesn’t mention pregabalin, a common drug used to treat anxiety, but it’s twice been prescribed for me by consultant psychiatrists with no effect. According to the review, evidence appears to be equivocal as to the effectiveness of CBT for anxiety in bipolar and anyway, I’m on at least an eight month waiting list just to be assessed for psychological therapies, with no guarantee that I will be offered anything.

So what is to be done with my anxiety? Here are my choices. I can use diazepam on a PRN (pro re nata – as and when) basis to manage day to day anxiety and try to stop it building to crisis levels, increasing the dose to 3x 5mg a day when actually in crisis; I can try an AD and risk mania; or I can use – nothing. That’s all there is left to me. Diazepam has in the past been all that’s standing between me and a suicide attempt, while rapid cycling mood switching after starting an AD led to a suicide attempt. So the risks of diazepam use are that if I don’t use it carefully I could be come addicted. The risks of non-use of diazepam are that I could kill myself.

Apparently that’s not enough of a deal-breaker for some people. I understand that there are a lot of people out there who feel that they have been harmed by benzos, that they were not properly informed of the risks, but in some people those negative experiences get turned into a kind of crusade to prevent people like me from using any pams. “It’s my job,” (to give unsolicited anti-benzo advice) another Twitter user informed me today. It’s not their actual job, because they’re not a doctor or an addiction counsellor. They’re a crusader. Benzo use is made into a moral issue in a way that use of other classes of psychotropic drugs is not.

Some healthcare professionals reinforce the view that Benzos are Bad; this can be especially difficult for the service user when not everyone involved in their care is singing from the same hymn sheet. I was once told by a nurse on a generally pro-benzo Home Treatment Team that I shouldn’t use them as a crutch. Historically and currently I have faced a battle with GPs to try and get an actual prescription for meds recommended by a highly trained and qualified specialist psychiatrist. There is a sense that benzos are to be withheld because they will be “misused”, and that following consultant advice would be giving them out like Smarties. While I admit I misused the temaz when I was about 20, and OK I shouldn’t have taken that one Xanax, that was all years ago and I am a responsible, careful user of diazepam. I don’t take it every day. I try not to take it at the same time of day when I do, so I don’t develop habitual usage. I never, ever exceed the maximum dose of 3x 5mg/day, not even when it may be the only thing between me and throwing myself in front of a train because there is no hospital bed available for me.

Every time I try to obtain the diazepam my consultant has recommended it’s made difficult for me. I am made to feel like a “drug seeker”. There is an implication that I should be able to manage without them, and a lack of acceptance that nobody can teach me the skills to do that right now. Complete strangers feel they have they have a “job” to tell me to “be careful”. Yet since the issue blew up on Twitter, my timeline is full of people saying how useful they find these drugs, how they too feel like benzos are the last line of defence between them and disaster. If we’re not to use them, then give us some meaningful alternatives. In the absence of any better solution, don’t demonise our choices.