My prescriber stopped it and I was not consulted properly

Started 20 August 2024 · 23 replies · 268 hearts · read 2.7k times

IdaRotterdam, NL · 20 August 2024

1.9 years ago

A question rather than an update: My prescriber stopped it and I was not consulted properly

Writing this partly to ask and partly because writing it down usually tells me what I think.

My honest position is that I do not know whether to change something or wait, and I have been going round that question for three weeks without getting anywhere.

I have a review coming up and I would like to arrive with a proper account of this stage rather than the vague description I gave last time.

What I am trying to work out is whether this is a phase with an end to it or the shape of things now, and I do not think I can tell that from inside it.

Thanks all. Genuinely. This circle has been better company than I expected to find anywhere.

TedIpswich, UK

The thing that made it manageable was that nothing about the decision was final. Reviewing it in three months was always an option and knowing that took the weight out of it.

TanviMumbai, IN

Building on what Ted wrote rather than answering the original question.

My reason was that I no longer wanted to be doing it, which felt like an insufficient reason until my prescriber said it was a perfectly good one.

12me too 1

TillyHereford, UK

Ted — yes, and the bit that took me longest to accept was the next part.

Honest note: my first month off was much better than I had feared and my third month was much harder. The order surprised me.

BenediktFacilitatorVienna, Austria

What I would add is that this circle has a long archive of people at exactly this stage, and reading the older threads is often more use than a new one.

DelythBala, UK

What Tilly described happened to me too, in a slightly different order.

I came off because of cost, not because of anything clinical, and it took me a long time to say that without embarrassment. It is an extremely common reason and it is not a moral failing.

7me too 5

BronLincoln, UK

Coming back a year after stopping to say that I am well, that it was the right decision for me, and that I still read here every week.

BramwellRipon, UK

If you are reading this while deciding, the only thing I would push on is: is anybody clinical in the loop. Everything else is genuinely yours to weigh.

GabePhoenix, AZ

I stopped twice. The first time badly and alone, the second time properly and with support. The second one is the one I would describe as coming off.

Birdie BWhitstable, UK

Bron, thank you for that. It gives me somewhere to start from.

My prescriber's line was that stopping is not a door closing, and she was right in my case. Going back later was a conversation, not a re-application.

TressaSt Austell, UK

#10

Adding a name to the list of people this helped.

FenEly, UK

#11

Mine was a planned stop with my prescriber over about four months. Having a plan made the difference between a decision and a collapse.

BryonyMalvern, UK

#12

Reading Fen, I recognised more of that than I expected to.

The thing nobody told me is that stopping is a process with its own weeks in it. I had expected a date and got a season.

14me too 3

NikoTbilisi, GE

#13

Picking up Tressa’s point rather than starting a new one.

I stopped, and about six weeks later the background hum came back, and that was the part I was least prepared for. Not the physical side. The noise.

GudrunAkureyri, IS

#14

What I would say to anybody considering it is to have the conversation before you decide rather than after. My prescriber had two options I had not known existed.

DashSeattle, WA

#15

I came off for eight months and went back on, and I want both halves of that on the record because threads that only cover the leaving are only half a story.

FabianBasel, CH

#16

Nobody here is going to think less of you for stopping. That was my genuine fear when I posted about it, and it was completely unfounded.

SinéadCork, IE

#17

Mine was a side-effect decision, taken carefully, with two conversations and a proper look at the alternatives first. It was the right call and it was still sad.

9me too 1

IdaRotterdam, NL

#18

Building on what Dash wrote rather than answering the original question.

The practical thing I got right was writing down why I was stopping while I was still on it. Two months later I could not have reconstructed my own reasoning.

TedIpswich, UK

#19

Fabian — yes, and the bit that took me longest to accept was the next part.

I stopped because my prescriber said so, which is a very different experience from choosing it, and it took me longer to make peace with because it was not mine.

TanviMumbai, IN

#20

What I found hardest was other people treating it as a failure while my prescriber treated it as a normal clinical decision. Their reaction was the difficult part, not the decision.

TillyHereford, UK

#21

What Ida described happened to me too, in a slightly different order.

The tapering conversation was more nuanced than I expected. It was not simply stop or continue; there were several shapes in between and I had not known that.

10me too 2

BenediktFacilitatorVienna, Austria

#22

Adding a marker so the thread does not lose it: when the same practical thing gets named twice by two people who have never met, that is usually the sentence a newcomer needs, and it is rarely the one at the top.

DelythBala, UK

#23

Six months off and I am fine. Different, and fine. I came back to this circle to say so because when I was leaving I could not find anybody who had.