The evidence pack I assembled and what was in it

Two things that helped me, neither of them clever: small amounts more often, and drinking a lot more than felt necessary.

Mine lasted about seven weeks and then lifted over a few days. I cannot tell you why. I can tell you it lifted.

Similar here, and mine turned out to be a completely unrelated deficiency picked up on bloods.

I have been in this circle a year and this question comes round every few months. It is not a silly question. It is the question.

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

Please do not read the comments under news articles about this. I lost a fortnight to that.

I asked my nurse the same question and she said something I have repeated ever since: that the aim is to keep you on treatment, not to get you up the schedule.

I am about four months behind you and I have been dreading exactly this, so thank you for writing it down before I got there.

Practical, boring answer: write the three questions down before you go in. I have never once remembered them otherwise.

I did exactly the same and felt terrible about it. You have not done anything wrong.

I am the person who had the frightening version of this. I went in, it was investigated, and it was not what anyone feared. Going in is the whole of my advice.

the reply above said something I want to sit with for a second.

Coming back to this a fortnight later to say it settled. Leaving the update because I hate reading threads that stop.

What the reply above described happened to me too, in a slightly different order.

For what it is worth, the trial data on this is thinner than the confidence of the internet would suggest. Worth knowing when you read the posts.

The thing that changed it for me was going slower, agreed with my prescriber. I am not suggesting you do that. I am saying the conversation exists.

Have you got anyone who can be with you when you do it? It made an enormous difference to me and I felt silly asking.

I would take that to a clinician rather than to us, and I would do it this week. Not because it is definitely serious — because it is the sort of thing that is much easier to rule out than to worry about.

Gently disagreeing with the reply above, or rather adding the other half of it.

My experience was very boring, which I offer as data. Some of us just get a dull time of it.

What helped was lowering my own expectations of the week rather than trying to hold the week together.