Anyone here got adult ADHD?

[Pegs11]

At age 43 I have just been diagnosed with ADHD (combined type), which I’ve had since a child but it has gone undiagnosed and untreated until now, because I always masked and internalised it.

I never even really knew what ADHD was, I thought it was just being hyperactive and impulsive. Now I know there is so much more to it… and it explains everything about how I experience life and the world around me.

I haven’t started the meds yet (hopefully next week) but I am keen to see how they might help. I particularly struggle with emotional dysregulation and rejection sensitivity dysphoria. I’ve heard that the meds can help with this sometimes, but not always.

This feels like such a huge revelation… I never was able to understand, or explain to people, why I have always felt like my brain worked differently compared to others. For example, why things that seemed so easy to other people felt overwhelming to me. It is all beginning to make sense now.

I am starting to realise how fundamentally this condition has impacted on my life up until now and I’m pretty horrified.

I could really do with connecting with other people, especially women, who have experienced this… If any of you are out there and are willing to share your experiences and maybe answer some questions for me (I have so many!) please reply!

@BertieBotts I can relate to all of that! Thank you for your helpful comments and recommendations. When I have my treatment plan appointment next week, I’m going to make a specific point about needing help with the RSD, because it’s a massive thing for me and because I’ve read in pieces written by experts that sometimes a combination of two types of ADHD meds can help. I would do anything to make the RSD and my general emotional regulation more manageable, and therapy alone did nothing for me in this regard.

@ADHDat43 we’re ADHD twins, haha!

Could you describe to me how the vynase helps you?

@AnotherDayOfSun I try to keep my surfaces clear but the junk quickly mounts up again, and then I find myself with no motivation to sort it out because it just feels overwhelming. I did try to sort out a cupboard full of boxes of random stuff a few weeks ago, I took everything out and put it on the floor and tried to sort it into piles. Ended up just moving things around on the floor like an endless game of chess and then gave up and put everything back into boxes in no particular order and shut the cupboard door and I haven’t looked at it since. And my desk upstairs is so cluttered with admin and plants and wires and other junk I can barely look at it. I have spent the past two months working on my laptop downstairs sat on the sofa 😅 am hoping the meds might give me the ability to actually get this stuff organised and put away/thrown away.

The thing with mentioning RSD in a clinical setting is that the HCP might have absolutely no idea what you're talking about, because it's internet vernacular rather than a clinical term.

I would talk about emotional dysregulation, especially in the context of experiencing rejection or criticism or judgement from others. You could say something like "I've read online about what people call rejection sensitivity and this seems to fit?" but I wouldn't go in talking about RSD expecting a doctor to know what that means.

For decluttering and organising I cannot recommend enough the approach by A Slob Comes Clean. It seems to work really well for my ADHD brain!

Isn't it funny when you think something is "just you" but it turns out that so many others have a remarkably similar experience? :)

The endless tabs so I don't forget something that may be important... Like "Top five fruits which may lower blood pressure" or something similar. And I just have to write that down somewhere because it may be important.

And yes, the "other people just get on with it" comment is very familiar, although it was mostly when I was younger.

It's not surprising that your brother's ADHD looked different. I think there is more and more awareness now that it can manifest differently in women.

Sending good wishes to all my ADHD sisters and brothers out there!!!!

@BertieBotts The RSD terminology resonates with me but I can see how for some other people it might not. What I’ve understood from my research so far is that RSD is “sort-of” a clinically recognised condition, it is very specific in terms of presentation and is separate from merely “rejection sensitivity”. It was talked about a lot in reference to ADHD before the DSM came into being, and is known to be (almost) unique to ADHD… but it didn’t make it into the DSM, and is not part of the diagnostic criteria for ADHD. Which I think is a shame, because a significant percentage of people with ADHD report having it and it’s a massive thing for me! I have both RSD and the more generalised rejection sensitivity. Both suck, but the RSD is really crippling. It’s like a deep, DEEP emotional pain in response to rejection/criticism and it feels devastating, like someone’s died, an end-of-the-world type total overreaction. But it only lasts for a few hours then gets better and I feel back to normal(ish) again. It makes arguing with anyone in person IMPOSSIBLE. Because I just shut down and can’t speak or move or anything.

In any case, “emotional dysregulation” was the term used at my appointment and seems to be more useful in that setting, so I concur with you on that. I would love to find some way of overcoming it, as along with the chaotic thoughts it’s the most crippling aspect of my everyday experience of life.

I can totally live with being disorganised and forgetful and not listening and clumsy and bad at planning… if it was just those things, because in isolation they are not “terrible” things… in some senses they could be deemed mere quirks (certainly in my case) but it’s what’s at the core of it that I need to tackle. And that is constantly racing, exhausting thoughts and the emotional dysregulation I’ve described above.

I made an appointment with the GP to discuss. Was given the ASRS scale test to fill in and return to the practice along with a letter stating why I wanted a referral. Was told the waiting list (NHS, not through Right to Choose) was about 2 years.

But I'd started a new job and was struggling and after 4 months and a Reddit post I made an appointment with MyPace and was able to get an appointment within a month.

Once I settled on a dose of medication and titration ended, they sent a letter to my GP requesting shared care so that my GP could take over prescribing, and they agreed (it's hit and miss whether GPs will do it apparently).

@BodegaSushi how long did titration take with you?

5/6 months 🙈

That's because I started on non-stimulants and you have to give them 3 months to work before deciding if they're right for you.

Then I had one month on a stimulant drug where each week was increasing the dose until reaching the maximum, then one month on my settled dose (I went for the second highest dose) before signing off on it.

A typical titration, if you stay with one medication, is average 6-8 weeks

@BodegaSushi my blood pressure is nice and low so I’m kind of hoping I can start with the stimulants, simply because I’m so fugging tired all the time 😅 it probably doesn’t work like that, but I have fantasies of being awake and bouncy in the mornings and not feeling like I have the worst hangover for the first three hours of every day… 😅

Diagnosed late 50s. Privately. 40mg Elvanse about 4 days a week.

Elvanse makes me talk a lot! But I'm bouncy and busy those days. No Elvanse days I lie about doing naff all thinking of what a bad lazy etc person I am.

Elvanse does not help with RSD for me. I have that vv badly and spiral into a fight or flight state very fast. Holding on to relationships is hard especially with those who don't really understand and who think - and tell me - to "live in the now", or "well no one wants to do the house work", or " why do you think I hate you when all I said was xyz".

I too look so sadly back at my life. I'm fortunate as I stumbled into the right job that stimulated and financially rewarded me (self employed then business owner now retired living off dividends haha) and found a tolerant man to have DC with. But I've been so challenging to live with, so up and down, so changeable. And fucked up so much.

My mum is cold and lacks any nurturing or empathy, she said to me she has to remember to ask how I am. We both think she may be autistic (lots of reasons ) and my upbringing lacked warmth oand was certainly not child centred. I have found ongoing, deep therapy very useful indeed - NOT CBT or anything "counselling", but full bore therapy. It was realising that my total inability to cut back the ivy that was growing into my living room through the window, was nothing to do with a "rebellious child" or me wanting to be cared for - I, at 54, just could not face the effort it required. I could not, rather than would not, so it, that made me seek a diagnosis.

Long story short - give therapy another try, and or seek a ND coach.

Your hungover feeling may be sleep apnea by the way. Try a "record your sleep noises" app for a few weeks to get a picture of that. I simply had not realised how badly I snored. I lost some weight and sleep on two pillows now and do sleep better.

@anythinginapinch I’m sorry for what you’ve been through, and the struggles with connecting emotionally with your mum. I have issues with my mum too. She had massive issues with her own mother, so it kind of makes sense. But knowing that doesn’t fix anything of course.

It’s a blessing that you found a partner who is understanding and patient with you. A brilliant life achievement! And to have found a career you love and that rewards you well.

I am working on things with my partner…

I haven't read thread yet going to later after my children's bedtime when I've got more time, I was diagnosed last week . Realised last few years since my daughter was diagnosed with autism at 2, before didn't really know much about it , been diagnosed combined predominantly inntentive. Starting medication when at my next appointment, really weird time for me trying to come to terms with it hoping this thread will help. My life is massively impacted without realising . Food is my main issue. So hoping medication can help.

Wanted to add I'm 40

@Rainbowsandbutterflies1990 I’m about to start meds at my next appointment too. I’ve just been watching a very interesting (short) video about how the different types of meds work:

I still feel I have so much to learn about the condition! Until a couple of months ago, all I knew was that it made kids hyperactive and inattentive. When I found out all that it REALLY entails, it was a complete revelation and everything about how I have experienced life started to make sense.

I am now struggling with massive impatience, wanting to get started on the treatment and I’ve got a whole four more days to get through!! 🤣

I think I’ve been expecting a magic bullet… hoping it will be an overnight miracle and I’ll just be magically BETTER the minute I start on the meds, like all those people on Instagram 🤣

But chatting to people here, it seems like I could be in for a long-haul flight in terms of getting the medication right, and that it’s probably not the panacea I was initially led to believe! But honestly, ANY improvement will be a blessing. If my brain can just let me get more stuff done in a day, I can go to bed feeling like I’ve actually accomplished something, and that in itself would boost my mood and self esteem I think.

What are your main symptoms? What’s the issue you struggle with regarding food?

Diagnosed at 39. Elvanse has been amazing, life changing for me. Took me a while to get to the right dose, but yes has totally helped emotional regulation. Before my brain would be so impulsive - there was no pause between the emotion and the reaction/behaviour. I’ve always thought I felt stuff deeply, but actually I’ve felt stuff fast without thinking. Now my brain is slower and I actually have time to think and rationalise. I’m so so so much calmer in every sense (not just emotionally).

For example I got an email this afternoon and the person was quite short and curt. Normally I’d have freaked out but today I just shrugged like “okay they’re having a bad day and if they’re not then they’re a bit mean but hey ho”.

I really recommend Russel Barkley too.

Good luck with meds! Go slow and don’t be afraid to try different types. I was on Concerta (Methylphenidate) and it was alright but not wow, so I thought I’d give Elvanse (Lisdexamphetamine) a go and like I said, life changing.

And solidarity fist bump ADHD ladies!

I struggle with choice overwhelm and decision paralysis. So deciding what to eat is awful so I tend to have safe foods which are surgery and unhealthy and weight has balloned I also stim with food and eat for dopamine so just horrible habits also cannot keep consistently when trying to help myself.

@FlyingUnicornWings thank you, this gives me so much hope… which is what I need right now!

What you’re talking of with regard to how the medication has helped you regulate your emotions, this is what I dream of… my life would be infinitely better if I had this ability. When I get the RSD it makes me feel so weak and powerless, like a child, who cannot fight or stand up for herself. It is so, so crippling and means I can never get my needs heard or point of view conveyed properly, because I just freak out and freeze. And then I get SO frustrated and angry, but it’s all internalised, apart from every now and then when I just can’t take it anymore and I’ll have an “outburst”. And those can be pretty ugly.

I also suffer from negative thought patterns, like, imagining problems that haven’t happened yet, wondering how I’d react if this awful thing were to happen, and getting angry and distressed just thinking about some horrendous thing that someone HASN’T said or done but they COULD. It stops me from being able to be present and enjoy the moments… like, when I go for a lovely walk, I want to be enjoying the fresh air, the gently swaying trees, the birds singing, the scent of freshly cut grass, with a clear mind…. But all I can think about is: am I about to be mown down by a moped driving illegally on this footpath I’m on? What would I do if one knocked me off my feet, or ran over my dog? Are those kids over there going to start playing grime on a portable speaker and ruin my peace, the little shits? And I don’t have the executive ability to direct my thoughts away from that negative stuff. I am very emotionally immature! I wonder if the medication might enable me to develop/access a more rational thought process with that stuff too. What do you think?

@Rainbowsandbutterflies1990 what you’ve just described, yep. Sugar for dopamine. Absolutely. Yesterday I ate a share-size bag of Haribo Supermix for lunch, and a share-size bag of Drumsticks Squashies after dinner. The shame of it! Oh, and a Starbucks iced latte. My diet isn’t always THIS bad, it’s just particularly out of control at the moment, and the weight is piling on…

I am trying to exercise for dopamine (and general physiological health) too - Pilates is amazing, it calms me down loads and helps me reconnect with my body, which is so important - but it’s hit-and-miss in terms of routine.

A lot of people do not understand the NEED for sugar. They think we are just greedy. But those people have brains that produce normal levels of dopamine, they don’t constantly need to be topping it up. People don’t realise how important dopamine is until they don’t have any. And with an unmedicated ADHD brain, of course you’re going to reach for the quickest and easiest thing!

There are places that will do it “cheaper” but you will get someone who is not as well qualified (they will be psychologists, not clinical psychiatrists), they won’t be qualified to prescribe meds, and you’ll end up having to spend more in order to get the actual treatment and follow-ups.

I did mine through MyPace, £360 for initial assessment, £138 for every titration/prescription.

Was seen by a psychiatrist (all of the staff down for appointments were doctors) so there were no issues with prescribing.

Anyone considering this just needs to check and make sure they make an appointment with a doctor, as I know that PUK has this issue (though they're no longer taking on any referrals ATM cos they've bitten off more than they can chew).

Meeeeeeeee 😂

I set an alarm to take my meds. 90% of the time it goes off I'm in the middle of something and I hit silence quickly (the sound grates me) and I thjnk 'I'll take them in 2 mins'.

And then I forget.

@BodegaSushi YES! I’ll set a reminder to go off one day before, then two hours before, then one hour before, then 30 mins before, then ten minutes before, then I hit snooze because I’m in the middle of something, then I hit snooze again because I’m still in the middle of something, then I accidentally hit stop instead of snooze… and the thing I had to remember fails to exist.

I've tried a few different medications: methylphenidate (Ritalin), both short acting and long acting; dexamfetamine, and now Vyvanse (which is lisdexamfetamine; essentially a long acting dex). I got on well with the methylphenidate but my psychiatrist felt that it should be helping me more, so I changed to dex. This definitely made a bigger difference, but my sleep was disturbed if I took an afternoon dose, and the morning dose had worn off by lunchtime. So now I'm on Vyvanse and it's wonderful. I feel less 'speedy' than on either Ritalin or short acting dex; I just feel like l'm having a good day. I feel energized, happy, and purposeful. I only take in on work days, and when I don't take it I notice that I feel sleepy in the afternoon, and a lot more 'muddled' in my head. Interestingly, most of my ADHD girlfriends are also on Vyvanse; it seems to be the 'middle aged lady' ADHD drug!

@ADHDat43 may I ask why you only take it on work days?