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Neurodivergent members

Two diagnoses, one prescriber, no joined-up plan

Started 6 December 2024 · 19 replies · 246 hearts · read 3.5k times

NixLeith, UK · 6 December 2024
1.6 years ago

Starting a thread on this because it keeps coming up in ones and twos: Two diagnoses, one prescriber, no joined-up plan

Not asking anyone to fix this. Mostly saying it out loud somewhere it will be read kindly.

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.

What I keep tripping on is not the physical bit. It is the not knowing whether what I am experiencing is normal, and having nobody to ask who is not either selling something or frightened for me.

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

82

GwilymCaernarfon, UK
#1

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

13

SoniaValencia, ES
#2

Reading the opening post, I recognised more of that than I expected to.

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.

15

LeifTrondheim, NO
#3

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

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.

10

KikiFacilitatorGlasgow, UK
#4

Noticing out loud that this conversation has drifted into comparison. That happens without anyone intending it and it does not help anyone. Let us come back to the person who asked.

33

TobiasHamburg, DE
#5

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

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

11

TarqWindsor, UK
#6

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

7

TacitaRome, IT
#7

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?

11me too 5

AnnikaStockholm, SE
#8

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

11

WilfStoke, UK
#9

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

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.

13

ObieNashville, TN
#10

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

7

Bryn MNeath, UK
#11

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.

13me too 5

NixLeith, UK
#12

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

It got worse before it got better for me, which I wish someone had said. About ten days of worse.

11

GwilymCaernarfon, UK
#13

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.

14

SoniaValencia, ES
#14

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.

9

LeifTrondheim, NO
#15

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

10

EsmeAix-en-Provence, FR
#16

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

15

TobiasHamburg, DE
#17

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

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

8

KikiFacilitatorGlasgow, UK
#18

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.

25

TacitaRome, IT
#19

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

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

10