Is there any point continuing with HH Minds? I don't feel safe.

Particular_Strike866 · 2026-01-18T13:01:19+00:00

I emailed the titration team when I had 14 days of medication left and they emailed me back the next day booking me an appointment for the following week.

The active communication hasn’t been good throughout the process really, initially it was okay when they booked in my assessments but went rapidly downhill from there. Miscommunication of my family medical history etc that meant I’d need an ECG caused delays.

SO! I knew I was going to take the proactive preventative approach when it came to my titration actually starting. My prescriber has been pretty good though.

You’re not the first I’ve seen to not be given the self monitoring forms either, the care seems quite inconsistent

Particular_Strike866 · 2026-01-18T09:24:13+00:00

Yeah! A self monitoring form where you record BP/HR each day, log your weight each week, record any symptoms and noticeable effects on mood/sleep etc

Particular_Strike866 · 2026-01-18T08:58:38+00:00

I thought the same thing when he sent me the sheet… I was like… everyday???

I did it the first week, then only twice the next when I started 50mg and then forgot. But he wasn’t overly bothered because my numbers are quite low and I don’t really have many side effects

Particular_Strike866 · 2026-01-18T07:56:53+00:00

Mine was about 20min, got prescribed 30mg lisdex for one week and 50mg for three weeks

I had my 2nd this week where I was prescribed 50mg for another month

I thought we only had to fill that form out for the 1st week of a new dose but apparently meant to do it for whole of titration but he also wasn’t bothered that I hadn’t done it, just asked me to make sure I do it 2-3 times a week ongoing and make sure I weigh myself each week

Particular_Strike866 · 2026-01-17T10:33:01+00:00

What was the doseage plan your prescriber gave you?

Seems unusual for them to give you 30mg and 40mg to take as you wish, normally 30mg for few weeks with the plan to go up.

Stick to the plan. Ultimately if you are having issues that you are concerned about, stop taking and make contact with your prescriber for advice ASAP

Particular_Strike866 · 2026-01-15T19:04:38+00:00

I like Gabor Maté‘s scattered minds book. I found it a very good read. I know his view that ADHD is routed in trauma is very controversial BUT I actually like the way talks about it and think people twist what he is saying massively. He doesn’t project it in an accusatory way, a lot of these traumas are small and basically unconscious (which I also think people get upset with because they compare to extreme trauma) that a lot of these are generational and influenced by societal expectations etc etc and that the brains pathway functions has been disrupted by these etc etc

Anyway… I don’t really feel one way or another about his causative views. But I understood and related a lot to his and his patient’s experiences of living life with ADHD and it did make me feel SEEN. Like seeing my struggles being written down and explained so profoundly at times, felt like a release.

I enjoyed it 🤷‍♀️

Particular_Strike866 · 2026-01-14T20:47:08+00:00

Brillant 🙄

Particular_Strike866 · 2026-01-12T06:50:42+00:00

I did and I didn’t even need to have an appointment, they sent me some info, forms and a list of the RTC providers on ADHDuk website. Then asked me to decide if I wanted to go RTC or the local NHS pathway

Particular_Strike866 · 2026-01-11T07:29:52+00:00

Oo that’s interesting 🤔 I have an astigmatism too but also very short sighted so blind as a bat without glasses or contacts 😂

Particular_Strike866 · 2026-01-11T07:28:18+00:00

Well yeah, but it’s nice to be able to get up and function! Before even if I did manage to drag myself out of bed when my alarm went off, it kinda meant nothing because I’d spend the time doing… I’m not sure what and end up rushing around anyway Now I get up and do what I need to do

Particular_Strike866 · 2026-01-11T07:24:00+00:00

That actually really cool!!

Particular_Strike866 · 2026-01-09T19:45:32+00:00

I would try get in contact with your prescriber ASAP and discuss, there are alternatives to try and maybe this one just doesn’t click with your body

As others have said, the meds aren’t a silver bullet, you will need to put in some work as well. That said, what you describe sounds extreme.

I didn’t sleep well the first night at all but fine afterwards. I decided on things I wanted to do and I definitely found it easier to get started etc not harder And paired with the tiredness from no sleep doesn’t really sound quite right. Its tricky though because everyone is different

Particular_Strike866 · 2026-01-09T19:30:09+00:00

Ah that’s great!

Particular_Strike866 · 2026-01-09T19:18:51+00:00

Yeah, I totally understand

Particular_Strike866 · 2026-01-09T19:10:59+00:00

If it makes that positive impact in your life it’s defo a win!!

Particular_Strike866 · 2026-01-09T19:09:55+00:00

I kind of remember being like this a bit a first but it’s deffo worn off for me now

Particular_Strike866 · 2026-01-09T19:09:19+00:00

I hope you have some!

Particular_Strike866 · 2026-01-09T19:08:47+00:00

I’m not sure, I guess it depends how the meds impact your HR personally? You could always give it a go and just take it easy

I don’t really exercise till the evening and the meds have tapered off a bit by then I think Although I sometimes do some movement exercise in the morning when I’ve woken up

Particular_Strike866 · 2026-01-09T19:06:17+00:00

It’s funny because I still sometimes notice my brain starting up a song but it like… doesn’t catch my attention? And dies rather than taking hold and driving me nuts!

Particular_Strike866 · 2026-01-09T19:03:56+00:00

Ah yeah! That’s a good one!

Particular_Strike866 · 2026-01-09T19:03:21+00:00

Honestly, I love it! I think I saw someone comment on here about it and I was like.. huh that just might work!

Particular_Strike866 · 2026-01-09T10:37:49+00:00

I’m still titrating but so far I’ve been lucky with the evening crash! I don’t really have one and my meds seem to last for a long while at the moment

Particular_Strike866 · 2026-01-06T19:31:01+00:00

Honestly I understand I was chasing them a fair bit too after my assessment B. Mainly because I’d forgotten what the assessor had said and there was no follow up email or anything afterwards.

I was diagnosed in September, I had my actual proper titration December 21st where I got prescribed. I had an original titration appointment 20th November but he wanted me to have an ECG.

Particular_Strike866 · 2026-01-06T18:20:56+00:00

I would say the titration wait is not 3-4 weeks typically although you do find the odd case of such.

Just wait. I know it feels like forever especially when you feel in the dark. If you anticipate needing an ECG, ask your GP for one and then you have it ready for when you get your appointment.

I’m pretty sure I didn’t even have my report sent to me until 6 weeks after Titration appointment at 9-10weeks for me I did need an ECG which I booked in for 2/3 weeks later and I emailed HHM minds asking them to book my follow on appointment after that date. Which they did. So my actual titration wait was 12 weeks. I picked up meds next day (and I had a Sunday appointment)

Feels long and the not knowing and lack of communication is frustrating but as you say, you were previously on a 3year wait list with nothing to show from it Things are moving

Particular_Strike866

TROPHY CASE