I (45M) got a diagnosis from Clinical Partners back in March, and was due to start titration a few weeks ago. On my first titration appointment they asked if I have any other prescriptions or using any other medication. I mentioned I have a medical cannabis prescription which has been very helpful for me in recent years to stop racing thoughts and help with the relating anxiety. It's actually massively beneficial to me. Despite having mentioned this in my original assessment I wasn't told that it could cause problems. Well it has caused problems, turns out Clinical Partners have a policy that I need to be discharged from the MC clinic before starting titration. It felt like a right punch in the gut to be told that during my first titration appointment when I'd waited so long. Now I have to choose between something that I know is very helpful to me, and something which I hope is helpful but isn't guaranteed. I want both options!

Despite having asked for some clarification on the reasons for this policy they haven't really said anything other it's the policy. No possibility of agreeing that I don't use ADHD meds and MC concurrently, or only on days when not using ADHD meds, or just in the evening when meds wear off, or agreeing to a period of abstinence without such lasting consequences that being discharged could result in. No discussion possible as it's policy. Fine.

I don't use the cannabis that much but it's very helpful when needed and I'm not willing to jump through that hoop and take such a final and lasting action as being discharged from the MC clinic and losing access to something I know helps me, to try ADHD medication which is far from guaranteed to be a success, as we all know. I'll obviously lose legal protection too. I just want to be able to be involved in a decision around my healthcare, be able to discuss options and implications, not just have a policy applied to me.

I can't find any NHS or NICE guidelines saying that this kind of policy is required. I've emailed a couple of other clinics asking for their policy and one replied saying they handle it per patient and don't have a blanket ban like Clinical Partners do. I think I'm going to change to another ADHD clinic.

So I thought I'd ask here does anyone else have a MC prescription, does your ADHD clinic know, are they OK with it, how do they handle it, and if so, which adhd clinic are you with?

Edit... I don't actually any intention of using MC and adhd meds at the same time.

Noodle???!

Just joined the Reddit community a few moments ago! Hello all.

I'm so sorry if this is maybe one of the most over-posted questions in the community, but I've started on Elvanse (30mg) today and wanted to check a few things.

I've put the questions first, and then context of my first days experience afterwards (to save you needed to read the boring bit if you don't want to!)

Questions to the group :

- I've been told the medication is supposed to calm you down and help you focus, it feels like the opposite has happened to me. Is this a normal response for day one or was my diagnosis perhaps wrong and I don't have ADHD, and this is how non ADHD people react to the medication?

- Part of me enjoys the feeling from today, part of me really hates it.  I'm scared that if I carry on, the good elements and benefits will reduce over time and I won't feel the same buzz or be as productive, but on the flip side I'm also worried it might stay like this?

- Please tell me I won't need to wee this often forever?! 

- I've been told not to drink alcohol on these, is that true or is it actually fine and everyone does it, just not something the medical professionals advise on?

Overall experience from day one:

- my body has actually got up to do things! An entire wardrobe clear out, gutted the dreaded 'underneath the bed', cleared out old toiletries. Super productive and super active but annoyingly it was all the wrong things and I didn't tick off anything that I actually needed to do on my list today.

- sticking with tasks a lot longer , or at least coming back to them. It felt like as soon as I picked something up I started a new task, and then mid way through that task I started something else and so on. But I had a desire to do things properly rather than the minimal possible effort.

- a little jittery and flittery in my chest 

- My GOD I have never wee'd so many times in my life!!!

- I usually hate noises and distractions but I needed music constantly today to set a rhythm and pace and to keep me going.

- To start with I was waiting for it to kick in so thought I'd take it easy while I assessed how I felt. Before I knew it I'd wasted 3 hours hyper invested in a mobile game and passed about 100 levels, and then realised I needed to do things. I suspect this was some of the extra focus, but unfortunately on something unproductive.

Thanks so much in advanced!

Does anyone else struggle with reading comprehension? I can read and spell pretty well. But find it diffuclt to comprehend what im reading. Ive got ADHD combined type wondering if anyone has improved on this?

Hi all

May be TMI - but have found elvanse has made me extremely hyper sexual, like some days i'm like a ravaging dog on heat.

Been on elvanse around 5 months now

Is this normal/expected? Is it just me getting used to actually having dopamine?

And my brain can’t stop changing it to “Spaghatta Nadle!” from hyperbole and a half 😂

https://hyperboleandahalf.blogspot.com/2010/02/spaghatta-nadle.html?m=1

With all the news about diagnosis, which is highly invalidating in many respects, it would be interesting to see how people received their diagnosis.

Are there actually many who have been diagnosed directly by an NHS service or are the majority having to battle through RTC and private companies.

Comments welcome about how the service sits and the quality of ongoing care if under an NHS service.

Dear Audience Member

Thank you for contacting us about our coverage of the independent review into mental health conditions, ADHD and autism in England, commissioned by former Health Secretary Wes Streeting and chaired by Professor Peter Fonagy.

We received complaints about our article titled“ADHD and autism at risk of over-diagnosis, says government review” and some other readers were unhappy about the live page titled: “ Young people describe 'unbearable' wait times after review of mental ill health, ADHD and autism support”.

There were three online articles on the day the report was published. The original story titled “ADHD and autism at risk of over-diagnosis, says government review” was published before the live page launched. The live page titled “ Young people describe 'unbearable' wait times after review of mental ill health, ADHD and autism support ” and the explainer titled “Autism, ADHD and mental health review: What you need to know”.

Some readers suggested that our reporting contradicted remarks made by Professor Fonagy on BBC Radio 4's ‘Today’ programme. In that interview, Prof Fonagy said there was no "snowflake generation" and that rising levels of mental ill health among young people reflected genuine distress and difficulties. Those comments were directed at suggestions that mental health conditions were simply being over-diagnosed. They were not specifically about ADHD or autism.

Other readers felt the headline gave the impression that the review found ADHD and autism were being over-diagnosed, whereas the review said it could not conclude that over-diagnosis was “occurring at scale”. Paragraph 33 of the executive summary states that: "...we cannot conclude that overdiagnosis is occurring at scale..." However, the same paragraph goes on to state: "...if present trends continue we are clearly entering a phase in which the balance of risks is changing... towards an increased risk of misdiagnosis and overdiagnosis..."

Our reporting reflected both points. The headline stated that ADHD and autism were "at risk of over-diagnosis". It did not state that these conditions were being over-diagnosed.

The initial article explained that: "It said there was a risk society was now moving from an era of under-diagnosis to over-diagnosis or mis-diagnosis..." and immediately went on to note that: "it was not possible to be absolutely certain or conclude over-diagnosis was currently occurring at scale".

Being unable to conclude that over-diagnosis is occurring at scale is not the same as ruling out that possibility.

As noted, the original article was only one part of our coverage that day. It was superseded early in the day by a live page which carried extensive reporting on the review's findings, including the rise in mental ill health among young people, lengthy waiting times for diagnosis and support, interviews with experts, as well as personal experiences of people affected by ADHD, autism and mental health difficulties. The later explainer article also included Prof Fonagy's comments and further references to the report's caveats.

The review covered a broad range of issues. Whilst some readers disagreed with the headline of the original article, our reporting sought to reflect the report’s findings across a range of articles. We are satisfied that the headline accurately reflected the review's conclusion that there was an increasing “risk” of over-diagnosis, whilst the accompanying coverage made clear that the review did not conclude over-diagnosis was “occurring at scale”.

We would like to thank you again for contacting us to make your views known. All feedback from readers is appreciated and shared with senior editors so that they are aware of audience concerns.

In closing, if you’d like to understand more about how your complaint is handled at the BBC, you might find it helpful to watch this short film on the BBC Complaints website about how the BBC responds to your feedback. It explains the BBC’s process for responding to complaints, what to do if you aren’t happy with your response.

‐-------------------------

My main point in the complaint was the BBC's assertion that:

"The review - led by leading doctors in the field - was ordered 10 months ago by Wes Streeting after the then-health secretary claimed in an interview that young people were over-diagnosed"

But since the said review found no evidence of overdiagnosis, why wasn't this fact reflected in their headlines?

The Department for Health and Social Care (DHSC) has asked the Care Quality Commission (CQC) to regulate all diagnostic assessments for autism and ADHD, once new regulations are in place.

“This new responsibility will increase the scope of our regulation, and most importantly, it will close a significant gap in our oversight, meaning that people receiving these diagnoses can have far greater confidence in the service they’re receiving,” said CQC’s interim chief inspector of mental health care Adrian James. 

At the moment, the CQC regulates services which offer both diagnosis and treatment of ADHD and autism, but current legislation does not allow the commission to regulate services which only offer diagnosis and not treatment. 

Full article: https://healthcaretoday.com/article/cqc-to-regulate-autism-and-adhd-diagnostic-assessments

Well, yes I did. But I don’t know why 😅 and I don’t know how to handle it. I struggle with rejection sensitivity and it’s through the roof right now.

Basically, I was still on probation and everything is going well. It’s a small org and there’s been a lot of strategical changes in my short time there. I was a one-person team and my results really spoke for themself. My manager only ever spoke highly of me and I never had a proper 1:1 where I was provided any feedback about areas of improvement.

Last week, my manager made a comment about senior team wanting to see more productivity from me. I’ve been there almost 5 months and I only just received a work laptop Monday and got fired Tuesday btw! 😅

Anyway got a call out of nowhere. I just picked up and it was my manager saying they’re ending my probation and I can log off. I obviously asked what had happened and was simply told “I’ve been told to say that we will not be providing feedback and there’s no further discussion. It’s a done decision.” I did ask if it was a redundancy and was told explicitly no. Was it my performance? No, we’re simply ending your contract.

VERY CONFUSING…

And then my manager (who is in the senior team fyi) said she loved me to bits and thinks I’m fabulous.

so bloody weird. So now back on the job hunt while juggling RSD and a horrific job market that does not favour the disabled

I am F34. I was diagnosed with combined type ADHD and autism 3 years ago, been on medication for 18 months which really helps. I have built quite a good career for myself over the years, I now work in an operations management role in tech. I’ve been with this company 3 years.

There’s been a lot of change at my company. A year ago we went through a merger, which has brought a whole host of difficulties with it. I have been moved into a team which was under the other company originally, with a new manager. I’ve felt quite positive throughout the difficulties and just cracked on and took the step up in ownership as an opportunity, but things seem to have come to a head in the last couple of months.

My manager is under an extreme amount of pressure, she is having to prove herself, and to be honest I don’t think she’s at the level required for the role she is in. She’s nice enough to get along with, but can be very argumentative if you disagree with her. She’s rubbing stakeholders up the wrong way and putting the pressure that’s on her, onto us in her team.

The things I am being asked to do and resolve are well above my pay grade. I’m sick of being told everything is a development opportunity but never getting the salary increase or formal recognition for doing things I should not be doing. It’s now impacting my health, both physical and mental.

I’m going through investigations for suspected cancer, I have several chronic conditions which are being impacted by the stress and causing flare ups of systems. I have unwell family members. I don’t feel like I can cope with this alongside the pressure I’m at with work.

Every day I am getting colleagues shout and swear because they have to follow processes, people kicking off about me enforcing them. The culture is rotten and toxic and has gotten worse since the merger. Everyone is under pressure and the company has made loads of redundancies.

I need to go off sick. I am at burn out. But I am terrified this will mark me as not resilient enough for the industry or company and put a target on my back for redundancies. My role itself is pretty safe because I am the only person in the company who does or knows my specific role and it is very much needed, but also the company does just pay off people they don’t want to keep with settlements so they can’t take legal action.

What do I do? Do I reduce my hours? Go off sick and hope I am not let go? Or power through my AuDHD burnout and physical health issues and hope I don’t snap? Would really appreciate some guidance!

My gp accepted shared care, but they’ve began to prescribe me with xenidate XL 27mg , but I was on Affenid XL 27mg with my specialist titration.

I researched and xenidate has a different release mechanism to Affenid; one is a wax based release and the Affenid is osmosis.

I’ve read that you can get wildly different reactions to differing release mechanisms and I’ve gotten used to Affenid and apparently it’s bad to change brands. I’ve been through so many brands during titration and I definitely noticed the differences when testing them.

I asked my GP and they said they can only get xenidate via NHS and they’re ‘bioequivalent’ but thats not the issue, I’m concerned about the branding and releasing.
How can I get them to prescribe me my original brand? Has anyone else had this issue?

As the above says, I’ve just been diagnosed with inattentive adhd. I also have an autism assessment next month. I don’t think I’m autistic, but the clinician says there are traits and so I should get assessed. I’m in a bit of a mess today. Yesterday my feelings gradually developed into feeling I was a fraud/imposter syndrome, who had fooled the clinician, and that it couldn’t be right. Today I still feel some of that but I’m just feeling unwell and upset. I live on my own so have no one to talk to (i have chatted to my older brother and a couple of friends about it) and there seem to be no ADHD telephone helplines or similar, I’m a bit all over the place and feel torn between disbelief and the horrible familiarity of some of the stuff I’m reading, also the realisation that I probably ‘used’ my anxiety to drive my academic career (lifelong hyper focus on History) along until menopause meant that I couldn’t do it anymore and I stopped (I retired early September). Are these confused feelings and imposter syndrome normal? Especially with late diagnosis.

Hi everyone,

I’ve been struggling with my ADHD medication. I take 50 mg elvanse/ vyvanse, but it wears off way too quickly (after only 3 to 4 hours), followed by a heavy crash and fatigue. To get through the day, I was using two 5 mg dexamphetamine boosters in the afternoon. However, taking a total of 50 mg + 5 mg + 5 mg caused awful heart palpitations, chest tightness, and a racing heart. Going up to 60 mg didn't make it last much longer and gave me the side effects also.

After discussing this with my psychiatrist, I got some blood work done. The results showed a high turnover of young red blood cells (reticulocytes 114). Because Elvanse is enzymatically split inside red blood cells to become active, this rapid turnover might've caused my body to process it way too fast, creating a steep peak and a sudden crash. The tests also showed low iron saturation and a vitamin D deficiency, which doesn't help the situation.

With my psychiatrist we decided that I would now test a few specific supplements to see if they help smooth out the Elvanse curve, extend its duration, and hopefully prevent those crashes and palpitations.

The supplements I will be using for this are:

• Vitamin D3 + Vitamin K2 to fix my deficiency and support muscle/nerve balance.
• Lactoferrine (taken in the evening with iron) to improve my iron saturation and oxygen transport.
• Phosphatidylcholine to support red blood cell membranes and brain fog.
• Electrolytes (not the kind with acid that I was taking) to keep my hydration stable during the day without clearing out my medication too fast.

I will be testing this out over the next few weeks. Does anyone here recognize the fast metabolizing of elvanse/ vyvanse or have experience with these supplements?

I’d love to hear your thoughts, and I will post an update later on whether this help or not!

Sometimes I truly think my brain is done for. I have to read and re-read a sentence or data and even then it either isn't understood well by me or I easily forget it. Sometimes I easily forget words and people have told me I don't make sense.

I was diagnosed with ADHD as an adult.

I am currently unmedicated as my mental health is in a really bad place, so waiting to see a psychiatrist and the ADHD provider has said it is best to see what they say and then titrate me on ADHD meds again.

Even when I was medicated before, this issue was still prevalent but not as bad. It feels like my mind is jumbled.

I do also have depression, anxiety and fibromyalgia which all contribute to the brain fog and poor memory.

Sometimes I think that this can't be the brain that took me through university and finishing a degree.

I really worry that this will continue to get worse and affect my future-career, relationships etc.

I just wanted to ask if other people also suffer from this. Any tips (other than medication) on dealing with this.

I have combined type ADHD, diagnosed through right to choose last month.

The report is being finalised or going through quality control they say. When its recieved by me and gone to the doctors I will get an appointment about the medication options.

My question is, will they look at everything and tell you what they are going to put you on, or can you from the start request a specific medication?

From everything I have read i want the slow release Elvanse, I'd be too worried to try the instant release stuff and feel high

Hii everyone,

I’m struggling a little with the process of what to expect , what the timings/ how long between and each process was for everyone

Referred by my GP 15th october
Accepted referral 19th october
Sent the 4 Questionnaire’s by Medinet Minds also on the 19th October

i just want to know what everyone’s experiences have been like ? and what to expect after this stage?

Hi everyone!

After some long contemplation of my struggles, namely how much I've suffered after COVID-19 and in college - as well as passing comments (and insistent personal diagnosis) from friends and family with ADHD - I've finally took the first step in trying to get my diagnosis.

I've had my initial GP appointment and briefly spoke to my doctor about some symptoms I have been having and how it's affected me in the long run - my grades, my ability to study, the frustrating lack of concentration, you get the memo. After a bit of a talk he said he was happy to refer me, but I would have to look at this website to "choose what I'd have," to then go back to him so he could fill out "his part." I wouldn't consider myself exactly stupid, but, my GP is a bit infamous for not being too elaborative, so I'm not entirely sure what I'm meant to be picking nor do I understand the actual process of what I'm meant to be doing. This is the website he gave me which you all are likely familiar with: https://adhduk.co.uk/right-to-choose/right-to-choose-wait-times/

Whilst I have had a glance over myself, I'm still a bit lost on what to be choosing (and do I just tell the GP which one and that's it...? Am I meant to be filling something out?). Any kind of advice or personal experiences would be highly appreciated and/or beneficial for me as this is my first actual formal diagnosis with doctors, my other "diagnosis" have all been by a doctor but never anything solid. I won't be able to go private unfortunately as I do not have the capacity to financially support that, and I am on Universal Credit if that helps anything at all.

Thank you!

Good evening!

I’m currently on the NHS ADHD medication waitlist with MerseyCare, but they can’t/wont tell me the estimated wait time.

They don’t do private services, so I’m hoping to go private shared care with Clinical Partners/My GP practice.

If I remain on MerseyCare’s NHS waitlist and start at Clinical Partners, can I eventually switch to MerseyCare when they reach out to me?

Hello. I was diagnosed via Psyhciatry UK (via Right to Choose) about 4 years ago. After diagnosis, I was put on Elvanse, which didn't work for me.

I then had a bit of a breakdown and stopped engaging with Psychiatry UK. They then referred me back to my GP, but it was as I was moving house so everything got a bit muddled.

I now need to try meds again as I am not coping and unable to work full time. I went to my GP but she said that she can't prescribe ADHD meds. She says I need to go back to Psychiatry UK, but they are ignoring my emails! Any advice?

I took my first dose of Concerta 18 mg about 5 hours ago. I didn't expect to feel anything considering it's day 1 and the lowest dose. But I do feel kind of strange so thought I'd share and see what other's experiences were like.

- My brain feels different. I wouldn't say calmer, but more streamlined. I am able to hold a thought a bit longer. Feels strange.

- I am jittery.

- Most surprising: my blood pressure is lower than usually. Lowest I've seen it in years. I had to sort out my hypertension to get on ADHD meds so seeing it be so much lower than usually is quite a shock.

- I am starving. No appetite suppression so far (sadly).

What did you feel like when starting stimulants?

I actually can’t cope with the wait for titration any longer (I know it may not even work for me but it’s my only hope at this point). I find it actually cruel to have people who tbh at this age (in 40s) to actually get to the point of not being able to cope with the masking anymore and to ask for help and get a formal diagnosis (even though the world and his wife had self diagnosed me for years I was coping so thought what’s the point it won’t change anything). Fast forward and I’m no longer coping I got desperate so got assessed and diagnosed through rtc then to be waiting this many months with no end in sight for treatment is actual torture! I feel like my life’s on pause I’m miserable I know I’m horrible to be around but I just can’t focus on anything else.and you can’t tell anyone you’re struggling because then you can’t get treatment for the thing that’s causing you to struggle, and if one more doctor tries to shove more sertraline down my neck I will scream I was on it for years from being a teenager and constantly told gp it doesn’t work it makes me feel worse, got a bad leg oh you’re a woman probably anxiety here have sertraline etc etc. but that’s a rant for a different day. psychiatrist worded it well it doesn’t sound like anxiety it sounds like I’m just always full of nervous energy which I had been trying to say for years. Sorry for the long rant but needed to let it out somewhere!

I’m with CareADHD going through titration right now, been with them for almost a year, on meds since July. I’ve seen a few people posting about an email they got from CareADHD with the name change, and I know they’re going through the process of changing the number you can call them on, but I’ve heard nothing about a name change and didn’t get anything from them?? Please somebody clarify this for me, I feel like I’m in a twilight zone!

I can’t tell if this is a joke or prank, please be kind if I’m just being stupid and gullible 😭

I have been titrating Elvanse for 10 weeks, during this I did 2 weeks on 30mg, moved up to 40mg for a big chunk, and I’m now on 50mg.

I have noticed consistently throughout this that when I hit my luteal phase, the medication no longer works, and this also seeps into the first 3/4 days of my period, so quite a lot of days of the month are effected by this.

Anyway, I messaged my prescriber a few days ago, asking if a booster was an option, or an increase in medication for this period ( or even if dropping doses a bit would help if Elvanse is emphasising how I feel) because I’m finding that when im in this period, I’m a lot more emotionally disregulated. However Elvanse works amazing the rest of the month

She has come back and stated that this this is common, and there is nothing she can offer me in terms of medication, and this is where I’m feeling both frustrated and confused. I am aware of a good handful of people on boosters for their luteal phase and period, and have also upped their doses around then too. She has just suggested I essentially stop taking my dose at this time of the month, which doesn’t seem right?

Can someone please give me some insight? Thank you.

Edit- I’m with Psych UK.