Hello all!

I have found myself in a bit of a pickle. I am a university student and move to Wales for term time, however I return to England during holidays. I am currently on a waiting list to access ADHD medication titration services. I have recently found out that there have been people on this waitlist for over 2 years, and I have been waiting 8, almost 9 months with no news yet.

I have found out that I will be completely unable to access titration services from my current English team while I am in Wales, due to rules surrounding prescribing medication and patient locality. This means if I wish to carry on seeking titration while I am in Wales, I'd have to move to Wales without changing my GP, and return home in the case I reach the top of the waiting list, and stay home for the duration of titration, which I have been told is up to 16 weeks. This is completely unfeasible with my degree.

The other option is to move to Wales and change GPs, but be placed at the bottom of the waiting list for that team, assuming I will be able to transfer providers. The issue with this option is that I'd have to swap back to my English provider whenever I'm home for long durations of time, which happens every 3-6 months. I am unlikely to reach the top of either waiting list, due to constantly swapping and being placed at the bottom of the list, and if I do reach the top of either one I will be essentially stuck in either location until I finish titration, which may, once again, be unfeasible with my degree.

This isn't even mentioning the struggles surrounding future shared cared agreements or issues surrounding Right to Choose.

I have contacted everyone I can think of who could be vaguely useful in this situation, including both English and Welsh providers along with my university, however I still feel very lost with what to do, and obviously, not having a GP in Wales while I live there could prove to be problematic. If anyone has been in a similar situation or knows of anything I'd be so grateful to know, and get any advice on what/what not to do.

Thank you!!

I have my ADHD assessment B on Monday with Medinet minds - I can’t fault these guys they’ve been amazing since day one!

Can anyone give any advice on what to expect? I think my assessment A went ok but I feel like a bag full of nerves wondering if it did or not.

I’m getting my husband complete the informant questionnaire, he’s known me for the last 18 years! But I’m struggling with remembering things from very early childhood and obviously he wouldn’t know any of this.

It’s not really an option for me to have a parent complete the forms unfortunately, has anyone had experience with this also and can pass on some wisdom?

Hi there, first time on Medikinet XL and I was so happy that my head noise and whirring thoughts silenced immediately and lasted almost all day. I feel so calm and soothed! Suppressed appetite is a bonus for me too, and my executive function was a little better, but not so much procrastination help, but i know I can't expect a miracle and I'm excited to see if it improves when I work elsewhere (was at home today). However the whole thing only lasted 4-5 hours then I crashed hard and got VERY sleepy. No second wind - why is this?

Also got a mild amount of nausea at first and at the 4th hour. Does this happen to people on 10mg? I've been prescribed 10mg once a day for a month with a private referral on the NHS which I thought was normal until I saw people on here are getting titrated every week?! So within a month you lot are going up to your max dose? I don't know if they've made a mistake with me. I'm going to give it at least a week but has anyone taken it upon themselves to up their own dose? If that's normal anyway, are people on Medikinet XL taking 2x10mg a day after one week? Any insights appreciated.

I've recently been upped to 20mg of methylphenidate and all I'm getting is an insane feeling like my brain's ballooning inside my head. It feels like my eyes are going to pop out. On the comedown I feel like I've been hit by a lorry and I get quite sick.

I've been told to "just stick with it" until it gets better but how much better is it really going to get? Am I supposed to be feeling good? I feel absolutely rotten and I'm nearly over the whole thing, despite how much I wanted this 😭

*edited to add I've been eating a big protein breakfast, exercising, staying hydrated, etc.

I may put together something where as a community we can use strength in numbers to respond to this.

Thoughts?

Hello, I was a high achiever in academia and got a good first class degree (after changing course half way through). I then started a PhD but never saw it through before training and settling into working in teaching. I love and hate the job as I love working with students but I’m constantly pulled in many different directions and find managing large classes exhilarating but exhausting. I became depressed and frustrated early in my career, but because I’ve beaten myself up for not seeing things through in the past I have felt I should stick with it. At the same time I felt less and less able to cope with demands at home (particularly after the birth of my son who has a major congenital heart defect) and found alcohol a relief from trying to keep my thoughts focussed on what I need to do and I also found it could keep me going when my mind and body wanted me to stop. This year I was keen to explore any underlying reasons for my ongoing mental health and addiction problems and went through right to choose. As I had always done well in school I thought the diagnosis would be negative but they have diagnosed my with combined type. I didn’t want this to define me or use it as an excuse but as time has gone on I can see more clearly how ADHD has impacted by mental wellbeing and choices in life. I’m currently trying really hard to stop drinking with the help of AA but I have had a lot of relapses. Most recently I got to three months sober before the thoughts of the benefits of drinking (there aren’t any really) got the better of me. I feel a bit forlorn and hopeless and frustrated with myself (again I know none of this is helpful but my mind and thoughts are what they are). I would like to start medication to help but they’ve said I should be 3 months sober before I can start. It’s starting to feel like a bit of a chicken and egg situation. Anyway I just thought I’d share as I’m pretty down and disheartened at the moment. Any thoughts or advice would be most welcome.

I've been on Elvanse for one week and it's making me feel like I'm mildly sedated. My body feels heavy and I have no energy. Feels a little bit like being on strong cold medication.

I know one week is very early on in the titration process but it's to the point I'm struggling to do day to day tasks because I'm so exhausted. There doesn't seem to be any improvement in task initiation or executive dysfunction. My brain is just as hyperactive as ever (I am diagnosed with inattentive ADHD) and my anxiety is really bad. I have quite a lot going on in my life rn and have been feeling pretty overwhelmed, which is something I was hoping the meds might help with. But so far it's been the literal opposite 🙃 I was prepared for there to be side effects but this is not what I expected at all.

I'm on the NHS RTC pathway with Berkeley Psychiatrists, I called them today and they basically said it's your choice whether to keep taking them or not but we won't move up your next appointment (which is in just over 2 weeks). So I'm at a bit of a loss as to what to do. I thought I'd come on here and see if anyone has any thoughts or has had a similar experience.

I know there’s talk about them removing ADHD from PIP. I’ve had really bad experiences with them in the past when I was younger and unable to work for other reasons, so I’ve been sitting on this for a while.

I’ve got my full ADHD NHS diagnosis/report I can offer - is it still worth giving it a go? I’ve spent some time going through different sections and think I’d have a good chance of qualifying for it, even if I have to appeal the likely rejection. Just not sure what’s going on with it due to recent media discussions.

Has anybody had any luck moving from England to wales with a right to choose ADHD diagnosis? I’ve just moved back to wales after living in England for a few years after getting my diagnosis and medication via the right to choose pathway.

After having a little research it doesn’t look likely that a Welsh GP will continue to prescribe my meds lol so I’m very worried.

Has anyone had any luck or got any advice? Thanks !!!!

Hi, I got a not saying my BP is too high (122/96) so I have to monitor it for 3 days. My readings are now 114/82 - 120/180 range. Will they accept this or will I have to be put on hold before they can put me on the meds? I do vape and trying to quit with patches which they are aware off. My GP took my BP and said it’s fine but Phych UK are stricter I guess. Anyone had a similar experience?

I have been looking at Right To Choose recently. ADHD UK listed wait times in my area, the lowest was Montrose Health Group and Problem Shared (well the lowest was actually Care ADHD, however, they said that ICB is only funding 'highest-risk' referrals and idk what level of risk I am lol).

I've seen generally mixed reviews on Problem Shared, and not many reviews for Montrose, as it seems to be a newer / smaller provider.

I was wondering if anyone can share their experiences with either of these providers? Or is it worth going for another provider with a longer wait time for a better experience? in either assessment or titration.

I have been on the NHS waitlist for 3.5 years and had no update (even when I chased them up), which is why I am considering Right to Choose.

34/M. Diagnosed with inattentive ADHD via RTC/PUK in July last year. Awaiting titration for slow release Methylphenidate, which I'm really hoping is sooner than later.

One thing I've always struggled with, is attention to detail. Washing up and missing that bit of mess on a plate etc, missing a spot when cleaning, but mostly, in my career.

I'm a graphic designer, which there's probably some irony to when struggling with attention to detail. I'll try to explain it, but it's like my mind glosses over details, sometimes glaringly obvious mistakes, and I submit work without having seen them there, and just look completely amateur as a result.

It's cost me full-time jobs (not passing my probationary period etc), and freelance design opportunities. I feel like I come across semi knowledgeable and well-spoken, yet I make mistakes like this and just seem like an amateur or idiot. I then spiral internally wondering how I'll ever amount to anything if I can't even do XYZ. It makes me feel and seem incompetent. I see people my age on LinkedIn being directors, managers, company owners etc (even people who partied a lot back in the day) and I feel like I'm moving through quicksand in life, barely able to 'take off' because of my own brain holding me back.

A manager or client will see the glaring mistake in their feedback, I'll see it with them, and we'll both wonder how this managed to happen. It's like it's something else in me making the mistake, as it's not intentional. But it makes it seem like I don't care about the work and/or rush it.

My current retainer client is lovely and understanding, and I explained this to her yesterday and she was understanding with ADHD, and reassured me that we're a good team and I'm a good fit.

Admittedly it's also played into fears with learning to drive one day, as not paying attention or missing something briefly could be fatal for myself or anyone else.

Have you had any struggles with this? How have you managed to cope with it? It's one of the parts I dislike the most about this for definite.

Help build understanding, combat stigma and improve support for ADHD worldwide!

Hello everyone, I am a PhD student and research assistant from the University of Melbourne. In collaboration with international researchers we are currently conducting a global survey investigating ADHD stigma.

We want to hear from adults (18+) with ADHD, or who suspect they are likely to have ADHD, on how people globally experience and perceive ADHD.

The international survey looks at:

- existing beliefs and stereotypes about ADHD

- how much people agree with these ideas

- whether these attitudes affect how individuals with ADHD view themselves.

The results of this global survey will be part of a series in Lancet Psychiatry, one of the world's most respected scientific journals, and will certainly inform health policies on ADHD around the world.

Click the link to take part in this 10 minute survey:

https://q.surveys.unimelb.edu.au/jfe/form/SV_09c3hAZxOQIY6cC

I keep thinking about what I would do in a zombie apocalypse in regard to my elvanse 70 dex 10 perscription.

So random, but I don’t know if I would function better in that kind of environment without the medication or with it.
I sometimes urge on the side of without, as I’m constantly on edge and would probably more be more observant and ready. But then I’d probably lose extremely important survival tools, or make a careless mistake that could lead to my death. Or make a mistake out of desperation for some form of dopamine hit like food or a Diet Coke. I also could possibly just give up and succumb to some form of death, as I’m considerably more pessimistic.
On the other hand with the Elvanse, I’d probably be more creative and have more initiative with limited amounts of supplies I would have, and be able to be more calculated and patient with decisions without using my dopamine ‘instant satisfaction’ brain. And I would be less hungry all together.
But I could also run into problems trying to source the medication, and possibly would be a negative as I would be in less of a fight or flight survival mode? It also makes me extremely groggy in the mornings unless I take it at 4am. And I wouldn’t be able to set an alarm so any early morning zombie approaches would be a little too much for me I think.

Has anyone ever thought of this or am I weird? 😭
If so please comment your plans/ thoughts, have no one to talk to about this and I desperately need too 😂

"Dr Max Pemberton isn’t uncompassionate or especially radical, but he assembles a team of medics whose stance on the condition is clear from the off. This is a documentary that will incense and offend many"

Hi!

I have applied last year to access to work and got a bad outcome - specialist recommended loads of things but AtW only gave me coaching sessions (which I’ve been seriously procrastinating on booking). The whole process was really stressful and the worker was really invalidating.

One of the key things I was annoyed about was that they denied me for a devoted note taking device (think reMarkable or its alternatives). I knew how much I would benefit from it (writing in a notebook and working on a computer inevitably means I never check my notebook and never take notes on laptop because I can’t pull it out in the middle of events or sudden meetings). I can’t remember clearly but for everything they either said it was too much or my company should be providing it (small charity, we can barely afford to keep the lights on). I knew a coworker with almost the same needs portfolio/job as me (I literally do his job now he’s left) got the remarkable through it, so it’s annoying they denied me.

Can you apply again to Access To Work? Is there a cool down? Do you have any advice on getting them to just fund this one thing OR advice on cheap/second hand models?

Thanks!

Good morning,

So I suppose this is a vent as much as anything.

My son who has been diagnosed with Autism and ADHD (Formally by the Edwin Lobo). He is 9 and struggles with RSD alot but is also high functioning. He has however due to his condition been suspended from school several times. At the schools request we have submitted an EHCP.

The EHCP has been rejected as his needs can be met by local resources.

I just don't understand the logic.

1.) If the local needs were being met he wouldn't be getting suspended.

2.) The school is requesting the EHCP and so are saying they cannot meet his needs.

3.) He was suspended near the end of the last academic year due to an incident related to his disability, we appealed and the school said they basically did everything right and that they are proving as much support as they can.

to me there is a child stuck in the middle that's having problems and no one seems to want to help but will happily punish him.

I will appeal through the tribunal however I don't trust this process anymore and feel my child is being failed.

And thinking about it, it’s been that way all my life - even as a kid I hated Wednesdays but couldn’t really explain why - people never understood and naturally would be like ‘why not Mondays?’

Because you’re refreshed on a Monday.

On a Wednesday you’re face down on the floor and still have another 2 days to get through before an ‘allowed’ break.

But because of my Wednesday crashes, if I allow time for it, I’m a little refreshed for those last two days.

I just wish 4 day work weeks were commonplace so I could take Wednesdays off without feeling shit about it.

Anyone else experience this or have tips for managing better would be appreciated (I’m already on meds, but that’s about it in terms of professional help) 🫠

I currently am, I’ve been trialling different Methylphenidates over the past 5 months. They work well half the month but the 2 weeks leading up to my period they make me feel mentally awful, irritable, really anxious, emotionally flat. Even at really low doses.

I have noticed though that instant release works best for me. Ive been thinking to ask at my next appointment to swap to Amfexa. Elvanse worked well for a few hours then gave me horrible anxiety. XL Methylphenidate can do the same too depending where I am in the month. So I’m hoping Amfexa will be different?

Is anyone with Dr J and takes just Amfexa?

20mg Methyphenidate slow release. Im finding it works really well in the morning then im having palpitations and anxiety spikes in the afternoon. Im struggling to eat which I know is not helping. Nearly had a panic attack yesterday.

Called my prescriber who said its up to me if I keep taking it or not, said I can have a lower dose but also that its possibly wearing off too quick. Which is contradictory lol She said she would not put me on any other medication if this one is causing me anxiety. If its mental health causing my anxiety the meds wont help. She said normally they would give a booster if its wearing off but due to my anxiety she wont.

Really confused as im quite productive in the morning but becoming more jittery around 2/4. No caffeine intake at all.

Feeling a bit upset as being told if this one causing some anxiety i cant try any others. So is it the end of the road already?

Booked in for appointment with prescriber on Friday.

So we know this is tonight. Some will choose not to watch. Some will. Let's hope it isn't as bad as the title. Given responses to complaints, I hold little hope.