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!

@pearldiamond yes, emotional dysregulation is one of the main symptoms of ADHD. Emotions are tied to executive function, which is the thing that’s impaired in ADHD.

That makes sense. When she is stressed about doing something (the other day was an hour long revision session on driving theory on Teams - which Tbf would stress me out!) she loses it and starts screaming/crying/throwing things until we decide it's too much for her so cancel it, again. Then she hates herself for, in her eyes, failing at yet another thing 😞
Or if she's running late, omg the stress and shouting...

I SO hope the meds help her regulate this sort of thing. It's so hard to see.

I started ADHD meds for the first ever time today. Only a low dose but already I do think it has improved my focus a little. Curious to see if I'm just imagining it or if it's a genuine improvement. Only time will tell I guess.

I don't get stressed or shout though so can't comment on if it helps with that.

@pearldiamond I am extremely impatient, and can get in a proper rage at the smallest things (for example, a webpage taking ages to load). It’s usually fleeting, but a bit of an extreme reaction. Again, it’s all to do with executive functioning and the difficulty we have with self-regulating.

I’ve just started reading a book called Scattered Minds by Gabor Mate, and was amazed even in the first few pages by how spot-on the author is in describing the symptoms I experience. It doesn’t just resonate with me, it IS me. It explains MY WHOLE LIFE. I’m struggling to come to terms with how long I lived with this condition undiagnosed - four decades! And it’s so frustrating that the answer was out there all along - it just passed me by because I didn’t even know to look for it. There are people out there who were diagnosed even later than me, and my heart goes out to them because it is such a difficult thing to live with when it’s unmanaged. It has the potential to ruin your life. Your daughter is very lucky to be diagnosed while she is still relatively young. With the right knowledge, acceptance and management, her life won’t be impacted so severely.

I would urge you to both find out as much as you can about ADHD. Get clued up. I would recommend reading Scattered Minds, as a start.

@HundredMilesAnHour good luck with the medication. It does take a while to stabilise on them and figure out if/how they are helping you. But it sounds like you’re off to a good start.

Hello,

I've got my second appointment with PsychUK this week. Can anyone tell me in what ways it's likely to be different from my second appointment?

In the first appointment he told me that I am likely to get a diagnosis, pending the responses that my 'known me in childhood' person gave.
So I am anticipating a diagnosis. Will that be told to me in this second appointment? Will there be the opportunity to find out about options for treatment/managing it?

@thirdistheonewiththehairychest can you phone or email the clinic and ask them to clarify what you should expect from your next appointment?

I am undiagnosed ADHD. I know I am as I've always struggled from as far back as I can recall. But only when my son was diagnosed did I start to piece together the jigsaw.

I'm in my 50's and really started struggling with this combined with menopause.

For the first time I took my sons adhd stimulants. Just half a dose. I know I shouldn't but was desperate.
The effect was bliss. For the first time I was able to concentrate without having hyperfocus. I could actually sit quietly and listen to the birds singing, just one thing, not thirty things all at once.

I had such hopes of having a productive day but all I wanted to do was quietly listen to the birds singing and close my eyes. I could relax, the world slowed down and was peaceful and uncluttered. It was a very memorable time before it all started up again.

I'm now trying to get the courage up to see my GP. I'm not sure I can face assessments and possibly not be believed.

I don't think stimulants would have that effect on a neurotypical brain, would they?

@inloveandmarried menopause can play havoc with your mental health with or without ADHD, but ADHD can make it much worse.

First of all, have you seen a menopause specialist? If not, please consider doing so. It can be life-changing!

As for whether stimulants have a calming effect in people without ADHD, while I’m not a scientist (only someone who has by now done a fair amount of reading around the subject) I believe it is unlikely. However, the placebo effect can’t be ruled out, especially if you’ve only taken one dose. You’d need to give it a lot longer on the medication to figure that one out. I’m not suggesting that I don’t believe you have ADHD, far from it. But I should think that a scientist would tell you that one half-dose of ADHD stimulants isn’t enough for a diagnosis. It is, however, enough to warrant further investigation. From what I’ve learned so far about ADHD assessments, it is very difficult to get seen in a timely manner on the NHS. In some areas it can take up to 5 years. I went private, which obviously comes with a cost but I got an assessment within a month and started treatment two weeks later with a private prescription.

@Pegs11 thank you for this.

@inloveandmarried you’re welcome, I hope it is helpful. Good luck to you.

I was diagnosed with ADHD a few years ago, and it was a big aha moment for me too. Meds can help with focus and impulse control, but it varies for everyone. Emotional stuff can be tricky, but therapy can be a good combo. Connecting with others online who've been through this is a great idea.

I got my diagnosis today. Feeling a bit meh about it. I asked to be referred to the medication team when given the option but the only two people who know I was being assessed (my husband and my mum) both obviously think medication would be pointless. They haven't said as much but I can tell that's what they think. I don't know what to do now.

@thirdistheonewiththehairychest Are your husband and mum qualified psychiatrists? I suspect not. 🙄Frankly, unless they are, their opinions on you trying meds count for nothing.

If you want to try meds, then go ahead and try them. They may not work for you or they may really help. At least by trying you will find out.

I started meds less than 1 week ago. I had mixed feelings about it but wanted to try to see if they could help me (but also kept my expectations low). I was actually most worried about them making me ill with side effects as I already have enough problems to deal with and don't want things getting worse. But actually, to my surprise and absolute delight, even the low dose I started on is helping me already. I feel the difference. People who know me have commented on the visible difference. Best decision I ever made!!

That's really encouraging. I think I just need to hear some stories like that!

My pleasure @thirdistheonewiththehairychest, glad I could help. Seriously I've been amazed. My gym coach said to me yesterday that I was "very Zen" and I fell around laughing as no-one in my life has ever used the word Zen even in my vicinity. 😂 It's like I still notice everything going on around me and have 101 ideas all the time but none of it is intrusive anymore. I can focus. I actually sat at my desk and did some work for 1.5 hours this morning without getting distracted or wandering off (usually I'm up and down every couple of mins). I still feel like me, just less distracted / more calm.

Yes, medication has absolutely changed things for me.

I think it can be a bit misleading because what you tend to hear is one of three stories:

1. It's life changing, it's like turning the static in my brain off, now I know what it feels like to be normal etc.
2. It's awful and made me into a zombie, I couldn't cope
3. They're OK but they don't seem to do much

Whereas I'd offer a fourth. Doesn't SEEM life changing. I don't feel particularly different to my normal self. I still absolutely have ADHD moments day to day.

But there is enough change that it allows me to actually function at a much improved level. I can actually make plans and follow them through, I am not constantly exhausted all the time, I do things relating to habits etc.

It does make a difference. It's just more subtle than "OMG, a normal mode switch!!"

I think people experiencing 1 are lucky, or perhaps it's a feeling people get early on in medication before the dose regulates. 2 sounds like too high of a dose. 3 might be unlucky / too low a dose?

Also it's important to understand that medication doesn't make changes on its own, it has to be in combination with putting new habits, strategies, etc in place. It just helps you to actually do that. I suppose that at some points in me getting used to medication I have definitely felt 3. I think this is because it's quite hard to really judge how it is working and it's much clearer when I look back over a more extended period of time and can see, no, actually, my house is staying much more under control, I'm less checked out in parenting.

Watching thread.

@BertieBertieBotts thank you, that's really helpful.

Seeing as the wait for titration is so long I'm planning on starting to look into the other strategies first and see how I go.

The guy yesterday recommended getting some ADHD coaching through an Access to Work application. Has anyone successfully done this? Did the coaching help?

I like the Russell Barkley four pillars approach.

Differential Diagnosis
Education
Medication
Accommodations

Differential = find out if something else is causing or exacerbating symptoms, work out what you have alongside.

Accommodations = making changes in your lifestyle and/or living environment, could be physical changes e.g. a different set up or things like new habits and organisation systems.

If you're waiting for diagnosis and it's a huge long wait you can ask for referral from GP for things like blood tests, depression/anxiety screener, online CBT, sleep study if you have symptoms of poor sleep.

If you're starting any accommodations before medication bear in mind that it's common to struggle with maintaining them. Physical things e.g. buy a hook for next to the door for your keys, buy a wireless charger for your phone next to your bed, get a dishwasher/tumble dryer/etc obviously don't need medication to help, but things like new habits and systems can be difficult to maintain, so don't beat yourself up!

Education you can do on your own. I really like Russell Barkley's new youtube channel, ADHD Adults podcast is great (it's UK based with UK humour) How To ADHD. There's a book called "You mean I'm not lazy, stupid or crazy??" which is a great primer. Read MN threads, read the Reddit ADHD pages (the main one has very odd rules, but there's also ADHDwomen, TwoXADHD, ADHDUK, which are all good.)

Often just reading and learning stuff can give you new insight which you can use to change things even without embarking on a specific habit change.

Get on the titration waiting list, but def look into the other stuff before you can access that.

And if you can bear it/maintain the habit, exercise is the second best most effective treatment after medication.

Thank you!

I was diagnosed in September and I've finally been given my appointment for beginning of December for medication! I'm nervous buy definitely feel it's needed.

@BertieBotts you mentioned differential diagnosis… there is this whole other element to my health/wellbeing that is impacting on things and which the ADHD medication unfortunately doesn’t seem to be helping with at all. I have fluctuating CFS (for reasons unknown but I suspect is at least in part due to me being immunocompromised), and sometimes I have periods of weeks or months where I feel exhausted and weak and like I have the flu… and at these times my mood takes a MASSIVE nose dive, it exacerbates all my mental health symptoms and I get very, VERY depressed and distressed. I’m in one of these slumps at the moment. I had hoped the ADHD medication would help lift my mood but it’s just not powerful enough to override what this CFS slump is currently doing to my brain. It feels like my ADHD medication isn’t working at all.

Before this slump, I had been exercising every day, it was making me feel great and I know now how important daily exercise is for my mood - it’s been a revelation! But in a CFS slump I am unable to exercise at all (I tried, but I was too weak and it just made the CFS worse).

Basically, when I’m ill with the CFS, I can’t do any of the normal things that keep my ADHD brain well. Ironic huh. And the meds aren’t working either... I don’t feel like I have any dopamine and I am very brain foggy and depressed right now. I HOPE I can find some workable solution to this because it does really chuck a spanner in the works.

@Pegs11 I also have CFS and I take 20mg of fluoxetine which has really helped my mood. And it's compatible with my ADHD meds (Concerta). Maybe something to consider if you haven't already tried?

@HundredMilesAnHour thank you for replying. I’m currently on 200mg lamotrigine and 20mg amitriptyline daily, and have been for years, but neither seem to help me much in life - and not at all when my CFS plays up, so far as I can tell. Maybe I need to try a different antidepressant - like fluoxetine. How long have you been taking it?