First cohort of adults diagnosed with ADHD and growing old. AMA

[Imdunfer]

I'm in the first cohort of adults diagnosed with ADHD and growing old with it. It has definite challenges related to aging that I'm dealing with daily. Ask me anything as long as you don't suggest that you think ADHD doesn't exist and that it's just a variety of neuro typical.

When I first started I slept at every opportunity for weeks. My body and brain could finally be still. (Well still for me). I also went through a period of mourning for myself pre medication. I stated to look at people in my life through new eyes, I cut my mum off. I put firm boundaries in place with others. I am upfront about my need for alone time. I know myself better now, I am myself too. The mask is off and love me as I am or don’t bother - and that’s something I could never have felt pre meds. I care so much less, I am anxiety free, and I’m seriously chill now (mostly, dependant on hormones). I’m patient, present and just a much better version of myself - the version I’ve always wanted to be but never knew existed.

It’s also a tool to help you step back from yourself and form better habits and behaviours

@Pastelpughavw you started them yet?

Yes about 10 weeks in on 54 mg

Do you have any of the comorbidities like hypemobility and POTS?

How do people respond if you tell them?

I'm 54 and have heard allsorts of rubbish my only sibling said it's a made up condition and you're just lazy and can't finish anything. A nurse said oh now you dan claim benefits.

It was a relief to find out the why and build strategies to help but the anger of whay might have been is immense.

I am not angry anymore. What could have been doesn’t matter to me now, because I’m a few years in. But at the start it really did, I was so sad.

im not familiar with pots, but I definitely have PDA. Meds help though

Respond to what? Me saying I have adhd?

Google Lewy Body Dementia and ADHD and follow the links. The association is disturbingly strong. I only found out about it this week and mostly from this thread!

Yes there is a genetic component to ADHD. I'm sure my mother had it, so does one of my brothers.

Yes I am moderately hypermobile and also have very mild POTS but POTS is also a symptom of Holmes Adie which I have as well.

Tell them what, about the ADHD? It doesn't tend to come up in conversation. When I got a diagnosis I explained to all my friends and apologised for the times I'd made life difficult for them. They were all great about it.

My childhood nicknames were "ants in her pants" or "donamoan". Nobody tried to work out why I might have been moaning at 5 years old.

You are not one of the first cohorts of adults to be diagnosed then. I get you are older then lots of them; but you definitely are not anywhere near the first ‘group’ to be diagnosed.

What is the point of this post? I'm not trying to set any records I'm trying to help people.

I didn't say I was first to be diagnosed, I said that I am in the group of the first people to have a diagnosis AND grow old.

‘First cohort of adults diagnosed with ADHD’

the point of my post is that you said that and it mislead me into thinking your diagnosis was longer ago than it was.

There waa a second half to that sentence!

The point of the thread was growing old with a diagnosis, ie how old I am now, not how old I was when I was diagnosed.

The age I was when I was diagnosed is entirely irrelevant to the point of the thread.

I'm sorry you're feeling this way so young. I didn't travel much due to an all consuming (and very risky!) hobby from 1991 to 2022, so I had a few years catching up to do before "I've been everywhere and seen everything" feelings started to kick in. I still enjoyed a river cruise this year where they moved the "hotel" and it was no effort to be in a different city every day. I also find being on or near water very soothing so that helps.

I think the only name for it is anhedonia, an inability to enjoy things, which happens because we don't get the dopamine reward that other people get. But it doesn't cover it properly for ADHD, because, for me at least, it's definitely related to nothing looking or feeling unfamiliar. It also feels like hard work to plan to go anywhere, to pack for it, and to get there and hardest work of all to get home.

You do sound like you could do with some antidepressants. Have they tried you on amitriptyline? It's a completely different mechanism from the SSRIs, mostly used for chronic pain relief these days but it might do something for you. I was going to ask me GP for it for both reasons, but again, I can't take it due to glaucoma.

Remember this condition/variation on normal humankind has always existed, you aren’t the first cohort to have ADHD just the first to have a label!

@Letsgetreadytorhumble the condition has always existed that’s the point, we just didn’t give it the label ADHD. Ditto most asd wasn’t recognised. It is not knew but research indicates that our modern lifestyle is not helpful so symptoms are exaggerated but they did exist

Thanks I will look that up ,your very informative,I'm greatful for your advice.
My doctor won't give me any more antidepressants, because she says I've tried everything she could possibly give me (plus she keeps telling me everything is normal for autism..so I get absolutely nowhere trying to get help for anything she thinks is autism..even if I agree but still say but it's upsetting me ,I need help ,I'm told it's normal..I give up with her .. luckily I had a different doctor who referred me for autism and ADHD assessment...)..I never got past 2 weeks with antidepressants,I can't tolerate the zombie feeling ..my DC fell in a swimming pool when she was two and I was incredibly slow to react ..that's what I'm like on them

I definitely believe in ADHD as I have 2 kids with ASD and family members diagnosed with ADHD and personally I have a heavy dose of traits from both ASD and ADHD so who knows I possibly have both.

I definitely know family members from older generations who clearly have it and ASD too.

Back in the day it was very often self medicated with alcohol.

I definitely relate to your novelty seeking, extremely active mind and extreme pattern recognition. Not entirely unrelated to the ND in the family, I have a very dysfunctional family and as a result I became (hyper) interested in people now my ability to spot a problematic personality from 100 yards is at mastery level which is an absolute gift of the condition. My problem also ASD based is I often don’t capitalise on this gift in ways and to the extent I suspect NT people might.

My AMA is what do you think has been the most useful thing (your gift) you have learned about yourself as a person. What has helped you best.

We have already established this.

We are therefore also the first cohort to be able to TALK ABOUT IT, which is why I started the thread.

Please if people have nothing to add to this thread which will help anyone, just leave it alone.

What helped me best about my ADHD was the pattern matching which was really useful in my work.

What helped me most about my diagnosis was being able to forgive myself for the upset I've caused people in the past and to know that I'm not actually a lazy person.

I'm no expert but I think for some it can be bad to alter the serotonin/dopamine balance with SSRIs. I'd ask about amitriptyline if it hasn't been tried.

would swimming help that dopamine hit?

I’m on tamoxifen for breast cancer and an NHS meno consultant I saw recently about it suggested adhd.

what is amusing (to me) is that because I’ve taught send children my whole life I’ve both often thought “oh I do that” then attempted to apply the strategies we use to support them. Some success. Without noting the biggest I use which is exercise and sensory stuff. But high intensity. Also used to ride and miss it desperately. Switched to v fast paced martial arts in the city.

….Whilst also nerding out about the history of the adhd diagnosis, if there’s over diagnosis or not, if it’s helpful or not for adults etc etc 🤣🤪

I think the OCD (which I never realised I have) is the hardest factor.

I keep trying to listen to respected podcasts (eg bbc) on adhd thinking, “ok this will PROVE I’m not.” Only to find I can’t find anything on it that doesn’t describe my daily existence and struggles.

Im very hypermobile and find Dr Jessica Eccles work v interesting.

That said I have huge issues with certain ideologies in the autism and adhd world flying around at the moment. There needs to be more and better research. And more practical advice rather than people thinking that meds are the answer. (Though Beta blockers are v useful for me.)

(apologies; this is an AMA and I’m telling you …! It’s just nice to be able to discuss and read.)

@Brunchatstephaniesthata one gift I don’t have, and really wish I did. My husband is amazing at reading people and knows a wrongen instantly, I tend to take people on face value and get taken in by fakery. Not so much these days though, to be fair. As I don’t drink or go to the pubs anymore I’ve always got my wits about me, and aging helps too.

mins is probably the ability to forget things and people who aren’t directly in front of me. Not completely forget, but just compartmentalise them. Really helps with my ability to not ‘give a sh”t’.
I have a lots more limitations than superpowers though in my opinion - limitations that are there because of the
society we live in, I think. I tend to do well at life for a little while, jugggling everything, then have a little breakdown. I think I’ll thrive in retirement.

What is the pattern matching thing?