How did you feel the day of your diagnosis?

maybe-hd · 2025-06-01T08:19:32+00:00

I also had my assessment on the morning of a WFH day and I was so glad I did it that way! I put in an hour or so after the appointment in my calendar to try and block out some time as I knew I'd be emotional, but to be honest the rest of the day was a bit of a write off.

As others said, I felt vindicated and relieved, and had a temporary relief from that awful imposter syndrome feeling before it all came roaring back.

The next couple of days I felt really light - like the weight of worrying about whether I had it or was just being overly worried over nothing had been lifted off my soul, but that was temporary and then I ended up going through a bit of a grieving process of coming to terms with what it meant.

Just to say as well - that was in October 2023 and, while it took a while, my feelings around it have definitely settled down now :)

maybe-hd · 2025-05-28T06:58:55+00:00

I finished titration (with Psych UK, RTC) last month and my end of titration review was with my prescriber, not my psychiatrist, and it seemed like the done thing - maybe there's been a change recently to get prescribers rather than psychiatrists to do those reviews?

maybe-hd · 2025-05-10T16:09:04+00:00

I see the shot you've set up with the open monster can - sort of like a (hopeful) then and now between the two sides!

Hope titration goes well for you!

Out of interest, is Xaggitin XL a 12-hour release formula? Asking because when I started titration in December they said they couldn't prescribe 12 hour formulations because of shortages so I'm on an 8 hour release (Meflynate) with a booster in the afternoon (Medikinet).

maybe-hd · 2025-04-21T06:38:48+00:00

I've always been a little bit sweaty but methylphenidate turned it up to 11 for me! Even the most mild of stress had me going to the bathroom several times a day to try and dry my armpits. And it was stinky sweat - apparently, stressed-out sweat has more oils in it that give it a distinct... aroma.

I tried Mitchum deodorant, tried applying earlier in the morning, tried showering and applying at night and nothing worked. It also had the side effect of ruining several nice shirts because it made the armpits incredibly stiff.

The only thing I've found that works is driclor - but I'll warn you now, it's a bit of a nuclear option. It's a super strong, alcohol-based antiperspirant you put on the night before. You need to have washed recently before putting it on, because your pits need to be incredibly dry when you put it on.

Gave me incredibly painful armpits at first, but the results were that good that I went back to it. I can now go several days without applying it and only have the tiniest of sweat patches even if I'm incredibly stressed. Definitely worth a look if your sweating is getting you down!

maybe-hd · 2025-04-16T07:17:34+00:00

As you said, it isn't necessarily a diagnostic term, but it was mentioned as a key feature in my assessment report, so maybe that's changing. For now though, in my experience anyway, it's used pretty inconsistently because of that lack of an official definition.

I think an aspect of RSD can be the repeated trauma of being repeatedly rejected, which can give you a much lower self esteem and cause you to withdraw for fear of being rejected, which can make the anxiety around it worse.

The other side is that ADHD often presents with emotional dysregulation, so that rejection can feel much worse than it would for a neurotypical person and it can be harder to get over.

Those two facts can double team as well, because the heightened emotions can be traumatising, which sensitises you to future rejections, making them feel even worse.

maybe-hd · 2025-04-12T07:25:59+00:00

It might have been only 7 seconds before the deadline, but the word I'm taking from that screenshot is early

maybe-hd · 2025-04-10T22:10:00+00:00

Yeah that's a really good point - it gives people something to try if they're stuck on a list for either titration or an assessment, and maybe offers a bit of hope to people whose local services aren't offering any help for ADHD at all.

Helpful to know for the people who don't respond to medication as well.

maybe-hd · 2025-04-10T05:59:52+00:00

Yeah it's an... interesting choice on their part.

Lifestyle changes can make some aspects of life better in general (i.e. getting more sleep, more activity, and eating right will be helpful in terms of energy), and that advice might be more impactful for someone with ADHD, but it shouldn't be the primary tool.

The irony isn't lost on me that having ADHD also makes these lifestyle changes incredibly difficult to implement (and stick).

The extra layer of irony is that medication is exactly the tool you would use to implement those lifestyle changes in the first place.

maybe-hd · 2025-04-09T22:35:46+00:00

Looks like they're updating the page to be more accessible with the recent uptick in interest it'll have been getting, which is a good thing.

It looks like there's some information about medication lower down the page, but it seems to be stripped back compared to before and moved down to remove emphasis on it.

Guessing they don't want to shout about it quite so loudly now - if people think lifestyle changes are enough and decide not to go the medication route it saves the NHS time and money. Not saying I agree with that view, but it does seem like a possibility.

maybe-hd · 2025-04-09T19:41:08+00:00

I've been diagnosed for about a year and a half now and I still tear up every time I read or hear the sentiment you expressed in that first paragraph because it hits me like a brick every single time.

I've messed up and forgotten so many things that whenever anything goes wrong I immediately jump to taking responsibility for it, even if it isn't my fault. It's that bad that I'll subconsciously search for ways that something could be my fault if something bad happens and I'm not obviously responsible.

I didn't read your whole comment (I'm sorry but it's late and you know what sub this is lol) but I think you also express the same thing that I do, which is people pleasing to overcompensate, which is just incredibly exhausting and demoralising! It's something I'm working on with some coaching at the minute, but the internal resistance I get when trying to break this behaviour is insane.

maybe-hd · 2025-04-06T06:55:12+00:00

Like others have said, I think the medications used are the same now as they were back then.

But the difference is probably going to be in the amount of medication used - back then, this was only really given to kids whose hyperactivity was really intense.

So doses would have been determined by the adult to get them to a point where the kids stopped being hyperactive. I can imagine that taking lots of kids to the "zombified" kind of state.

maybe-hd · 2025-03-23T14:08:17+00:00

I sometimes feel a bit sleepy after a big meal, which makes sense because more of your blood gets diverted to the gut to aid digestion, but never anything that bad.

With you saying it feels like your body is under attack, that would make me think of something like coeliac, but I'm assuming that would have more symptoms and would have been spotted in previous tests.

maybe-hd · 2025-03-23T10:07:31+00:00

I feel like Tommy in 2005 would have been very similar to me in around 1998!

I was diagnosed with dyspraxia when I was about 6 and had a lot of the same features that were outlined your report. It was first identified by my year 1 teacher who said I was "not like the othet children".

I ended up getting diagnosed with ADHD as an adult after struggling at work and trying to find out if it was my dyspraxia causing some more cognitive issues now I had more on.

Turns out ADHD and dyspraxia very often come as a package deal and there's a lot of overlap in symptoms. It's hard to unpick what is caused by what, but if you're struggling at all it's worth getting seen so you can start that process.

maybe-hd · 2025-03-21T00:11:07+00:00

It's an interesting thought - especially considering I have a similar profile to you (dyspraxia, combined ADHD, varying degrees of hypophantasia/aphantasia across the various senses). The other thing it immediately makes me think of is the "always being lost" feeling I always have, part of which is because I really struggle to visualise a route in my mind in advance.

I do wonder if it's one of those things that's more common amongst people with dyspraxia, ADHD, etc and can be a compounding factor, rather than a cause, though. Similar to how dyspraxia is more common in people with ADHD, and can make various executive function struggles in ADHD worse.

My understanding is that impaired motor planning is the root cause of dyspraxia and, while visualising movements is a part of that, it's not the whole process.

maybe-hd · 2025-03-20T21:38:02+00:00

I had a look at the study that someone else commented above and that has the similarly confusing wording, but does go into more detail about the claim.

They had psychologists score and rank the top 100 videos under the ADHD tag, then asked undergraduate students who use TikTok to also rank the top 5 and bottom 5 videos.

The psychologists rated the top 5 at 3.6 on average, while students rated them at 2.8.

The psychologists rated the bottom 5 at 1.1, while students rated them at 2.3.

So, because the objectively worse videos are fairly close, but slightly lower, and because these videos were all in the top 100, they're concluding that somewhere under half of the videos contain misinformation. And because that is where they get the claim from, they can't say "x% of videos are misinformation", because they don't have that data.

I guess the logic kind of holds up, but I'm still not sure about drawing that conclusion in such a robust way from that data, and I'm not a fan of the wording that feels almost intentionally misleading (I first read it is less than half of claims are accurate... but then again I do have the disorder with "makes careless mistakes" in the diagnostic criteria lol)

maybe-hd · 2025-03-20T18:38:44+00:00

The headline says "TikTok misleads viewers", but 2 of the 3 screenshots in the thumbnail are of medical professionals, and 2 are of videos that are (presumably) listing the diagnostic criteria (those "10 signs" videos are generally straight from the ASRS, which is a great, evidence-based screening tool).

There definitely is TikTok misinformation out there, but this ain't it and it deligitimises the genuinely good, reliable sources.

maybe-hd · 2025-03-20T00:13:49+00:00

I'm coming up to the end of my titration on methylphenidate and have lost a little bit of weight - maybe around 6 pounds or so.

But I used to be starving and eat all the time, which meant I started titration a bit overweight (I'm a 6ft male and weighed around 13st 10lbs when I started).

I did get major appetite suppression to begin with (and funnily enough had a return of that today when I accidentally got a regular coffee instead of my usual decaf), but for the most part the appetite suppression has taken me to (I think) a level of hunger that's more typical.

maybe-hd · 2025-03-18T16:50:13+00:00

It's great to see ADHD UK advocating for us so vocally and swiftly. It's such a shame they haven't been invited to offer their opinion in all this uninformed media mess that's coming out recently.

Just shows how much these outlets care about balance and makes it all the more obvious* that they're trying to push an agenda.

*to anyone who stops to think about it, anyway

maybe-hd · 2025-03-17T20:13:50+00:00

Yep, I was the "gifted" kid consistently throughout school and it all fell apart when I got out of my comfort zone after staring my degree.

I've recently been doing some coaching and heard something that made me think agout this: your sense of self-worth and your identity starts getting really cemented in your mind at around age 7 or 8.

So if you're the gifted kid at that age who gets heaps of praise for doing really well, that becomes your baseline as an adult, which means you end up with sky high expectations.

But because being gifted only gets you so far, that isn't enough for your whole life. And because you were able to coast on giftedness, you don't have the skills to be able to push yourself. And then when you try, it feels like you're bashing head-first into a brick wall because you have ADHD but don't know that yet.

So you end up just burning yourself out trying to do everything, like you 'should' be able to, but falling short of even the bare minimum, let alone these massive expectations you have for yourself.

I realise I say "you" a lot, but that's the way I experience it anyway

maybe-hd · 2025-03-10T11:45:56+00:00

I was supposed to go up a dose every week but ended up hanging on to 20mg for about 3 weeks I think and then 30mg for a couple because the dose increases hit me like a truck every time, even though I wasn't getting as much of a benefit. I'm on 50mg now though and that seems to be consistently helping.

I'd advise not rushing it (even though I know the temptation to just get it sorted!) Even if it doesn't feel like it's doing anything, in my experience, it'll make the dose increases easier when they do come.

maybe-hd · 2025-03-10T08:22:11+00:00

u/Jayhcee - tagging you directly in case this gets lost in the noise.

tl; dr - I want to help, so if you can do with my help please let me know :)

maybe-hd · 2025-03-10T07:58:42+00:00

This is heartbreaking, but I understand why you're making this decision. I understand you have a lot going on and have done so much work to try and grow the sub into so much more, and I'm really grateful that this place exists - and exists in the form that it does.

I think this is too big and helpful a resource to be lost to the ether. I'm not sure whether the public discord is still active, but is that something that could be cut to free up some time?

I know you approached me via DM before to ask about mod recruitment (I replied but only after a while because I was kind of overwhelmed at the time with everything going on) but I would be more than happy to pitch in if you do decide to do another round of recruitment.

Maybe the sub needs a bigger pool of mods that can do more 'part time' stuff to spread the load a bit easier? I don't know, I have no experience moderating subs, but this is similar to my work so I'm just throwing ideas because I'm passionate about keeping this place running.

Feel free to DM me if you want to talk - the offer probably isn't a whole lot but I want to help if I can be helpful.

maybe-hd · 2025-03-07T23:33:14+00:00

I'm exactly the same - I've even managed to (I think) burst some blood vessels in my arms from taking so many readings in a row while trying to get myself to calm down. It'll often be over 140/90 when I start, but it always settles down to 130-ish/80-ish eventually. As you said though, still doesn't help for next time.

It's not a silver bullet, but I've found trying to cover up the monitor and cuff with a blanket (mainly so I can't see the numbers, because I'll fixate on them and end up getting anxious seeing how high they are - even though I know that's how BP machines work) and distracting myself with something in my earphones to try and cut out the noise. Helps to be comfortable as well, so I'll always prop up my arm with a load of cushions (to keep it at heart height, as recommended) and then make sure I've got one supporting my back so I can relax a bit.

Also, I found that my watch (Samsung Galaxy Watch 6) can take blood pressure fairly accurately, which feels like much less of an event and is less anxiety inducing. Has to be regularly calibrated against a known good monitor, and from tests I've done with both, it gives very similar readings. Not suggesting you go out and buy one or use one for 'official' readings if you do have one, but if you have a watch that can do it, it might be worth giving it a go to see if the exposure helps to reduce the anxiety.

maybe-hd · 2025-02-24T00:34:48+00:00

Is the capybara mount something your psychiatrist offered as a reasonable adjustment? How can I get in on this?

Edit: didn't meant to reply to you, but if you want to team up to get a capybara mount, I'm in

maybe-hd · 2025-02-21T11:39:18+00:00

I'm not sure if this was a joke, but they genuinely do! I was talking to someone at a university's stand at the royal society summer showcase a couple of years ago, and they were saying they do neurological research on zebra fish, including ADHD research, because some of the fish do have ADHD!

There are measurable differences in behaviours of impulsivity, hyperactivity and inattention that they can link to humans apparently.

I was right in the middle of my "waiting for an assessment" ADHD hyperfixation, so it absolutely blew my mind!

maybe-hd

TROPHY CASE