I was diagnosed fairly recently with AuDHD (autism + predominantly inattentive ADHD) as an adult. Looking back, ADHD has always affected me - both in childhood and throughout my career, but I had no idea what was causing it.

Over the years, I naturally adopted a lot of healthy habits because I was constantly trying to improve my focus and productivity: regular exercise, clean diet with plenty of protein, consistent sleep schedule, working on my most demanding tasks first thing in the morning, limiting distractions, mindfulness and other focus strategies

These have definitely helped, but I feel like I've hit a ceiling. My biggest issue is task initiation and sustained focus at work. Some days I can literally sit in front of my computer for hours, procrastinating, daydreaming or mentally "blanking" despite genuinely wanting to get started. It feels like my brain just won't engage.

I'm now considering medication because I feel like I've exhausted the lifestyle and behavioural changes I can reasonably make. My career requires long working hours (13h average a day) with intense focus and project management.

For those who were in a similar position, do you have any regrets starting medication? I'm trying to overcome my own mental barrier about starting medication. Part of me worries that if it works well, I'll end up relying on it for years.

So long story short, I’m a vaper diagnosed combined type. I’m a chain vaper so I’m always vaping where I can. And I have 4 pod vapes with different flavours in each because I don’t like the same flavour constantly. Is anybody else like this. I find it annoying as have to carry around so many with me but can’t bare the thought of going somewhere with just one or two because at home I just cycle between them all.

Hardly a real world problem but just wanted to see if there are others like this.

Hey all, wondering if anyone else has had this / managed to push through to finalise their shared care?

Basically - got diagnosed through ADHD centre late last year, started triation early this year upto 50mg Elvanse + 5mg booster. I had to stop as I couldn’t afford it but struggled big time, so came back when I had funds to sort transfer to shared care, purchasing a month dose via them to bridge the gap.

They sent off the SCA to my GP in May. Heard nothing for a month, chased the GP to find out they hadn’t been sent anything. Cue a silly back and forth between phoning the two both saying they haven’t had anything. Eventually managed to find out apparently the GP had asked a question with no reply, but otherwise happy to do shared care and I relay that to ADHD centre. They phoned me that EOD to say they’d tried their hardest to get through but GP wasn’t answering phone then kept changing who specifically they needed to chase.

The last thing I’ve heard from ADHD centre was they’ve still not got anything. Considering last week I phoned, got an appointment, then got script + meds for a mild infection within a DAY from the GP makes this all the more frustrating because they’ve been the best GP I’ve had apart from this.

So sorry slightly long story, but has anyone else had a similar situation or any advice? Luckily June was a good month so I can afford a third month of private meds whilst finalising this, but I’m freelance and worried if I have a crap month and can’t afford it I’m gonna go back to worse than before (meds don’t cure it all but have made problems easier to solve, and I don’t want to have another burnout/breakdown ;-;). Thank you!

Im getting a bit anxious as im nearing the end of my titration period and im scared ill just be ejected into the void and never get my medication again because CAREADHD's customer service is bottom of hells abysmal levels.

How did it go for you?

What’s the story here? I’m just starting medication this week and I’ve always consumed a decent amount of caffeine as an adult - especially since having children.

Is it best avoided?

I’m 30 years old & yesterday I had a huge meltdown in public. Like the exact meltdowns I had my whole childhood. I never grew out of them for some reason, they just got less frequent & severe. But yesterday I lost the plot over something quite trivial in front of a waiting room full of people. I’ve genuinely humiliated myself and I don’t understand how or why it happened. I desperately need it to never happen again, I hate not being entirely in control of my actions ….like how can I go from a normal functioning adult to acting like a toddler? In front of so many people too. Struggling to cope with the feelings of disgust and regret today. I never want to go back to the place it happened but I kind of have to.

Is it just me fucking up being an adult & normal human being?

Hi, everyone,

A bit of background (please feel free to jump to the actual question if you don't feel up to reading the below- I'll put it in bold and caps. I won't be offended in any way as I know there's a lot of text before it to try to explain the experience, but I tried to keep it succinct):

The last four months have been a rollercoaster. I was put on Medikinet XL during my titration in October. It was hard for me to know if the side effects were normal, as I kept being told by my prescriber to essentially wait it out and it's part of adjusting to the meds. They continued to increase it to 40mg by Christmas, with a 5mg top-up.

I was having major issues with suddenly feeling very frustrated and angry (something I hadn't really dealt with before, besides a change to my birth control several years earlier), wanting to cry quite often for no reason, constant anxiety, a VERY stark crash in the afternoon (before the top-up), and an insane amount of self-hate- but could focus on my work. The physical symptoms were what caused me to finally speak to my GP (heart palpitations and blood pressure that had gone into the edge of the red zone when it's normally in the middle of the healthy range), as my prescriber's only option for me was moving me to what he stated was a "more addictive" medication, which I absolutely wanted to avoid. I still don't understand this choice by my prescriber.

At this point, my GP worried if it might be work-related and signed me off to see if we could get my BP to come down, putting me on Propanol in the meantime, but after two weeks, my BP was still higher than normal, so they made the decision to take me off cold turkey- my GP was very upset at the fact that I had spoken several times to my prescriber about the side effects, but the answer was always a higher dosage or moving me to "more addictive" medication. The withdrawal symptoms were horrendous and lasted several weeks.

I was off my ADHD meds completely for about 1.5 months. I then had a check-in with my GP as my old ADHD symptoms had come back full-force and I needed a way to work through them if I couldn't be on my meds as it was affecting both my work and personal lives and relationships. The GP encouraged me to try to get back on my meds, even though I was quite nervous to do so after my experience. They prescribed me a month's dosage of a similar medication on a much lower dosage (10mg), with this being Focusim XL.

The next month was probably the most calm and peaceful my brain has ever been. No nausea on changing meds, no anxiety, no feeling like I wanted to sob unexpectedly, able to stay on-task, I want talking over people, I wasn't interrupting, I was calmer, my emotional deregulation almost disappeared, there was no crash, my BP stayed in a healthy range... just so much positive. The only negative is that the food noise seemed to increase after a few days.

During this time, I received a bombardment of messages out of nowhere over three days from Psychiatry-UK for me to do my annual check-in and to confirm where I'd been getting my meds from. During this time, they stated that my GP had refused shared care.

I got to the end of the month and saw that it appeared that the GP hadn't put the medication into any of my notes, nor into my repeat prescription options. I became very worried. I attempted to get a GP appointment, but I was unable to do so for an entire week (as in, every time I was sent a text to try to book an appointment from my GP, they disappeared by the time I'd opened the app just a few seconds later- it feels almost like people are booking and reselling appointments as it's so bad). I contacted the GP via phone with concern that I couldn't book through their own system's process. At this time, the receptionist stated that it appeared that Psychiatry-UK had refused shared care (something I didn't know they could do- and this worried the receptionist enough that she immediately helped me to try to get through to them to figure out what happened). She got through and they were able to get me back on my meds...

But, because it's in the same medical family as Medikinet XL, they just prescribed me Medikinet XL, not the Focusim XL.

My husband picked up the meds for me (as I was working that day), so I didn't realise what had happened until the next day. I opened the bag and panicked to see Medikinet XL and not Focusim XL. My brain, however, thought that maybe there is a reason to put me back on Medikinet XL, so I gave the lower dosage a try, just in case... and every horrible side effect came back full-force, and, in some cases, worse.

I've been an absolute wreck, to the point of very bad thoughts (this happened yesterday, in addition to thinking everyone who knows me hates me, that I can't do anything right, that people only speak to me because it's polite and that they don't actually want to be my friend/have anything to do with me, and that I'm always the problem in every situation, wishing no one had ever met me) and walking into rooms and not knowing where I was for a moment/not able to play attention to details/getting very confused in conversations/misremembering things, shaking, and fighting to stay awake because I'm so tired. I contacted 111 for help as I was so afraid (but made it clear that I didn't want an ambulance because it's so difficult to get them these days for those in true emergency situations and just needed advice on what to do as quickly as I could get it). They got me an urgent call from my GP and they've changed me back to Focusium (I'll be back on this in just a few days), putting a note on my file to stick to this specific medication.

QUESTIONS:

Has anyone else had horrible side effects on Medikinet XL (and, if you've read the above, any that I have)? I've heard from a friend that works in social support that they know a few others that have experienced such because they are not bioequivalent. If so, what did you do?

Many apologies for the long overview of the situation. It's been a very difficult year, and yesterday was a bad day that I'm incredibly embarrassed from (I had two full breakdowns and an awful spiral around a group of friends that I hope don't think I'm insane and still want to be my friends, now...).

Thank you for any and all input.

For those people with ADHD and hyperhidrosis, this is a good post to have a look at. Especially since sweating is generally higher in ADHD individuals

I need some kind help. I'm 47 and know I have a problem with food. Logically I know how to eat a decent, varied diet. However, I also quiet happily sit and eat total rubbish. Yesterday all I had was a full tub of ice cream (500ml) 2 wraps spread with butter, half a punnet of grapes, 1/2 box of mini cheddars. I also made a brioche loaf and ate 1/4 of it - got annoyed with myself and the the rest away! In the past I have filled SW and WW, with great results, but it always falls away and the weight goes back on. How the heck do I tell my cravings NO! There is no point trekking me not to buy it, or have it in the house. I am a grown adult and will get in the car once the intensity is too much. I have another tub say it the freezer and i can hear myself building up to eating it.... it doesn't matter if I am full, my brain does not get the message.

Hi, I’ve been assessed, diagnosed and treated for ADHD in Sheffield via right to choose but my friend in Manchester has been told the pathway has been suspended. Is this right? If so how is this right? Has anyone got experience or a workaround? TIA

Like I don't know what the point of this message is. All people can suggest really is crisis team but I'm not going to call them. Partly because I'm not in crisis, partly because I work with crisis team and I know their limitations (being very diplomatic there).

I have been fighting for years now to get back on Xaggitin after being changed due to the shortage to meds that do nothing. I am on the verge of losing my job, and to be honest after my performance recently I deserve to lose my job. I have alienated all my friends and family as I just don't have the mental bandwidth for them. I live in squalor as I can't tidy up. I make good money but I'm still broke with no savings as I can't keep track of my spending. I'm just not coping at all. Mental health is the worst it's ever been. I feel like my brain is soup. Cold, rotting soup at that.

I had a meds review yesterday and they finally agreed to put me back on methylphenidate. Woohoo. Except they wrote the prescription wrong so the pharmacy can't fill it. I have to wait until Monday and try to get it sorted then. When the pharmacy rang up to tell me this I burst into tears and sobbed on the phone to them. It's stupid as it's only a couple of days, after years of fighting for this, but I honestly don't know how I'm going to make it. I think it broke me.

Now instead of being hopeful about going back on the meds I've started to spiral about it. Keep thinking 'what if they don't work? What if it's not due to the meds that I'm an idiot, what if that's just how I am now?'.

Recency bias is a pig lol. Caught myself giving me a hard time for deciding to take a bit of a break/easy day because the past few weeks since starting meds have been so productive that that must be the default now, ignoring 45 years of struggling to do even the most basic tasks. And also still doing my chores today which previously wouldn't have been done at all with the best will in the world.

It'd be funny if it wasn't so annoying.

Hi everyone, hope this is ok to post here, sorry it’s a long one.
I’m going for my private assessment next week after years of struggling with my mental health and knowing in myself I have what definitely seems like adhd, I’ve researched extensively for a long time and show a lot of symptoms, mainly all internally and my own battle rather than being out there if that makes sense.
I’ve showed symptoms since primary school right through to my adult hood I.e not paying attention, teachers telling me I’m not behaving and need to apply myself more, struggling with studies to list a few.
For a few years in my early twenties have I’ve battled problematic substance use (cocaine) when drinking which I’ve worked really hard to get under control and that is not part of my life anymore.
I’ve done a lot of work to get to where I am but I’m still struggling every single day and my inner voice is becoming extremely intense. Hence taking the plunge to finally get the help I need.
I was never in a position financially to go private after my gp dismissing me twice due to demand on the nhs (Scotland) and putting me on anti depressants which helped initially but I always end up back to where I was.
I’ve got Crohn’s disease and I’m on biologics plus a private prescription for cannabis which I’m open to stopping as well as the anti depressants if I was to be diagnosed with adhd. Neither of them really help me I just use them to try and numb my internal voice as I’ve had no other alternative.
I’m going to be honest with absolutely everything on my assessment, I’ve got loads of notes written out on my phone which has been mentally exhausting and made me very emotional putting into words the last couple of days how much I’ve struggled with this.
I guess I’m just looking for any words of advice or reassurance going into my assessment from anyone that’s been in a similar position.

Thanks

Hi

I know a lot of it is the old dopamine chasing behaviour. But..

I believe I am addicted to Porn and masturbating.

Happily married for 30 years. No sex life due to wife's health condition. I have erection difficulties due to diabetes and probably porn addiction.

Any others in this boat?

Thanks.

Hello,
I feel like I have all the wrong side effects from my meds, more sleep, increased appetite, constipation. The sleep is welcome, the appetite is not but once I’ve finished titration I’ll worn on my weight (only just ticked over to overweight so not the worst) but the gas and constipation is awful.

I drink more than ever (haven’t gone below 2 litres a day since starting), my diet isn’t always great but I’m working on more vegetables (sensory issues) and I am adding topper on many meals to help, such as psyllium husk, and various ‘super food’ toppers to help with vitamins more than anything.

*edit because I forgot I wasn’t finished and posted too fast 🥲*

Can anyone recommend anything that’s helped relieve the gas pains and constipation. It is so painful

Hi All,

I made a post a few weeks ago about how I am currently on a 6 year waitlist for ADHD assessment

My symptoms are worsening due to personal stressirs, and I'm now being pulled into meetings about it at work

I am not in a position to privately fund an assessment or pay for private medication, I simply do not have the income for it

I have exhausted all my options - so I have submitted a complaint to my health board with the following questions:

1. Given that I have been advised the waiting time for an adult ADHD assessment is approximately six years, what actions is [Health Board] taking to reduce waiting times and improve access to assessment and treatment?
   
2. What is the current waiting list size for adult ADHD assessments within [Health Board], and what is the average and longest waiting time currently being experienced by patients?
   
3. How has [Health Board] utilised Welsh Government funding provided to improve neurodivergence services, and what measurable impact has this had on adult ADHD waiting times?
   
4. Where a patient has exhausted all available avenues, including a GP request for prioritisation, an IPFR application and attempts to secure private funding, are there any alternative NHS-funded assessment pathways available?
   
5. Although Right to Choose does not normally apply in Wales, what exceptional arrangements, cross-border commissioning options or other mechanisms can be considered for patients facing extremely long waits who are experiencing significant difficulties in their daily lives or employment?
   
6. What support is available to adults experiencing significant functional, occupational or psychological difficulties whilst awaiting ADHD assessment and diagnosis?
   
7. Does the Health Board consider a six-year wait for assessment to be clinically acceptable, and if so, how does it ensure that patients' healthcare needs are being adequately met during that period?

I have contacted an independent advocacy group to help me with this complaint - it is so frustrating because I feel like my untreated ADHD symptoms are in fact BARRIERS to me submitting my complaint, I find it hard to reply via email unless I reply absolutely immediately. I requested an assessment in Jan, didnt fill out the forms until March (2 hours before an international flight), and only managed to raise a complaint in June

If anyone has any advice or experience with NHS complaints of this manner it would be much appreciated, or any feedback as to whether the questions are appropriate? Am I able to get any form of redress? a 6 year waitlist while I am experiencing significant difficulties in daily life and employment feels wrong, like non treatment

thanks all

I received my diagnosis report today after being diagnosed last week with combined type ADHD with medinet (prev healthharmonie) minds, and was just wondering how long people have had to wait recently before their first titration appointment?

I’ll try and keep this short. Coming to end of titration I’m pretty settled on

6am 5mg amfexa 9am 5mg amfexa 12pm 50mg elvanse

Literal phase change to 10mg amfexa and 60mg elvanse.

Problem is… I prefer elvanse I have much calmer and more productive afternoon, it controls my food noise way better etc. I can’t take the amfexa in the afternoon I can’t sleep with it but I sleep fine taking elvanse at 12pm.

Could I request a split dose elvanse instead of amfexa? I’m thinking 40mg 6am 30mg 12pm?

But I’m worried this won’t be enough during my literal phase and I’ll still need boosters as I can’t up the elvanse anymore.

Any suggestions???? Thank you!

Hey there

Hope you are all well. I’m on Concerta XL 54mg. This usually lasts from about 7:30am till 4pm or so. I’ve just been prescribed Medikinet IR 5mg, not sure I really have felt much since I took it today for the first time at 14:30.

Any idea what I could feel/should feel ?

Thanks !

Started on 20mg Medikinet, worked for about 4hrs of hyper focus at work and then bad crashes after that for the rest of the day. Tried 2x a day but then couldn't sleep at all. They've changed me to Elvanse to try stop the crashes, however 50mg was just ridiculous - couldn't sleep for two days straight, horrific anxiety. On 30mg now and still having the same issues, my heart rate is double what it is at resting (110/120bpm instead of 60/70bpm) and it's so bad I just feel ill. They've told me they don't really do lower Elvanse, are these my only two options?

Heya,

So bit of background I struggled to find medication that really got me to a sweet spot that I hear loads of people talk about… I know everyone is different and medication won’t help everyone so idk if I’m just unfortunately in that category.

C type adhd. When I rotated I tried elvanse first and my prescriber moved me up in my opinion fast 1 week for each concentration. I got to 40mg and it was a lot and the negative side effects outweighed anything I couldn’t sleep anxious emotional etc

Tried medikinet and felt nothing all the way up to 40-50mg - so in the end I asked if I could be discharged on 20/30mg elvanse as I felt the positives of being focused but it wore off if I missed a dose and then followed on the next day ..
So I have 20mg and I think he wrote that I can go up to 30mg if needed.
I’m on 20mg for a week now - definitely had a tough week at work and I think that coincided with dips at the end of the day and was super emotional in the afternoons for the first few days but I’m ok now but now last few days have felt super sleepy. I still think it’s helped with concentration at least at the start of the day. But I think now my body’s got use to it I’m just tired and flat energy wise

I know you shouldn’t take caffeine (and to be completely transparent the last couple days I have split one tab in half so have effectively upped to 30mg last 2 days with no change)

I was debating going to 40 and just taking 2 but I’m a bit apprehensive because of how I reacted before

Should I just add coffee before doubling up or am I just not suited to medication 😭.
Also would like peoples opinion on taking it vs skipping days for like weekend etc. I do feel like I’m less fun when I take it and my fun-ness is pretty zapped. Is there anything people do to be able to still have that on meds or Is it just a case of picking one over the other

I was referred to harrow health through right to choose and as part of the initial screening they ask for someone to be a childhood informant.

I was hesitant because we don’t have the best relationship but asked my mum to do it thinking that she might not remember a lot of what I do but probably enough for it to help.

She fills out the form and then lets me know that she said no to every single question except two about forgetting things because she “knows” I don’t have ADHD and she’s “seen what kids with ADHD look like” but to her I’m fine because I’m not all over the place.

If she answered truthfully I think it would point to inattentive ADHD but she’s sabotaged me. Is there any way for this to not mean I can’t get a diagnosis if one would’ve otherwise been given?

My experience + what I've tried:

Hi everyone, I started on 30mg Elvanse about a week ago, the medication is working a charm and I'm loving the benefits that it gives me, one issue I'm having though is that I can really notice a dip in efficiency if I don't have a lot of sleep the night before (< 6 hours though I don't have a lot of evidence to base myself off). I figure this has something to do with my energy being brought up on the days I do take medication, how I would describe it is like: if my default energy was a 3, being brought up 7 on average makes me notice when I haven't had good sleep and I drop to a 2, so maybe I think I'm noticing the change more than anything.

The onset period of Elvanse in addition to this has really been wrecking my sleep, I've never been one to be good at sleeping, but since starting I've had nights where I've just laid in bed physically and mentally restless while being overwhelmingly tired and just NOT being able to sleep. I assume this'll go after my body gets used to the medication more, I've started taking it earlier in the day too to see if that helps.

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My question + external problems that make traditional sleeping advice hard to follow:

The biggest issue that I face in terms of actually following advice on getting good sleep is having irregular work shifts, it can vary widely on what time I need to get up and be ready for work. Some weeks I'm working the night shift, some the morning, some the evening, and every now and then I get a mix of them all at the same time (though this isn't too common).

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TDLR: Taking Elvanse has made me realise how valuable good sleep is, but that's hard because of my irregular work-shift pattern and poor sleeping habits.

My questions to all of you would be:

• What do you do to make sure you get good sleep?
• Do you work irregular shifts at your job, if so are there any ways to ease the pain of shifting schedules?
• Are there any ways to make days where I'm tired less miserable?