Anyone with a late age ADHD diagnosis? I thought it would finally complete me but I'm as lost as ever

[Fireflies73]

I have felt really flat since my diagnosis and wonder how people with late diagnosis move forward afterwards? Do you just shelve it and carry on regardless? What did you do?

I've struggled with many aspects of my mental and physical health for years, since childhood. I have always felt my brain functions differently from those around me but had to try and accept that it was simply because I am a very anxious, highly sensitive and melancholic type of person with a seemingly poorer mental health than those around me.

Despite decades of counselling sessions, doctors consultations and seeking help for my various anxieties, ocd, over thinking and general exhaustion from my constantly 'on' brain, nothing ever helped ease things for me. I just had to somehow live with it.

But several years ago my dd started sending me clips from people on SM platforms explaining their ADHD traits and she would say 'This is you mum, this is exactly how you are'. I would start watching them and then looking into it a bit more and further still (until it became obsessional) and for the first time things made sense. I felt there were people out there just like me, people who would understand because their brains functioned just like mine.

So I went to the GP and asked for an assessment. She tried putting me off stating the NHS waiting list was very long and prescribed me yet another antidepressant. I walked away totally deflated but then discovered Right to Choose and so went down that rabbit hole path. Due to a total cock up with my surgery where they firstly 'forgot' to send the referral then sent it to the wrong ADHD company, I ended up waiting almost 3 years for my assessment.

Due to the long wait I had talked myself out of the possibility that I may be neurodiverse all along and just someone with mental health issues which will always consume me. However, I did eventually get an assessment in March this year (at the age of 52). The assessor said she was absolutely confident I have inattentive ADHD and scored very highly during the assessment. I came away from the assessment feeling as though everything suddenly made sense in my life and this was the start of the 'new' me but also a sadness that this was never picked despite decades of struggling and asking for help.

However, that euphoria lasted all of a few days. The medication has not helped me at all because the side effects were just too much for me to handle (I have some chronic health issues which were greatly exacerbated by the meds). I now feel as flat as ever and feel that maybe going through the long wait, the high anticipation and the stress of the assessment was probably not worth this feeling of 'What was the point in all of that stress?' which now constantly lives in my head. Also not helped by the fact that the very few people I have confided in regarding my diagnosis have all had this kind of 'Oh god, not another one' eye-roll response (all neurotypical btw).

I don't really know what on earth I was expecting from a diagnosis tbh, I thought it would be revealed as some kind of missing piece of the puzzle that I have been searching for all my life. I still feel very incomplete though, still have no idea why my brain works a certain way when others around me seem to go through life organised, put together, stoic and mentally capable and stable.

Eight months on and I am back to square one. Still ditzy and scatter-brained, still on turbo mode mentally, emotionally and physically and chasing things in life which I know are not going to bring me joy or the peace I so crave. I can't afford any kind of private adhd counselling or acceptance therapy so I just need to carry on as pre-diagnosis I suppose?

I know that I probably need to find acceptance and be kinder to myself but for me ADHD isn't the funny, crazy and kooky thing all those on SM like to make it out. The way my brain is wired has been a real hindrance to me, throughout my life.

If you are late diagnosed what has the diagnosis done for you? Has it changed anything?

im 60 and waited over 2 years for the assessment. I have adhd but another year on waiting list to try medication. I wish I could try now!
im hoping for life changing help but who knows.
I can see that a lot of things in my life have come about because of my ADHD. So in that way I can see how some people think of their neurodivergence as a kind of a super power. Maybe you could think about what you have in your life because of the ADHD - sort of spin it?

@Fireflies73

"Still ditzy and scatter-brained, still on turbo mode mentally" this is your ADHD in all it's glory, it is not a shortcoming nor is it a weakness.

There are so many different formulations for ADHD medications, you just haven't found the one for you that will not adversely impact your co-morbidities.

It is a long road @Fireflies73 but so worth it, in the pursuit of peace.

Go back to your Dr./prescriber, medicating your symptoms are both a life saver and life enhancer.

Wishing you all the best on your journey lovely.

Is ADHD really the cause of your issues?

What type of childhood / parents did you have? Is there any difficulties from the past that you haven't dealt with?

For a long time i wondered if i had autism like my son. I have always had extremely bad anxiety. I was basically mute in secondary school. I talked to a psychologist and worked out my issues really were caused by the fact my parents had their own mental health difficulties and were functioning alcoholics. Once i discussed all these issues with her, it made sense. Gradually, the anxiety lifted and i feel much better.

My brother got a diagnosis of ADHD but i am very sceptical- i can see how he was impacted by my parents but he is completely blind to it. I think he always feels inadequate due to how he was raised and was searching for an answer.

I think we all ‘think differently’ in our own way. There isn't standard ‘normal thinking humans’ who function with no issues - and humans who are a different type, if that makes sense. I know there are people with autism and ADHD. My son has autism. My other children without autism all have their own separate issues, anxieties, problems, talents, strong points etc. There are many people classedas ‘neuro-typical’ who also stuggle.

I do not have a diagnosis, but my sister (diagnosed in her 40s) and my daughter (diagnosed at 12) do. My sister, whilst appreciating the benefits of the meds, choses to use them rarely as she doesn't like the way it changes her. My daughter struggled with the side effects (loss of appetite, dry mouth, headaches, feeling different) but recognises how the meds have helped her academically and in work. Through them, I can see both sides.

I think the disappointment you are feeling comes from diagnosis and medication not being a cure, and perhaps feeling a sense of injustice that you are having to live with a neuro-spicy brain. I would recommend some counselling to help you come to terms with all this, and then perhaps try occasional use of a short-release methylphenidate, which wears off in 4 hours, to help with tasks that particularly need focus (shopping, packing to go away or a trip to the cinema/theatre). Maybe this will make you feel the ADHD journey has been worthwhile.

I think there is a kind of grieving period, of all the things you could have done differently if the support was there. I also felt some imposter syndrome... Am I really ADHD? I don't seem as bad as others, but actually, I was very very good at masking (which is exhausting!)

Maybe some ADHD coaching would be useful?

Thank you, I'll sit down and make a list, see if that helps?

Good luck with the meds, I hope they help you.

Thank you. I do need to look into other medications, I keep putting it off.

@Fireflies73 seems like you need a medication review

DS has tried over 5 different ones (stimulant and non ) to get to something that works well

meds are tricky sadly, it depends what time in the day you take them, what you eat with them - even a bit of fat in the food gets most of them to not work, bit of a sauce with breakfast would negate all drugs for my kid .Weirdest thing is with special egg white protein powder they work a treat!

doctors sadly don’t offer any advice on the above which is just so unhelpful

good adhd med can hit that perfect spot and make you feel calm, satisfied and capable

it’d be good to know which ones you’ve tried and what food you take with

good luck x

I had a lovely childhood. No issues, my parents are still together, now elderly. No abuse, alcoholism, dug taking, fights or arguments. I had a happy relationship with my grandparents as well. I have been this way all of my life, from childhood. Of course it could all be down to a lifelong anxiety issue but it genuinely feels more than that for me. I appreciate that many many people suffer from similar issues but I can not fully articulate how I feel as it's always been with me, I have never felt any other way. I can not see that it would be from many kind of childhood trauma. I would have thought the would have unveiled itself from the many counselling, CBT, EMDR sessions I've had in the past.

I have spent decades in counselling and other therapies to see if I can find something which helps but nothing ever has. I do believe it's down to the ADHD, it the only thing which makes complete sense to me, when nothing else ever has.

So out of curiosity do you feel ADHD doesn't exist? Or is over diagnosed?

Thank you, I will look into trying that.

Yes! Imposter syndrome, that's exactly what I am struggling with right now.

Thank you. I didn't know this, I was prescribed 30mg of Elvanse and just got on with it.

I have to take all meds with foods as I have very bad IBS and everything upsets my digestive system. At my follow up I was told they can cause gut issues or exacerbate existing ones and told to taper off. I haven't taken anything for a few months now.

I tried them at breakfast but would have issues then tried them at dinnertime but found they gave me migraines at night. I just couldn't find that right timing without feeling rough.

I think it does exist but is over diagnosed.

Many people, understandably are looking for some sort of neat explanation as to why they struggle.

Elvanse caused gut and aggression issues to my kid (not really like him)
works great for some but awful for others . I’m surprised they gave this to you given you have IBS. Anything making your gut worse , will 100% worsen your mental heath, there is a proven link between the two

perhaps ask to try out Methylphenidate (different brands deliver the drug in different ways I.e Medikinet , Ritalin XL, Concerta); these shouldn t have so much impact on the gut

you can ask them to try non stimulant as well

good luck x

I strongly suspect I have ADHD - I can't concentrate - I've skim read this thread but got the gist of it - that in itself is a huge indicator. I can't remember the last time I read a book. The signs were always there - as a kid I would get obsessed with things then get bored and move on. Always looking for the next 'high'. Fast-forwarded intro's to songs as I was bored. As an adult, I've found alcohol calms my brain but that has caused liver damage. So to anyone that doubts this is a 'fad', that is as ridiculous as saying someone with a broken leg is delusional and it isn't real.

Gut issues are apparently very common for people with adhd, OP. I don't know why that is.

I think it's difficult when you expect a diagnosis to change everything and to offer some solutions if you then find that all of your struggles are the same as they ever were!

I am unable to take medication for various reasons, and honestly, I'm struggling to manage my symptoms as much as I ever did - actually more than ever, as the menopause seems to have exacerbated them. Knowing that my issues are caused by adhd doesn't actually make the issues go away. However, it does at least help me to understand why I am like I am. And that's helpful when you have spent a lifetime blaming yourself and feeling ashamed of the fact that you just don't seem to be able to manage yourself properly.

For some people, a diagnosis opens the door to medication and the potential for reasonable adjustments in the workplace etc. I don't usually tell people at work that I have it, so this doesn't really apply in my case. Plus I'm lucky enough to have a lot of autonomy in how I work in any case, so I can make my own adjustments!

I think knowing that it's adhd just helps me to understand myself a bit better really. It doesn't make the problems go away, but it does help to explain them. And it also helps to remind me that there are certain advantages that my adhd brain has given me as well - it's easy to focus on tge struggles, as they can be overwhelming and debilitating at times. But there are positives too, which I would not want to go without.

For the time being, I'm working on forgiving myself for not being the perfect version of myself that I want so desperately to be. I am trying to accept that that version of myself will always be out of my reach, but I can still work on being the best possible version of myself in a way that is more achievable. The adhd is a part of who I am, and I'm learning to work with it, rather than trying to fight against it.

Are you medically qualified, and have you specialised in this area? If not, what makes you think that you know better than the doctors that specialise in this field?

Thank you. Tbh, my assessor did warn me that it could cause gut irritation but since I have been in perimenopause (can't take HRT atm) my issues have been so much worse that I was prepared to trial it.

I will contact the company and ask if there are any alternatives like the ones you've suggested. Can I ask what the non-stimulants are?

fab I’m sure they ll sort you out !

non stimulants need to build up in the system (2-4 weeks depending on which one ) but you might feel better straight away. They don’t help so much for focus (perhaps for some ) but more for calmness, planning, weird thoughts

its either guanfacine or Atomoxetine . Latter is stronger but very important to combine with specific low fat high protein food otherwise likely it doesn’t work; it has done wonders for my kid . First one didn’t do much but helped a bit. It’s a massive shame doctors (including ours) don’t advise on what foods help or restrict the meds, as so many people give up on them for such reasons ..

press on them im sure they ll help out x

Very much like me. I can not tell you how many jobs I have had, I start with such gusto then bore so very quickly. I am the same with conversations, I lose interest so very quickly, I know that sounds dreadful and it's 100% me and not them but if the conversation continues for too long I completely zone out and enter my inner world (sorry DH, I am talking about you lol).

And as for alcohol, if I start I won't stop so I have to keep far far away from it. I also have ARFID, lots of issues with food and food obsessions.

Adhd definitely exists, it's the only thing which makes sense to me and explains clearly how I am and how I have always been.

I think for me, the gut issues are down to several factors, hypersensitivity and a very strong gut/brain connection, my ARFID, I don't always have a balance diet and will eat the same things for weeks on end or eat a lot of one thing and also probably an altered gut microbiome (I believe they are finding this connection with neurodiverse people?). Either way it's no fun.

I am the same as you and am finding perimenopause/menopause is greatly affecting my issues.

I definitely need to adjust my mindset to your way of thinking, more accepting. I think it may give me some peace. I just wish people were more open and accepting of the condition, I worry that others think it's a non-condition or greatly exaggerated by some which is why I have been very hesitant to tell too many people.

I tell very few people tbh. There is just too much judgement and they don't need to know imo.

The acceptance thing isn't easy tbh. It's a journey and I still haven't mastered it yet. I still have that thing of telling myself that I just need to pull myself together and sort myself out, stop making excuses etc. But I've had a lifetime of trying and still haven't cracked it, so I'm trying to approach things differently now.

I have a lot of all or nothing thinking. So if I can't live up to the impossibly high standards that I often set myself, I can quickly disintegrate into thinking that there's no point in trying at all. I'm trying to reset my expectations to be more realistic, and to find a different way of navigating through the setbacks.

Have you tried meditation? I'm not very disciplined about it but it does help.

Knowing I have ADHD (diagnosed at 62) has given me permission to forgive myself for some past behaviours which were problematic. I lack the ability to see risk and some behaviours were risky to the point of ridiculousness. I thought I might be bipolar and now the fear of that has been removed - it's ADHD.

ADHD and the ability to see the world differently isn't always a negative thing. I am an author. I can write about the world in ways that make others see it differently (and if I'm hyperfocussed I can write a book in six weeks).

I don't get so wound up when things go wrong now, I try to slow down and think 'your brain is just overwhelmed/not seeing the problem/you are reacting before you think', which helps and I wouldn't have done that before diagnosis.

I opened this with interest expecting that you were late 70s or 80s, and now I’m crabby to be described as “late age” too.

But, yes, it’s been similar for me. On the one hand it’s useful to u destined and give myself grace. But I still have to deal with it.

I have an asd dc with sporadic high needs, that often take the form of intense suicidality. After ruling out Ritalin (heart rate shot up) and vyvanse (vertigo and dizzy spells) I couldn’t handle any more months of side effects of titration on top of handling all the problems of adhd. I need to be competent and functioning to keep my child alive. Right now it feels like I can do that better with unmedicated adhd.

But it feels like life is passing me by. I thought this would be the answer to getting a handle on things. Instead I’m just bumbling along. And if I ever get a chance to focus on myself and find a solution, I’ll be too old to catch up, so late age is exactly right,

OP, I will come back to the post later but I wanted to let you know that you are not alone in suffering from anxiety, I do too and it is linked to ADHD. So don't dismiss ADHD because of your anxiety. I am on Atomoxetine - one of the non-stimulants, and it's really helped.