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The first twelve weeks

Everything tastes wrong and I did not expect that

Started 8 April 2025 · 21 replies · 194 hearts · read 4.1k times

KateBelfast, NI · 8 April 2025
1.3 years ago

A question rather than an update: Everything tastes wrong and I did not expect that

Long one, sorry. I have been chewing on this for a fortnight.

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.

Here is where I am. The medication side has been more or less as described, and the part nobody prepared me for is everything around it: what to say to people, how to plan a week, and how to tell the difference between a thing to endure and a thing to raise.

The thing that has surprised me most is how much of this is about other people rather than about me.

Not looking for a plan. Just company and whatever anyone has found.

65

MargueriteQuebec City, CA
#1

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.

7me too 2

EsiFacilitatorToronto, Canada
#2

the opening post said something I want to sit with for a second.

Thank you for writing this. I am not going to add information to it. I am going to say that what you have described is very common and very rarely said out loud.

21

NellaUtrecht, NL
#3

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

5

Obi OEnugu, NG
#4

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.

8

IlyaAlmaty, KZ
#5

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

13

StefanZurich, CH
#6

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

7me too 7

TavishIsle of Skye, UK
#7

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

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.

10

Ozzy GWalsall, UK
#8

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.

8

BlueStroud, UK
#9

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.

11

BramleyBath, UK
#10

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.

5

NikoTbilisi, GE
#11

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

9me too 8

NualaArmagh, NI
#12

Reading the reply above, I recognised more of that than I expected to.

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

12

OndineLausanne, CH
#13

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?

8

SindriReykjavík, IS
#14

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

12

KateBelfast, NI
#15

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

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

7

MargueriteQuebec City, CA
#16

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.

9

OllieCardiff, UK
#17

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.

5

NellaUtrecht, NL
#18

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

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

7me too 9

Obi OEnugu, NG
#19

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

8

EsiFacilitatorToronto, Canada
#20

Before anyone offers a remedy: what has been described here is on the list of things that need a clinician today rather than a thread. I am going to be firm about that, kindly.

14

StefanZurich, CH
#21

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

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

8