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!

Can I ask are digestive issues / IBS common with ADHD?

Paddingtonthebear yes I believe so. I have lots of autoimmune issues and IBS. ADHD360 is doing a seminar on ADHD and gut health on Tuesday actually.

It's at work where I need the most help! When I'm medicated I'm much better at organising my workflow, working my way through emails, ticking things off my list. I don't need it on days I'm not in the office.

For those who have used My Pace, I can see from the website that the prescription fee is £35 but what is the cost of the medication?

thanks

Update: I had my appointment today to discuss treatment options. The psychiatrist said because of my PTSD and anxiety, it was best to start with Concerta XL as in her experience it’s less likely to make me anxious/emotional than something like Elvanse.

I’m starting on a low dose (18mg), which she said might not do anything, but it’s best to start low in case of side effects. Will review next week and maybe increase the dose.

Anyone else on Concerta XL?

This popped up on my Instagram regarding Lisdexamfetamine/Elvanse/Vyvanse and it’s really interesting https://www.instagram.com/reel/CxTD5F6MEUU/?igshid=MzRlODBiNWFlZA==

As far as I can tell (and you do have to be so careful with social media algorithms) Dr Perry isn’t a charlatan….

So what I've found with titration is that I wasn't really given much information and I really did make some mistakes at first.

• It takes time for your body to get used to it. That means day 1 will feel different from day 2 which feels different from 2-3 weeks in, which might also feel different from 4-5 weeks in (then it seems to level out). So don't try something for 2 days, proclaim it awful and that you hate it and the side effects are terrible. Unless they are literally dangerous, try to push through at least for a couple of weeks, preferably for at least a month. This does make the titration process very slow.
• It can be really hard for me (I think this is a common ADHD thing) to accurately compare "what I am like right now" with "what I was like before medication" and "what it was like on the other medication" This is basically impossible - ASK PEOPLE AROUND YOU. Your spouse or a colleague (if you trust them enough) or check in with a trusted friend daily and see if they can help you, or even just write a daily diary or complete the ASRS (google ADHD ASRS) before medication, then at the end of the 4 weeks on each dose.
• Messing around with timing also counts as trying something new. Don't keep messing around with things like timing every couple of days. Stick with something for a few weeks.
• If you're going to feed back to your doctor about side effects (definitely yes) remember to explain at what time of day you get the side effects. If it's all day, then it's probably related to the medication. But if the medicine works well in the morning and then you get side effects in the afternoon/evening, that could be rebound, where the medication is leaving your body too quickly and causing a disruption there.
• Similar to point 1, you actually need to start on a low dose anyway and work up. If you went instantly to 70mg (the max dose for many of them) then you're going to get really bad side effects and your body is going to freak out, you'll just have a bad time. You have to start on lower doses and build up so that your body gets used to the medication. This is never really explained!

Also, understand that medication is just going to help remove some of the barriers that are in your way, it doesn't make new habits for you, it doesn't solve all of the unhealthy coping mechanisms you've had for decades. It makes those things easier but you still have to work at them.

It can cause a dry mouth - have water or other drinks available. Sugar-free gum or boiled sweets can also help you produce more saliva naturally which is what my dentist strongly recommends as a lack of saliva can cause more cavities. Not good if you also struggle with brushing.

Eating regularly is also a good idea. As it reduces appetite it can be tempting to go all day without eating but this is not very good for you. If you're on a methylphenidate based medication, it's important to eat breakfast rather than take your tablet on an empty stomach. If you take a multivitamin containing vitamin C, take it in the evening as high doses of vitamin C will counteract most ADHD medication. There is a question about fruit juices here as well but I think this is a theoretical issue - if worried you can just ban fruit juice for 1 hour after medication.

Concerta is an interesting one because rather than being small balls which dissovle at different rates there is like a paste inside the tablet which is released slowly throughout the day, so it's meant to be very smooth with no dips and boosts like the usual extended release medications.

It's not approved for adults where I live but seems to be the go-to option for teenagers.

Diagnosed at 49

Still can't tell what my real me looks like, I've masked all my life and current having an existential debate with myself

My life is is on my phone - Calendar, Outlook (work), Gmail (personal), Teams (work), Alarms, OneNote and my camera (instead of taking notes)

I have whiteboards, an A1 wall planner,, magnet boards and hooks with bulldog clips hanging around me living room

Still forget stuff though

@BertieBotts thank you for the tips! I took my first tablet at 8.30am this morning and haven’t really felt much at all, apart from some very mild nausea (which I could be imagining) and maybe 10% more awake-feeling than I normally am at this time (again, this could be placebo effect). It’s tempting to say, “well this isn’t doing anything so I’ll up the dose tomorrow and see if that does it!” But I know I must be patient… which is difficult for me, haha…

I’ve just posted on an AIBU topic about ADHD and PIP.

I had toyed with PIP and I possibly might get lower rate. One other thing people might find helpful is Access to Work support which I have applied for and been successful - it was surprisingly simple process. It is available to people wanting to work or be supported to stay in work (as long as you’re not a civil servant) mostly the support seems to be coaching specific to your condition(s).

@Gingernaut I’ve always struggled with ‘self’ too. I don’t know what it was like for you, but as a girl/younger woman I was frequently socially rejected and even ostracised, and would wonder what was wrong with me and why people didn’t like me, figuring it must be because they think I’m a complete weirdo. I was very impulsive, hyper, loud and also very inappropriate/tactless. After so much rejection at school I became very quiet, withdrawn and depressed. Things improved as I got older and learned to “behave better” although I would still upset people and lost many friends along the way. Often as a result of me having angry outbursts when I felt wronged. These days I am very, very conscious of my behaviour, and I suppress a LOT, but it is still always an internal battle that leaves me feeling like I’m not altogether human and just not designed to fit into this world. Life, work and other people are just so difficult to navigate. It’s all confusing. I was married, and for the 8 years we were together, my husband would criticise my behaviour a lot, and he had a style that was very belittling and made me feel so ashamed, and that led to me feeling like I just couldn’t be myself around him and I ended up feeling like I’d given up my “self” to appease him. Also the RSD was so bad when he criticised me, I felt like shit. I ended up leaving him because I felt so on edge around him ALL the time, and I couldn’t live like that anymore, I was just a shell. After some time separated, we are now trying to work things out, with the knowledge we have gained in the interim following a lot of self exploring/therapy. But I feel like I’ve got a long way to go before I can trust him, and myself, to be able to manage our relationship and “each other” in a healthy way.

Sorry, that was a bit of a blurb! I guess it’s on my mind at the moment. I’m figuring a lot of stuff out since my diagnosis…

@LittleRedYarny about half of people who have ADHD and who apply for PIP get an award. I am on PIP. I didn’t realise that many of my symptoms were ADHD until my diagnosis. But I really struggle with everyday things. Preparing food, washing and bathing, mixing with others, budgeting etc... I get very overwhelmed by everyday tasks and have task paralysis a lot, and I get very anxious in social situations. I have long (weeks or even months) periods of severe fatigue because I get so exhausted with the chaotic thoughts and stress/anxiety. I also have an inability to pace myself, I don’t recognise when I’m burning out until it’s too late and I totally crash. On top of ADHD, I also have PTSD, GAD and hormonal/immune problems, and they all interact with each other. I don’t know how many of my symptoms are down to ADHD alone, so perhaps if I didn’t also have the other conditions, I wouldn’t be impaired enough to get PIP. It can be hard to separate out the issues and know what is attributable to what. What I do know is that adding trauma on top of my ADHD has made life even more difficult to manage, because I don’t have (and never have had) the emotional tools to process the trauma and regulate the emotions. So whereas before the trauma, I would get very upset and emotional, following the trauma I get very VERY upset and emotional, and am also much more easily triggered into that emotional state. It’s all pretty knackering. Fed up with it! I know the ADHD meds won’t solve all of my problems but I’m hoping they might give me the energy, motivation and cognitive functioning to be able to get started.

Can I ask for a little bit of help/advice please ladies?
I had an assessment with (I think) Psychiatry UK during lockdown. The guy said I met the criteria but I needed to provide evidence that the condition "existed" before the age of 14. School reports, letter from my parent etc. I don't have these things, and would never discuss this with my parents ( who don't believe in MH issues as such.) I therefore didn't take it forward.
I don't know what to do. Start again with another company? I can't face going to the GP. I never go, for any issue. Happy to go private but I've already paid for one assessment and feel guilty about spending the money again. Is this age 14 thing, something that you had to prove too?

Well done on getting PIP, the forms just overwhelm me. I don’t (think) I have any co-morbities with ADHD so probably would struggle to evidence a PIP application.

I think for some ADHD people the perennial tricky bit of ADHD with co-morbidities and what symptoms belong to which condition, not that it’s always helpful to know this when trying to manage/overcome a symptom(s), can make things doubly hard.

I definitely think you’re right the meds don’t fix the problem but give you a bit of a boost to get into a position of maybe getting a bit of a handle on things, I’m hoping my meds in combination with some Access to Work coaching will begin to un-muddle me a bit and help with transitions between work and home life as I’m 90% WFH (a double edged sword!)

I can really sympathise with you on the life/personal management stuff, it’s so hard some days to get yourself out of bed and fed/watered etc let alone contend with a job.

I can be pretty good with some of the life admin stuff (regular hair cuts, washing and blow drying my hair isn’t a problem for some weird reason) but cooking (unless for someone else as well) is an almost impossibility for me, also doesn’t help Elvanse surpresses my appetite! I am seriously thinking of signing up for a breakfast, lunch and dinner meal delivery service to see if it helps/saves me money on unhealthy take always.

All of this is one of the worst aspects of ADHD, the consistent inconsistency of your ability to care for yourself!

I know a friend in a similar position (although she had some school records) got her partner to give an outside perspective that formed part of her diagnostic portfolio. Could that be an option for you, or perhaps another family member?

Thanks for the response. I really just can't face having to ask someone. Is it standard to ask for this information, or do you know if it is just certain clinics?

I think it's standard information as to get a diagnosis they need to confirm you also have the symptom as a child. If it has 'just' been in adulthood, it could be due to something rather than being ADHD hence why they look at the impact on childhood as well.

I got my childhood best friend to answer their questions for me as I didn't want to involve my father (and other family members are all deceased).

My teenage DD has recently been diagnosed and as with others on here, the medication has made a huge difference. The positive impact has made me think about revisiting my own diagnosis, but it looks like that won't be possible if I can't provide evidence from childhood. It's frustrating - I might have to try the blackmarket options!

@HundredMilesAnHour that’s what I did too! My mum was soooo unaware of my ADHD, I masked it very successfully from her (plus she was kind of emotionally absent and not really paying attention), she thinks I was totally normal! But my best childhood friends and their parents (who I was very close to as a kid) have VERY different recollections of me, they remember me much in the same way I remember myself - difficult, hyper, naughty, inappropriate, always pushing boundaries, always being told off… and always troubled and on edge. So I got them to write “testimonials” and gave that to my shrink. She was satisfied that my symptoms started in early childhood.

@Popsy400 see messages above about getting childhood friends to vouch for you!

Thank you, but I don't have any childhood friends now - I'm terrible at keeping in touch with people! I might go back to the clinic and see if they can help at all. Surely it can't be that unusual to have this situation??
It's interesting how many Adult ADHDers appear to have parents (particularly Mothers) who are emotionally distance and lack empathy.

@LittleRedYarny thank you for your reply. Yep, self care has been very inconsistent. As has my performance in my jobs. I’ve lost several jobs because of absolute overwhelm/paralysis and not being able to complete tasks. Of course back then, I didn’t know I had ADHD and neither did my employer, so there was no understanding or support.

@Popsy400 unfortunately I think there does have to be evidence of the condition in childhood to get a diagnosis. But IMO it is worth trying again with your clinic. Perhaps if you can give lots of detail/specific examples of how your condition affected you as a child, they might consider this. I wonder if there is any way they can prescribe in the absence of a formal diagnosis, like, allow you to trial the medication and see if it helps. Probably wishful thinking… but it might be worth asking just in case.

@Popsy400 it may also work in your favour that your daughter has been diagnosed - it is to some extent genetic, as I understand it.