What I would say to someone who has just had the call

Started 6 January 2025 · 24 replies · 257 hearts · read 3k times

NorahDerry, NI · 6 January 2025

1.5 years ago

What I would say to someone who has just had the call Writing it down partly to work out what I actually think.

I have had this diagnosis for a long time and none of the general advice quite fits me.

My prescriber has been fine, genuinely. The problem is that I get nine minutes twice a year and there is no version of nine minutes that covers this.

I have read the guides here, which were more useful than anything else I have found, and I still have a question they do not cover.

Anyway. Thank you for reading this far. Any experience gratefully received, and I promise to come back and say what happened.

SamPortland, OR

The phrase that unlocked my appointment was asking what specifically she wanted me to watch for. It moved us from reassurance to a plan in about thirty seconds.

10me too 3

BelCroydon, UK

Different experience here, for balance. Mine did not improve and in the end I stopped, and that was the right call for me. Both outcomes exist.

MiraFacilitatorRotterdam, Netherlands

What the opening post described happened to me too, in a slightly different order.

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SadieSalford, UK

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

MarkCoventry, UK

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

My pharmacist was more use than anyone. Ten minutes at the counter, no appointment, no charge.

MinaLisbon, PT

Can I gently push back on one thing? Not the substance, just the framing — you have written twice that you should be coping better. Who told you that?

8me too 8

GillyWorcester, UK

I keep a two-line diary and it is the only reason I could answer this question about myself. Worth starting even now.

FlossieShrewsbury, UK

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

No advice, just recognition. That sounds exhausting and I am sorry you are in it.

CallaWellington, NZ

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

LarkGalway, IE

#10

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

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

RomyVienna, AT

#11

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

NixLeith, UK

#12

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

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.

NellaUtrecht, NL

#13

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

11me too 6

RohanPune, IN

#14

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

ZebAustin, TX

#15

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

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

LilPreston, UK

#16

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.

SorrelMachynlleth, UK

#17

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

MaisieScarborough, UK

#18

Building on what the reply above wrote rather than answering the original question.

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.

NellFrome, UK

#19

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

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.

RillaAberdeen, UK

#20

Yes to the burping. It is real, it is unbeautiful, and it does settle.

10me too 6

StellanMalmö, SE

#21

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

TobySwindon, UK

#22

Yes. All of this. I had the same in my third month and I remember thinking there was something specifically wrong with me, which there was not.

10me too 9

MiraFacilitatorRotterdam, Netherlands

#23

I want to slow this down a little. There are four different answers flying about and they are all somebody's real experience, which makes them true and not necessarily relevant to the person who asked.

OdileMontreal, CA

#24

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

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.